Delivering race equality in mental

health care: report on the findings

and outcomes of the community
engagement programme 2005-2008
Jane Fountain and Joanna Hicks

FULL REPORT 2010

International School for Communities, Rights and Inclusion (ISCRI)

University of Central Lancashire
 contents
Contents

Section 1 Section 5
Foreword and Introduction 2 Project outcomes 98
5.1 Outcomes for Black and minority
Section 2 ethnic individuals 98
Executive Summary 8 5.2 Outcomes for Black and minority ethnic
community organisations 101
Section 3
5.3 Outcomes for Black and minority ethnic
Background, method and sample 14
communities: results from a survey of
3.1 Delivering race equality in mental health care:
community development workers 106
background and context 14
3.2 The ISCRI Community Engagement Model 16 Section 6
3.3 The NIMHE Community Engagement Project 19 Recommendations from community organisations 116
3.4 Methods used to compile this report 28
References 126
3.5 Sample characteristics 29
Appendices 129
Section 4
1. Participating community organisations in each
Key themes and findings 33
strategic health authority area 129
4.1 Fear of mental health services 33
2. Extract from the information pack sent to
4.2 Effective therapies and interventions 37
community organisations 131
4.3 Culturally appropriate treatment
3. Criteria for shortlisting community
and interventions 46
organisations’ applications 133
4.3.1 Language 48
4. Contact details of the community organisations
4.3.2 Faith and religion 56 that participated in this project 134
4.3.3 Food 60 5. Questionnaire for community development
4.3.4 Gender 61 workers 144
4.3.5 Ethnicity of mental health service staff 70 6. Key of commentaries 147
4.3.6 Racism in mental health services 74
4.4 The journey towards recovery 78
4.5 Service user and carer satisfaction with
mental health services 79
4.6 A more active role for Black and minority
ethnic communities and service users 88
4.7 Older people 91
4.8 The Count me in census 94

For further information on any aspect of this report, contact

jfountain1@uclan.ac.uk or iscrioffice@uclan.ac.uk
For the contact details of the community organisations that participated
in this project, see appendix 4.

DRE Community Engagement Study Contents 1

 < Back to contents

section 1
Foreword

Professor Lord Patel of Bradford OBE
Head of International School for Communities,
Rights and Inclusion
It is a real and very personal pleasure for me to welcome this
report, documenting the process, findings and outcomes from
the National Institute for Mental Health England (NIMHE)
Community Engagement Project, commissioned and
conducted as part of the wider Delivering Race Equality
[DRE] in Mental Health Care Programme. The accumulated
findings of the studies make it crystal clear that services will
not change without the active involvement of communities.
As part of all the work that I have undertaken over the course
of my career, the real value and importance of communities,
including service users and carers from across the full range of
communities, has been paramount. I know firsthand just how
big a difference they can make and how essential it is that we
work fully with local communities and the voluntary sector in
partnership with real and effective engagement.
To deliver this, leadership from the top was required.
The NIMHE Community Engagement Programme provided
such leadership and it is important to recognise that and
to celebrate what it achieved. This report highlights how
far we have come in a relatively short time. But as we
read it we can see that there is still a long road to travel –
despite the undoubted merits of the DRE programme,
there is still a lot more to do and one of the main areas is in
community engagement.
So this report represents an opportunity for us to take stock,
to reflect and learn from its lessons as we continue the journey
to reach the new horizons ahead. And, finally, to pay tribute to
the efforts and achievements of those, both within communities
and within mental health services, who made possible the
exciting and innovative work it describes.

Reading this report took me back to the early days when Professor Lord Patel of Bradford OBE
colleagues and I were first devising the DRE strategy and January 2010
implementation programme, with its three ‘building blocks’
of: better quality information, more intelligently used;
appropriate, sensitive and responsive services; and increased
community engagement.

The three building blocks were and are conceived as essentially

interdependent. But for me community engagement was
always ‘first among equals’, providing the community
intelligence and trust in services needed both to make
information more comprehensive and robust, and services
more aware of and capable of responding to community needs.
This includes responding to the stigma and fear among
communities about mental health which is one of the biggest
barriers we face and which the community sector is best placed
to address.

It is vital we effectively engage the community and local

voluntary sector if we are ever to make the kind of advances in
mental health care and awareness that are needed. When we
began the DRE programme we found that many within mental
health services already understood this in principle. This did
not however always translate into a process whereby services
really listened to communities, with the humility needed
if services are to work on a true partnership basis with,
and learn from the community sector; and/or provided the
financial investment needed for communities to articulate their
needs and engage with commissioners and providers on a
sustainable basis.

DRE Community Engagement Study Foreword 2

 < Back to contents

section 1
Introduction

Melba Wilson The report locates this work in the context of current mental
National Director, DRE health policy, practice and service provision, and includes
National Programme Lead, Mental Health Equalities, commentaries from a number of mental health experts.
National Mental Health Development Unit (NMHDU) The report’s authors – Jane Fountain and Joanna Hicks – have
The community engagement strand of the DRE action plan is done an excellent job in capturing what is, in effect, a hugely
a significant aspect of the work of DRE. As one of the three rich discourse which characterises the wide variation of how
building blocks of the action plan and programme which communities of diversity and communities of interest engage
developed to implement it, the work on community engagement with and are engaged by services.
is a good barometer to gauge – at a grassroots level – the extent
It contains a number of key messages relevant to the DRE
to which people from Black and minority ethnic (BME)
characteristics. These highlight ways of working to help
communities feel engaged; feel that their views are taken on
ensure less fear of services, access to a balanced range of
board by commissioners and providers of services; and feel
therapies; development of more culturally appropriate
that there is real improvement in how they access and
treatments and interventions, delivered by a workforce and
experience mental health services.
organisation capable of delivering appropriate and responsive
The impetus and rationale for the community engagement services; more self reports of recovery amongst Black and
strand is clear in the DRE action plan. It identified that: minority ethnic service users; information about what is
“Any initiative aimed at improving the healthcare experience needed to help ensure increased satisfaction with services; and
of Black and minority ethnic groups must recognize the leading information about how Black and minority ethnic communities
role that Black and minority ethnic communities themselves can have a more active role in training professionals.
can play. All communities have a role in preventing mental
The community engagement projects were intended to run
health problems and providing an environment where people
over a period of two years, as set out in the DRE action plan.
who have become ill can recover and prosper”.
The report documents the phased approach of the work,
The DRE action plan also stated that: “Black and minority including a pilot programme which began in 2005.
ethnic communities often have to go further, filling the gaps
Jane Fountain and Joanna Hicks describe the very useful
between their needs and NHS mental health service provision”,
model developed by the International School for
[and that] “though sometimes under-resourced and poorly
Communities, Rights and Inclusion (ISCRI), based at the
integrated into the wider mental health economy, the Black
University of Central Lancashire. This set the framework
and minority ethnic independent sector has continued to
whereby participating community groups received
develop innovative services, and has higher patient satisfaction
coordinated facilitation, support, resourcing and training to
ratings than statutory services”.
undertake the work. This was key in helping to establish
The idea of supporting a proactive community engagement and maintain clarity about the task at hand – namely to help
segment was to acknowledge this reality, and to further support ensure that the learning, knowledge and resilience represented
learning across both sectors by integrating the experience, within communities could be effectively channelled to
values, approaches and knowledge of the non-statutory sector influence service delivery.
into the whole system, in order to promote development inside
In commissioning this report on the work of the projects,
and outside the mental health system.
the DRE programme was concerned to ensure that as well
The DRE action plan included provision for investing in a as documenting the work of the projects, it was equally
national scheme of approximately 80 community engagement important to ensure clear learning for the longer term.
projects run by non-statutory organisations across England. This was approached in terms of impact and sustainability
This was as part of a concentrated effort to build capacity in at three levels:
the non-statutory sector, develop partnerships and to offer new
• Personal/individual
and innovative services that meet needs.
• Community
This report presents an analysis of the quantitative and • Strategic and commissioning.
qualitative data from 79 studies which resulted from the
work of the 75 participating community organisations.
It provides a comprehensive overview of the issues that were
explored by the studies in relation to Black and minority ethnic
populations and mental wellbeing, mental health problems,
mental health services and the vision of service characteristics
for 2010 set out in DRE. The report also documents some of
the project’s outcomes for individuals, communities and
mental health service development.

DRE Community Engagement Study Introduction 3


Introduction
Personal/individual
At a personal and individual level, the report identifies that
547 community researchers were trained as a result of their
participation in the project; and that 321 of these were awarded
university certificates. Many of the researchers have reported
“extremely positive outcomes” in terms of new skills and
knowledge about mental health and mental health services;
and some have gone on to obtain employment in the mental
health field. This feels like a good result.
Community
At a community level, as noted earlier, 75 community
organisations participated and recorded positive outcomes
from the project for the organisation. These included raising
their profiles amongst local and regional mental health
services, and amongst local black and minority ethnic
populations; better links and partnerships; and obtaining
additional funding to conduct further work.
The report also captures the other aspect of the DRE
community engagement strand – community development
workers (CDWs) and includes their views about the level of
their engagement with the work.
140 CDWs (33% of these who were asked to take part)
responded. Almost half (63) of the respondents were aware
that the community engagement project had taken place
(13 were unsure) and 42 of them said they had been involved
in working with the project in some capacity.
Of 72 CDWs, 40% (29) had observed improvements in
mental health services for black and minority ethnic
communities, that had occurred as a result of the project.
Amongst the benefits identified were highlighting community
needs, promoting better access, identifying the need for new
services, creating a team of community researchers, and
creating better links between community groups and providers
and commissioners.
The views of the CDWs also suggested, however, that despite
the positive outcomes, there is still some way to go in raising
awareness, influencing services and in strengthening links to
build upon the work of the projects and the work of CDWs.
DRE Community Engagement Study Introduction
section 1
Strategic and commissioning
In relation to the projects’ impact on strategic commissioning,
the authors note that “the majority of the studies recommended
vastly increased black and minority ethnic community members’
and service users’ involvement in the planning, commissioning
and delivery of mental health services”. This could include
establishing regional community engagement networks;
embedding recommendations into local commissioning plans;
and changing existing contractual arrangements to better reflect
a need to commission services from the non-statutory sector.
A key conclusion overall of the reports, and one which should
not be lost in any future work to build on the findings of the
report, through the New Horizons mental health strategy and
elsewhere, is the view which emerges that ‘what works’ for
one Black and minority ethnic population may be
inappropriate for another.
Finally, it is important to acknowledge the commentaries
which are featured in the report. In this regard I’d like to
highlight three which I think are particularly pertinent –
Christina Marriott, who addresses the issue of the changing
demographics in the context of the Count me in census;
Marcel Vige of Mind, who asks key questions in relation to
the long term impact of the legacy of the DRE programme and
community engagement in particular; and Manjeet Singh,
a former race equality lead in the North West, who flags her
hope for the long term legacy.
Christina Marriott identifies “two highly pertinent contexts”
which have changed over the period during which the work
of the community engagement projects took place – firstly,
changes in inpatient mental health services and secondly
changes in the population of England between 2005-2008.
In the former she reflects on two of the DRE characteristics to
reduce disproportionate rates of admission and detention of
Black and minority ethnic people, based on the Count me in
census findings, and the changes in relation to numbers of
formal and informal patients, and notes that “as different
ethnic groups have significantly different rates of admission
and of detention, these changes to inpatient services may have
differential impacts on the different ethnic groups…[and that
as a consequence] any consideration of the changes during
DRE will therefore need to consider the impact of the changes
in the overall inpatient service”.
4
 section 1
Introduction

In relation to population changes, Marriott underscores the

impact of the rapid migration of Polish born people in the
UK, which, she notes, has changed the age profile as well as
numbers of people in this community. She adds that it has
included a more dispersed residency in the UK than previous
migrations, and appears relatively fluid and dependent on the
availability of work. She identifies that these demographic
changes will need to be better understood as mental health
policy and practice develop.

Marcel Vige reflects that the “real dilemma for DRE has
been the need to negotiate the divergent beliefs, views, even
political priorities about the nature of its subject matter”.
“Where does the catchall phrase BME begin and end?”, he
asks. Is ethnic disparity an aberration arising from inadequacies
within mental health or an inevitable function of wider
differentials? And to what extent can the ideal of cultural
competency in therapeutic approaches be achieved, whilst
adhering to clinical versions of ‘normality’, and the perceived
need for threat management?

He continues that, “whilst the very essence of what DRE is

about is in a state of flux, somehow the strategy has had to
progress with its change agenda – akin to navigating a journey
upon shifting sand”. He concludes that, “DRE has laid down a
foundation both in terms of community-based engagement
projects and increased capacity of local service developers
and providers, to make provision culturally competent”.
The task going forward, he says, “will be to incorporate
such approaches into strategies such as New Horizons, World
Class Commissioning, professional training and development”.

Finally, Manjeet Singh describes her involvement with the

work of community engagement projects in the North West,
and her long term hopes for the work to grow and develop. “To
realise the vision and deliver race equality”, she says, “requires
ongoing attention, capacity and partnerships. The process has
really underlined the significance of the building blocks within
DRE: better information, informed by community engagement,
leading to the development of appropriate and responsive
services”.

She concludes:
“I am very hopeful that, in time, working in collaboration will
result in equality of access, equality of experience and equality
of outcomes for the BME communities we serve”.

As we approach the formal end of the DRE programme this

month, I would only add that it is a hope we all share and will
continue to work towards as we strive to make services more
responsive to the needs of England’s diverse communities.

Melba Wilson
January 2010

DRE Community Engagement Study Introduction 5


Introduction
The Authors
Jane Fountain and Joanna Hicks
ISCRI
University of Central Lancashire (UCLan)
Jane Fountain is a Professor of Substance Use Research and
has been working in the drug research field since 1988. She is
a research consultant for several international organisations,
her work has been widely published in academic journals,
and she has edited several books. Jane’s work uses mainly
qualitative research methods, particularly among so-called
‘hidden’ or ‘hard-to-reach’ populations, and focuses on
addressing health-related issues among a wide variety of Black
and minority ethnic communities in the UK and internationally.
Joanna Hicks has extensive experience in leading projects
that engage Black and minority ethnic communities. She has a
strong commitment to equalities and social inclusion and has
played a key role in developing and delivering over 30
Community Engagement projects since joining UCLan in
2005. Mental health and substance use issues are her main
areas of work. Joanna holds a wide range of qualifications,
including a Postgraduate Certificate in Promoting Equality and
Managing Diversity.
This report also includes commentaries and
contributions from:
Jonathan Bashford (ISCRI)
Jez Buffin (ISCRI)
Bill Fulford (ISCRI)
Malcolm King (NMHDU)
Robert Little (ISCRI)
Christina Marriott (ISCRI)
David Morris (ISCRI)
Mary Nettle (European Network of (ex) Users and Survivors
of Psychiatry)
Kamlesh Patel (ISCRI)
Ajit Shah (ISCRI)
Manjeet Singh (NHS North West)
Marcel Vige (Mind)
Melba Wilson (NMHDU)
DRE Community Engagement Study Introduction
section 1
Acknowledgements
This report could not have been written without the
considerable efforts made by 75 community organisations and
547 community researchers to collect the data for the studies
reported on here. They and the 6,018 study participants are
gratefully thanked for their work. The project would not have
been possible without them, nor without the funding for the
project from the NIMHE.
Around 400 people were members of steering groups that
supported each of the community organisations and they too
are thanked for their contribution to the project. Regional Race
Equality Leads (RELs) played a key role in steering groups
and their expertise, knowledge and contacts, within and
beyond steering group meetings, were invaluable.
We are also grateful for the support we received during work
on this report from staff at the National Mental Health
Development Unit – Melba Wilson (National Director DRE,
National Programme Lead Mental Health Equalities),
Tony Jameson-Allen, Olivia Nuamah, Shahana Ramsden
and Christine Savage.
Thanks are also due to the Black and minority ethnic Mental
Health Community Development Workers (CDWs) who
contributed to the project. Some played a very active role
in leading on the studies while others joined steering
groups and/or offered guidance to the community
organisations, and subsequently worked to implement the
studies’ recommendations. Thank you too to the 140 CDWs
who took the time to complete a survey on the outcomes
of the project.
We are grateful to the members of community organisations
who gave us their thoughts and experiences on the process and
outcomes of the project: Razaw Fatah, Marjorie Francis,
Avrind Joshi, Ajaib Khan, Lorna Markland, Vlademiro Rocas
and Siobhan Spencer.
We very much appreciate the community engagement support
workers from ISCRI, who played a key role in supporting the
community organisations’ studies. We also thank the ISCRI
administration team for supporting this project throughout,
and the teaching and learning team for their work in delivering
workshops and training sessions to community organisations
in many locations across England. Special thanks are due to
the following ISCRI staff for their assistance with this report:
Jez Buffin for his support and comments on earlier drafts
of this report, David Howard, Eileen Jackson and Laura
Salisbury for their administrative help, and Ajit Shah
for summarising the results of the Count me in censuses.
Thank you too to Clare Collins for proofreading the report.
Jane Fountain and Joanna Hicks
January 2010
6

Introduction
Note on the terms used in this report
Black and minority ethnic
The authors are very conscious that various terms are used to
refer to the many diverse communities in the UK. We have
used ‘Black and minority ethnic communities/populations’.
This reflects that our concern is not only with those for
whom ‘Black’ is a political term, denoting those who identify
around a basis of skin colour distinction or who may face
discrimination because of this or their culture: ‘Black and
minority ethnic’ also acknowledges the diversity that exists
within these communities, and includes a wider range of
those who may not consider their identity to be ‘Black’, but
who nevertheless constitute a distinct ethnic group, such as
White Irish people.
Mental health problems
Most of the community organisations’ studies referred to in
this report asked the study participants about their mental
health. However, they enquired in a variety of ways: some
collected data on diagnosed severe mental health conditions
such as schizophrenia and psychosis; some simply asked if
study participants were mental health service users; some
asked for self-diagnoses of, for instance, depression or anxiety;
while others asked participants if they had any difficulties
maintaining their emotional or mental wellbeing. This report
uses the term ‘mental health problems’ as shorthand to cover
all of these, unless presenting data on study participants with
specific mental health illnesses.
Mental health services
Although this report contains data on specific mental health
services, where the term ‘mental health services’ is used,
it encompasses one or more of the whole range of treatment,
care and support services. These include those provided by
psychiatrists, psychologists, psychotherapists, GPs, hospitals,
counsellors, community psychiatric nurses, mental health
social workers, complementary and ‘alternative’ therapists,
occupational therapists, mental health social workers, key
workers, (peer) support groups, befrienders and other support
workers, day centres (statutory and voluntary), and services
for carers of those with mental health problems. Similarly, the
report describes users of these services as ‘mental health
service users’ unless presenting data on users of a specific
service, such as inpatients and those receiving counselling.
Community members
The term ‘community members’ is used to describe those who
have not been identified by the study reports as mental health
service users, ex-users or carers of someone with a mental
health problem.
DRE Community Engagement Study Introduction
section 1
International School for Communities,
Rights and Inclusion (ISCRI) University
of Central Lancashire
www.uclan.ac.uk/iscri/index.php
Led by Professor Lord Patel of Bradford OBE, the International
School for Communities, Rights and Inclusion (ISCRI) was
established in August 2008 by the merger of six existing
academic units – the Centre for Ethnicity and Health, the
Institute for Philosophy, Diversity and Mental Health, the
Centre for Professional Ethics, the Psychosocial Research
Unit, the Centre for Volunteering and Community Action, and
Islamic Studies. The International Centre for Sign Languages
and Deaf Studies (iSLanDS) joined the school in August 2009.
The work of the school is divided between two interdisciplinary
Centres: the Centre for Psychosocial Research and Wellbeing
and the Centre for Social Policy and Community Engagement.
The school also supports three Institutes: the Inclusion
Institute, which was established as part of the school to
continue and develop the work of the now defunct National
Social Inclusion Programme; the Institute for Global Youth
Leadership and Community Action; and the iSLanDS Institute.
National Mental Health Development Unit
(NMHDU)
The National Mental Health Development Unit (NMHDU),
launched in April 2009 (and incorporating a number of former
NIMHE programmes), provides national support for
implementing mental health policy. The NMHDU advises on
national and international best practice to improve mental
health and mental health services. It is funded by both the
Department of Health (DH) and the NHS.
NMHDU’s work is developed through co-production with the
DH and the ten Strategic Health Authorities (SHAs) and
strategic partnerships with other groups such as the NHS
Confederation, the Association fo Directors of Adult Social
Services and the major mental health third sector organisations.
Further information about the work of the NMHDU is
availabile on www.nmhdu.org.uk
7

Executive Summary
This report documents the process, the findings and the
outcomes from the National Institute for Mental Health
in England (NIMHE) Community Engagement Project.
This project was commissioned by NIMHE (now absorbed
into the National Mental Health Development Unit/NMHDU)
from the University of Central Lancashire (UCLan) and was
conducted across England between 2005 and 2008.
Report Overview
• T
he project allowed 547 community researchers,
75 community organisations, 935 Black and minority
ethnic current or ex-mental service users, 344 carers
and 4,472 other community members to contribute
to the development of mental health policy and to the
planning and provision of services.
• This report presents an analysis of the quantitative and
qualitative data from 79 studies conducted by the
community organisations participating in the project
(section 3.3). It provides a comprehensive overview of
the issues that were explored by the studies in relation to
Black and minority ethnic populations and mental
wellbeing, mental health problems, mental health services
and the vision of service characteristics for 2010 set out in
DRE. The report also documents some of the project’s
outcomes for individuals, communities and mental health
service development. In order that the findings could be
located in the context of current mental health policy,
practice and service provision, commentaries were also
elicited from mental health experts.
CONTEXT (section 3.1)
• The context in which the NIMHE Community Engagement
Project was conceived, commissioned and conducted was
Delivering race equality [DRE] in mental health care[1] and
the Community Engagement Model[2] devised by the
Centre for Ethnicity and Health (now the International
School for Communities, Rights and Inclusion) at UCLan.
• The focus of the community organisations’ studies was
on one or more of the twelve interrelated DRE service
characteristics. This report presents data on six of these
characteristics:
– less fear of mental health services among Black and
minority ethnic communities and service users;
– increased satisfaction with services;
[1] Department of Health (2005a) Delivering race equality in mental health care: an action plan for reform inside and outside services and the
Government’s response to the independent inquiry into the death of David Bennett. London, Department of Health
[2] Fountain, J. Patel, K. Buffin, J. (2007) Community engagement: The Centre for Ethnicity and Health model. in Domenig, D. Fountain, J.
Schatz, E. Bröring, G. (eds.) Overcoming barriers: migration, marginalisation and access to health and social services. Amsterdam, Foundation
Regenboog AMOC, pp. 50-63
DRE Community Engagement Study Executive Summary
section 2
– more Black and minority ethnic service users reaching
self-reported states of recovery;
– a more balanced range of effective therapies, such as peer
support services and psychotherapeutic and counselling
treatments, as well as pharmacological interventions that
are culturally appropriate and effective;
– 
a more active role for Black and minority ethnic
communities and Black and minority ethnic service
users in the training of professionals, in the development
of mental health policy, and in the planning and
provision of services; and
– 
a workforce and organisation capable of delivering
appropriate and responsive mental health services to
Black and minority ethnic communities.
The six remaining DRE service characteristics essentially
describe actions by mental health service providers, and it
was not expected that the community organisations would
address them in any depth.
COMMUNITY ENGAGEMENT (section 3.2)
• One of the three building blocks of the DRE programme
for change from 2005-2010 was a programme of
community engagement with Black and minority ethnic
populations, to ensure that they had genuine opportunities
to influence mental health policy and provision, and to
promote mental health and recovery.
• One of the methods of fulfilling the community engagement
agenda was to use the community engagement approach
devised by UCLan. This includes training and supporting
Black and minority ethnic community organisations to
conduct research among their own communities and
supporting them to connect with local services by setting
up steering groups. In this project, steering groups
typically comprised local mental health service planners,
commissioners and providers. The regional race equality
leads (RELs), appointed by the Department of Health to
play a key role in moving forward the DRE action plan,
were also active in supporting the project.
• A total of 547 community researchers were recruited by
the community organisations to collect data for the project.
Of these, 48 (9%) were previous or current mental health
service users and nine were carers of service users.
8

Executive Summary
THE SAMPLE (section 3.5)
• The community researchers collected data from a sample
of 6,018 study participants, comprising 5,751 Black and
minority ethnic community members – including 935
current or ex-mental service users and 344 carers – and 267
mental health service providers.
• The ethnicities of the sample were reported as:
– 40% Asian or Asian British;
– 24% Black or Black British;
– 17% White or Other White (such as Romany Gypsies,
Irish Travellers, Irish people and Ashkenazi Jews);
– 7% Chinese;
– 4% Mixed (mainly White and Black African or White
and Black Caribbean); and
– 8% Other (including Cypriot, Iranian, Kurdish, Turkish,
Vietnamese and Yemeni).
Almost half (46%) of the community member sample described
their religion as Muslim, and 29% as Christian.
FINDINGS (section 4)
Fear of mental health services (section 4.1)
Fears of mental health services differed according to the level
of the study participants’ experiences of mental health
problems and treatments:
– Those with little or no experience of mental illness
reported that their biggest fear of seeking help was not
what might happen to them in mental health services,
but rather the stigma, shame and the social repercussions
(such as the negative effect on marriage prospects).
– The biggest fear of those who had direct experience of
services, particularly as inpatients, was re-engaging
with these services. They were particularly afraid of
being over-medicated, that services would breach
confidentiality, and of developing further symptoms and
illnesses after contact with other service users.
Effective therapies and interventions (section 4.2)
Study participants and the community organisations strongly
criticised the unbalanced approach to treatment, with its over-
reliance on medication, which had unwanted side-effects.
The majority of the mental health service users who had
been treated only with medication thought that other and/
or additional therapies would have made their treatment
more effective. However, it was reported that a choice
and combination of therapies were not routinely offered to
service users.
DRE Community Engagement Study Executive Summary
section 2
Although talking therapies were most often reported to
be the most effective accompaniment to, or substitution for,
treatment with medication, this was not consistently reported
across the different ethnic groups. Some Black Africans, other
asylum seekers and refugees, and Irish people (including
Travellers), did not see any value in talking about their
situation and feelings. A minority of the study participants
with mental health problems, across all the ethnic groups,
reported the effectiveness of complementary therapies.
The majority of the study reports – across ethnicity, age
and gender – clearly showed that mental health service users
thought that social interaction and taking part in activities
maximised the effectiveness of their prescribed treatment.
Services from voluntary and community organisations were
particularly valued for the provision of opportunities for
socialising, befriending and participation in activities such as
outings, lunch clubs, exercise and discussion groups.
Culturally appropriate treatment and interventions
(section 4.3)
A culturally competent service operates effectively in different
cultural contexts so that the needs of all members of their
target population can be met by equitable access, experience,
and outcome. The accumulated data across the study reports
point to a strong need for greatly increased cultural competence
by mental health services.
Study participants raised a number of practical issues in terms
of services’ cultural competence: language, faith and religion,
food, gender, the ethnicity of staff and racism. It is not intended
to suggest that these categories comprise the entire range of
the elements that define cultural competence, nor that they
exist in isolation from each other or from the issues raised
elsewhere in the report.
– Language (section 4.3.1)
Community member study participants reported fluency in
a total of 131 languages and dialects. Some of the study
participants – especially elderly people – could neither
read nor write in any of the language(s) they spoke.
The inability to speak English was reported to be a major
factor in the social exclusion of some Black and minority
ethnic people, and that this adversely affects their mental
health. This was particularly (but by no means exclusively)
reported among some Black Africans and older generations
of Chinese and South Asian people.
Language was identified as one of the major barriers
(or, in some reports, as the major barrier) to mental
health service access by a large proportion of service
users, carers, community members and service providers.
Communication difficulties throughout the journey through
mental health services were identified, including at the
start, when a person tries to explain their symptoms. These
difficulties were perceived to lead to incorrect diagnoses
and to inappropriate and unsuccessful treatment.
9

Executive Summary
A lack of professional interpreters was reported, and many
study participants had little confidence in those they had
been allocated, mainly because the interpreter did not have
any knowledge of mental health issues and/or did not
understand the patient’s culture. When an interpreter was
not available, patients who could not communicate in
English could not use a service on their own and relied on
family, friends and contacts in the community (such as
those from community organisations and places of worship)
to interpret.
– Faith and religion (section 4.3.2)
Dissonance between western psychiatric models of mental
ill health and religious beliefs was reported, especially by
Muslims, Orthodox Jews and Christians. Statutory services
were criticised for not taking faith and religious beliefs
– Ethnicity of mental health service staff (section 4.3.5)
sufficiently into account when diagnosing and treating
patients: consequently, religious practices can be
misinterpreted as dysfunctional behaviour and service
users may be unable to follow their religious practices.

There is a lack of awareness among statutory service
providers about patients’ faith and religious needs, and
some studies, particularly those among Muslim and
Orthodox Jewish communities, highlighted the
fundamental, interwoven aspects of religion on daily life
that they felt service providers needed to understand more
fully. Two-way partnerships were suggested to address
this, in which faith-based organisations and mental health
services both learn more of the other’s perspective.
– Food (section 4.3.3)
Dissatisfaction with the lack of provision of culturally
appropriate food by statutory mental health services was
not related to ethnicity: members of all the ethnic groups
represented in this project expressed their discontent.
Several studies made the point that the lack of culturally
appropriate food added to the stress of those who were
mentally ill and in hospital, isolated from their families,
friends and usual activities, including their usual diet.
– Gender (section 4.3.4)
Study participants reported that some gender-specific
factors related to their culture negatively affected their
mental health. For females, these factors were isolation,
their expected role in the family, the stigma of mental
illness and of ‘not coping’ with their family responsibilities,
powerlessness, domestic violence (including forced
marriage), and the asylum-seeking process. The factors
affecting the mental wellbeing of males were reported to
be the asylum-seeking process, unemployment, challenges
to the traditional male role in the family, isolation and
reluctance to express emotions. Study participants wanted
mental health service providers to be more understanding
of, and sensitive to, these issues when diagnosing and
treating Black and minority ethnic patients.
DRE Community Engagement Study Executive Summary
section 2
Many of the study participants identified mixed gender
services as a barrier to mental health service access,
especially (but not exclusively) facing women, particularly
Muslims and Orthodox Jews. These participants therefore
wanted gender-specific mental health services, and some
wanted these to be provided in female-only or male-only
spaces.
Overall, the study participants wanted to be treated by a
mental health professional of the same gender as
themselves, or to have a choice. However, the proportion
of participants wanting this varied across the studies and
between ethnic groups and genders, although there are
indications that this was more of an issue for females
than for males.
The major expressed need identified by this project was
for mental health services and staff that are empathetic
and sensitive to cultural and religious needs. Many of the
participants, regardless of ethnicity, gender and age,
stressed that cultural competence could be achieved if
mental health service staff were the same ethnicity as their
patients. However, some did not agree, because they
thought practitioners from their ethnic group may breach
confidentiality, may judge them negatively, and may view
mental health problems and patients only from a western
perspective. Others thought that the ethnicity of staff and
patients was irrelevant, as long as the service provider
was ‘professional’.
Voluntary and community organisations were commended
for providing services (including mental health support
services) in religiously and culturally supportive
environments, and a major reason for this was reported
to be because they were staffed by people who were the
same ethnicity and spoke the same language(s) as those
who visited them.
The issue of mental health service staff and their patients is
a complex issue, including that members of the same ethnic
group may not have the same cultural background. On the
other hand, it was widely believed by some members of
some Black and minority ethnic populations that White
service providers could never understand their culture.
10

Executive Summary
– Racism in mental health services (section 4.3.6)
Racial abuse from other members of the public was an
underlying theme across the studies. It was reported by all
ethnic groups (including the White groups, such as Irish
people, Irish Travellers and migrant workers from Eastern
Europe), but particularly by Muslims and asylum seekers.
Many study participants discussed the negative effect of
such racial abuse on their mental wellbeing.
Where study participants reported mental health services’
failure to address their language, faith and religious, dietary
and gender requirements, by no means all used the terms
‘racism’ or ‘discrimination’ to describe this. Nevertheless,
some were in no doubt that mental health services’ lack
of cultural competence amounted to institutional racism,
especially Muslims, asylum seekers and refugees, and,
particularly, Black African and Black Caribbeans.
The journey towards recovery (section 4.4)
Factors that facilitate recovery were identified as support from
family and friends, ‘keeping busy’, a positive attitude, faith
and religion, and medication. There was a strong correlation
between the reported barriers to recovery and lack of
the facilitating factors: the lack of support from family and
friends, the stigma of mental illness, a return to an unchanged
environment after treatment, a poor experience of treatment,
and disbelief that recovery is possible.
Service user and carer satisfaction with mental
health services (section 4.5)
The issues in relation to satisfaction with mental health
services cannot be seen in isolation from other sections
reporting the findings from the project. These provide clear
evidence that levels of satisfaction with mental health
services, as well as being highly individual and subjective,
are inextricably linked to service users’ fears of mental health
services; perceptions of the effectiveness of the treatment
received; experiences and perceptions of services’ cultural
competence; and their opinions about whether or not treatment
resulted in recovery.
It is not possible to draw overall conclusions on levels of
satisfaction with services across the whole project, nor within
and between different ethnic groups. The range of participating
community organisations, the focus of their studies and their
target samples were extremely diverse and each community
organisation devised their own data collection methods,
which ranged from statistical scales to measure satisfaction
to individual case studies. It is therefore unsurprising
that, overall, study participants reported a broad range of
experiences and subsequent levels of satisfaction with mental
health services. There were many accounts and statistical
data to show that these services had made a positive impact
and, equally, some powerful stories of problematic experiences.
DRE Community Engagement Study Executive Summary
section 2
A more active role for Black and minority ethnic
communities and service users (section 4.6)
The commissioning and completion of the NIMHE Community
Engagement Project was itself a contribution to the DRE
service characteristic for 2010, ‘a more active role for Black
and minority ethnic communities and Black and minority
ethnic service users in the training of professionals, in the
development of mental health policy, and in the planning and
provision of services’. The project resulted in 79 reports on
issues surrounding mental health and mental health services
among a variety of Black and minority ethnic populations,
with a total sample of 935 current or ex-mental service users,
344 carers and 4,472 other community members.
Older people (section 4.7)
Older Black and minority ethnic people are specifically
mentioned in DRE as needing improved mental health
services. Fifteen of the 79 studies dealt solely with this issue
and older people were included in the samples of other studies.
The results appear throughout this report and this section
sets them in the context of previous research and current
policy. It shows that older Black and minority ethnic people
are especially vulnerable to exclusion, marginalisation and
inequality in mental health promotion and mental health
service access. The recommendations from the community
organisations on this issue are in keeping with recommendations
from a range of central guidance, but unlike the central
guidance, provide practical details of specific ways in which
the barriers to service access facing older people can
be reduced.
The Count me in census (section 4.8)
The annual Count me in census of all psychiatric inpatients
in England and Wales began in 2005 as part of one of the
building blocks of the programme of change laid out in DRE.
Although the census results refer only to inpatients, many
study participants and community organisations were aware
of the overrepresentation of the Black African, Black
Caribbean, Black British, Mixed White and Black African,
and Mixed White and Black Caribbean ethnic groups. The data
from the censuses support the findings from the study
reports surrounding Black and minority ethnic people’s fears
of mental health services and dissatisfaction with them.
11
 section 2
Executive Summary

PROJECT OUTCOMES (section 5) Representatives of three community organisations were asked

The project’s outcomes for individuals
The project led to outcomes for the 547 community researchers
who conducted the research among these populations. At the
end of their involvement in the project:
– University Certificates were awarded to 321 of the
community researchers.
– They recounted extremely positive outcomes in terms
of the new skills and knowledge about mental health
and mental health services that they had acquired during
UCLan’s training workshops and their work on the
project. Some went on to obtain employment in the
mental health field (including at least 20 as CDWs).
In addition, follow-up work on subsequent outcomes was
conducted among five individuals who had worked as
community researchers on the project. They provided accounts
of ‘what happened next’. Four of these credited their
involvement in the project with obtaining employment in
the mental health field – three as CDWs and another as a carer
support worker. The fifth received a national award for his
work researching the local Pakistani community.
to describe their experiences since the completion of their
studies, including the uptake of their recommendations.
They reported ongoing progress and partnership work with
statutory organisations.
The project’s outcomes for Black and minority
ethnic communities
A survey on the outcomes of the NIMHE Community
Engagement Project for Black and minority ethnic communities
was conducted among 140 CDWs in August 2009:
– Of 72 CDWs who were aware of the project (including
42 who had been directly involved), 40% (29) had
observed improvements in mental health services for
Black and minority ethnic communities that had
occurred as a result of the project, 21% (15) were unsure
if improvements were connected to the project, and
39% (28) had not observed any improvements connected
to the project. The most frequently reported
improvements were that the project had highlighted
Black and minority ethnic communities’ mental health
service needs, and raised the profile of mental health in
the communities.

The project’s outcomes for community organisations – Fifty-seven CDWs said they had experienced obstacles
The 75 community organisations that participated in the in trying to achieve improvements for Black and
project also recorded positive outcomes from the project for minority ethnic people in terms of mental health service
the organisation. At the end of their involvement in the project: provision. They particularly reported the lack of support
from healthcare professionals and of financial resources.
– The community organisations had been supported by a
total of around 400 steering group members that
included local mental health service planners,
commissioner and providers. This engagement ensured
that the studies were compatible with local priorities
and strategies, provided a mechanism for implementing
the recommendations, and maximised the likelihood
that the community organisations’ work will be
sustained in the long term.
– The community organisations’ profiles were raised
among local and regional mental health services and
among the local Black and minority ethnic populations.

– 
Links and partnerships between community
organisations and primary care trusts (PCTs) were
strengthened.

– 
There was an increase in community organisations’
knowledge of, and engagement with local Black and
minority ethnic populations.
– There was an increased awareness of mental health and
mental health services among local Black and minority
ethnic populations.
– Funding was obtained by some community organisations
to conduct further work related to the mental health
service needs of Black and minority ethnic populations.

DRE Community Engagement Study Executive Summary 12

 section 2
Executive Summary

THE COMMUNITY ORGANISATIONS’

RECOMMENDATIONS (section 6)
Section 6 presents the community organisations’ detailed
recommendations, based on their findings, of what the next
steps should be to reach the DRE aims of achieving equality
and tackling discrimination in mental health services in
England. However, as DRE covered 2005-2010 and the
NIMHE Community Engagement Project ran from 2005-
2008, some of the recommendations were made as DRE began
and may have been addressed or are currently under
consideration. Nevertheless, they indicate the issues that are
significant at community level and what the community
organisations see as essential for DRE to achieve its aims.


– 
The majority of the studies recommended vastly
increased Black and minority ethnic community
members’ and service users’ involvement in the
planning, commissioning and delivery of mental health
services, to their own and others’ benefit. The studies
argued that the result would reduce these communities’
fear of mental health services; provide them with a
more balanced range of culturally appropriate, effective
therapies; increase mental health services’ cultural
competence; increase the proportion of Black and
minority ethnic service users reaching self-reported
states of recovery; and increase their satisfaction with
services.

– It is clear from the data gathered from all the ethnic
groups that participated in the project that all the mental
health service needs (including demolition of the
barriers to service access) are interrelated.


– 
In addition, the study reports show the importance
of work at local level towards the DRE vision of
service characteristics. This, for example, would address
the heterogeneity of, for example, ‘the South Asian
communities’, within which there are differences
between genders, generations (especially between those
who were born in and outside the UK), faiths and
religions, and languages and dialects, as well as between
those of Bangladeshi, Indian, Pakistani and Sri Lankan
heritage. ‘What works’ for any one of these – or indeed
for any other Black and minority ethnic population –
may be inappropriate for another.

DRE Community Engagement Study Executive Summary 13


Background,
method and sample
The National Institute for Mental Health in England (NIMHE)
Community Engagement Project was commissioned by
NIMHE. Seventy-five community organisations participated
in the project, which was conducted in three phases between
2005 and 2008. The project was managed and supported by
the Centre for Ethnicity and Health (now part of ISCRI) at
UCLan on behalf of NIMHE (then part of the Care Services
Improvement Partnership and since absorbed into the successor
organisation, the NMHDU).
This section describes the context in which the NIMHE
Community Engagement Project was devised, commissioned
and conducted: Delivering race equality in mental health care
(Department of Health 2005a) and the ISCRI Community
Engagement Model (Fountain, Patel and Buffin 2007). Details
are provided of process of recruitment, training and of the
studies conducted by the 75 community organisations.
The methods used to compile this report are then summarised,
followed by a description of the characteristics of the
sample of 5,751 community members and 267 mental health
service providers.
3.1 Delivering race equality in mental
health care: background and context
Delivering race equality [DRE] in mental health care
(Department of Health 2005a) was a five year action plan
for achieving equality and tackling discrimination in mental
health services in England. It also outlined the Government
response to the recommendations made by the inquiry into the
death of David Bennett in terms of all Black and minority
ethnic people. This section provides a summary of the DRE’s
vision of service characteristics, building blocks and action
plan.
While part of the impetus for developing the plan was
connected to the disproportionate number of Black African
and Black Caribbean men who are detained under the Mental
Health Act 1983 and inpatients in psychiatric hospitals (see
section 4.8), the scope of the DRE goes well beyond a focus on
any specific ethnic groups. Like the definition of ‘BME’ in the
‘Note on the terms used in this report’ section, it very
deliberately casts a wide net to encompass all ethnic groups in
England, including migrants from Central and Eastern
European countries, Irish people and Irish Travellers.
The DRE stresses that (p.14):
 – Equality in mental health services is not a new
requirement. Many of the actions described in DRE
have their roots in existing legislation, guidance or
initiatives. Many are to be taken at national level, by the
Government or other bodies. DRE pulls them all
together, sets them in a mental health context, and adds
the key, focused activity that is now needed to ensure
rapid progress.
DRE Community Engagement Study Background, method and sample
section 3
Specifically, DRE was designed to deliver on three key aims
by 2010: equality of access, equality of experience and equality
of outcomes.
DRE showed the need for an effective framework that
could deliver better and more culturally appropriate, clinically
effective and recovery-orientated care for members of Black
and minority ethnic communities. DRE demonstrated how the
different initiatives would produce the improvements required.
Many different organisations needed to be involved in
delivering the programme, reflecting the complex nature of
mental health service development.
3.1.1 The five-year vision
The five-year vision for DRE (pp.4-5) was that by 2010,
mental health services should be characterised by:
– less fear of mental health services among Black and
minority ethnic communities and service users;
– increased satisfaction with services;
– a reduction in the rate of admission of people from
Black and minority ethnic communities to psychiatric
inpatient units;
– a reduction in the disproportionate rates of compulsory
detention of Black and minority ethnic service users in
inpatient units;
– fewer violent incidents that are secondary to inadequate
treatment of mental illness;
– a reduction in the use of seclusion in Black and minority
ethnic groups;
– 
the prevention of deaths in mental health services
following physical intervention;
– more Black and minority ethnic service users reaching
self-reported states of recovery;
– a reduction in the ethnic disparities found in prison
populations;
– a more balanced range of effective therapies, such as peer
support services and psychotherapeutic and counselling
treatments, as well as pharmacological interventions that
are culturally appropriate and effective;
– 
a more active role for Black and minority ethnic
communities and Black and minority ethnic service
users in the training of professionals, in the development
of mental health policy, and in the planning and
provision of services; and
– 
a workforce and organisation capable of delivering
appropriate and responsive mental health services to
Black and minority ethnic communities.
14
 section 3
Background,
method and sample

3.1.2 Building blocks
DRE’s programme of change was founded on three building
blocks (p.3):
more appropriate and responsive services – achieved

– 
through action to develop organisations and the workforce,
to improve clinical services and to improve services for
specific groups, such as older people, children and
adolescents, and asylum seekers and refugees;
community engagement – delivered through healthier
– practice.
communities and by action to engage communities in
planning services, supported by 500 new CDWs; and
better information – from improved monitoring of
– eliminating discrimination in mental health care. These sites
ethnicity, better dissemination of information and good
practice, and improved knowledge about effective
services. This will include a new regular census of mental
health patients.
3.1.3 Steps in delivering race equality
The DRE action plan had the potential to improve the care
for any group affected by disparity in health and healthcare.
The main elements included:
• Primary care trusts (PCTs) providing more responsive
services based on the needs of the local population, helped
by local demographic data.
• NHS trusts assessed by the Healthcare Commission
(now the Care Quality Commission) on their performance
in challenging discrimination and providing equality
of access.
• A new commitment to reduce the disproportionate rates of
compulsory detention of Black and minority ethnic mental
health patients and to prevent deaths in mental health
services following physical intervention.
• Creating a workforce that has the knowledge and skills to
deliver equitable care to Black and minority ethnic
populations, with support from the Royal College of
Psychiatrists and better race equality training.
• Working with the Home Office and the police to improve
local liaison and with the National Patient Safety Agency
(NPSA) to reform the process of independent inquiries and
issue guidance on creating safer environments on acute
psychiatric wards.
• New focused implementation sites (FISs) where strategic
health authorities (SHAs) and organisations work together
at local level, to drive change in mental health services
for Black and minority ethnic people and to develop best
3.1.4 Focused implementation sites
Seventeen FISs across the country pioneered best practice in
helped identify and spread best practice by developing the
evidence base and facilitating the roll-out of the DRE action
plan. It was intended that FISs could demonstrate from the
outset that change can be achieved. Although implementation
of the plan should have begun across the NHS in 2005, FISs
acted as ‘hothouses of reform’. The aim was to demonstrate
the Government’s seriousness about following through the
commitments made in DRE and to provide a valuable source
of best practice and support for the rest of the NHS. The 17
sites were:
• Bedfordshire & Hertfordshire
• Birmingham & the Black Country
• County Durham & Tees Valley
• Dorset & Somerset
• Greater Manchester
• Hampshire & Isle of Wight
• Leicestershire, Northamptonshire & Rutland
• Northumberland, Tyne & Wear
• North Central London
• North East London
• North West London

• An important role for the non-statutory sector, supported • South East London
by a £2 million national community engagement scheme to • South West Peninsula
help PCTs identify Black and minority ethnic voluntary
• South Yorkshire
and community organisations that can advise them, and, in
some cases act as partners in delivering services. It was • Surrey & Sussex
intended that PCTs would be supported by 500 new CDWs.
• Trent
• NHS Direct to provide a national interpretation and • West Yorkshire.
translation service and PCTs to provide directories of NHS
and social care services targeted at Black and minority
ethnic people.

DRE Community Engagement Study Background, method and sample 15


Background,
method and sample
In particular, FISs sought to:
• Demonstrate that a whole system, collaborative approach,
that draws on and adapts approaches used successfully in
other areas of health care, improves mental health services
for Black and minority ethnic people.
• Provide leadership and raise the profile of the Black and
minority ethnic programme.
• Develop strategic partnerships between key organisations
to lever investment and build capacity.
• Build capacity and intelligence to facilitate further change.
• Directly and quickly improve mental health services for
Black and minority ethnic populations.
3.1.5 Regional leadership
Regional race equality leads (RELs) provided local leadership
for the Department of Health and NIMHE Black and minority
ethnic programmes, including the DRE action plan. The
approach involved developing and implementing race equality
within NIMHE and regional and local services, as well as
providing leadership and mentoring to community development
workers in the RELs’ areas.
3.1.6 DRE and the NIMHE Community
Engagement Project
As discussed in section 3.1.2, one of the three building
blocks of the DRE programme for change was a programme
of community engagement with Black and minority ethnic
populations, to ensure that they had genuine opportunities to
influence mental health policy and provision, and to promote
mental health and recovery. The NIMHE Community
Engagement Project was one of the means of operationalising
this building block. The project was designed to address
the DRE vision of service characteristics listed in section
3.1.1 and to fulfil the DRE’s aims to:
• Help to build capacity in the non-statutory sector.
• Encourage the engagement of Black and minority ethnic
communities in the commissioning process.
• Ensure a better understanding by the statutory sector of the
innovative approaches used in the non-statutory sector.
• Involve Black and minority ethnic communities in
identifying needs and in the design and delivery of more
appropriate, effective and responsive services.
• Ensure greater community participation in, and ownership
of, mental health services.
• Allow local populations to influence the planning and
delivery of services.
• Contribute to workforce development and specifically to
the recruitment of 500 CDWs.
DRE Community Engagement Study Background, method and sample
section 3
The NIMHE Community Engagement Project used a model of
community engagement originally developed by the Centre
for Ethnicity and Health at UCLan to achieve these aims. This
model is described in the following section.
3.2 The ISCRI Community
Engagement Model
(Fountain, Patel and Buffin 2007)
This section briefly describes the community engagement
model used for this project and developed during the Centre
for Ethnicity and Health’s Community Engagement
Programme at the University of Central Lancashire (the
Centre for Ethnicity and Health is now part of the ISCRI).
The ISCRI Community Engagement Model (figure 1) radically
challenges traditional research and consultation processes
among socially excluded communities (variously described as
community ‘representation’, ‘involvement’, ‘participation’,
‘empowerment’, and ‘development’). It provides a practical
and robust means to ensure that health and social services
are equitable, appropriate and responsive for all members of
the population.
Socially excluded communities are often described as being
‘hidden’ or ‘hard to reach’ by researchers and by health and
social services. However, a basis of the ISCRI approach is
that it is not the communities themselves that are hidden or
hard-to-reach, but rather that those who usually conduct
research have little success in accessing them and/or obtaining
the desired information, and that there are barriers hindering
their access to health and social services. Some members of
the population, particularly those from Black and minority
ethnic communities, face a series of barriers that prevent them
accessing and benefiting from health and social services.
Service responses may therefore have to be different for these
communities, in order to begin to overcome these barriers,
especially in terms of culture and language.
The major aims of the ISCRI Community Engagement
Model are to create an environment in which communities
(both individuals and organisations) and agencies can work
equitably together to address an issue of mutual concern, and
that the research benefits the communities that are being
studied. Individuals from the target community are recruited
and their capacity built by the provision of regular support,
appropriate resources, and accredited training from an
external facilitator. These individuals are not necessarily those
perceived as ‘community leaders’ nor ‘spokespersons’ on the
issue in question, but those who represent the diversity within
a community and have access to its members. From the outset
and throughout, there is explicit involvement in the engagement
process of local agencies responsible for commissioning,
planning, and delivering services. Each project has a steering
group made up of representatives of these agencies.
16
 section 3
Background,
method and sample

Figure 1

Facilitated Supported Resourced Trained

Communities and agencies working together

Raising awareness Generating

equitable services = ownership
improved access,
experience and outcome
Reducing stigma, Sustaining
denial and fear engagement

Assessing need Developing

workforce

Increasing trust Building capacity

Articulating need

3.2.1 Implementation of the model Host community organisation

There are a number of key ingredients to ensure the successful In order that the community is at the heart of a community
implementation of the Community Engagement Model: engagement project, it is essential to work though a host
a facilitator, a host community organisation, a task, and support community organisation, which may be an existing
in the form of training, a project support worker, funding and a organisation, or one created specifically for the project. The
steering group. community organisation must have good links to the
community it intends to research, so that it is able to recruit
Facilitator members to participate in the work as community researchers
The process of community engagement described here and as research subjects. The organisation must be able to
requires overall management, but by a body acting as a provide co-ordination and an infrastructure for the day-to-day
facilitator rather than as an authoritarian controller, activities that will be undertaken once the project is underway,
concentrating on creating an environment where community such as somewhere to meet, access to telephones and
organisations and agencies work together. After obtaining computers, and a financial system. The greatest proportion
funding for a community engagement project, the role of of funding for projects in the Community Engagement
the facilitator includes: Programme has been distributed among the participating

– 
advertising, recruiting, and selecting the community community organisations.
organisations to participate in the project, including
advising and supporting potential applicants during
this process;
– providing and managing the team of staff supporting
the community organisations (project support workers
and trainers, as described below, and dedicated
administrative staff);

– 
facilitating engagement between the statutory and
community sectors; and
– advising, guiding and supporting the relevant service
agencies to engage and work with the community
organisations and vice versa.

DRE Community Engagement Study Background, method and sample 17


Background,
method and sample
Task
The task that the community is to be engaged in must be time-
limited and manageable, and most Community Engagement
Programme projects to date have involved communities in
undertaking a needs assessment on an issue that is significant
both to them and to local services. However, it must be stressed
that although a research report from a community organisation
is a significant outcome of a community engagement project,
of equal importance is the process of building the skills
and capacities of the community organisations, community
members, and local service planners, commissioners and
providers involved. This is done by:
– raising the awareness of community members of the
issue in question and of the local services available;
– raising the awareness of service planners, commissioners
and providers of the community and their service needs;
– where it exists, reducing the community’s stigma, fear,
and denial of the issue (such as drug use and mental
health problems);
– 
building the capacity of individuals and community
organisations to enhance their ability to articulate
identified needs to service planners, commissioners,
and providers, thereby ensuring local ownership and
clear plans to implement the research findings;
– enhancing the local workforce and planning agenda to
ensure delivery and growth in the workforce, including
the development of mentoring, accredited training,
volunteer networks and employment;
– increasing the trust of the community in local service
planners, commissioners, and providers and vice versa;
and
– involving local service planners, commissioners, and
providers in the process. This enables the development
of services that are sensitive to, and meet, identified
needs, and sustains engagement with the community,
the partnerships that have been established during the
project, and the work that has been identified by
the research.
DRE Community Engagement Study Background, method and sample
section 3
Support
The support element of the ISCRI Community Engagement
Model consists of training, project support workers, funding,
and a steering group. Support is a crucial element in capacity-
building a group of people to conduct a piece of research,
produce a report, and to ensure that the recommendations for
service development are taken seriously. It should be
emphasised that the majority of community organisations and
community researchers who have participated in the
Community Engagement Programme have had little or no
prior experience of either conducting research, the issue
they will be researching, nor the local service provision to
address it.
– 
When a community organisation is recruited to a
community engagement project, they are assisted by the
facilitator to identify and recruit an individual from their
community to act as a lead researcher/co-ordinator, and
others to conduct the research. Training is provided for
these community members to give them a basic
knowledge of research methods and the area they will
be researching, including relevant national and local
policies. Typical training programmes comprise five
days on research methods and two days on the area of
research. They take place in accredited workshops,
giving participants the opportunity to complete an
assignment to gain a nationally recognised university
certificate.
– As discussed by Fountain, Khurana and Underwood
(2004), implementation of the ISCRI Community
Engagement Model involves project support workers,
who are required to offer a significant level of support
to the communities but stopping well short of doing
the work that the communities are learning to do
themselves. Most support workers employed on the
Community Engagement Programme are graduates,
with previous experience in conducting research and of
working with Black and minority ethnic communities.
The majority are members of these communities
themselves. The project support workers visit ‘their’
projects for at least half a day once a fortnight and are in
telephone and/or email contact the rest of the time. They
have a number of key responsibilities, including helping
community organisations to develop their methods of
investigation; advising on budgetary management;
making and maintaining links with local key stakeholders
to ensure that projects are linked into local relevant
service plans and agencies; providing academic advice
to those enrolling on the university certificate courses;
monitoring projects on an on-going basis; and assisting
community organisations to disseminate and promote
the project’s final report. In national projects, support
workers are managed and supervised by regional senior
support workers, who oversee and advise on the
region’s projects.
18

Background,
method and sample
– The funding required for projects in the Community
Engagement Programme varies according to the number
of community organisations who participate, as this also
determines the number of staff involved as managers,
support workers, administration workers, and workshop
leaders. Some relatively large grants have been obtained,
including one for several million pounds for The
Department of Health’s Black and minority ethnic drug
misuse needs assessment project in which 179
community organisations participated. Much smaller
projects, such as A community engagement project to
assess the sexual health needs of young people of South
Asian heritage in Blackburn with Darwen, involved just
one community organisation. Typically, community
organisations receive £15,000-20,000 each in a
community engagement project. The bulk of this is
expected to be used to pay those who conduct the
research among members of their community.
– A steering group is an essential requirement for each
project in the Community Engagement Programme, and
comprises relevant local health and social service
planners, commissioners, and providers. This makes it
clear with whom the community is engaging and
maximises the likelihood that the community
organisation’s work will be sustained in the long term.
The steering group role includes ensuring that the work
undertaken by the community organisation is compatible
with local priorities and strategies; providing a
mechanism for taking forward the research findings and
recommendations; and harnessing the energies of those
engaged in the project as they acquire skills and
knowledge, by supporting them to take the next steps in
terms of learning or career development.
3.2.2 Sustainability
Where all the above ingredients are present, the sustainability
of the work using the ISCRI Community Engagement Model
has greatly contributed to the engagement of local people in
the planning and development of new services that address
their needs. The themes that emerge from the community
organisations’ reports are often very powerful, particularly
when combined with other reports from the same project.
These data are key to commissioning and planning services for
diverse and previously ‘hard to reach’ communities: although
there may be statistics that show that there is under-access,
over-access, or inequitable access to a range of health and
social services, statistics cannot explain the underlying issues.
Thus, the implementation of the model not only begins to
dismantle the barriers to health and social service access faced
by socially excluded populations, but also increases the
understanding of service planners, commissioners and
providers about segments of the population they serve.
DRE Community Engagement Study Background, method and sample
section 3
3.2.3 Achievements
The Department of Health’s Black and minority ethnic drug
misuse needs assessment project is just one illustration of the
model in practice. The project was conducted across England
during 2000-2006, in three phases, and is the largest project in
the Community Engagement Programme to date. Phase one
is reported in detail by Winters and Patel (2003) and Bashford
et al. (2003) and phase three was externally evaluated (Baker
et al., 2006). Among the project’s achievements was a great
improvement in service providers’ relationships with the
participating community organisations.
The application of the ISCRI Community Engagement Model
also assisted in organisational change processes for relevant
agencies, including effective ethnic monitoring, workforce
development, training and practice initiatives, and the
development of a range of policies and practices involving
local communities from the outset. The process the model
prescribes aims at more than community representation,
involvement, participation, empowerment, or development
although it will also achieve these. It is positive in its
conception, and impacts and drives both communities and
agencies to be proactive in their relationships. In this respect,
the model conforms to the human rights legislative framework
evolving across Europe.
3.3 The NIMHE Community
Engagement Project
This section provides details of the community organisations
that participated in the NIMHE Community Engagement
Project and the DRE-related issues that they addressed. It
continues with summaries of how community organisations
were recruited to the project, how they were trained and
supported throughout, and how they collected the data for their
studies. The processes described in this section illustrate how
the project implemented one of the three building blocks of the
DRE programme for change: a programme of community
engagement with Black and minority ethnic populations, to
ensure that they have genuine opportunities to influence mental
health policy and provision, and to promote mental health and
recovery (section 3.1.6).
3.3.1 The community organisations and their studies
The project was conducted in three phases. In 2005-2006,
11 community organisations were recruited for the pilot phase.
In the 2006-2007 phase, 29 community organisations were
recruited to the project, followed by 39 in 2007-2008.
Seventy-five community organisations participated in this
project. A total of 79 community engagement studies were
completed during the three phases (one community
organisation was unable to complete the work and four each
conducted two studies).
19
 section 3
Background,
method and sample

In several cases, partnerships between community
organisations were formed especially for this project and local
branches of national organisations also conducted studies. In
some instances, close alliances were formed with CDWs and
in a few cases, CDWs played a lead role in managing the
community engagement team and/or gathering data for the
study. Ethical approval was granted for all the studies from the
Centre for Ethnicity and Health’s ethics committee.
Where current mental health service users and/or providers
were included in a study’s sample, ethical approval was also
obtained from the local NHS research ethics committee.
The community organisations participating in each phase are
listed below, along with the titles of their study reports,
revealing the wide range of ethnic populations (section 3.5)
and issues that the studies focused upon.

Phase 1 (2005-2006)

Aston Christian Centre, Birmingham
Bedfordshire African Community Centre
(BAAC), Luton
Big Life Services, Liverpool
BME Housing Consortium/RAMA
(Asian men’s support group), Wolverhampton
Dignity Mental Health Service, Luton
Health, Advocacy and Resource Project
(HARP), Manchester
Karma Nirvana, Derby
Lewisham Day Centre for Refugees and
Asylum Seekers
Northampton Irish Support Group
Rethink Sahayak Services, London
Sharing Voices (Bradford)
The needs of African Caribbean people between the ages of 18-65 that
live in the Aston and surrounding areas of Birmingham with regard to
their mental health and talking therapy
The mental health needs of African refugees, asylum seekers and
new migrants
Why Black and Muslim women in Liverpool do not access mental health
services and also to find out what services are available and how
accessible information was to obtain
Asian men’s mental health
The role faith communities can play in the mental health service needs
of the African Caribbean community in Luton
The mental health needs of refugees and asylum seekers in Manchester
The mental health and wellbeing needs of South Asian women re-
settling in Derby following domestic violence
The mental health needs of refugees and asylum seekers in the London
Borough of Lewisham
A report on the first generation Irish community in Northampton, and
their experiences of mental health and mental health services
Understanding the effects of domestic violence for South Asian women
Self-defined mental health needs of the Muslim community

Phase 2 (2006-2007)

African Caribbean Community Initiative
(ACCI)/Nyela, Wolverhampton
Bangladesh Welfare Association/Culture
Works, Portsmouth
Barnsley Black and Ethnic Minority Initiative
(BBEMI)
Bedford African & Caribbean Forum
Binoh of Manchester
Blackburn with Darwen Community Links
The mental health service needs of African and Caribbean women
The mental health needs of the Bangladeshi community in Portsmouth
Whether existing mental health services in Barnsley are appropriate
and responsive to the needs of refugees and asylum seekers and
migrant workers
The after-care services in Mid and North Bedfordshire for male/female
users with mental health service issues aged between 18-35 from the
African/Caribbean community
Mental health service needs amongst the Orthodox Jewish community
in Greater Manchester
Exploring the needs, views and experiences of South Asian mental
health carers in Blackburn with Darwen

DRE Community Engagement Study Background, method and sample 20


Background,
method and sample
Phase 2 (2006-2007) continued
Bolton Association and Network of
Drop Ins (BAND)
Brunswick Community Development Project
(BCDP), Brighton and Hove
Chinese Mental Health Association (CMHA),
London
Derby Millennium Network (DMN)
Dorset Mind
Hikmat BME Elders Centre, Exeter
Irish Welfare and Information Centre,
Birmingham
Mind in Tower Hamlets (MITH)
Partners of Prisoners (POPS) and Families
Support Group, Manchester
Penwith Community Development Trust,
Cornwall
The Qalb Mental Health Centre, London
Rethink Birmingham
RUN-UP (Redbridge User Network User
Pressure Group)
Sahara Spotlight Group, Sahara Women’s
Group, Middlesbrough
Saheli Asian Women’s Project, Manchester
Smethwick Bangladeshi Youth Forum,
Birmingham
Social Action for Health and Mellow, London
Somerset Racial Equality Council
Talking Matters Wellbeing Centre, London
UK Coalition of People Living with HIV and
AIDS (UKC), London
Wai Yin Chinese Women Society, Manchester
The Wiltshire Trust, Southampton
YWCA Doncaster Women’s Centre
DRE Community Engagement Study Background, method and sample
section 3
Issues and barriers faced by the Black and minority ethnic communities
in accessing mental health services and their experiences once they
access mental health services in Bolton
Access to mental health services and treatment for the Arabic
speaking communities in Brighton and Hove and whether they
are culturally appropriate
The exploration of mental health needs and experiences of the Chinese
community in Barnet
The experiences of 18+ Black and South Asian service users and carers
in the Derby city area
Knowledge and perceptions of the use of compulsory powers in mental
health among Black and minority ethnic communities in Bournemouth,
Poole and East Dorset
‘Like suffer in a dark fridge’: the mental health experiences and
outcomes of Black and minority ethnic elders and their carers in
and around Exeter
The mental health needs of older Irish adults in Birmingham
The experiences that adult mental health service users and survivors
from African and Caribbean, Bengali and Somali communities have had
of using mental health services in Tower Hamlets or other boroughs
The mental health needs of young Black and minority ethnic men
based in HMP/YOI Hindley
Barriers to accessing mental health services within the Black and
minority ethnic community in Cornwall
The mental health service needs of South Asian communities in the
London Borough of Waltham Forest
The mental health views, concerns and needs of the Pakistani
community in Small Heath, Birmingham
The experience of people from Black, Asian and minority ethnic groups
in adult acute mental health settings in Redbridge
Mental health service needs of Asian women
The mental health needs of South Asian women who are survivors of
domestic violence
Sandwell Bangladeshi mental health needs analysis research
The impact assessment of the Mental Health Guide Programme:
a mental health community development project within Hackney’s
African and Caribbean communities
Researching Black and minority ethnic views on mental health provision
in Somerset: light at the end of the tunnel?
Emotional experiences and attitudes of Orthodox Jews in Stamford Hill:
a needs assessment of mental health services in the Ultra Orthodox
Jewish community in North London
The mental health needs of Black African people living with HIV
The needs of Chinese older people with dementia and their carers
Investigating the extent and impact of isolation and loneliness amongst
ex-service users and carers
The mental health needs of Black and minority ethnic communities
in Doncaster
21

Background,
method and sample
Phase 3 (2007-2008)
African Caribbean Citizens Forum, Leicester
Age Concern, Herefordshire and
Worcestershire
Amana Educational Trust and Transparency
Research Partners, Bristol
Asylum Link Merseyside (ALM), Merseyside
Chinese Community Development Association
(MCCDA) and Irish Community Care
Merseyside (ICCM)
AWAAZ – Asian Mental Health Research Unit,
Nottingham
Barnsley Black and Ethnic Minority Initiative
(BBEMI)
Black Country Holistic Approach, Walsall
BME Mental Health Community Development
Team, Oldham Primary Care Trust
Bolton Association and Network of Drop Ins
(BAND)
Centre for African Families Positive Health
(CAFPH), Luton
Chinese Mental Health Association (CMHA),
London
Chinese National Healthy Living Centre,
London
Derbyshire Gypsy Liaison Group (DGLG),
East Midlands Region
Derman for the Well-being of the Turkish and
Kurdish Communities, London
Devon and Cornwall Refugee Support
Council (DCRSC) and Plymouth Teaching
Primary Care Trust
Éirim Mná, Midland Heart/Focus Futures,
Birmingham
Faith Community Project (FACOP),
Middlesbrough
The Forest Bus Mobile Project, Hampshire
Future Health and Social Care Association,
Birmingham
Guideposts Trust and Watford Asian
Community Care
Healing Waters, Croydon
DRE Community Engagement Study Background, method and sample
section 3
How best to encourage African Caribbean men to make use of mental
health services prior to crisis
The level of interaction between Black and minority ethnic individuals
aged 50 and over and service providers in relation to mental health
wellbeing in Worcestershire
The mental health needs of Somali 11 to 18 year olds in Bristol
Inequalities and cultural needs in mental health service provision for
Black and minority ethnic communities in Liverpool
Access to mental health secondary care services for South Asians
in Nottinghamshire
Whether mental health services are appropriate and responsive to
the needs of the Gypsy and Traveller communities of South Yorkshire
The mental health needs of Black and minority ethnic young people
Black and minority ethnic elders within the Pakistani, Bangladeshi,
Indian, Polish and Ukrainian communities looking at their experiences
and perceptions of mental health issues in Oldham
Barriers affecting those aged 50+ from the South Asian community
when accessing mental health services and whether socio-economic
factors impact on their mental health
The mental health needs of African heritage people affected by
HIV/AIDS in Bedfordshire
Investigating the barriers and difficulties faced by older Chinese people
in Tower Hamlets and Hackney in coping with mental health issues
The mental health service needs of Chinese elders in Westminster,
Kensington and Chelsea, and Brent
‘I know when it’s raining’: the emotional health and well-being needs
of Romany Gypsies and Irish Travellers
Voice of men: mental health needs assessment of Turkish/Kurdish and
Cypriot/Turkish men in Hackney
2 studies:
The experiences of asylum seeking and refugee women, children
and young people living in Plymouth
‘A normal reaction to an abnormal situation’: the mental health
of lone male refugees and of those seeking asylum in Plymouth
The mental health needs of Irish women in Birmingham
The effective use of faith in alleviating mental health problems
amongst asylum seekers and refugees in the Tees Valley
Mental health, equality and wellbeing of Gypsies and Travellers
in Hampshire
The needs of Black minority ethnic carers who care for those with
dementia, in the Ladywood area of Birmingham
Asian women from Indian, Pakistani, Sri Lankan and Bangladeshi
communities in Watford and their understanding about mental
wellbeing: their views about the accessibility and appropriateness of
local mental health services
The after-care mental health services in Croydon for African,
African-Caribbean and Black British male mental health service
users aged between 18-45 years
22
 section 3
Background,
method and sample

Phase 3 (2007-2008)

Hopscotch Asian Women’s Centre (HAWC),
London
Khidmat Centres, Bradford
Maytree Nursery and Infant School parent
support staff, Southampton
Mind in Harrow
My Time New Communities Team, Birmingham Mental health needs of asylum seeker and refugee men and women
community in Small Heath, Birmingham
Nguzo Saba, Preston
North Hampshire Caribbean and African
Network
Northamptonshire Somali Community
Association (NSCA)
Portsmouth Race Equality Network
Organisation (PRENO)
Rethink West Dorset Services
Rotherham Yemeni Community Association
Shifa, Woking
Southside and Fanon, London
SubCo Trust, London
Tees Valley Voices for Justice, Middlesbrough
Turkish Women’s Support Group, London
Youth Voice, Leicester
The mental health needs of young people from a Bangladeshi
background from the London Borough of Camden
The mental health needs of older people from South Asian
communities in Bradford
Power to parents: work by a local school to enable South Asian parents
to foster their children’s mental wellbeing
Gujarati-speaking Asian elders’ experiences/views and attitudes of
mental health and mental health services in Harrow
Exploring the mental health needs and access to mental health support
services for young males aged 14 to 25 years from African, Caribbean,
South Asian and mixed heritage backgrounds within Preston
Mental health, equality and wellbeing of Caribbean and African black
men in Hampshire
Jaah Wareer (Trauma)? I live with this: post-traumatic stress in the Somali
community in Northampton and their experiences of health services
The mental health needs of people aged 50 and over in the Chinese,
Vietnamese and Sikh communities in Portsmouth and the views of
service providers regarding Black and minority ethnic service users
Mental health needs of Eastern Europeans and preparedness of services
to meet this need
Exploring the mental health needs of the Yemeni community
Why people over the age of 50 from Pakistani, Bengali, Indian,
Nepalese and Chinese communities who are living in the North and
West Surrey areas do not access mental health services provided by
the NHS Trust in North West Surrey and part of North East Hampshire
Male African and African Caribbean perspectives on ‘recovery’
Asian elders’ and carers’ access to mental health services
The mental health needs and experiences of African men living in the
Tees Valley
The mental health needs of Turkish speaking children/young persons
Substance misuse and mental health services: an exploration of the
experiences and attitudes of young people from Black and minority
ethnic communities

3.3.2 Geographical spread of the studies SHA area studies

The vast majority of the studies were conducted within
East of England 5
designated DRE FISs and, as shown below, all ten SHA areas
were represented (a list of the community organisations who East Midlands 8
worked in each of these areas can be found in appendix 1). London 17
North East 2
North West 12
South Central 6
South East Coast 3
South West 8
West Midlands 11
Yorkshire and 7
the Humber

DRE Community Engagement Study Background, method and sample 23


Background,
method and sample
3.3.3 The themes of the community
organisations’ studies
Applications were invited from community organisations to
conduct a piece of research addressing one or more of the 12
service characteristics set out in the DRE vision (section 3.1.1)
by actively engaging members of Black and minority ethnic
communities (including mental health service users) in the
process, both as researchers and study participants.
In order that as wide a range as possible of Black and minority
ethnic communities were represented in the project,
applications for the third phase (2007-2008) were particularly
sought for studies dealing with older people, children, Irish
communities, Eastern European communities and men.
During this phase, RELs and UCLan’s community engagement
support workers particularly encouraged applications focused
on these DRE priority areas. Within these parameters, and
with guidance from RELs and UCLan, community
organisations were invited to choose which of the DRE service
characteristics to focus upon. Their choices meant that this
report is able to present data on five of the characteristics:
– Less fear of mental health services among Black and
minority ethnic communities and service users;
– A more balanced range of effective therapies, such as
peer support services and psychotherapeutic and
counselling treatments, as well as pharmacological
interventions that are culturally appropriate and
effective;
– 
A workforce and organisation capable of delivering
appropriate and responsive mental health services to
Black and minority ethnic communities;
– More Black and minority ethnic service users reaching
self-reported states of recovery; and
– Increased satisfaction with services.
The characteristic, ‘a more active role for Black and minority
ethnic communities and Black and minority ethnic service
users in the training of professionals, in the development of
mental health policy, and in the planning and provision of
services’, is also addressed in this report, as follow-up work on
the project’s outcomes was conducted by the authors.
The remaining six DRE service characteristics are not
covered in this report, because there are very few – or no – data
in the community organisations’ study reports concerning
them. This is unsurprising, as they are characteristics
essentially describing actions by mental health service
providers: a reduction in the rate of admission of people from
Black and minority ethnic communities to psychiatric inpatient
units; a reduction in the disproportionate rates of compulsory
detention of Black and minority ethnic service users in
inpatient units; fewer violent incidents that re secondary to
inadequate treatment of mental illness; a reduction in the use
DRE Community Engagement Study Background, method and sample
section 3
of seclusion in Black and minority ethnic groups; the
prevention of deaths in mental health services following
physical intervention; and a reduction in the ethnic disparities
found in prison populations.
3.3.4 Recruitment of community organisations
to the project
To attract applications, details of the project were sent to
all the community organisations on the Centre for Ethnicity
and Health’s (CEH) extensive database; advertised on the
NIMHE website and in the CEH Community Engagement
Newsletter; and distributed directly to community organisations
via regional race equality leads (RELs – see section 3.1.5) and
the CEH community engagement team staff. In addition, some
RELs held seminars and/or meetings to assist community
organisations who wanted to prepare a proposal.
The information pack sent to applicants included a summary
of DRE and the ISCRI Community Engagement Model,
along with an application form and details of how each section
should be completed. The pack also contained further details
about the project and the tasks community organisations would
be expected to conduct (see appendix 2).
The application packs provided details of a contact at the
CEH who could be approached to provide further information
if required. Those who wanted assistance to complete the
application form were given the contact details of a CEH
community engagement support worker. Applicants were also
strongly encouraged to contact their local REL to discuss the
focus of their proposal and for assistance with the application.
3.3.5 Shortlisting
Over the three phases of the project, applications were
received from a total of 198 community organisations. These
were scored by regional race equality leads and FIS managers,
with input from the CEH community engagement team, and
shortlists compiled. The CEH community engagement lead
and the Director of DRE examined these shortlists to ensure
that they covered all the target FISs and a range of issues they
wished to investigate. The criteria used for the shortlisting
process are reproduced in appendix 3.
During the shortlisting process, preference was given to those
organisations operating within the boundaries of the FISs.
24
 section 3
Background,
method and sample

3.3.6 Interviews and final selection
Ninety-nine applications were shortlisted and the applicants
were invited for an interview with representatives of
UCLan and the relevant area’s race equality and focused
implementation site leads. Interviews lasted for approximately
45 minutes.
The interview panel asked the applicants for more details of
their proposal, especially surrounding the proposed study’s:
– relevance to DRE;
– research focus;
– process of engagement with Black and minority ethnic
mental service users, carers and/or community members;
– 
recruitment of the community researchers and their
attendance at the training sessions;
– budget; and
– anticipated outcomes for individuals and the community
organisation and the likelihood of sustainability.
The community organisations were also supported by a
community engagement support worker from UCLan, as
described in section 3.2.1.
The community researchers from the community organisations
participating in this project attended the training workshops
that were a mandatory element of this project. These were
provided by UCLan at several locations across England. The
training included basic information on aspects of mental
health, mental health services and local and national mental
health policies, and on relevant data collection and analysis
methods.
As well as providing community researchers with the relevant
skills to undertake their task, the workshops offered the
opportunity to form local networks and contacts. The first four
workshops were delivered to several community organisations
in an area, during which participants worked together, sharing
ideas and information. They met again later during their
projects to undertake the final three workshops and share their
experiences.

In some cases, discussion of the above issues led to the

interview panel suggesting minor amendments to the
community organisation’s proposal.
At the interview, applicants were also told more about the
training and the support they would receive.
Eighty applications, from 76 community organisations (four
conducted two projects each), were successful.

3.3.7 Training and support

Each community organisation was supported by a steering group
during their studies. In total, there were approximately 400
steering group members. Steering groups typically comprised:
– local service providers and commissioners;
– a regional DRE race equality lead;
– the area’s focussed implementation site (FIS) lead;
Community researchers from community organisations in the
– representatives from local primary care trusts and/or South West meet each other and UCLan staff at a workshop
mental health trusts; in Exeter, August 2006

– mental health service user representatives;

– a representative of the host organisation: and
– a UCLan support worker and other members of the
UCLan community engagement team.
A few steering groups included a psychiatrist or
psychotherapist, a strategic health authority equality and
diversity lead, and representatives of local social services
and public health departments. Some steering groups,
particularly those supporting studies of older people, included
representatives of national voluntary agencies.
After attending at least six of the seven workshops, the
community researchers could either receive a University
Certificate of Achievement or go on to enrol for a University
Certificate in Community Research or a University Certificate
in Community Research and Mental Health (section 5.1.1
reports on the qualifications gained by the community
researchers during the project). Researchers enrolling on the
latter two options were required to submit relevant assignments.

DRE Community Engagement Study Background, method and sample 25


Background,
method and sample
3.3.8 The community organisations’ data
collection methods
A total of 547 community researchers were recruited by the
community organisations to collect data for the project. They
comprised 331 (61%) females and 216 (39%) males. Of these,
48 (9%) were previous or current mental health service users
and nine were carers of service users.
A variety of research methods were used to collect data from
community members, with many studies using more than
one method:
– 
77 studies used face-to-face interviews, usually
conducted with two researchers in attendance, one
asking the questions and the other recording the answers;
– five studies used self-completion questionnaires;
– 32 studies conducted focus groups;
– seven studies included case studies;
– nine community organisations organised specific events
or seminars to collect data;
– one study recorded information using a video diary;
and
– two studies included clinical evaluation tools in their
studies (with advice from a qualified professional on the
steering group). One used the PHQ9 screening tool for
assessment of depression and the other used Clinical
Outcomes in Routine Evaluation (CORE).
A variety of research instruments were also used to collect data
from service providers and again, some studies used more
than one research method:
– 
ten studies asked respondents to complete self-
completion questionnaires;
– 
six studies interviewed respondents using a semi-
structured questionnaire; and
– four studies conducted focus groups and/or discussion
groups.
In addition, the community organisations asked their samples
for core demographic information (the results of which appear
in section 3.5), using questions devised by the CEH’s
community engagement team.
The community organisations’ final reports also included
details of the services provided by their organisation and
an overview of their local target population(s). Some also
conducted literature reviews on the issue they were
researching, several of which were extremely comprehensive.
DRE Community Engagement Study Background, method and sample
section 3
Commentary
In this commentary, Professor David Morris discusses the
harmonisation of the DRE and the social inclusion agendas
and how the community engagement approach employed to
collect data for the NIMHE Community Engagement Project
is crucial if both are to achieve their aims.
The social inclusion agenda
David Morris, Director of Inclusion Institute, ISCRI, UCLan
The principles which DRE (Department of Health, 2005a)
were to advance are closely related to those of social inclusion.
If DRE was to deliver on equality of access, experience and
outcome, inclusion outcomes require action also to reduce the
impediments to access and the negative personal experience to
which this so often gives rise. In describing the progress and
process towards delivering race equality, this report speaks to
the agenda for social inclusion and to the actions undertaken
over the same period to achieve policy goals which have
always been complementary. Moreover, in describing the
ways in which the imperatives of DRE have been addressed
at community level, this report describes the ways in which,
as part of that process, the imperative of social inclusion has
also been addressed.
As ‘equality in mental health services is not a new requirement’
(DRE, p.14), so the necessity of social participation as a vital
dimension in mental health is also historically rooted and
well-rehearsed in models for individual support and recovery.
The articulation of social participation in a policy on inclusion
is, however, a more recent occurrence, having been the subject
of the Social Exclusion Unit’s report of 2004, Mental Health
and Social Exclusion (ODPM, 2004). This report, based on
evidence – much of it the experiential evidence of service
users, gathered over the preceding 12 months – described the
exclusion associated with mental health as being multi-faceted
and cyclical: ‘Mental health problems can lead to a vicious
cycle of social exclusion, including unemployment, debt,
homelessness and worsening health’ (p.20) and it set a course
for addressing these complex and often inter-related problems
that the then Minister with responsibility for Mental Health
Services described as a ‘moral imperative’ (Winterton, 2004).
Mental Health and Social Exclusion sets a course for the
pursuit of this imperative in the form of 27 sets of actions on
employment, education and, as defined by the many life
domains in which it is realised (or, as frequently, denied),
community participation.
The task of creating the conditions in which these actions
could be implemented fell to the National Social Inclusion
Programme (NSIP). The programme approached this as an
enterprise in which a range of inter-connected activity at
national, regional and local level was to be stimulated through
the active involvement of many and diverse agencies,
connecting as partners, affiliates and wider stakeholders.
26

Background,
method and sample
Such an approach, in which close attention is paid to both
vertical and horizontal integration, is likely to be the hallmark
of any cross-cutting policy programme in a complex service
environment and this report evidences the case in relation
to DRE:
Many different organisations will need to be involved in
delivering the programme, reflecting the complex nature of
mental health service development. (DRE, p.40)
However, this breadth of participation creates its own
complexity; diverse action at many levels with multiple
stakeholders requires a clear vision and methodology for
securing change through optimal engagement and coherent
organisation. Without this organisation, it is unlikely that
outcomes will be sufficiently well embedded to endure. This
report on a community engagement project details the way in
which this condition was met through the application of
UCLan’s established community engagement approach. It
describes in detail the importance of the method to advancing
by 2010, the key characteristics of mental health servicesthat
are effectively meeting the needs of people from the very many
Black and minority ethnic communities identified within it.
Many of these characteristics are those of inclusion more
generally. More service users reaching self-reported states of
recovery; more involvement of service users in the training of
professionals and in the planning and provision of services;
a workforce and organisation capable of delivering appropriate
and responsive mental health services to communities – these
are all facets of effective inclusion-oriented services for all
communities. The reported experience of service users that the
major impediment to their own inclusion was the low
expectation by mental health professionals of what they might
themselves achieve (NSIP, http://www.socialinclusion.org.
uk/cross_cutting/index.php?subid=19) both resonates with
the impression of ‘years of mistrust’ reported by one of the
studies participating in the project reported here (section 4.1.1)
and signals the fundamental importance to an ‘appropriate’
service of a responsive and capable workforce effectively led
with service users. A workforce with the knowledge and skills
to deliver equitable care is a pre-condition of a workforce
with the ability to form the external community partnerships
necessary to enabling people to participate in the many
communities of which they are members. NSIP defined these
capabilities as part of a broader definition of required skills in
Capabilities for Inclusive Practice (Department of Health,
2007). In highlighting the skills identified by community
organisations as necessary to delivering race equality, this
report also makes a significant and complementary contribution
to the broader inclusion agenda.
The application and, in the process, the development of
the community engagement method that resulted in this report,
is critical, for its significance both in identifying and connecting
with communities in ways that would be otherwise impossible
and in generating new forms of accountability in meeting
DRE Community Engagement Study Background, method and sample
section 3
need (and the report is to be commended in revealing,
through personal and community accounts, the specificity of
this need in ways that are elsewhere often limited by
generalisation). Moreover, the community engagement
approach is fundamental to addressing the still unmet
challenge of stigma and fear between and within specific
communities and in this, this report again aligns with the
agenda for inclusion. Communities are important sites for the
social links, activity and various forms of social network by
which people’s views and behaviours can change positively
and confidence and trust (which the report identifies as being
a frequently cited issue for respondents) secured.
Service systems need to incorporate into their skills base
the ability to recognise, promote and play their part in
co-producing networks as settings within which fear can
be collectively ameliorated, new forms of reciprocity developed
and discrimination addressed. Beyond its core aim, this report
contributes to our thinking and vision on the role
of community engagement ‘in the round’, whether in relation to
the inclusion of Black and minority ethnic communities or
communities of service users more widely. A DRE aim is to
ensure ‘greater community participation in, and ownership of,
mental health services’ (DRE, p.60), but allowing local
populations by this means to ‘influence the way services are
planned and delivered’ (p.61) needs to go hand-in-hand with the
mobilisation of those communities and the social networks within
them as the means of generating new forms of mutuality and
understanding. While services are increasingly well equipped to
promote inclusion at the individual level, their positive potential
as partners in supporting inclusion as participation will be realised
by the extent to which they situate their role within an
understanding of cultural competence as comprising organisational
and individual aspects, which are interdependent (see the
commentary by Bashford at the end of section 4.3).
Policy on inclusion derived initially from Standard One of
the National Service Framework [NSF] for Mental Health
published in 1999 (Department of Health, 1999). In New
Horizons, the policy for the post-NSF future, we see a
central focus on community mental health and wellbeing
(http://www.dh.gov.uk/en/Healthcare/Mentalhealth/
NewHorizons/index.htm). As attention turns to this ‘up-
stream’ public mental health lens, it will be important to retain
and act on the findings of this report. Inequality of access to
service or mainstream opportunity based on specific forms of
discrimination, oppression and restriction remains a social
justice issue. It will need to continue to be specifically tackled
as community wellbeing is promoted. This report speaks to
the measures that will need to be taken and they are not short
term. While moving attention upstream, we will need also to
continue the process of service transformation, working with
excluded and marginalised communities, often, in the current
environment, the ‘downstream’ victims of a discrimination
which must be addressed. This report reflects richly the
learning required and provides to this task the clear direction
of its many community participants.
27

Background,
method and sample
3.4 Methods used to compile this report
This report presents an analysis of the data from the 79
studies from the community organisations that participated in
the NIMHE Community Engagement Project. The report
provides an overview of the issues that were explored by the
studies in relation to mental health problems, mental health
services and the vision of service characteristics set out
in Delivering race equality [DRE] in mental health care
(Department of Health 2005a). It identifies consensus and
divergence on experiences and perceptions of these issues
between, for example, members of different ethnic populations,
age groups and genders. Section 3.1 explained how the
community organisations’ studies were firmly set in the
context of the DRE vision of service characteristics for 2010.
• As described in sections 3.3.3 to 3.3.6, it was not intended
that the all studies should examine the same DRE service
characteristics(s), nor target samples with the same
demographics (such as age, gender, faith), nor with the
same experiences of mental health services. The number of
studies that addressed a specific characteristic does not
therefore necessarily indicate the issue’s relative
importance among Black and minority ethnic populations.
For example, a study addressing the DRE service
characteristic ‘less fear of mental health services among
Black and minority ethnic communities and service users’
that drew on the experience of a sample of community
members in which there was no mental health service user
representation could not be expected to report on the
characteristic ‘increased satisfaction with services’.
• The authors of this report systematically scrutinised each
study report to identify data relating to each of the
service characteristics. A chart for each of the issues raised
concerning each characteristic was devised in order to
compile an accurate overview of the findings. Direct
quotations from study participants and study reports were
selected for illustrative purposes.
• This process was repeated many times. This meant that the
authors of this report became very familiar with the content
of the 79 study reports and were therefore able to review
and validate each others’ selection of data and analysis.
• Data analysis was a complex and time-consuming
process because:
– 
A variety of research methods were used by the
community organisations (section 3.3.8) and data on
a specific issue were presented both qualitatively and
quantitatively. In addition, the total sample comprised
a wide variety of different ethnicities and age groups
(section 3.5). Their involvement with mental health
services was also very varied: some had none, others
had contact with services because they were caring for
someone with a mental health problem, while others had
used services for many years.
DRE Community Engagement Study Background, method and sample
section 3
– 
Many of the study participants, especially those in
studies using qualitative methods, did not discuss their
experiences and perceptions about mental health
services in terms that could neatly be allocated to one
of the DRE service characteristics. For instance, data on
‘less fear of mental health services among Black and
minority ethnic communities and service users’ were
also found in sections of study reports dealing with
cultural competence in terms of ‘a more balanced range
of effective therapies, such as peer support services and
psychotherapeutic and counselling treatments, as well
as pharmacological interventions that are culturally
appropriate and effective’ and in sections dealing with
‘a workforce and organisation capable of delivering
appropriate and responsive mental health services to
Black and minority ethnic communities’. In such cases,
the authors discussed and reached an agreement as to
which category the data best fitted.
• The data analysis process has ensured that the findings
presented in this report are firmly grounded in the data
received from study participants during the project.
• A short questionnaire was devised for community
development workers (CDWs – see section 3.1.2), to ask
if they were involved in the NIMHE Community
Engagement Project, whether they had seen any
improvements to mental health services as a result of it,
and if there were any obstacles that prevented these
improvements. The questionnaire was administered online
using SurveyMonkey, a tool that also analyses the results.
• Follow-up work on outcomes was conducted among five
individuals who had worked as community researchers on
the project. They provided accounts of their personal
experiences and of ‘what happened next’. In addition,
representatives of three community organisations were
asked to describe their organisation’s experiences since the
completion of their studies, including progress on the
uptake of their recommendations
• To locate the findings from this project in the context of
current mental health policy and practice, service provision
and other research, commentaries were elicited from
mental health experts at ISCRI and elsewhere. They were
asked to write a commentary on any aspect of the project
and/or the findings according to their specific expertise
and experience. Ten commentaries were received and they
are listed in appendix 6.
28
 section 3
Background,
method and sample

3.5 Sample characteristics 3.5.3 Mental health service users and carers
• One-sixth (935) of the community members reported that
The community organisations asked their samples for core they were current or ex-mental health service users. There
demographic information, using questions devised by the was, however, a wide variation in the type of service used,
Centre for Ethnicity and Health’s community engagement team. ranging from consultations with GPs for anxiety-related
conditions to long-term engagement with acute care services.
3.5.1 Sample size
The total sample size was 6,018, comprising 5,751 community • 344 (6%) described themselves as carers for a person with
members and 267 mental health service providers. a mental health condition.
• Not all the community members were asked if they
5%
were service users or carers, so it is likely that the
Community statistics above understate the actual proportion of these
members in the sample.
Mental health
service providers
935
Current or ex-mental
health service users

344 Carers

95% Other community

members

The data in sections 3.5.2 -3.5.10 apply to the community

member sample only (N=5,751) 4,694

3.5.2 Gender 3.5.4 Age range

Almost two-thirds of the community member sample Overall, the sample’s age range was wide (16 to over 80).
were female. 5,358 people (93% of the sample of community members)
reported their age as follows:
2,185
Female
Age range N %
16-21 591 11
Male
22-29 1,038 19
30-39 1,246 24
3,566 40-49 932 17
50 and over 1,551 29

including:
over 65: 317 (6%)
over 75: 117 (2%)
over 80: 38 (1%)
Totals 5,358 100

DRE Community Engagement Study Background, method and sample 29

 section 3
Background,
method and sample

Age range Ethnicity

317 155 591 391 Asian or

16-21
196 Asian British
1,079 22-29 342 Black or
Black British
1,038 30-39 1,955 White or
Other White
40-49
Chinese
50-65 831
Mixed
66-75
932 Other
1,246 76+ 1,173

3.5.5 Ethnicity 3.5.6 Country of birth

The sample comprised a wide range of ethnicities. Some
studies focussed on just one ethnic group, while others
included a variety. 4,888 people (85% of the community
member sample) stated their ethnicity, which was reported
as follows:
Asian or Asian British (1,955/40%)
This was the largest ethnic group in the sample. The
predominant group was South Asian: Pakistani (904), Indian
(580) and Bangladeshi (249). The remainder described
Data were collected on country of birth and the period of time
that participants had lived in the UK, in order to contribute
to the overall picture of the diversity of the sample. They are
presented here to illustrate the proportion to whom the UK
culture (including, for example, the English language and the
operation of mental health services) may be unfamiliar.
UK

themselves as Other Asian or Asian British. 34%

Elsewhere
Black or Black British (1,173/24%)
This group consisted mainly of Black Africans (726) and
Black Caribbeans (381). The remainder categorised themselves
as Other Black or Black British.

White and Other White (831/17%)

A wide range of ethnicities/origins comprised this category.
It included Gypsies – most of whom described themselves as 66%
Romany Gypsies (204), Irish Travellers (78), and a sample
described as ‘Gypsies and Travellers’ (141); Irish (179); and
Ashkenazi (Jewish – 50). Polish and other Eastern European
people were also included in this category.

Chinese (342/7%)

Mixed (196/4%)
The majority of this category was White and Black African
or White and Black Caribbean.

Other (391/8%)
This group included those who gave their ethnicity as
Cypriot, Iranian, Kurdish, Turkish, Turkish Cypriot,
Vietnamese and Yemeni.

DRE Community Engagement Study Background, method and sample 30

 section 3
Background,
method and sample

Around one-third of the community member sample had 3.5.8 Language

been born in the UK. Of those who said they had been The list below shows a total of 131 languages and dialects
born elsewhere: used by the community member sample. These were reported
– almost 50% had lived in the UK for 11 years or longer; as either their first language or those that they spoke and/or
wrote fluently.
– 15% had lived in the UK for between six and ten years;
Acholi African Dialect/Patois Afrikaans
– just over one quarter had lived in the UK for between
Akam Albanian Amharic
one and five years; and
Arabic Ashanti Ateso
– the remainder (less than 10%) had lived in the UK Aymara Azerbaijanian Bajuni
for less than one year. Bangladeshi Bangolia Barwanese
Bedi Begni Bemba
Length of residence in UK of those born elsewhere Bengali Bosnian Brava
8% Cantonese Cebuano Chewa
Chichewa Chinese Chiu Chow
11 years
or more Creole Czech Dari/y
Dutch Edo Efik
6-10 years
28% English Fanti Farsi
49% Fijian Finnish Flemish
1-5 years
Foula French Ga
Less than
1 year Georgian German Groati
Gujarati Gurung Hakka
Hausa Hebrew Hindi
Hoi Ping Hokkien Hungarian
15%
Ibo/Igbo Iranian Irish
Italian Kachi (Sindi) Kikuyi
3.5.7 Citizenship
Kinya-rwanda Kokni Kosovan
4,817 people (84% of the community member sample)
reported their citizenship: over two-thirds were British citizens.
Krio Kurdish Kutchi
Laos Lingala Lozi
Luganda Lusogo Mandarin
631 Marathi Mirpuri Musalati
British Citizen Ndebele Nepali Ngoni
Ni Bo Norsk Nyanza/ Nyanja
583 Refugee
Pahari Pampango Pashtu
Patwari Persian Polish
Asylum Seeker
Portuguese Pushto Punjabi
287 Other Romany Rukiga Russian
Rwandaise Scottish See Yip
3,316
Shangahainese Shona Singhalese
Sinhala Sindhi Slovakian
Somali Sorani Sotho
Spanish Swahili Swana
Sylheti Swedish Tagalog
The ‘other’ category includes those who were not British
citizens, asylum seekers nor refugees, but rather citizens of
Tamil Teluga Tgrina

other countries. They were living in the UK with, for example, Tgtina Thai Timini

a work permit, student visa, or exceptional leave to remain. Tigringo/Tigrinya Tshaba Turkish
Twi (Ghanian) Ukrainian Urdu
Vietnamese Wei Tao Welsh
Woloff Yiddish Yoruba
Zagawara Zulu

DRE Community Engagement Study Background, method and sample 31

 section 3
Background,
method and sample

The study participants were asked which languages they spoke
or wrote fluently and English was most commonly cited.
However, some studies noted that degrees of fluency in
English varied widely and that in some cases, study participants
may have claimed to have greater proficiency than they
actually had.
Differences between spoken and written levels of English
were reported. For example, in a study of mainly South Asian
participants, 97% said they could speak English fluently,
but only two-thirds of these had comparable ability in
written English.
Overall, the community members reported less proficiency
in writing their first language than speaking it. This was
compounded by some languages and dialects, such as Pahari,
being mainly in oral form, with a limited written version.
3.5.9 Faith and religion
5,156 (90%) of the 5,751 community members reported their
faith or religion, most commonly Muslim (46%), followed by
Christian (29%). Far smaller proportions reported that they
were Hindu (5%), Sikh (5%), Buddhist (3%) and Jewish (2%).
6% reported that they had no faith or religion. The remaining
4% included those who said their faith or religion was Ancestor
Worship, Jainism and Rastafarian.
3.5.11 Service provider sample
Seventeen community organisations included a total of
267 mental health service providers and other mental health
professionals in their studies. Some study reports simply
categorised service providers according to whether they
were statutory or voluntary service providers, others listed
them according to the type of organisation they worked
for, and some listed full job titles.
Representatives of voluntary organisations with mental health
provision were included in the samples of all 17 studies
and statutory, primary and secondary mental health service
providers were included in the samples of 16. Specific job
titles were given for some of these study participants:
– GPs participated in 9 studies;
– psychiatrists (5 studies);
– approved social workers (3);
– clinical psychologists (3);
– counsellors (2);
– nurses/community psychiatric nurses (CPNs) (2);
– psychologists (2);
– befrienders (1);

Muslim – child and Adolescent Mental Health Services (CAMHS)

4%
6% workers (1);
2% Christian
3% – community mental health care team managers (1);
5% Hindu – mental health key workers (1);

5% Sikh – police officers (1);

46%
– rehabilitation workers (1); and
Buddhist
– special education needs co-ordinators (1).
Jewish

29% None

Other

3.5.10 Sexuality
Community members were asked to state their sexuality.
There was a high level of non-response to this question,
with nearly a third of the sample refusing to answer it. Of those
who did, the vast majority stated they were heterosexual.
Only three women reported that they were lesbians and
twelve men that they were gay. Ten people reported that
they were bisexual.

DRE Community Engagement Study Background, method and sample 32


Key themes and findings
This section collates the findings from the 79 study reports
according to the DRE service characteristic(s) they addressed.
Data are presented on:
• Fear of mental health services (section 4.1).
• Effective therapies and interventions (section 4.2).
• Culturally appropriate treatment and interventions,
categorised according to the issues raised by study
participants in terms of mental health services’ cultural (in)
competence (section 4.3):
– language (section 4.3.1);
– faith and religion (section 4.3.2);
– food (section 4.3.3);
– gender (section 4.3.4);
– 
the ethnicity of mental health service staff (section
4.3.5); and
– racism in mental health services (section 4.3.6).
• The journey towards recovery (section 4.4).
• Service user and carer satisfaction with mental health
services (section 4.5).
• A more active role for Black and minority ethnic
communities and service users (section 4.6).
The project’s results on older people are then set in the context
of previous research and current policy (section 4.7), and
finally, relevant data from the Count me in census are presented
and discussed (section 4.8).
4.1 Fear of mental health services
Delivering race equality [DRE] in mental health care
(Department of Health 2005a) included the intention that by
2010 there would be ‘less fear of mental health services among
BME communities and service users’ (p.4). Many of the study
reports from the community engagement project reported here
included a statement that their work would contribute to this
aim and some studies specifically explored issues of fear with
their samples. Reducing these fears and thereby improving
access to mental health services was stressed as a priority by
many studies.
DRE does not specify what aspects of mental health services
members of Black and minority ethnic communities fear. This
section provides more information, by summarising the key
issues that the study participants raised on this theme.
It is clear from the study reports that fears differed according
to the level of participants’ experiences of mental health
problems and treatments. Community members with little or
no experience of mental illness reported that their biggest fear
was not what may happen to them in mental health services if
they sought help there, but rather the stigma, shame and the
DRE Community Engagement Study Key themes and findings
section 4
repercussions of these (such as the negative effect on marriage
prospects). It was stressed that this fear would prevent them
seeking help. However, for those who had direct experience
of services, particularly as inpatients, stigma had become
part of their landscape. Their previous experiences meant that
many feared re-engaging with services.
It should be stressed that not all participants who were asked
expressed a fear of mental health services. There is some
evidence that fear may not be a major issue for many Arabic-
speaking, Kurdish, Turkish and Yemeni study participants,
for instance, particularly males. Nevertheless, fear as a barrier
to service access facing members of Black and minority ethnic
communities was a recurring theme in the majority of the
study reports, with a significant number – including service
providers – reporting this.
A fear of mental health services – whether based on experience
or perception – was rarely reported in isolation. Multiple fears,
with complex connections to other issues were the norm.
These were strongly related to experiences and perceptions
of services’ cultural competence, especially in relation to
language, faith and religion (as discussed in detail in sections
4.3.1 and 4.3.2). As one study participant put it, ‘I can’t speak
English so if I needed to stay in hospital, what would the food
be like, I wouldn’t be able to speak to the nurses – I would be
very scared’.
4.1.1 Mental health service users’ fears
of re-engagement
The issue most often raised by mental health service users on
the subject of fear was their reluctance to re-engage with
services. They were particularly afraid that services would
breach confidentiality; of developing further symptoms and
illnesses after contact with other service users; and of being
over-medicated.
Seven study reports recorded powerful accounts of traumatic
experiences with mental health services, in which fears of
being readmitted to hospital and the associated loss of control
and enforced treatment were a strong theme. The frustration
and feelings of powerlessness can be summed up as follows:
– No matter what I did the community nurse wouldn’t
listen. Am telling the social worker that I feels much
better and I don’t need depot [antipsychotic medication,
administered by injection], they can give me tablets or
even some time on the ward so they can watch me and
see how I am... I get mad, mad now and tell the two of
dem that am not taking the injection, they call police
and hold me down.
– I take pills that make my mouth water, and pills that stop
my mouth watering make my neck stiff [and] the ones
that make me feel out of everything, like my mind is
slow….sometimes I just want to sleep and eat and talk,
but when I go for help I get injected and told I can’t
leave, so I don’t go.
33

Key themes and findings
• Several studies reported that service users with a history
of severe mental illness and inpatient treatment with
medication experienced difficulties in accessing other
treatment options, such as talking therapies. This led to
their fear of re-engaging with any mental health service
owing to concerns that medication or hospitalisation were
the only options on offer:
– Sometimes you phone the [mental health] teams and
you just want to talk, and they admit you into hospital!
• In a study of 40 men with mental health problems, a few
reported that they had stopped accessing primary health
services owing to a fear of what might happen – especially
being sectioned under the Mental Health Act 1983 – if they
divulged all their mental health issues and problems to
GPs and other primary care staff.
• A study of 42 women, mostly Black African and Black
Caribbean, the majority of whom had been inpatients,
reported that a quarter feared being mistreated and that
this would prevent them from re-engaging with services.
Examples of their previous experiences included being
given the incorrect medication and the subsequent erosion
of trust in mental health services, and insufficient aftercare
following a hospital stay.
• Several studies focused on Irish and Irish Traveller
communities. Fears of re-engagement based on previous
experience of mental health services were also noted
among these samples.
Confidentiality
The fear that their confidentiality would not be respected was
a common theme among mental health service users. One
study highlighted this issue with reference to the difficulties
they encountered in finding participants to take part in their
project. Service users were reported to be suspicious of the
work, and it was considered by the community researchers
that the fear reflected ‘years of mistrust’ built up while using
mental health services.
A fear of lack of confidentiality was particularly apparent
when study participants discussed talking therapies. While
these therapies were often highlighted as being a positive
way forward with which service users would like to engage,
fears were expressed that the session would not be kept
confidential, but shared with other mental health service staff:
– 
I feel happy with counselling but I don’t feel totally safe
with whom I am talking to, because my experience with
the services is that things come back to bite you.
–
I would rather talk to my cat than talk to a counsellor:
it’s about trust, at least my cat isn’t going to talk.
DRE Community Engagement Study Key themes and findings
section 4
The underlying fear of what may happen when information
is shared with other mental health professionals was not
made explicit by the study reports, but they indicated a concern
that information-sharing may lead to detention under the
Mental Health Act 1983 and/or medication against service
users’ wishes.
Developing further symptoms and illness
A few studies reported that some service users feared that
being among others with more severe mental illnesses (in an
inpatient facility, for instance) would negatively impact on
their own mental health:
–
People there may be worse than me and make me worse.
Previously I was in [hospital] and I started to copy the
others there and become like them.
Over-medication
Some service users commented on what they saw as services’
tendency to over-medicate. For example:
• A study of 61 Black African, Black British and Black
Caribbean service users and carers reported that
one-third described their experience of mental health
services as ‘frightening’. The fear of the use of medication
as the first response to mental distress was
a consistent theme throughout this study’s report.
A few of the participants said they were reluctant to engage
with services when they felt themselves ‘going off’ because
they did not want to be ‘injected’.
A service user from another study commented:
– 
Man they said I was mad, mad till I was dangerous…
what I say is I not mad, I sad and pissed off. I don’t
have the energy to do anybody anything… but I was
classed schizophrenic and injected all over the place.
The study reports included a few comments by service users
on the fear of people with mental illnesses that they sense
among staff, and that this leads them to administer high doses
of medication.
4.1.2 Community members’ fears of mental
health services
Many studies explored perceptions of mental health and
mental health services with community members who had
little or limited knowledge of either, but were reporting their
personal and cultural perspectives. Their fears were especially
concentrated on shame and stigma, but they also feared
not being understood because of their language, culture and
faith or religion; the Mental Health Act’s statutory powers;
racism; the lack of confidentiality; and the negative effect on
their employment prospects of being labelled ‘mentally ill’.
34

Key themes and findings
Shame and stigma
The fear of shame and stigma of having a mental health
problem was a recurrent theme in the majority of reports,
regardless of the ethnicity of the study participants.
For example:
• One study of over 160 people, from varied ethnic
backgrounds, found that a large majority would be
prevented from accessing mental health services owing
to stigma.
• A study of 80 women, most of whom were Muslim, found
that they were reluctant to use mental health services owing
to stigma, coupled with a reluctance to relive painful
past experiences.
• The main fear of three-quarters of a sample of 50 South
Asian service users and carers was that others would
discover that there was mental illness in their family.
• In a study of over 150 Pakistanis, just over half reported
that their community is ‘afraid of mental health problems’.
The vast majority would feel ashamed of any mental illness
and would want to keep it secret. Half the sample thought
that the reluctance of the Pakistani community to approach
services resulted from this fear (although language was
perceived to be the greatest barrier to service access, as
discussed in section 4.3.1).
• Half of a sample of 100 South Asian women, including
service users, felt there was ‘shame and dishonour’ in
asking for help with a mental health problem.
• Concerns about the negative impact of mental health
problems in the family on marriage prospects were
particularly reported from the studies on the South
Asian communities. Samples of elderly Chinese people,
Orthodox Jews and of Turkish, Turkish Cypriot and
Turkish Kurdish people also discussed this issue and how
the stigma of mental illness was a barrier to help-seeking
because it affected the marriage prospects of members of
both females and males in the family:
–
People will not talk about mental [ill] health as it
 Language and interpreters
will affect the marriage prospects of members of the
immediate family.
– 
Everything is hidden under the carpet. It is about family
shame and honour. If it’s a girl, she will not be able to
get married, if it’s a boy then what about his future?
• Two reports on Jewish people highlighted the issue of
stigma and the ramifications for family and community:
– People are not scared of the disorder as much as they
are afraid of the social reaction.
DRE Community Engagement Study Key themes and findings
section 4
Particular concern was expressed around mental health
problems impacting on Orthodox Jewish marriage
arrangements (shidduchim) and family reputation:
–
If you go to a professional from the community… here is
a fear, it might stop you from going to an Orthodox
Jewish counsellor... There is a sense of isolation… you
are scared that the Orthodox Jewish counsellor will sit
in judgement of you. The default mode is judgement!...
[the counsellor will] figure out which sect or family you
are from… that is why people opt to have no help.
• A study exploring the mental health care needs of elderly
Chinese people reported a taboo on sharing negative
emotions and the fear of being ‘looked down on’:
–
It’s a disgrace to tell others about your negative

emotions or problems in your family and [the Chinese
communities] fear to be look down by others.
• A study of young male prisoners from a variety of
ethnic backgrounds found similar concerns of stigma in
the prison population:
– 
I don’t want people thinking I’m off my head if I went to
a mental health service.
• Studies featuring Black Africans reported that ‘African
families fear the stigma of the “mental health” label’ and
that ‘It is un-African to seek help for stress’.
• The reluctance to acknowledge and seek help for a mental
health problem because of the shame and stigma led some
reports to express concern that mental health service
providers may not recognise that some Black and minority
ethnic patients are vulnerable to suicide. These reports
pointed out the relatively high rates of suicide among
young South Asian women and among young males from
the Black Caribbean, Black African, Kurdish and
Turkish populations. In addition, a study of asylum seekers
and refugees of a variety of ethnicities reported that suicide
was ‘mentioned frequently by respondents’.
Issues surrounding language, interpreters and translators is
discussed in detail in section 4.3.1. Fears of not being
correctly understood because of poor English language skills
were voiced in all the reports where study participants’ first
language was not English, but was particularly reported from
studies of elderly people. For example:
– One of the studies of Chinese communities reported
that the biggest fear in terms of accessing services was
language (with stigma, feeling ‘faceless’ and a lack of
trust of western medicine and health professionals
reported as lesser concerns).
– In a study of over 130 Bangladeshi people, almost half
were fearful of contacting services owing to lack of
trust, including of interpreters.
35

Key themes and findings
Many study reports noted that when interpreters were used in
mental health settings, there was fear that the translation might
not be accurate and would lead to misdiagnosis. In addition,
the fear that the interpreter might not maintain confidentiality
was voiced in some reports.
Cultural, faith and religious misunderstanding
Mental health services’ cultural competence – including issues
surrounding faith and religion – is discussed in detail in
section 4.3. Muslim, Bangladeshi and Jewish study
participants particularly feared that cultural, faith and religious
misunderstanding might result in incorrect diagnoses and
that services would be overly reliant on western medicine’s
diagnosis and treatment modes. For example:
– 
Treatment must be made within the parameters of
our [Jewish] religion, otherwise the clash within the
patient’s mind between his [sic] culture and his
treatment would exacerbate the problem, not help it.
Several reports highlighted the conflict between mental health
services and their sample’s belief in ‘black magic’ and jadu
(or jadoo) and possession by jinn. For example:
– 
Mainstream services offer services that cater mainly
for white people, therefore understanding particular
problems of Asian [belief in] jinn possession/nazar
(evil eye) etc will not be understood by doctors,
psychiatrists and counsellors.
Several studies among Muslim communities documented the
reported reactions to Muslims by others because of violent
extremism (particularly the so-called ‘post-9/11 syndrome’
and the associated negative image surrounding Islam). Links
were made in some studies between this and a diagnosis of
mental illness:
– 
I personally feel we’re categorised as mentally ill…
when you get a little bit passionate about what you
believe in you’re seen as getting a bit crazy… like they
see you as you’ve lost the plot.
– To be constantly portrayed in the media the way we
are… I do think as soon as you walk into a mental
health service then you are dealing with this, because
that’s how you are seen.
The tension between religious beliefs and psychiatric practice
was a recurrent theme in two studies of Orthodox and Ultra
Orthodox Jewish communities. One of the reports noted that
the Jewish Torah states that it is a sin to be unhappy and that
this may make it difficult for people from these communities
to acknowledge mental health problems:
–
Questions arise for the individual as well as the family,
as the obligation of any Jew cannot be upheld leading to
the question ‘what is my role in this shameful illness and
what shall I do about my not feeling happy?’
DRE Community Engagement Study Key themes and findings
section 4
Furthermore, it was felt that a lack of understanding, and even
a clash, with Jewish outlook/law (haskafa/halacha) could be
problematic in terms of diagnosis and treatment. For example,
one respondent noted the importance of hand washing as a
halacha and the potential for elements of this to be
misinterpreted as obsessive compulsive disorder (OCD) by
those who do not understand the detailed prescriptions of
halacha. These fears were reported to lead to a resistance
by Jewish people to engage with services.
Statutory powers
One study explored fear of the statutory powers of the
Mental Health Act 1983 as a barrier to Black and minority
ethnic people accessing services, heightened by a lack of
knowledge of the powers of the Act. There were different
fears according to study participants’ ethnicity: the Arabic-
speaking and Portuguese samples feared never being
released from hospital; Chinese people feared being treated
with unnecessary force; and Polish respondents were most
concerned about medication, particularly being given
unnecessary or incorrectly prescribed medication.
Another study, of 234 asylum seekers and refugees of a
variety of ethnicities, reported that:
–
Respondents expressed genuine fear and anxiety about
approaching people in mental health services for fear
of being sectioned.
Racism
Overall, the study participants were more likely to report
fear about services’ lack of cultural competence than of
overt racism. However, the exception was among studies with
young people, where negative stereotypes and perceptions of
mental health service staff were held by some:
–
Racist people work there [mental health services] and
will try and drug you up.
Further discussion of perceived and experienced racism in
mental health services can be found in section 4.3.6.
Confidentiality
Among those who were not mental health service users,
fear about a lack of confidentiality was a particular issue for
asylum seekers, who thought that accessing these services
would adversely affect their asylum applications. For example,
a study of 100 asylum seekers and refugees found that more
than half feared that information shared with mental health
services would not be kept confidential.
A study of 141 Gypsies and Irish Travellers also reported fear
of lack of services’ confidentiality among the participants.
36

Key themes and findings
Adverse effect on employment
Several study reports highlighted the fear of accessing services
as being rooted in the belief that future work prospects would
be adversely affected if the jobseeker had a record of mental
health problems. This was a particularly strong concern for
young people.
The community organisations’ recommendations to
address fear of mental health services can be found in
section 6.1.
4.2 Effective therapies and interventions
The DRE vision of service characteristics for 2010 included
‘a more balanced range of effective therapies, such as peer
support services and psychotherapeutic and counselling
treatments, as well as pharmacological interventions that
are culturally appropriate and effective’. Nine hundred and
thirty-five mental health service users participated in this
project, but as the 79 studies were not intended to be clinical
surveys, the diagnosis and the effectiveness of treatment of
individuals were infrequently reported in a consistent manner.
Nevertheless, many mental health service users and their
carers were asked what they thought about the treatment
they had received. Data are reported in section 4.4 on their
self-reported rates of recovery, and in section 4.5 on their
satisfaction with services. This section concentrates on the
different treatment modalities and the perceptions and
experiences of those receiving them in terms of the balance
of therapies and their effectiveness. Some data on the cultural
appropriateness of treatment and interventions are presented,
but this issue is discussed in greater depth in section 4.3.
Data are also presented on services from voluntary and
community organisations. These may or may not be labelled
and funded as ‘mental health support services’ and included
the provision of opportunities for socialising, befriending and
participation in activities such as outings, lunch clubs, exercise
and discussion groups. These were highly valued and perceived
by mental health service users as effective additions to their
treatment and by other community members to maintain their
mental wellbeing.
DRE Community Engagement Study Key themes and findings
section 4
• Study participants and the community organisations
strongly criticised the reported unbalanced approach to
treatment, with an over-reliance on medication. The data
on this issue can be best summarised by the following
extracts from a study among members of a variety of
ethnic populations, showing how a more balanced range
of effective therapies could be achieved. They were
asked what they thought were the most important
features of effective mental health services and their
responses included:
–
More counselling, less medication;
– People should progress and be healed, not just kept
on medication;
– 
Holistic services, not just dependent on medication
as treatment;
– Good drugs, some physical treatments such as massage;
– Plenty of therapeutic activities such as singing, drama
and social activities;
– Offering a whole range of treatments and support which
are socially, culturally, and spiritually appropriate;
– Compassionate staff;
– Staff with smiles on their faces;
– Staff who are caring, who develop and gain patients’
trust;
– Spend time with the patient;
– A caring service that will take the time to listen to me;
– Let people talk;
– To have a choice about my care;
– A flexible service that can meet my needs, gives me
time and is willing to listen to me;
– Outings to various places; and
– Lots of leisure and recreational activities.
• The reports of studies among South Asian women who
had experienced domestic violence, Irish Travellers,
Gypsies and asylum seekers emphasised that, for some,
reaching the goal of effective treatment was unachievable
because the situation that contributed to their mental health
problems remained unchanged. For example:
– Studies of South Asian women experiencing domestic
violence and mental health problems also reported that
some of them did not think any treatment was effective
under those circumstances:
– Despite using tablets for depression, I do not feel
any relief because I am still experiencing domestic
violence.
37

Key themes and findings
– A study of Gypsies and Irish Travellers reported that
an underlying cause of mental health problems among
them was that they had to live in ‘bricks and mortar’.
The study detailed several instances where the only
effective treatment was moving back into a trailer:
– We moved into bricks and mortar. After a short time
being on our own away from friends and family,
which we were not used to, I found myself in a
distressed state. I went to the local doctors who gave
me prescribed drugs for my nerves [but] I did not
settle in the 9 years that we were there... I had two
nervous breakdowns so we decided we would buy a
trailer... I am very happy to be back in my trailer with
my own kind.
– Several studies of asylum seekers provided horrific
accounts of the reasons some of their study participants
had left their home countries. In addition, they reported
that the UK asylum-seeking process was causing them
severe distress (see section 4.3.4, for example). These
asylum seekers reported that these experiences had
adversely affected their mental health. Because of these
and their fear that their applications for asylum would
be rejected and they would be forced to return to their
home country, many of them believed the effectiveness
of any treatment to be limited.
4.2.1 Self-reported effectiveness of medication
The study participants’ perceptions and experiences of
medication to treat a mental health problem was a recurring
theme throughout the 79 reports. This issue is also discussed
in section 4.1.1 in terms of mental health service users’ fears
of being over-medicated; in section 4.4.2, which reports that
only a quarter of a sample of 22 service users thought that
medication was a factor that facilitated their recovery; and in
section 4.5.2, which reports that the issue of what medication
is prescribed, and under what circumstances, greatly influences
levels of satisfaction with mental health services. This section
presents an overview of perceptions and experiences of the
effectiveness and cultural appropriateness of treatment with
medication. This issue was raised in around half of the
study reports.
The ‘easy option’?
Several studies summed up their findings by asserting that
treatment with medication alone was the ‘easy option’ for
mental health services and strongly criticised what one study
called a ‘one size fits all approach to treatment’. As one study
participant put it, ‘I have been on anti-depressants for 11 years.
My treatment is all about swallowing pills’. For example:
DRE Community Engagement Study Key themes and findings
section 4
• Six Black Caribbeans and two Black Africans recounted
their experiences of mental health services in one of the
studies, showing that, as the report summed up:
– 
The focus was on medication to calm the individual
and control the signs and symptoms of their illness.
Pressure on bed-spaces meant that the least ill were
discharged ‘patched up’, without the underlying cause
of their distress being resolved.
• A study among 50 South Asian service users, carers and 30
mental health professionals concluded that medication was
used because it was the cheapest and easiest treatment option:
– 
There was a view that prescribing drugs seems less
costly compared to longer term intervention ‘particularly
when you are not sure what to do anyway’, said one
of the professionals.
• Some of the participants in a study that included community
members from a variety of ethnic groups concurred:
– 
I think it’s easier for them [for service providers to
prescribe medication only]. Because obviously it’s more
expensive to offer counselling and stuff... and to give
people medication without offering any of the services
to go with it, I think it’s diabolical.
The effectiveness of medication
Across the 79 studies, regardless of ethnicity, a majority of
the mental health service users who had been prescribed
medication reported that it was effective (although, as
discussed shortly, many experienced unwanted side-effects):
– The tablets given relieve my tension and calm me down,
I can sleep well now.
– I feel better when I take my medicine. I am very sad
when I don’t take my medicine.
– When I don’t take it my mental health is unstable and
I feel ill. When I take it I get better.
– Minimises voices, reduces paranoia and makes me feel
calmer.
– Felt I was blind without the medication, now I can
suddenly see the person I am and everything makes
sense, I feel back to normal.
– When you take depot injections you have less chance of
a relapse.
– I feel better, no more headaches, anger is controlled
more.
– The medication helped calm me down and give my
feelings a boost.
– It [medication] improved my mental state. I was able to
express my feelings and understand why I felt so anxious
and worried.
38

Key themes and findings
• A small minority of those who had been prescribed
medication reported that it was ineffective or that it made
their mental health problem worse. This group included
those who had been taking it for many years:
– Medication helps for short periods of time. Sometimes
makes you more depressed in my opinion... gets to a
period where the body does not take it anymore.
– I think having injections is tortuous. I have been having
injections for 20 years and I still have to have them –
it means that the medication is not effective.
• A few of the Black African, Black Caribbean or Black
British study participants who had been sectioned under
the Mental Health Act 1983 and reported that they
had been ‘forced’ to take medication also reported its
ineffectiveness. They believed that ‘they just use the
medication to control us’.
Side-effects of medication
Regardless of whether or not they thought their prescribed
medication had been effective, the majority of the study
participants who had been using it reported unwanted
side-effects.
• For some, the effectiveness of the medication outweighed
the side-effects. For example, one study included 53 mental
health service users from a variety of ethnic backgrounds
who were taking medication at the time they were
interviewed. Just over half were satisfied with it, despite
almost two-thirds of them saying they experienced
‘negative’ side-effects.
• However, for other mental health service users, across the
reports and from many different ethnic groups, the physical
and, especially, the mental side-effects of their medication
outweighed the benefits:
– My ankles were swollen and my arms, it even affected
my vision and I became overweight.
– I am not sure if I tried to kill myself because of me,
or because of the medication.
– 
Mood off, feel lazy, unmotivated, not interested in
anything, skin rash.
– It makes me feel in a good vibe and helps me feel normal,
but I feel paranoid when the effects wear off.
– 
It makes me think clearer but it also feels like...
everything is happening in slow motion.
– I call them cobweb tablets, it feels like you have cobwebs
all over your face when you take them.
DRE Community Engagement Study Key themes and findings
section 4
– [It] was very peculiar, because I would go down the
street... and I would have this medication inside of me
and things would not appear normal any longer, they
were always affected, and so it was all slightly surreal,
and I was being told this would be pretty much the
accepted way of life... that I would be drugged up and
would keep walking around like this and slightly
drooling and stiffness in joints... that is the cure, that is
how someone in their 20s or 40s or 60s is expected to
be for the rest of their life.
• The following conclusion by one of the study reports was
echoed by several others:
– For some people, medication had been beneficial and
there were some improvements. However, because of
the suppressive nature of some medication, the natural
personality of individuals was affected and their true
identity tainted.
4.2.2 Choice and combination of treatments
Regardless of whether or not they thought that their medication
to have been effective, the majority of the mental health service
users who had been treated only with medication reported
that other and/or additional therapies would have made
their treatment more effective. However, it was clear that a
choice and combination of therapies were not routinely offered
to service users, as one study, of Black African, Black
Caribbean, and Mixed White and Black African or
Caribbean male service users, summed up:
– 
Despite the mounting evidence that an integrated
approach is imperative, the medicalised outlook seems
to retain its dominance... there should be a much better
choice provided to service users by offering more
complementary therapies and leisure activities.
• Examples of the lack of combination and choice of
treatment include:
– A study of 50 South Asians with current or previous
mental health problems reported that:
– A whopping 69% of the targeted population was not
offered any choice in their treatment plan.
– A study that included 37 male South Asian mental
health service users reported that 25 (68%) of them
had not been offered any alternatives to medication.
– Of a sample of six Black African asylum seekers and
refugees who had accessed mental health services, only
one had been offered a choice of treatment (included
counselling and relaxation techniques).
– There were 25 mental health service users among a
sample of Somalis and they reported that they wanted
a choice of treatment. The study report described this
choice as ‘crucial’ to ‘increase the possibilities of
recovery and non-medical interventions’.
39

Key themes and findings
• Across the studies and the different ethnic groups, there
were countless comments from participants who wanted
a choice and combination of treatment, of which the
following are only a very small example:
– 
Psychiatrists should listen to patients more and get
them into therapy, not just give them tablets.
– They just want to prescribe you meds, that’s always
the issue, I just don’t go now, I found different
coping mechanisms now... I knew I needed to speak to
somebody [counsellor].
– The medicines gave me a lot of side effects, but it did
help me to relax. I would have liked to see a counsellor
for longer as that was helping me.
– 
She [doctor] gave me tablets, but they didn’t help
much – they just give you tablets for any problem,
no alternative care.
– [Treatment should be] other ways than just giving out
tablets – we need long term help.
• Several studies reported that many of their samples of
mental health service users – particularly those who
were older – were not content to accept medication only.
For example, a study among Polish, South Asian and
Ukrainian people aged 60 reported that they wanted
‘different varieties of therapies such as counselling, yoga,
acupuncture, stress management, meditation’:
–
Although many of our sample group participants are
not formally educated, they are well-informed of the
potential harm and side effects of certain drugs, either
through family members or friends. In the past couple of
years more and more people have become exposed to
the benefits of alternative and complementary therapies.
Therefore, participants are willing to try out new ways
of healing.
However, the report added, ‘the findings highlight that in
general mainstream services are lacking a holistic approach’.
4.2.3 Talking therapies
Talking therapies are defined by the NHS as counselling,
cognitive behaviour therapy (CBT), and psychoanalytic
or psychodynamic psychotherapy. These therapies (for
individuals and groups) are provided by psychologists,
psychiatrists, counsellors and psychotherapists, and in some
cases by social workers, community psychiatric nurses
and nurses. Some voluntary organisations also provide
low cost or free counselling services (http://www.dh.gov.uk/
en/Publicationsandstatistics/Publications/Publications
PolicyAndGuidance/DH_4008162). Although the overall
impression from the study reports is that many mental health
service users were unaware of the differences between the
different talking therapies, the majority nevertheless thought
that their treatment with medication would be more effective
if it included ‘someone to talk to’.
DRE Community Engagement Study Key themes and findings
section 4
Self-reported effectiveness of talking therapies
There were far more positive than negative comments from
mental health service users, regardless of ethnicity, gender
and age, about the effectiveness of talking therapies (in both
community and clinical contexts). For example:
– [The counsellor] is really helping me to reach my goals.
I have received a lot of help... it really helped my mental
wellbeing.
– You need talking therapies, counselling, to get to the
bottom of the problem, to find out about the cause of
your problem and then to try to treat through talking.
– It [counselling] allowed me to discuss my problems
openly and confidently, also allowing me to realise I
was not alone in feeling how I did.
– I had counselling offered by my GP. It is really good.
I was in denial about my illness and it made me see
things in a more positive way.
• As discussed in section 4.5.9, the effectiveness of talking
therapies was reported to be greatly dependent on the
therapist’s cultural competence, especially whether or not
they and the patient could communicate in the same
language and the therapist understood the patient’s
culture. One of the study reports put it as follows:
– 
[There can be a] ‘clash of culture’ between mental
health professionals and service users, which inhibited
an ‘opening up’ by the service users. Although the
importance of talking was emphasised [by study
participants], it was said that not everyone wants to talk
to a counsellor where the ‘clash of culture’ may emerge.
• Many study participants qualified their enthusiasm for
talking therapies by stressing that cultural competence
was key:
–
All I want and need is to talk to a therapist that shares
my culture so that I can unload. It is easier to talk to
someone who knows and understands the culture. It is
so stressful trying to explain the social and cultural
taboos to people from a different culture.
• Nevertheless, talking therapies were commonly cited as
an effective alternative or addition to treatment with
medication only. For example:
–
We would rather talk about stuff than just be prescribed
a pill... I don’t really want the pills, I just want to talk
about how I feel and just want to be understood.
– GP can only treat you with medication but you cannot
share easily every problems or talk to them about the
past which is disturbing me.
– I was crying out for counselling, but my GP did not
suggest it.
40

Key themes and findings
– No one had time to listen to my problems at the hospital...
There was one really nice nurse who did listen but she
was generally too tied up with hectic ward life to have
time to listen.
 s discussed in section 4.3.4, several studies of male mental
A – Although the participants within the focus group had
health service users reported that they had enjoyed the
experience of talking about their mental health and service
experience for this project and found it therapeutic, resulting
in their desire for more talking therapy. One of these studies,
among South Asian service users, reported that 33 of the
sample of 37 agreed that counselling would be helpful to them:
–
The men themselves feel that this would be far more
effective than having tablets and injections.
• One of the studies, among Black African, Black British
and Black Caribbean service users, pointed out that early
provision of talking therapies may avert admission to
hospital. While acknowledging that medication may be
the first and only treatment option when a patient seeks
help or is admitted to hospital, because their mental health
is then at its worst, the report stressed that if ‘alternative
options [are] offered earlier, then possibly admission could
be avoided’:
–
There was some discussion about having a safe system
in place to assist vulnerable people before they go into
crisis, because it’s far too easy to get into the mental
health system... [one study participant] was referred to
a ‘crisis house’ for a very short period where he was
allowed to talk and work through the crisis resulting in
early discharge and not yet another [inpatient] statistic.
• Several reports reported that those with mental health
problems stressed the importance of family support as an
element of effective treatment and that family counselling
would support and enhance this role. For example, a report
on a study of elderly South Asians commented:
– 
Better results can be achieved if doctors also work
with the patient’s family to administer holistic
health treatment.
Self-reported ineffectiveness of talking therapies
Section 4.5.9 reports that a minority of mental health service
users did not see talking therapies as necessary nor effective,
especially Black Africans, other asylum seekers and refugees,
and Irish people, including Travellers. For example:
• One study noted that most asylum seekers in the UK
‘come from cultures in which the detached introspection of
talk therapy is an alien activity’.
DRE Community Engagement Study Key themes and findings
section 4
• A study among Black African, Black British and Black
Caribbean mental health service users reported a distrust
of services’ confidentiality (see section 4.1.1) as a reason
for the reluctance to accept treatment with talking therapies:
tried alternative therapies, in particular counselling, a
number felt unsafe in disclosing too much to the mental
health services as they were unsure how this information
was going to be used in the future.
• A study among asylum seekers and refugees reported
that those who had received counselling thought it was
effective only ‘if it provided something practical’, such as
the counsellor writing a letter to the immigration authorities
to support an application for asylum.
• Irish Travellers were included among the sample of
one study, which stressed the ineffectiveness of both
talking therapies (for individuals and for groups) among
that community:
–
We recorded, particularly within the Irish Traveller

community, many instances of inappropriate treatment
that caused additional stress to the service user and
had no success whatsoever. Travellers do not easily
discuss personal problems – even in their own
community. There is, therefore, no point in sending
a suicidal, depressed and traumatised Traveller to
[service] for group counselling. They will not make it
past the front door.
• Comments on the ineffectiveness of talking therapies
from a study participants from a variety of ethnic
groups included:
– Talking, talking and more talking. No help at all, seeing
different people all the time and explaining over and
over again.
– I had trouble admitting it [mental illness] to myself…
the counsellor is not any help.
– I did not feel comfortable with the counsellor... I just
was not able to connect to her and felt very uncomfortable
after 10 minutes with her.
– When people talk about their problems to me [in group
counselling sessions] it makes me feel even more upset.
41

Key themes and findings
4.2.4 Complementary and ‘alternative’ therapies
Twenty of the 79 study reports discussed complementary or
so-called ‘alternative’ therapies. Ten of these were reports on
studies of older adults, the majority from the South Asian and
Chinese communities.
A minority of the study participants with mental health
problems were asked if complementary therapies would
be – or had been – effective in treating these problems.
They cited a range of such therapies, including traditional
Chinese medicine, traditional healing practices, Reiki,
Ayurvedic therapy, acupuncture, massage, meditation and
various occupational therapies (faith healing is discussed
in section 4.3.2). As shown in section 4.5.10, those who
had received these therapies expressed a great deal of
satisfaction with them.
Chinese study participants
Five study reports (three of them focusing on people aged 50
and over) discussed the use of complementary therapies among
Chinese people, especially traditional Chinese medicine.
Traditional Chinese medicine was defined by one of the study
reports as focussing on improving the flow of energy in the
body, and ‘may include practices such as herbal medicine,
acupuncture and moxibustion [use of the mugwort herb to
warm areas of the body], and tui na (deep massage). Treatments
can offer some relief from depression, stress and anxiety’.
It was clear that complementary therapies were popular
among Chinese people (particularly the older generations).
For example:
• A study that included 13 Chinese mental health services
users reported that their preferred treatments included
Chinese herbal medicine and acupuncture in addition to
‘western medication’ and they wanted these therapies to
be integrated into mainstream mental health services.
• One quarter of a sample of 20 Chinese mental health
service users aged 50 and over said they would consider
using complementary therapies (especially herbal
remedies) to treat their mental health problem.
• 56% of a sample of 50 elderly Chinese people agreed that
‘mental and psychological issues are a sign of the internal
imbalance of the body’, although they were discouraged
from using traditional Chinese medicine to treat their
mental health problems because of the expense:
– If the Chinese herbal doctor is free like GP, I might
consider using Chinese herbal medicine.
DRE Community Engagement Study Key themes and findings
section 4
• Two studies of elderly Chinese people reported that some
of their participants thought Chinese herbal remedies,
homeopathic remedies and acupuncture were effective
treatments for mental health problems or for maintaining
mental wellbeing. These studies also reported that:
– 
The [Chinese herbal] doctor would always ask about
my mental wellbeing even if I went for a physical health
issue. My GP never asks this question so I never talk
about it [mental health] to my GP.
South Asian study participants
Eight studies, five of which were among older people, reported
on complementary therapies among South Asians. Between
them, a small minority of the samples had used a range of
complementary therapies, citing Reiki (a form of spiritual
healing using ‘universal life energy’ channelled through the
practitioner to the recipient) and Ayurveda (a system of healing
that utilises diet, detoxification and purification techniques,
herbal and mineral remedies, yoga, breathing exercises,
meditation, and massage therapy as holistic healing methods).
Some study participants said they had experienced positive
effects on their mental health after using these therapies, which
were also valued because they were reported to have no
unwanted side-effects.
However, it was also reported that it was difficult to access
Ayurvedic medicine via the NHS and that it took a long time
for the benefits to be felt. As one of the studies of older South
Asians concluded:
– Most used Western medicines but a few also utilised
Indian or Ayurvedic medication. It was however
perceived to be slow to take effect and not so readily
available on the NHS and not really recognized by
the medical profession.
Nevertheless, overall, around one-third of the South Asian
study participants in the studies that discussed the issue of
complementary therapies thought that they should be included
in a choice of culturally appropriate treatments for mental
health problems. For example, in one study, of 40 South
Asian male service users, 21 (53%) wanted herbal medicines
and/or acupuncture to be added to their current treatment and
reported that members of their community routinely brought
herbal medicines back to the UK when they visited South Asia.
42

Key themes and findings
Black African, Black British and Black Caribbean
study participants
The issue of complementary therapies was discussed briefly
by Black African, Black British and Black Caribbean
mental health service users in five studies. These study
participants wanted an increased use of these, particularly as
alternatives to the medications they were currently using.
Although few were specific about the types of complementary
therapies they had received and their effectiveness, music and
art therapies, herbal remedies and swimming and relaxation
therapy attracted positive comments. In addition, a study of
Somali service users noted the reliance on ‘traditional
healing’:
– Traditional healing has been practiced in Somalia since
time immemorial. It is still today the only medical care
accessible to the vast majority living in rural areas.
Even in the cities, traditional healing practices have
a prominent role. Trained medical physicians may be
consulted only if the traditional medical practitioner
fails in his/her performance.
Other ethnic groups
Several studies among ethnic groups other than those noted
above reported on the use of, and preference for complementary
therapies among their samples, demonstrating a belief in
their effectiveness:
A minority of a sample of 19 older Vietnamese
– 
mental health service users thought that other
Vietnamese people in their age group would use
various complementary therapies, especially massage
and mediation, to treat their mental health problems.
– Two mental health service users in a study of Irish
people had accessed art therapy and both found it to
be effective.
– A study that comprised 85 older Bangladeshi, Chinese,
Nepalese, Indian and Pakistani people with mental
health problems reported that 92% said that if offered,
they would take up complementary therapies such
as homeopathy, meditation, acupuncture, massage,
Traditional Chinese medicine, tai chi and yoga,
especially instead of, or in addition to their prescribed
medication.
– 12% of a sample of 65 Black African, Black Caribbean
and Bangladeshi mental health service users used
complementary therapies. In the same study, a focus group
of five Black Caribbean male service users wanted their
treatment to include massage and acupuncture.
DRE Community Engagement Study Key themes and findings
section 4
• As discussed in section 4.5.10, a study of asylum seekers
and refugees included a clinical comparison of the
effectiveness of counselling and gardening therapy
among twelve men (from a variety of countries) who
were experiencing symptoms of Post-traumatic Stress
Disorder (PTSD). The gardening therapy was found to
be the most effective, and the men found talking therapy
more distressing than helpful:
– The CORE [Clinical Outcomes in Routine Evaluation]
assessment also revealed that the gardening therapy
had a direct better therapeutic effect than the
talking therapy.
• As the report summarised, gardening allowed them to
concentrate on doing something rather than reflecting on
their experiences. Comments from the men include:
– This is important as I sometimes do not want to speak
and working in a garden helped me move away from
my thought.
– The garden has changed my life. I feel like someone,
a human being. I feel listened to and understood. People
here are very kind.
• The study report concluded that the comparison provided
evidence that traumatised asylum seekers may need
services that are not in a ‘western orientated format’,
including in cases where English language skills are poor:
– 
It may be more appropriate to use non-talking
therapeutic approaches as a first step engagement.
Different approaches may include art, drama, music,
sport and other forms of occupational therapy... arts
and crafts, drama therapy, gardening, sports, pottery
and any other physical activity. An aim should be to
address the wider framework of mental health issues
by reducing isolation and giving people a purpose
through these activities/reduce their levels of anxiety
by engaging in purposive learning social activities.
4.2.5 Social interaction and participation in activities
As discussed in section 4.4.2, a sample of 22 Black African
and Black Caribbean mental health service users thought that
being engaged in meaningful activity, ‘keeping busy’ and
doing ‘normal’ things were key factors in their recovery from
mental illness. This echoed many study reports that summed
up participants’ perceptions of what would be effective in
treating their mental health problems:
– 
The respondents are looking for ‘one that works’,
a service/resource that captures a whole range of
needs. Respondents described this as ‘something that
helps us reintegrate back into society’, ‘peaceful’,
‘feel accepted’, ‘feel loved’, ‘stronger voice’, ‘social
activities’, ‘discussions about anything’, ‘befriending to
reduce isolation’, and to ‘feel part of the community’.
43

Key themes and findings
The overall message from the study reports is that these needs
should not be viewed separately from medication and talking
therapies in terms of improving mental health. As a study of
asylum seekers and refugees pointed out, recounting their
trauma via talking therapies was a treatment option, ‘but not a
necessity, as gaining the simple functioning tools to survive
through one’s distress/depression/anxiety were more essential’.
The majority of the reports – across ethnicity, age and gender
– clearly showed that social interaction and taking part in
activities was thought by mental health service users to
maximise the effectiveness of their prescribed treatment: the
majority of service users and also non-service users who
reported that they had mental health problems said that some
of their symptoms had been alleviated in this way. In addition,
ex-service users and those who had never had contact with
mental health services stressed the effectiveness of formal and
informal socialising and participation in other activities as a
means to maintain their mental wellbeing. The benefits were
reported to accrue whether or not the social interaction or
activity was described as a ‘mental health support service’ or
a ‘peer support group’ provided by a mental health service,
or were the result of self-help initiatives.
Perceived effectiveness of social interaction
and participation in activities
The study reports were replete with participants’ accounts
of how social interaction and participation in activities had
been beneficial to their mental health. The following is only
a small selection of their experiences:
– [Mental health service] users and carers were most
resourceful in utilising a wide variety of means to
support themselves with their mental health and in
their caring role. Some of these were self-generated
and some were part of formal service delivery. Social
activities were valued, both in the home and outside,
as well as outings and longer trips... Others kept
physically and mentally active with exercises, classes
and hobbies, TV and the internet. (Report on a study
of elderly South Asians)
– Since I have been coming into [community organisation]
my mental health has improved a lot. I am glad that they
have been there to support me even when I lived out
of the area. I have improved a lot since seeing other
African Caribbean people like myself. Staff are a good
help if I need anyone to talk to.
– As discussed in section 4.3.4, the positive benefits of
women’s groups was particularly reported by South
Asian women with mental health problems.
DRE Community Engagement Study Key themes and findings
section 4
– When a sample of South Asians aged 50 and over were
asked what they liked about attending community centres,
drop-ins and day centres, the following comments were
typical:
– I like to talk to other people and knowing that other
people have the same problem as me.
– Performing yoga, making new friends and going out.
– A study of 68 elderly Chinese people reported that:
–
Findings indicated that the elderly luncheon club

had certainly enriched the life of the Chinese elderly.
They often expressed they were happy that they could
socialise with others or play mah-jong with their friends
when they came to the luncheon club.
• The value of social interaction and activities as treatment
for mental health problems is underlined by the many
requests for them from the study participants when they
were asked what they wanted from mental health services.
For example:
– 
As discussed in section 4.3.4, men’s groups were
requested by Black Caribbean, Bangladeshi, Somali
and South Asian mental health service users. A sample
of Bangladeshi men requested this after taking part in
a focus group:
– They found the approach of the focus group wonderful
in that they were listened to. They said it was the first
time they had such a good experience where they
were respected and given dignity... They said it made
them realise that they could help and support each
other.
– There are no places to go, don’t want to go to mental
health places. Want to go to social clubs where there
are lots of activities and things to do. Things to look
forward to where there are people of all ages and
backgrounds. (South Asian)
– For me, it would be more social settings such as
drop-ins, groups, so that it’s a way in to services
without being called a service as such, so it’s based
on a social activity with the added thing of building
relationships, trust, self-esteem. (Irish)
A study among Black African, Black British and
– 
Black Caribbean mental health service users
reported that:
– Several spoke about the lack of practical help to
develop an active, fulfilling life on their return to
the community... There is a need for constrictive
‘meaningful’ activity for most people... There was a
feeling that life/survival skills were important and
that doing something practical/participative or group
activities, would create variety.
44

Key themes and findings
– Several studies, among females, males and a variety
of ethnicities and age groups, reported a great need for
a befriending service. For example:
– [I want] somebody to talk to, even for an hour.
– [I want] the daily help to chat, besides household
help.
– Someone you can sit and talk to and who would
understand you, know all about what is happening
with me.
– I didn’t have somebody there [in hospital] I could go
and talk to, and say ‘I am feeling this way about life’.
– A study among ex-mental health service users from
a variety of ethnicities reported that they thought
their treatment in hospital would have been more
effective if they could have participated in activities
that mentally stimulated them and addressed their
loneliness and isolation.
– A study among Kurdish, Turkish and Turkish Cypriot
people thought that mental health service development
should include leisure, social and cultural activities.
The role of voluntary and community organisations
The central role of voluntary and community organisations in
providing the means of social interaction is clear from the
above extracts from the study reports. A major reason for this
is that those attending could be certain they would meet others
who would understand their culture, language and religion, as
most of those community organisations that participated in this
project were set up for members of specific Black and minority
ethnic populations. As two of the study reports stressed:
– 
Theoretically, professional [mental health] expertise
holds out much promise, but on the basis of participants’
experience, this is not always fulfilled in reality. A strong
attachment... has built up around the various community
associations in [area] and their meeting places. Many
participants view these venues and avenues as preferred
sources, not only for practical information, but also for
practical and emotional support... What has hitherto
functioned voluntarily must now be acknowledged and
vigorously promoted.
– Staying at home alone makes people feel distressed and
lonely. With the support and services offered by
community centres, it allowed them to stay active,
socialise with friends who speak the same language
and share a similar cultural background.
DRE Community Engagement Study Key themes and findings
section 4

Study participants agreed and the following comments
were typical:
– I think there is quite a lot of support in this centre... this
centre does offer a lot of things for people. They can just
sit here and can have food from the menu, can come
here for a cup of tea, join little groups like flower
arranging to keep your mind occupied. When you get
depressed you need to do something like that to help you
get out and also to mix with people with similar
situations, not to talk about being depressed but mixing
with people with similar interests - that sort of motivates
you. You need to motivate to get you out of depression.
– We come to socialise at the centre for one day [a week]
and it makes us feel good. There should be more days
for us to socialise. We don’t like sitting at home.
• The social interaction and activities provided by community
centres were reported to be beneficial to mental wellbeing
by almost all those who discussed this issue, particularly
(but by no means exclusively) elderly people. For example:
– A study among 50 elderly South Asian people reported
that:
–
Almost half the respondents were Asian elders

who lived alone. Many had expectations that they
would be living in an extended family network in
the same accommodation. The impact on wellbeing,
their dreams and hopes of being looked after as they
grew older was very difficult to come to terms with.
– One South Asian community organisation operated
several community centres and although they did not
offer formal mental health support services, they held
various social events, including lunch clubs and summer
excursions. Their study of older South Asian people
(aged 50 to 88) concluded that ‘it is clear that the
services are recognised as being helpful in promoting
peace of mind and mental wellbeing’:
– They [study participants] felt that they were heavily
reliant on support and services of these centres. They
felt welcomed, safe and supported using facilities at
these centres. They were able to make friends and
take part in religiously and culturally supportive
environments. This also provided a valuable respite
for family members.
A study among older Chinese people pointed out
– 
that there is a culture of self-reliance among this
population, and that ‘they are more likely to seek help
and support from the Chinese communities than
government services’.
The community organisations’ recommendations
concerning a balanced range of culturally appropriate and
effective therapies can be found in section 6.2.
45

Key themes and findings
4.3 Culturally appropriate treatment
and interventions
A culturally competent service operates effectively in different
cultural contexts so that the needs of all members of their
target population can be met by equitable access, experience,
and outcome. The DRE vision of service characteristics for
2010 addressed this by calling for treatment and interventions
that are ‘culturally appropriate’ and ‘a workforce an
organisation capable of delivering appropriate and responsive
mental health services to Black and minority ethnic
communities’.
The data from the study reports presented in this section and
the subsequent recommendations from the 79 study reports
(section 6) add up to a strong need for greatly increased cultural
competence by mental health services.
This section is structured according to the practical issues
raised by study participants in terms of mental health services’
cultural competence (or, more usually, the lack of it, although
some examples of good practice were reported): language,
faith and religion, food, gender, the ethnicity of mental health
service staff and racism in mental health services. It is not
intended to suggest that these categories comprise the entire
range of the elements defining cultural competence, nor that
they exist in isolation from each other or from the issues raised
in other sections of this report.
The data in this section, gathered from all the ethnic groups
that participated in the project, illustrate the complexities of
achieving the DRE visions of the service characteristics
‘treatment and interventions that are culturally appropriate’
and ‘a workforce and organisation capable of delivering
appropriate and responsive mental health services to BME
communities’. The critical responses to the DRE framework
(Department of Health 2005a, pp.76-77) include:
– Cultural competence or capability was a sophisticated
process that really needed radical reform in training,
in continuing professional development, and in the way
organisations undertook their roles. It was not a toolkit,
a quick fix, or an accredited training course that only
practitioners or only white people needed.
Several of the study reports also recognised this. As one
of them put it:
– There are no short cuts and all health professionals
must be prepared to take more time to understand,
empathise and work competently with Black and
minority ethnic communities.
This issue is elaborated in the commentary by Jonathan
Bashford at the end of section 4.3.
DRE Community Engagement Study Key themes and findings
section 4
• A plea for cultural competence in mental health services
was a very common request from study participants
and from the community organisations (as evidenced
by the recommendations in section 6), although many
did not define ‘cultural competence’ or concentrated on
only a few issues, such as language, religion or gender.
One of the studies pointed out the limitations of their
piecemeal approach:
– [When designing the research instrument] we seemed
to have defined culture in institutionalised criteria –
language, diet and religion/spirituality. On reflection
at the end of the project, there were other categories
which were relevant and would have provided a
more detailed insight into culture and mental health
services. e.g. music, hair care, personal care,
superstitions, traditions, family/social relations etc.
Several study reports reflected on the meaning of cultural
competence in more depth. For example:
– Service users and service providers have differential
understanding of the scope of cultural needs. For
example, the service users consider personal care, food
provision, spirituality, or configuration of social
relations as part of their culture. On the contrary,
the service providers merely include language and diet
in their interpretation of cultural need.
– 
Cultural competency in mental health services
provision is much more profound than tokenistic
gestures of providing prayer corners or meeting
dietary requirements i.e. provision of halal [permissible
according to Islamic law] food etc. Deep-rooted
centuries of old cultural and religious values –
belief systems, should be considered at diagnosis and
treatment stages.
– De-contextualisation of people from their experiences,
culture, notions of their self, religion and spirituality
leads to inequalities in mental health services.
• As the data in sections 4.3.1 to 4.3.4 reveal, it cannot be
over-emphasised that this project’s study participants
wanted their language, faith and religion and their dietary
and gender requirements to be understood by mental
health service staff during their diagnosis, treatment and
aftercare: as several reports put it, ‘feeling they matter’,
‘feeling they are respected’, and feeling that that mental
health service staff ‘had made an effort to find about their
culture’. Some service users appeared to be resigned to
the current situation, however:
– Some stated that the current levels of support they were
receiving was the most they could expect and hope for
given the language and cultural barriers, and the lack
of awareness and understanding of Asian mental health
issues on the part of the families, the wider Asian
community and mental health services.
46
 section 4
Key themes and findings

• The samples of several studies included service providers
who worked in areas with relatively low numbers of
Black and minority ethnic populations, or where these
populations were new in the area (asylum seekers or
migrant workers, for example). They therefore had little
(or no) experience of working with these client groups. In
a sample of 26 service providers in a rural town in the far
south of England, for example, five thought that nothing
needed to considered when engaging with the local Black
and minority ethnic communities:
– All referrals are treated the same – no group is given
preferential treatment.
– We already treat everyone as an individual and tailor
their care to their needs.
• Some of the project’s participants recognised that it is
difficult for service providers to understand all aspects of
their culture. For example:
– It was a generally held view [by study participants] that
with regard to the values and beliefs system of Asian
communities, professionals can hardly scratch the
surface – it is difficult to reach the deep rooted value
systems and their experiences. The Asian communities...
realise even if these values and beliefs are cause for
concern, these are not up for questioning.
– The research finds that while it is perhaps quite easy for
the current providers to make an effort to meet African
and Caribbean dietary needs, it would be more difficult
for the current service to meet more complex needs.

The study report commented:
– 
Service providers should improve their knowledge
about the local population. Service providers should
not assume that if they have no Black and minority
ethnic clients then there is no need to reflect Black and
minority ethnic individuals’ needs.
Comments from study participants on this issue included:
– We understand that we are living in the UK, but just like
we follow their rules and regulations for things, they
need to try to understand that we cannot change our
culture and tradition because this is what we have been
taught/brought up with.

However, it should not be assumed that cities with large – The psyche has not changed, it has been transplanted
and established Black and minority ethnic populations into a foreign place.
have ‘got it right’. A study that took place in a city in the
• One of the reports discussed the limitations of current
East Midlands with a higher proportion of Pakistani,
training in cultural competence or diversity:
Chinese and Black Caribbean people than England as a
whole reported that: – NHS staff may feel the amount of essential knowledge
about BME groups and individuals is overwhelming –
– 
[The city’s mental health services] have a limited
and it probably is... often the information requested and
understanding of cultural needs and they, many
conveyed [during training] was religious and general
participants said, emphasise merely language and
cultural practices; often about ‘dos and don’ts’ with
disregard dietary, religious, emotional and medical
certain ethnic groups/cultures/nationalities.
needs of the service users of Black and minority ethnic
communities. Many of the study reports recommended that cultural
competence could be achieved by the involvement of Black
Consequently, as one study participant put it:
and minority ethnic community members and community
– Every time I go to the doctor I am asked if I need an organisations in cultural competence training for mental health
interpreter, even though my first language is English. service staff. That said, many were not specific about the
To me this shows that language is the only cultural nature and content of the training that they could provide.
need the services are concerned about.

Another study, in a London Borough in which the Black

and minority ethnic population in three wards comprises
over half of the total population reported that:
– There are still those professionals who believe that ‘The
mental health system should not be specific to any
certain culture but to have a normal standard of values
of this country’ – a very assimilationist view and a colour
blind view expressed by another professional saying ‘All
clients are treated the same and given the same support
and service... I think service providers are meeting needs
otherwise users will not use [service]’. These kinds of
comments do not take into account the appropriateness
of the services, level of satisfaction with the services and
under use and lack of access to the services.

DRE Community Engagement Study Key themes and findings 47


Key themes and findings
4.3.1 Culturally appropriate treatment and
interventions: language
This section details the issues raised by the studies concerning
language: the effect of the language barrier on mental health
and on diagnosis and treatment, literacy, cultural and medical
terminology, interpreting and translating services, and
learning English.
• The mental health service workers that service users and
their carers and families may communicate with include
receptionists, GPs, interpreters, counsellors, nurses, social
workers, community psychiatric nurses, care workers,
psychiatrists, psychologists and psychotherapists. They
may also need to read items such as information about their
illness and treatment, letters of appointment, instructions
on taking medication and its side-effects, and care plans.
• The action plan in ‘Delivering race equality in mental
health care’ (Department of Health 2005a, pp.38-75)
includes that all mental health services (clinical, support,
information and advocacy services) must be linguistically
appropriate because access to services and patients’ role in
their recovery ‘can be restricted by language difficulties’
(p.65). Language-specific measures in the action plan
include:
– strategies such as joint commissioning to ensure adequate
investment in linguistically appropriate independent
advocacy services;
– 
patient Advice and Liaison Services (PALS) to be
equipped to deal with different languages;
– provision of information in different languages;
– fulfilment of the NHS Plan commitment to provide
a national interpretation and translation service, so
that all NHS organisations can access a telephone-based
interpretation service, British Sign Language interpreters
and a service for the translation of written material such
as documents, leaflets and websites;
– dissemination by NIMHE of good practice examples on
the use of languages other than English; and
– patients’ language to be recorded by services along with
other demographic data.
DRE Community Engagement Study Key themes and findings
section 4
• As shown in section 3.5, this project identified 131
languages and dialects in which the sample of community
members reported fluency. In some studies, few of the
participants’ first language was English and in others,
although participants could communicate in English, they
preferred to do so in their first language. For example, a
study of 167 people (mainly women) from a variety of
Black and minority ethnic populations reported a total of
22 first languages among the sample. Two translators were
attached to this study and the questionnaire was translated
from English into six other languages. In such instances,
the value of the ISCRI approach to community engagement
(section 3.2) is clear: community researchers who can
speak the relevant language(s) are recruited from the
communities being studied.
• There is some evidence from the study reports that
satisfaction with mental health services was greater
among those who could communicate effectively in
English, those whose service providers spoke the same
language, or those who were satisfied with their interpreters.
However, the problems experienced by those whose first
language was not English were discussed in some detail
by 60 (76%) of the 79 study reports. The remaining 19
studies’ samples consisted of members of ethnic populations
whose first language was English and they were not asked
questions on this issue (their samples comprised Black
Africans, Black Caribbeans, Gypsies, Romany Gypsies,
Irish people, Irish Travellers, Mixed White and Black
Caribbeans, Orthodox Jews, and White British people).
Nevertheless, many of these studies – and others that
included members of these populations – commented on
poor literacy among their samples and their lack of
understanding of the jargon and terminology used to
describe mental health problems and treatment.
• Language was identified as one of the major barriers (or, in
some reports, as the major barrier) to mental health service
access by a large proportion of service users, carers,
community members and service providers. The need for
information and interaction in a language they could
understand was very commonly expressed:
– We need somebody to translate and interpret so that we
can understand them and they can understand us.
48

Key themes and findings
For example:
In a study of 152 Pakistanis, 120 thought language was
–
the largest barrier to service access.
– 
One study included 24 people who had direct
professional experience of people from Black and
minority ethnic communities with mental health
problems. They were asked about the barriers to service
access faced by these populations and more of them
identified language as the largest barrier than any other.
– 81% of a sample of 132 Bangladeshis thought that
language was a barrier to mental health service access.
• This section also discusses how communication difficulties
can be exacerbated when interpreters are used and when
there are cultural differences between the communicators,
worsened by the stigma, embarrassment and shame
surrounding mental illness.
A study participant bluntly noted that ‘If people can’t speak
English, they are in trouble’ and, as two of the reports
summed up:
– Problems with language...ranged from simple language
problems to more complex interaction difficulties,
possibly due to cultural differences. Misunderstandings,
incorrect assumptions and a simple lack of communication
on both the service providers’ and at times the service
users’ sides are central to the research findings. This
theme appears at every interaction with services.
– Language barriers and thus poor communication lead
to lack of awareness [of mental health problems and
services] and then mistrust of the treatments available.
Effect of the language barrier on mental health
Members of Black and minority ethnic populations who do not
speak English reported that this led not only to loneliness and
isolation, but also to embarrassment, feeling intimidated and a
fear of being thought ‘stand-offish’, ‘big-headed’ and,
particularly ‘stupid’ and ‘ignorant’:
– General public think you’re not clever enough – you are
measured by your English.
– It is to lose face [in the Chinese communities] if you
cannot communicate with the English.
Almost one-third of the 79 studies reported that the inability
to speak English was a major factor in the social exclusion
of a large proportion of their samples and that this adversely
affected their mental health.
DRE Community Engagement Study Key themes and findings
section 4
This was particularly (but by no means exclusively) reported
among some Black Africans and the older generations of
Chinese and South Asian people. For example:
• Asylum seekers from Somalia reported that the trauma
that led to their migration was compounded by being
unable to communicate in English on arrival in the UK.
A service provider commented on this in terms of
young people:
– I think the language barrier is a potential cause of
mental health problems because it’s extra stress for the
students who come to the school or are new arrivals
who haven’t experienced school before and they have
got to learn to communicate with other students and
learn the school curriculum. They can’t do this if they
can’t speak English very well. The longer it takes them
to learn English it just keeps that stress level going.
• A study of dementia among 72 older Chinese people and
their carers stressed that ‘the language barrier was singled
out as the major difficulty that the Chinese older people
encounter in their daily life’.
 Another study of the elderly Chinese population also
reported that they thought language was by far the biggest
issue to affect them in their lives, and that not understanding
English caused them ‘to feel anxious and stressed’.
• Several studies of the South Asian communities pointed
out the social exclusion experienced by their study
participants (especially elderly people) who could not
speak English.
 In addition, a sample of South Asian male inpatients
who could not speak English reported the isolation they
felt because they could not communicate with anyone on
the ward.
• A study of 77 people from Yemen reported that 36 (47%)
thought that the inability to communicate in English was
one of the major issues that had affected their mental
wellbeing over the previous twelve months.
• The effect of the language barrier on the mental health of a
sample of Kurdish, Turkish and Turkish Cypriot people
was summed up by two study participants as follows:
– The biggest problem we experience is the fact that we
can’t speak English… you receive a letter but you cannot
understand it. When you are unable to solve simple
problems, you feel depressed.
– With the language I am very depressed that I can’t help
my children with their homework, I can’t dial a number
to talk to a friend or make an appointment if I needed. I
wish to be a confident mother and woman, I want to go
shopping and catch a bus that I know where it is going.
49

Key themes and findings
• Two studies among Kurdish, Turkish and Turkish
Cypriot people and one among Somalis reported that
parents felt stressed about raising their children in a
country whose language they do not understand, especially
in terms of accessing support for their families from health
and social services.
Effect of the language barrier on diagnosis
and treatment
The reports identified communication difficulties throughout
the journey through mental health services, including at the
start, when a person tries to explain their symptoms. These
difficulties were perceived to lead to incorrect diagnoses and
inappropriate and unsuccessful treatment. As three of the study
reports concluded:
– Being diagnosed relies largely on individuals explaining
their experiences, yet few health services provide
consultations in languages other than English. As this
might mean that the doctor cannot uncover enough
information about the person, they may be incorrectly
diagnosed.
– Potentially, difficulties and problems may have been
misunderstood or misrepresented and this could
jeopardise appropriate and effective treatment. It can
also create a barrier to effective and trusting
relationships between service user and professional.
– [The study’s findings] suggest that successful treatment
is very much contingent on language competency.
In addition, among a sample of professionals, five of seven
psychiatrists, three of four police officers, one of four GPs and
one of four nurses thought that language was ‘a significant
factor in making a person from an ethnic minority more likely
to be sectioned than treated voluntarily’.
The misunderstandings generated by the language barrier
between service users and service providers can also impact
negatively on the treatment that service users receive. This was
particularly reported in terms of counselling:
– [I had] six sessions with psychologist that I didn’t like
because my English language wasn’t good enough, so I
didn’t understand everything.
– I used the services of a counsellor only once. She did
not give me much help because I could not understand
what she was saying… I was not able to answer her
questions properly.
A few study participants thought that patients who need an
interpreter do not get offered talking therapies and many
pointed out that this treatment option is of course not open
to those for who speak a language for which an interpreter
cannot be found.
DRE Community Engagement Study Key themes and findings
section 4
Literacy
Fourteen of the studies reported that varying proportions of
their samples – from a variety of ethnic backgrounds – were
unable to read and write in any language. In such cases, the
community researchers helped participants to read the
information sheet and consent form that were mandatory
elements of the project.
The study participants whose literacy skills were poor
comprised a wide age range and a variety of ethnic groups,
although illiteracy was most common among elderly people,
especially those from the Yemeni and Chinese communities.
For example, a study of 68 elderly Chinese people reported
that half could neither read nor write in English and almost
one-third could not read or write the Chinese dialect they
spoke because:
– Most respondents were originally from the rural areas
of Hong Kong or Canton province where their chance
to access education was relatively low, therefore it is
not surprising that a high proportion of the respondents
are illiterate.
Illiteracy was also reported among those whose first language
was English – Black Caribbeans, Black Africans and
Gypsies and Irish Travellers.
The consequences of illiteracy were identified as:
mental health service clients ‘falling through the net’
– 
because they cannot read letters of appointment and
care plans;
failure to take medication correctly because they cannot
– 
read the instructions;
– failure to claim benefits and other services for those
with mental health problems and their carers because
applications forms cannot be understood and
completed; and
– contributing to a lack of confidence to access health and
social services.
Cultural and medical terminology
As one study report noted, ‘The expression of feelings can
differ greatly when translated from one language to another’
and different cultural ways of expressing mental health
problems may mean ‘the doctor may not pick up on the
subtleties’. For example, it was stressed by one study report
that ‘things are done differently in Asian culture. It is not
considered normal to talk about your problems’.
50

Key themes and findings
Problems relating to the cultural and medical terminology
surrounding mental health and mental health services became
apparent when the community organisations translated their
questionnaires into the languages of the target samples. Many
studies (particularly those concerned with the South Asian
communities, especially elderly people) reported how the
community researchers had discussions to ensure that ‘certain
concepts and phrases were applicable when translated and not
“lost in translation”’ in order that they obtained meaningful
responses. They reported that this was more time-consuming
and difficult than they had envisaged because, for example:
– In the South Asian communities there are no terminology
for schizophrenia, bipolar, anorexia nervosa and manic
depression etc.
There is no direct translation of ‘mental health’ in
– 
Punjabi nor Urdu.
For some English words relating to mental health,
– 
there is no equivalent in Somali, and the community
researchers ‘had to develop a new and particular
terminology’.
– Many [Muslim] participants felt comfortable in using
alternative terminology which they found helped
describe their experiences and expressed their emotions.
Islamic terminology was used to describe alternative
forms of healing and support.
– 
[We translated the questionnaire] from English to
Arabic… we also had to translate from Arabic to Arabic
due to the Arabic language containing several dialects,
intonation and difference in meaning.
The community organisations’ work on translating
questionnaires and clarifying terminology was clearly
worthwhile. It not only meant that those who did not speak
English or whose English vocabulary was only basic were
included in study, but also that study participants were able
to understand exactly what they were being asked and, as one
study reported:
– 
In many instances, the quality of the responses
significantly improved whenever terms from the
appropriate community language were used to explain
and clarify key concepts.
A majority of the study reports made the point that, even if
they spoke and read English, their samples found the medical
terminology used by health service staff made it difficult to
understand descriptions of mental health problems (including
their own), services and treatment. This was the case even for
those who reported that they were fluent in English:
– Jargon – you just don’t understand them [doctors]. And
I speak the same language.
– To explain what’s wrong with you, even in your own,
first language is very difficult, so for others who struggle
with English, that must be really hard.
DRE Community Engagement Study Key themes and findings
section 4
Given the results reported in this section, it is unsurprising that
a commonly expressed need, regardless of ethnicity and age,
was for information about mental health and mental health
services – whether in English or another language – to be
jargon-free and simply worded.
It should be noted here that several studies, particularly those
among Black Africans and Black Caribbeans, commented
on the misunderstanding of the term ‘mental health’. As one
study summed up:
– One of the main findings from this study was the
significant amount of people who misunderstood the
terms ‘mental health’ and ‘mental illness’ (32% from the
faith group, 32% from general public and 100% of focus
group)... People thought the terms ‘mental health’ and
‘mental illness’ meant the same thing and said they
referred to people who were not in their right mind... We
found the term ‘mental health’ was often being used as
a short way of saying mental health problems.
Interpreting and translating services
(Note: an interpreter translates orally or by signing and a
translator interprets written text).
Issues surrounding interpreting and translating as factors
affecting access to metal health services and the treatment
experience were discussed in some detail by the 60 study
reports that included aspects of language in their
investigations. Translation and interpretation were seen as
core issues that service providers must address because, as
one study report stressed:
– 
[Current] interpreting services did not seem to be
solving the language difficulty in using primary and
mental health services. This unmet need has led to
frustration, stress, disappointment and a feeling of
being treated unfairly.
Although a small minority of study participants were satisfied
with the interpreting and translating services they had received,
the study reports reveal significant unmet needs, regardless of
ethnicity, among those (especially elderly people) whose first
language is not English. The evidence includes the following:
– One study included 76 Kurdish, Turkish and Turkish
Cypriot men who had used mental health services
themselves or who had relatives or friends who had.
The study reported that, ‘They all complained about the
lack of opportunity to find a mental health worker or
psychologist who can speak their language and pointed
out the difficulties of talking via interpreters’.
– A study of 42 elderly people of a variety of ethnicities
reported that of the 32 who needed an interpreter to
talk to their GP, 26 (especially women) had not been
offered one.
– 70% of a sample of 33 elderly Chinese people said they
needed an interpreter at health services and a further 9%
said they sometimes did.
51

Key themes and findings
– 75% of a sample of 50 elderly South Asian people and
54 carers reported that they had not had an interpreter
during consultations at a GP surgery or hospital and had
found it difficult to understand what was being said to
them. Almost two-thirds of them would have accepted
the offer of an interpreter had they been asked.
– It was reported from a sample of asylum seekers and
refugees that some service providers were reluctant to
provide services to people who could not speak English,
‘unless they could bring their own interpreters’.
– Over three-quarters of a sample of 71 South Asians
who cared for someone with mental health problems
reported a lack of language support by mental health
services.
– Some older people wanted very practical help from
translators and interpreters: ‘someone to read our
letters, make sure we know when the appointment is
and make sure there will be an interpreter there’.
– Of 12 mental health service providers in a town with an
estimated 500 Yemeni residents, nine had no information
in Arabic about mental health or their service.
– Among a sample of 25 service providers in a city with
a significant Black and minority ethnic population,
none had any information translated from English into
other locally used languages.
The majority of the studies in which the participants’ first
language was not English stressed the lack of information in
other languages about mental health and mental health
services. Service providers also reported and recognised the
need for translated information. The following comment is
typical of those from service users and carers across a variety
of ethnic groups:
– 
I cannot read English, so I don’t know what the
information given to me says. Why can’t they produce
the information in Urdu or have someone from the
Asian community to inform the carers who cannot
speak English, so that they know about what services
exist for carers and where to go for help, because I was
struggling on my own for the past five years.
Of course, translated information is of no use to those unable
to read the language(s) they speak. Therefore, the need for
information in various oral media (such as DVDs and telephone
helplines) was voiced by many study participants.
The issues discussed by the study reports on the theme of
interpreting and translating are reported below and comprise
the shortage of interpreters, the lack of confidence in
professional interpreters, insufficient time allocated for
consultations using interpreters, the language of mental
health service staff, the use of family and friends to interpret
and translate, and interpreting and translating services for
service users’ families.
DRE Community Engagement Study Key themes and findings
section 4
Shortage of interpreters
The studies reported a shortage of interpreters, including in
some dialects, such as Syhleti (a Bengali dialect) and the
Chinese dialects Hakka, Shanghainese and Ni Bo. Budgetary
constraints were cited by some service providers as explaining
this shortage. The lack of availability of interpreters was
commonly reported by the study participants who needed this
service and was a source of worry and concern, in some cases
aggravating their mental health problems.
The major consequences of the shortage of interpreters were
reported as:
– Waiting times for appointments of up to two weeks
while an interpreter is booked.
– Appointments were rearranged and cancelled at no (or
short) notice because a booked interpreter had become
unavailable or simply did not turn up.
– Some patients had a different interpreter at every session
but would have preferred to have the same one rather
than to have to reveal their mental health problems to a
succession of strangers.
– 
Interpreters were not made available for regular
meetings with social workers and other support workers.
– When an interpreter was not available, patients who
could not communicate in English could not use a
service on their own and, as discussed shortly, relied on
family and friends to interpret.
– A lack of readily available interpreters made patients
feel uncomfortable when accessing services.
Those who spoke some English reported attempts to
communicate with service providers without an interpreter.
However, this was reported as being a far from ideal solution
and led to frustration from patients about not being able to
understand nor be understood:
– Doctor tries to reassure but it is of no benefit to me as I
do not know what he is saying. Medication is repeatedly
going on and the problem is unchanged.
– GP just act that he understand me, but I am sure he
is not.
A small minority of the study reports considered the difficulties
faced by interpreters. There were a few reports of interpreters
being allocated to a patient they could not understand because
they could not speak the dialect of the language they had been
asked to interpret. It was also recognised that some medical
jargon, mental health treatment concepts and staff’s job titles
were difficult to translate, especially for interpreters who were
not trained in mental health service issues.
52

Key themes and findings
Lack of confidence in professional interpreters
Many study participants had little confidence in the professional
interpreters they had been allocated. The main reasons given
were because the interpreter did not have any knowledge of
mental health issues and/or did not understand the patient’s
culture. Many service users believed that their words were
therefore being incorrectly interpreted. There was a very
commonly expressed need for interpreters to be ‘qualified’ and
‘trained’ in mental health issues and to be familiar with the
culture of those for whom they were interpreting.
Insufficient time allocated for consultations
using interpreters
Several studies reported that the time allowed for consultations
where interpreters were used was too short:
– I was not finished but my GP and my interpreter were
finished with me. I was still sitting down, they were already
standing up. I mean, they don’t give you enough time.
An interpreter interviewed for one of the studies agreed that
time could be an issue:
– I translate literally because it is very important that every
word they say has meaning to my client and if I summarise
it’s because I have next appointment – that’s what happens
in the interpreting business – they have another
appointment so they cut it short so they can get to another
appointment. But that is not what we are there for. We are
there to help say their words to professionals so that
professionals will understand them.
Another interpreter reported that, because of time, service
users who needed an interpreter were not asked as many
questions during consultations as those who spoke the same
language as the consultant.
Language of mental health service staff
A very commonly expressed need was for mental health
service staff who speak the same language as their patients,
so that interpreters are not needed:
– We want a service where the workers understand our
language and not have an interpreter. We want to be
able to explain our own problems.
– I see her [counsellor] about once or twice a month...
She can speak Chinese and she can understand me one
hundred percent without any language barrier. If it is an
English speaker, the communication will still be limited
even if there is an interpreter.
– [I want] somebody to speak Polish language because
my mental health needs to be understood and I need to
explain what I feel.
– If there was a counselling service available in this area
in my language, I would be happy to attend.
DRE Community Engagement Study Key themes and findings
section 4
However, it was stressed by several reports that some languages
include different dialects and it should not be assumed that
everyone who reports their language as Arabic, for instance,
can understand each other:
– 
I went with a client to the mental health department and
the doctor was an Iraqi male. I went with her to support
her as she said she wouldn’t go without me. He called
her in and refused to let me in and said that he can
speak Arabic and there was no need for me to go in with
her. When she came out he said that she was perfectly
fine and there was nothing wrong with her, but it was so
obvious that she needed help. When I asked her what
happened she said ‘I didn’t understand anything he said
and because he was a male I was too shy to say anything
so I just kept nodding’. She never wanted to go to any
mental health worker again and the problem here is
that he was a male and although he spoke Arabic he had
a different dialect. If the mental health services are
going to employ a worker to deal with the Yemeni
community then it should be a Yemeni worker from
within our community, as we would have the same
accent and dialect.
Use of family and friends to interpret and translate
Many mental health service users revealed their reliance on
family members, friends and contacts in the community (such
as those from community organisations and places of worship)
to interpret during visits to a service. The reasons for this were
reported as the services’ inability to provide an interpreter and,
in some cases, because families were trusted more than a
professional interpreter. There is some evidence from the study
reports that women are more likely than men to take someone
with them to interpret at a consultation.
In most cases, the family member who interpreted and
translated for the service user was from a younger generation,
because they had been born or brought up in the UK and so
had learned English. However, using younger members of the
family to interpret and translate was not without problems.
They are not trained in interpreting and translating, nor in
issues surrounding mental health problems and treatment:
– My son accompany me to hospital, I was told by my son
that a scan will cure my illness immediately... But it’s
when I went to the hospital [for the scan] that I realised
my son had got the wrong message.
53

Key themes and findings
A study among the Kurdish, Turkish and Turkish Cypriot
communities stressed that young people taking on the
responsibility for interpreting and translating, including
accompanying relatives to appointments, means they play a
more active role in family decisions and activities. This, the
study reported, along with the younger generations being
better educated than their parents, ‘undermines the patriarchal
hierarchy of the traditional family structure’. Another study
among these communities reported that some young people
resent this responsibility:
– I am fed up with all these adult responsibilities. Fill in
this form, translate this… I want to be with my friends.
In addition, a study of South Asians pointed out that the first
language of the younger generations may be English and it
should not be assumed they are capable of interpreting and
translating for the older generations:
– 
More often than not, their knowledge of the Asian
community languages is poor. To assume that they
will be able to effectively communicate with an elder
speaking a pure regional dialect of Punjabi, Mirpuri or
Hindko is to ask too much.
The use of family members as interpreters was reported to lead
to service providers ignoring the patient during consultations.
Some service users felt angry or insecure about this and that
their opinions and views were not important:
– They kept asking my family and doing what they said,
not what I needed. There was no-one to talk to me in
Punjabi. They just gave me tablets and injections, didn’t
talk to me.
– 
Because you don’t know the language you don’t
understand what they say, you feel they are talking
about you… they don’t even look at you, but you feel
that way.
– I didn’t understand what was happening to me and no
one took the time to explain to me in my own language.
A few reports noted that family members may have a ‘conflict
of interest’ when acting as interpreters, and ‘with their personal
knowledge of the individual, may omit or alter some of
the content of what the service user is saying “in their
best interest”’.
A service user may not want to divulge mental health problems
to an interpreter who is a stranger, but they may also be reticent
about doing so to a member of their family:
– Our general perception is that most Asian elderly people
would prefer and trust their own family member to
translate for them, although it is uncertain whether they
would share all their issues with them.
DRE Community Engagement Study Key themes and findings
section 4
Revealing mental health issues to a family member was also
discussed by a study among South Asian women who had
experienced domestic violence. For example, one of these
women reported that the man who was abusing her acted as
her interpreter when she went to her GP to discuss her
mental health problems:
– 
The bad thing was that my English was not good,
but they never arranged an interpreter for me. So every
time my husband came and translated for me. I could
not say much.
Despite these problems, however, a study of people from
Yemen reported that participants wanted the younger
generations to interpret and translate for older members. A
study of the Chinese communities agreed that the younger
generations should help the older by interpreting and
translating: its study participants wanted young Chinese
people to retain the Chinese language and culture and work
in the health services so that they could help the older
members of their communities who used these services.
Interpreting and translating services for service
users’ families
A few study reports discussed the difficulties service users
who spoke English had in explaining their mental health
problems to family members who did not speak English.
These difficulties included the family not understanding how
they could support the service user and could have been
alleviated, study participants thought, by an interpreter:
– If someone could have explained mental health to my
family in their own language the first time I was ill,
they could have been more supportive to me.
Learning English
Many of the study participants (whatever their ethnicity) who
could not communicate in English regretted this, reporting that
learning English would help them with social and cultural
integration and enable them to access mental health services
more easily:
– 
I feel lost about how to access any NHS services,
because I don’t speak or write English, so I feel afraid
if I need help – where will I go?
– If I learned the English language, I suppose it wouldn’t be
so difficult when it came to communicating with services.
A few study participants also wanted to learn English so
that they could help others in their communities to have better
access, experience and outcome of mental health services:
– We will help each other. I will go to the adult education
centre and learn proper English to help my community.
54

Key themes and findings
The English language capabilities of the sample, regardless of
the length of time they had been in the UK, covered a wide
range, from fluency to those who could not communicate at all
in English. The latter group comprised some elderly people
from a variety of ethnic groups who had come to the UK as
adults, those newly arrived and some Chinese people of all
ages. Those immigrants who spoke English in their home
country, or who had learned it before coming to the UK,
obviously found it easier to communicate once they arrived.
Nevertheless, some still experienced problems. As one of the
study reports noted, quoting a participant from Eastern Europe:
Even for those who already speak good English, there is a
‘settling in’ period whilst becoming accustomed to local
accents and everyday ‘non-textbook’ English... ‘I thought I
could speak English, I thought I had the basics cos… I was
studying for a few years, but coming to London, it was just
the people were talking fast and slightly different from my
teacher so… I was really fed up because people couldn’t
understand me because I was talking with an accent,
I couldn’t understand their accent, so it was very, very
frustrating for me for a few months’.
The studies variously reported the following barriers facing
those who wanted to learn or improve their English in order to
address their social exclusion and better communicate with
mental health service providers:
• Lack of availability of English classes
A comment in one report on the lack of English classes
was echoed by several others:
–
The fact that many interviewees could speak a variety
of languages, some up to 7, indicates that it is not an
inability to learn a new language that is holding people
back, but rather a lack of encouragement and availability
of English language education.
Another study reported local cutbacks in English language
classes and a third noted that the cost of these prohibited
some from enrolling.
• Lack of knowledge of English classes
Several studies reported that ‘Many [study participants]
did not know that English classes were available for
them locally’.
• Age
Several studies noted that older people found it harder
than younger people to learn English.
DRE Community Engagement Study Key themes and findings
section 4
• Reliance on family members to translate and interpret
 Several studies noted that some participants’ children
or other family members could communicate well in
English and acted as translators or interpreters for those
who could not. Therefore, there was little incentive to learn
English, even for those who had been living in the UK
for many years.
• No previous knowledge of English
One study report noted that immigrants from countries
where English is not used at all (to communicate with
tourists, for example) found it harder to learn than those
who had some experience of the language.
• Lack of education
Some study participants, especially older people and those
from rural areas, had had little or no formal education in
their country of origin, and therefore found it hard to learn
a new language:
– It is very difficult for me to learn anything easily because
I wasn’t educated in my country.
• Time/long working hours
A study of 44 older adults from the Chinese communities
reported that they had limited opportunities to attend
English classes because they worked long hours.
• Mental health problems
Two studies reported that mental health problems affected
the ability to learn:
– I am severely depressed and lack concentration. I tried
for years to learn English but I just can’t. I attend ESOL
[English for Speakers of Other Languages] classes
every day but I don’t seem to be making any progress.
In addition, a study of 50 people (most from the South
Asian communities) caring for people with dementia
reported that those with dementia forget their English
language skills:
– First generation elders who have learned English as
an additional language will revert to their first language
as their dementia progresses.
The community organisations’ recommendations to
increase mental health services’ cultural competence in
terms of language can be found in section 6.3.1.
55

Key themes and findings
4.3.2 Culturally appropriate treatment and
interventions: faith and religion
As shown in section 3.5.9, 5,156 study participants reported
their faith or religion. The majority were either Muslim (46%)
or Christian (29%). Smaller proportions reported that they
were Hindu (5%), Sikh (5%), Buddhist (3%) and Jewish (2%),
while 6% reported that they had no faith nor religion. The
remaining 4% included those who said their faith or religion
was Ancestor Worship, Jainism and Rastafarian.
Some aspect of faith or religion arose in almost all of the
studies. In some, there were explorations of the role of faith in
emotional wellbeing and recovery from mental health
problems, and some included ‘religion’ in lists of options
people may turn to when experiencing mental distress. The
focus of this section is the data from the 36 studies that, in
varying depth, explored the spiritual needs of mental health
service users and their experiences of using services.
This section comprises an examination of western models of
mental illness against religious perspectives, with details of
the experiences of Muslims, Orthodox Jews, Christians and
Romany Gypsies; statutory and voluntary services’ awareness
of needs relating to faith and religion; issues around the
difficulties of conforming to religious practice while accessing
services, such as regular prayer times and the effects of
medication; and the call for joined-up working between mental
health services and faith-based organisations in moving
forward to create more culturally competent services.
Several studies explored the perceived dissonance between
western psychiatric models of mental ill health and religious
perspectives, especially those among the Muslim, Orthodox
Jewish and Christian religions.
Muslim perspective
A study of 87 Muslims (mainly Pakistani) noted the key issue
of the difference in approaches to mental health of Islam and
western psychiatry:
– In Islam and in Islamic societies, processes have been
developed to enable individuals to recover from mental
distress and also a different conceptual framework for
defining/diagnosing mental illness, but do not
necessarily match that of mainstream society/
psychology. Central and core to this process is that
the person needs to maintain a sense of direction and
anchoring and retain observance of prayer, fast and
Dhikr [Remembrance of Allah].
DRE Community Engagement Study Key themes and findings
section 4
• In a study of 84 South Asians aged 50 and over (of whom
84% were Muslim), the importance of religion as an
interwoven element with all other aspects of life was noted,
and the following comment resonates with other studies
working with Muslims, regardless of age and ethnicity:
– 
Faith continues to play an important part in the daily
life of the older people from the Asian communities.
For most, faith is their way of life. It provides the
framework for interpreting, understanding and
managing their situations and predicaments in time of
need... older people wanted help [from mental health
services] that sat along their religious beliefs as this
was something they could understand and work with.
• The studies from Muslim communities that compared the
issue of mental health perspectives of Islam and western
models in any depth tended to focus on the dissonance of
understanding between western psychiatry and jadu (or
jadoo) or ‘black magic’ and possession by jinn, described
by one report as follows:
– 
Muslims believe that jinn are real beings. The jinn are
said to be creatures with free will, made of smokeless
fire by God, much in the same way humans were made
of clay. In the Qur’an, the jinn are frequently mentioned
and Sura 72 of the Qur’an named Al-Jinn is entirely
about them… the jinn have communities much like
human societies, they eat, marry, die etc. They are
invisible to humans, but they can see humans… Jinn are
beings much like humans, possessing the ability to be
good and bad… Evil beings from among the jinn are
roughly equivalent to the demons of Christian lore. In
mythology, jinn have the ability to possess human
beings, both in the sense that they persuade humans to
perform actions, and like the Christian perception of
demonic possession.
In terms of mental illness, another study, among Somali
Muslims, added:
– 
Traditional concepts hold that ‘jinn’ mainly cause
mental diseases. These may cause the affected person to
see images or to hear voices that are not perceived by
others… Normally a disease is accepted by the
individual and the family as the will of God (Allah). This
is very helpful as a way of coping with the illness’s pain
and distress with dignity and without having to recourse
to desperate action.
• One service user’s experience on being admitted to in-
patient psychiatric care illustrates clearly an issue raised
by others in terms of the contradiction between western
medical diagnosis and spiritual beliefs:
– I can remember when I was admitted I told them that I
felt possessed… there’s a whole chapter on this in the
Quran… but nothing I said made a difference… I was
sectioned and remained there for 6 months.
56

Key themes and findings
Two studies of Bangladeshi Muslims reported that ‘Black
magic has played a major part in some of the service users’
lives in relation to their mental health problems’ but that,
as one study participant put it:
– Doctors don’t believe in Jinn and Jadu – they think it’s
[mental illness] a scientific issue.
• The lack of a joined-up approach between faith and mental
health services was considered to bring additional distress
to those experiencing mental health problems, as summed
up in the following, from a report exploring the experiences
of Pakistani Muslims:
– What has been amply demonstrated through participants
involved in the research has been that they want to
see the development of services that take into account
their faith and spirituality as central components to
promoting mental health and wellbeing. Simply
dismissing people’s faith traditions as being invalid can
cause further distress.
Orthodox Jewish perspective
Experiences of perceived misdiagnosis because of religious
beliefs were also noted in studies conducted among Orthodox
Jews. One of these studies recounted the following, which
illustrates well how religious beliefs can be misinterpreted as
dysfunctional behaviour:
– 
[The project’s research] uncovered the case of an
Orthodox Jewish man in London who, in the middle of
a Mental Health Assessment, began to constantly stare
out of the window at the sky outside. He seemed
increasingly distracted and finally walked up to the
window where, completely oblivious to the Panel
Members in the room, he apparently began to talk to the
wall. The Panel Members were naturally extremely
concerned about his highly dysfunctional behaviour
and, apprehensive at the possible psychiatric reasons
for this, unanimously recommended that the man be
detailed for hospital treatment under the Mental Health
Act 1983 (commonly known as ‘being sectioned’).
 It later transpired that this was a severe professional
misjudgement caused by an ignorance of the man’s
religious needs and requirements. What had happened
was that during the interview, which occurred during a
short winter’s afternoon, the man had noticed it was
getting progressively darker and reaching the final time
for him to conduct the afternoon (‘mincha’) service that
Orthodox Jews are required to pray daily. Getting
increasingly concerned that he might forgo the final
time for prayer the man then decided to pray there ‘on
the spot’. What he lacked, however, was the knowledge
and social skills to properly explain his actions to the
panel (it may well be argued that this was a symptom
of his mental health problems).
DRE Community Engagement Study Key themes and findings
section 4
What was in fact a perfectly logical act within the man’s
religious beliefs was, due to ignorance, completely
misunderstood by the panel resulting in an incorrect perception
of his behaviour and thereby a miscarriage of justice by the
relevant professionals.
 he same study reported how behaviour around preparation
T
for religious festivals could be seen as inappropriate
when taken out of context and without knowledge of the
religious requirements:
– Sometimes the degree of normal needs to be understood
within social context eg if a mother is upset/angry
because after Pesach cleaning (Passover preparation)
for 3 hours, and a child then brings a biscuit upstairs.
A non-culturally aware care provider may consider this
excessive, however someone with cultural awareness
will realise the seriousness of this.
The consequence of these misunderstandings was a reported
distrust of non-Jewish mental health professionals:
– Most of the community are unlikely to trust non-Jewish
or secular Jewish practitioners. The community requires
its own providers.
Christian perspective
While none of the studies specifically explored the Christian
perspectives on mental health in any depth, concerns were
raised about the lack of consideration of spiritual experience
and religion in diagnosis, treatment and aftercare.
• In some of the studies, particularly among Black African
and Black Caribbean inpatients, a small proportion of
participants with diagnoses of psychosis strongly refuted
that they were mentally ill, reporting what could be seen as
spiritual experiences:
– 
I heard angels directing my path and saw images of
Armageddon. All the colours rose up to meet my foot fall
and I walked in the light for a time.
– I heard everything before I was told, I knew what was
going to happen and could predict the future.
– I didn’t want to eat or mingle, I just want to be with
my God.
57

Key themes and findings
• A study of Black Africans and Black Caribbeans that
included six inpatients with serious mental health diagnoses
concluded that:
– 
It is clear that service users’ spiritual needs and
Christian beliefs, in particular, are largely not taken
into consideration by the current service providers…
but these needs appear to be a very important issue with
black service users.
However, the extent to service users express their spiritual
needs to service providers was also raised by this study. As
one service user commented:
– 
There are many professionals who do not believe in
spiritual needs, so I do not talk about it because they
would not understand.
Romany perspective
One study discussed the Romany faith, Muller Mush, and its
potential negative effect on mental health:
– The belief in the Muller Mush is very strong especially
within the generation who lost their traditional stopping
places in the early sixties and were cleared off the
common grounds... This generation found themselves
forced into bricks and mortar accommodation and
stress took its toll and the natural belief that bricks and
mortar housing may have a ghost in it that has not been
put to rest. It can be a belief that for some manifests
itself very strongly, and the situation can be amended by
laying ghosts to rest or families understanding the
knowledge of where they are living, and who was in the
house before. Or the family just have to move. The belief
can be very real to the person involved. It can manifest
into a psychosis that the medical profession may not
fully understand, so it’s not talked about. It is linked to
the belief that personal belongings of the deceased
person are burnt, including the caravan. Otherwise the
spirit lingers in the world.
When asked how the mental health service can be improved to
better meet the needs of Romany Gypsies and Irish
Travellers, services’ gaps of awareness and knowledge about
their culture was summed up by the following from one study
participant:
– Inform workers of our culture so that they understand
our beliefs and ways, country men [non-Gypsies and
Travellers] don’t understand about our ways.
Service providers’ awareness of faith
and religious needs
The vast majority of the 36 studies that covered this issue
reported that there was a lack of awareness among statutory
mental health service providers regarding faith and religious
needs. One study bluntly summed up:
– 
Doctors and consultants did not consider the spiritual
and cultural needs of service users within patient care.
DRE Community Engagement Study Key themes and findings
section 4
• There was a marked difference in reports of faith and
religious competence from the study participants accessing
services provided by voluntary and community
organisations, where faith and religion were reported
to be given a higher priority and understood to be an
important aspect of life for members of some Black and
minority ethnic communities. As discussed in sections
4.2.5 and 4.5.14, for instance, these services were greatly
appreciated for the contributions they made to emotional
wellbeing and helping mental health service users with
conditions such as depression. For example:
A study among 45 young male service users from a variety
of ethnicities included an exploration of services’
understanding of religious needs. A range of questions
were asked of service users and their carers, and although
response rates were low, the following findings were
reported, mostly from the South Asian study participants:
– seven felt there was a ‘poor understanding of religious
needs in services’;
– three felt there was a poor understanding of religious
festivals and their implications; and
– two felt there was religious prejudice in services.
• Two studies conducted among Black African, Pakistani
and other South Asian Muslims stressed that service
providers should not make assumptions regarding a
person’s religion based on their skin colour or name:
– Not everyone who classes themselves as a Muslim is
actually a practising Muslim. This information would
prove important if setting up services, as assumptions
cannot always be made regarding a person’s
requirements based on their religion – eg not all
Muslims require halal food.
– In order to respond to individual religious requirements
whilst accessing services, it is important that workers
know not to make generalisations but inquire of each
person what their needs are in terms of religion.
• Five studies included the views of service providers
regarding cultural competence in respect of faith and
religion. They all reported that there was room for
improvement in service providers’ level of awareness and
knowledge, but that the numbers who had received training
on this issue were low. However, among the service
providers who commented on this issue, there were clear
expressions of a wish to meet faith and religious needs, as
summed up by the comments below:
– Everyone has spiritual needs even if they do not identify
themselves with any particular faith group.
– Inpatients may find respite and comfort in the
practice of religious traditions or in activities with a
spiritual content.
58

Key themes and findings
• One study among Black Africans and Black Caribbeans
included a survey of 40 mental health service providers.
Of these, 93% thought that religious and cultural training
would be beneficial for ward staff, although only a quarter
(10) of the service providers reported that they had received
cultural competency training. Of these, only three said
religion had been included in this training, and just one
offered a comment on this, saying that it was used ‘all the
time in being sensitive to religious issues and needs’
• A study among Orthodox Jews included a survey of eight
service providers. Results showed that the majority did not
think they were culturally competent when dealing with
members of this community:
– When asked if they thought the service they provide is
culturally sensitive to the Orthodox Jewish community,
25% considered that it was and 62% that it ‘partially’ was.
– When asked how much they knew about the Orthodox
Jewish community, 50% of service providers said they
knew ‘a little’ and 25% that they knew ‘a lot’.
– Half of the service providers said they tried to take
into consideration Sabbath and high holy days in
arranging appointments.
• A study of 74 South Asian and Chinese service users and
carers aged 50 and over asked 25 service providers whether
all staff in their organisation were trained in religious
awareness. Just under half replied in the affirmative.
• Faith healing and spiritual healing as spiritual practices to
promote wellbeing and recovery from mental health
problems were briefly discussed in a minority of studies,
particularly those focusing on Muslims and Christians. An
awareness of the importance of faith healing in some study
participants’ lives was thought by these studies to be a
necessary element of mental health services’ cultural
competence in terms of faith and religion. For example,
a study among Somali Muslims, which reported that jinn
are believed to be the main cause of mental illness added:
– As for care, medical attention is not always the first to
be sought… Individuals are treated with Quranic
readings, administration of herbs, fumigations etc. In
some cases the ‘devil’ is driven out by exorcism… also
non religious rites are practiced to drive spirits out by
means of dances, songs, perfumes.
DRE Community Engagement Study Key themes and findings
section 4
Lack of opportunity for service users to follow
religious practices
Some study reports voiced concerns over service users’ ability
to conform to religious practice owing to the effects of
medication and/or the day and time that services were offered.
For example:
• A study of Muslims from a variety of ethnicities
highlighted the issue of medication and the effect of
hospital routines on religious practice:
– No-one told if the drugs were halal and we didn’t know.
No-one said that I would fall asleep and sometimes I
miss my prayer.
– I was not allowed to pray night prayer. Lights go out at
9pm, and prayer time was 10pm. There was no prayer
facility or prayer mat.
• Concerns were also raised by the Jewish study participants
regarding the difficulties service users face on the Sabbath.
Known in Hebrew as Shabbat, this is a holy day for rest,
reflection and prayer, with restrictions around other
activities. Keeping Shabbat can therefore be difficult for
those in psychiatric inpatient units and attending outpatient
services.
• As discussed in detail in section 4.3.4 in relation to the
need for gender-specific services and staff, Jewish and
Muslim women were particularly concerned about
personal modesty and, as part of their religious observance,
aimed for limited contact with men, other than their
husbands and close relatives. They therefore considered
male staff, including nurses in hospitals, to be highly
inappropriate.
• A Seventh-day Adventist, who was a carer, also reported
that religious practices were compromised by mental
health services:
– We would always say to him [service provider], if you
organise any activities don’t do it on a Friday because
that is our holy day… but he would still take him out [to
activities]… so we have to compromise our faith in
some way.
• The issue of mental health services’ cultural competence
surrounding food is discussed in section 4.3.3, but also
noted here because there are specific religious connotations
regarding the therapeutic benefits of particular foods in the
Muslim faith, as one of the studies reported:
– There are many instances of the Prophet Muhammed
(SAW) recommending certain foods for their therapeutic
qualities eg honey, olives, figs, dates, ginger etc. Thus
food is central to Muslim spirituality.
59

Key themes and findings
Positive experiences of faith and religious competence
While this section has revealed many complaints that mental
health services did not understand faith, religious and spiritual
needs, and do not do enough to take these needs into account,
a few positive experiences were reported:
• In a study of 50 South Asian service users and carers,
more than half said that they did feel services were
culturally/religiously sensitive, and one commented
positively on the understanding regarding religious dress.
• A study of Black African and Black Caribbean inpatients
recommended dissemination of an example of good
practice it had observed (see http://www.homerton.nhs.
uk/patient-information/your-stay-in-hospital/spiritual-
and-religious-care/), citing it as:
– 
An example of how faith can be fully incorporated in a
person’s mental health care. They [hospital] have a
chaplaincy team which covers a diverse range of faith,
a Sanctuary and Shabbat room for quiet prayer and
thought and regular religious services.
Joined-up working between mental health services
and faith-based organisations
Many studies stressed the importance of a joined-up approach
to moving forward in a positive way to unite religious
perspectives with western models of mental health. Several
studies suggested that there is much benefit in genuine two-
way partnerships, whereby faith-based organisations and
mental health services both learn more of the other’s
perspective. For example:
• A study of 70 Black African and Caribbean men
concluded:
–
The research highlights the need for more joint work
between different agencies, particularly colleges and
higher education providers that deliver counselling
courses. They should ensure that the courses delivered
are culturally applicable, racially sound with elements
of religion, gender and history.
• A participant in a study among participants from a variety
of ethnicities agreed:
–
I think where service users are spiritual, it helps them
understand their problems and how they see the world.
You can’t ignore people’s spiritual needs, having a
dialogue on how mental health works with spirituality.
We need to build bridges and find solutions.
The community organisations’ recommendations to
increase mental health services’ cultural competence in
terms of faith and religion can be found in section 6.3.2.
DRE Community Engagement Study Key themes and findings
section 4
4.3.3 Culturally appropriate treatment and
interventions: food
The majority of the study reports included the provision
of culturally appropriate food in a list of recommendations
aimed at increasing services’ cultural competence. Thirteen
reports discussed this issue in more detail. Overall, the
study participants made several links between food and
mental health:
• A minority thought that the symptoms or diagnoses
of mental illnesses included a loss of appetite and a lack
of interest in cooking. Some had experienced these
problems, including a few who had been diagnosed with an
eating disorder.
• Comments from the carers of those with mental health
problems showed that one of their major duties was the
provision of food (including shopping) for those who
could not or would not cook for themselves.
• Several studies made the point that the lack of culturally
appropriate food added to the stress of those who were
mentally ill and in hospital, isolated from their families,
friends and usual activities, including their usual diet.
• The studies involving current and ex-asylum seekers
discussed how issues surrounding food contributed to
their feelings of alienation in England. For example, a few
asylum seekers from Somalia and Yemen had been
subsistence farmers and they reported how much they
missed growing their own food. Others reported that
the new culture they encountered included unfamiliar
food, different eating habits and the lack of availability of
halal food. One of those who had been given vouchers
to buy food while waiting for a decision on their
immigration status commented that they could only be
exchanged in one supermarket only, ‘and I can’t buy halal
meat in [supermarket]’.
Dissatisfaction with the lack of provision of culturally
appropriate food by statutory mental health services was not
related to ethnicity: members of all the ethnic groups
represented in this project expressed their discontent.
60

Key themes and findings
Mental health service users’ experiences
Nineteen of the studies reported on whether the dietary needs
of current and ex-service users were met by hospitals and day
centres. Only one of these studies reported largely positive
experiences: two-thirds of a sample of 65 service users said
their dietary needs had ‘always’ or ‘sometimes’ been met while
in hospital.
The remaining 18 studies reported overwhelmingly negative
comments on the lack of culturally appropriate food; that they
were not asked about their dietary needs; that their needs were
not met because a limited choice of ‘ethnic food’ was available;
and that portions of halal food were too small. For example:
– Of a sample of 17 Black and minority ethnic service
users who had been in hospital, 14 had not been asked
about their dietary needs.
– Many [service] users complained that they were not
provided with proper Asian meals. There was not only
no provision, but no awareness of dietary requirements,
and an assumption that users would adapt.
– There were reports from carers that meals-on-wheels
services did not cater for cultural and religious diets, nor
for vegetarians.
– 
You are limited with halal food, you get a small
portion of food compared to other people who have
no halal food.
– 
Often there was no halal food. When given halal
food, it often comprised small portions of plain rice or
potato, which the men felt was not sufficiently
nourishing.
– I like rice. Here they give rice but it is different –
Caribbean – it is not the same as ours.
A few study participants thought that some ethnic groups
were better catered for than others in terms of food:
– It is easy for service providers to provide Asian food yet
they often find it difficult to provide for African and
Caribbean – yet we all pay taxes.
A few reports raised the issue of the times that food was
served. A study of a Muslim community reported that fasting
times were not considered by hospitals; a study of carers
reported that meals-on-wheels were delivered ‘at a time to suit
them and not us’; and an inpatient commented:
– Meals are given out and we have to eat it there and
then even if we are not hungry – they don’t want to let
us save it for later as the plates have to be sent back to
the kitchen.
Some service users’ solutions to the lack of culturally
appropriate food were to ask their families to bring meals to
them in hospital, or, if they attended day centres, to eat before
they went.
DRE Community Engagement Study Key themes and findings
section 4
The community organisations’ recommendations to
increase mental health services’ cultural competence in
terms of the provision of food can be found in section 6.3.3.
4.3.4 Culturally appropriate treatment and
interventions: gender
This section presents data on the issues identified by the
study reports concerning the relationship between gender
and mental health, and the studies’ findings on services’
cultural competence in terms of gender. The section begins by
detailing the gender-specific factors negatively affecting the
mental wellbeing of females and males, which study
participants thought services needed to consider. This is
followed by the studies’ findings on the need for gender-
specific services and staff.
• Sixty-six of the 79 study reports discussed some aspect of
gender, many of them in detail. These include 39 that
addressed the issues of gender-specific services and/or
gender-specific mental health professionals, from the
perspectives of both females and males from a wide
variety of ethnic groups.
• The samples of ten of the studies were all female and in
another, the vast majority of the participants were women.
• The samples of seven studies were all male, the vast
majority of a sample of another was men and a further
study focused on males, but included female carers in
their sample.
• Some studies (especially, but not exclusively those
ocusing on Muslims and Orthodox Jews) used community
researchers of the same gender as their study participants
and conducted all-female or all-male focus groups in
order ‘to respect cultural and religious sensitivities’.
This, they reported, also ‘made it much easier to ask
personal questions’.
• Both females and males (especially male Muslims)
reported that racism affected their mental wellbeing.
As one study report put it:
– 
The constant media portrayal of male Muslims as
potential terrorists and a threat to national security...
is undermining their confidence.
• The study participants in almost half the studies reported
that some gender-specific factors relating to their culture
negatively affected their own mental health and that of
other members of their communities. These are discussed
below and the data represent a strong plea to mental health
service providers for more understanding and sensitivity
about these factors when diagnosing and treating Black
and minority ethnic patients.
61

Key themes and findings
Gender-specific factors negatively affecting the mental
wellbeing of females
This section discusses the factors that were identified by
the studies as affecting the mental wellbeing of some Black
and minority ethnic females: isolation, women’s role in the
family, the stigma of mental illness and of ‘not coping’ with
their family responsibilities, powerlessness, violence, and the
asylum-seeking process.
Isolation
The isolation of some Black and minority ethnic females was
commonly thought to have a negative effect on their mental
wellbeing. This was reported from a variety of ethnic groups,
but especially South Asians (mainly Bangladeshis and
Pakistanis) and by Muslims. The isolation of females was
reported to be due to the inability to communicate effectively
in English, a strict family’s restrictions on their movements
outside the home, and especially in the case of asylum seekers,
poverty. Examples include:
• Three studies among the Bangladeshi community reported
that their study participants thought that girls and young
women became isolated because they had ‘too many
restrictions’ imposed upon them by their families.
• A study among the Pakistani community reported that
those women who had come to England for an arranged
marriage were isolated and prone to depression because
they lacked their familiar support networks. Participants
in another study among this community thought that some
women feared to go out of their home because of racism
(especially since the attacks in the USA on 11 September
2001) and drug dealing in their area, and that the consequent
isolation posed a threat to their mental wellbeing.
• A study that included 33 Yemeni women also reported that
their fear of crime and racial harassment meant that they
were isolated and excluded from day-to-day community
life, leading to them feeling depressed and withdrawn.
• Five case studies were included in a study among 37 South
Asian women (mainly Pakistani). They starkly showed
that the restrictions on women’s ‘personal freedoms’ meant
that their mental wellbeing ‘is not only neglected but
actively threatened by socio-cultural circumstances’:
– 
The family tells them that there is no need to go out.
They accompany them wherever they go, to keep an eye
on the daughter-in-law, so that all she does is the
housework, with no freedom for anything else.
DRE Community Engagement Study Key themes and findings
section 4
The study report also showed that depressed and anxious
mothers are ‘poorly placed to nurture the mental wellbeing of
their children’.
• A study among Black African and Kurdish women
reported that women with children aged five and under
were more isolated than those with older children, and that
Kurdish women experienced ‘particularly acute levels
of isolation and self-ascribed “depression” even in the
context of family life’.
• A study that included seven Somali women who had
been diagnosed with a mental illness showed that they
had become housebound because of the illness. They
reported that this isolation had compounded their mental
health problems.
Women’s role in the family
Many study participants (females and males), from a wide
variety of ethnic groups, thought that women’s expected role
in the family could negatively affect their mental wellbeing
and hinder the recovery of those unable to fulfil this role
because of mental health problems. To illustrate:
• Many of the sample in a study among Pakistanis concurred
with one participant’s statement that:
– In marriage, girls have to make the marriage work even
if their partner makes life hell. Men are not blamed and
usually women suffer – they [the Pakistani community]
stigmatise her and her family.
• Another study among Pakistani women who attended a
parenting course emphasised that they were expected to
do as their mothers-in-law dictated:
– If you attend a course, the mother-in-law wants to attend
also, to check what she is doing, where she is going,
who she is going to meet, and wants to know what she
will learn.
– Mothers-in-law fear that women may learn the rules
and regulations of England – in other words, their
rights... Mothers-in-law want to be in control of their
daughter-in-laws’ lives.
– Girls from abroad are treated like slaves. This is a
common concern...Women from the Asian subcontinent
are suffering.
• A study of 50 South Asian mental health service users and
carers reported that most believed, as one of them put it:
– Whenever there is a breakdown of relationship between
a woman and a man, it is always the women who are
troubled [more] by the problems than men.
62

Key themes and findings
• A study among Orthodox Jews highlighted the importance
of gender roles in their culture, which demands that women
be a ‘super balebuste’ (super housewife). This, along with
the pressure of ‘Simcha’ (the command to be happy),
was reported to have a negative effect on women’s
mental wellbeing.
• Data collected from Turkish, Turkish Cypriot and
Turkish Kurdish men led the study report to comment:
– Women (ie mothers, wives, sisters) play an important
role in caring and managing their male relatives’
mental health problems. However, their carer role was
not recognised within mainstream service provision,
leading to deterioration of mental health of carer.
• A study of Irish women showed how:
– Traditionally the role of the Irish woman is very much
focussed around the family, it’s their motivation and
they are very much seen as the nurturer.
Consequently, when Irish women feel they have failed in
this role, there is a negative effect on their mental
wellbeing. In addition, if an Irish woman has a mental
illness and cannot fulfil her role of nurturer, her recovery is
negatively affected.
• Yemeni women reported that their mental wellbeing was
affected by the pressure of their caring role:
– 
They don’t realise that women are the ones that get
worried easily as they have kids, a husband, a house
and themselves to care for and worry about. It’s a lot of
responsibility but the men always depend on women and
expect them to be healthy.
• A study among 107 female and male Somalis reported that
many of the women had been separated from their partners
(including by death and imprisonment) during the civil war
in Somalia. These women came to the UK to seek asylum
and were therefore heading single parent families, which
was reported as an uncommon phenomenon in Somalia.
The women in this study reported being stressed by this
situation, and by having to raise their children alone and in
an unfamiliar culture.
The stigma of mental illness and of ‘not coping’ with
family responsibilities
Several study reports discussed how the stigma surrounding
women who were ‘not coping’ with their prescribed role in
the family negatively affected their mental wellbeing and
exacerbated existing mental health problems. This stigma
hindered their access to mental health services. To illustrate:
• 100 South Asian women, mainly Indian and Pakistani and
including 48 mental health service users, reported that
barriers to accessing mental health services included
the desire ‘to keep family name and honour, family
might disapprove’.
DRE Community Engagement Study Key themes and findings
section 4
• A study among the Orthodox Jewish community detailed
how women who could not cope with their family
responsibilities were stigmatised, causing them to deny
having difficult children or mental health or marital
problems.
• A study of 31 Irish women was inspired by the following:
– There was a general consensus amongst community
groups and players that a large number of Irish women
are in need of mental health support. Irish women also
continually disregard community and statutory services
for a variety of reasons that relate to their culture and
ethnicity. The most overwhelming agreement before the
research took place was that Irish women do not like to
talk about their problems and will go through great
lengths to hide any problems they have.
The study showed that this premise was correct: the women
reported that the Irish culture stigmatises a woman having
problems with her partner and/or children. Thirty of the 31
reported that they had a mental health problem, but only 17
had accessed any form of help for this:
– They [Irish women] put other people’s feelings first and
they don’t prioritise their own... they feel ashamed of
admitting that they don’t feel good and they see it as
a personal failure.
– It’s a shame thing – that’s the way we were brought
up – you stand on your own two feet, don’t ask anyone
for help.
As the study report summed up, the consequence was that
the women were uncomfortable about discussing their
mental health problems with anyone, including GPs, and
about admitting that they needed support:
– Both they themselves and many of their female friends
were very good at keeping up the pretence of coping
well and being OK.
Powerlessness
The negative effect of females’ relative powerlessness on their
mental wellbeing was discussed mainly by South Asian study
participants. For example:
• A study of older South Asians reported that:
– 
Mainly in our community, women suffer from their
husbands, in-laws and financial problems due to
dependence on husbands. These things can be the
start of mental health issues.
63

Key themes and findings
• Another study of older South Asians reported that
participants thought that females were more likely to have
mental health problems after marriage, ‘with the demands
and expectations placed on them’ by their husbands and
in-laws. Several had experienced ill treatment and
interference from their mother-in-law and that this had
contributed to their mental health problems. They felt that
living together in large extended families in England
exacerbated the problem, as there was pressure from many
family members to conform, but no support. As the study
report noted:
– ‘The joint family placing restrictions on the new wife
about what to wear, going out etc leads to depression’.
This was said by an older woman who had been
restricted in the prime of her life and now felt bitter
about what she was not able to do when young.
• Three studies among Bangladeshis stressed that the
Bangladeshi culture is patriarchal and ‘the man deals with
everything’. Therefore:
– Women in our community are more susceptible to mental
illness... They need confidence and control.
• A study of Orthodox Jews also concluded that the patriarchal
culture was detrimental to women’s mental health:
– 
There have been some heart-rending accounts and
uncomfortable truths coming to the surface during this
exercise, that perhaps women suffer more [mental
health problems] than men do (it is a patriarchal
society). There is a crying need for establishing women’s
services, groups, training and information without them
having to be secretive, ashamed, fearful or stigmatised.
• Several studies stressed that those women whose
movements are restricted by their families find it difficult
to visit a GP and that even if they do, find it even more
difficult to attend any service to which they are referred.
Violence
The negative effect of violence on women’s mental wellbeing
was most often discussed by South Asian study participants in
terms of forced marriages and domestic violence by a partner.
Five studies presented data on these issues.
• A study among 100 South Asian females reported that
90% of them thought that forced marriage (or the fear of it)
led to mental health problems among women.
• Some of the participants in a study of young Bangladeshis
also believed that forced marriages led to mental health
problems.
DRE Community Engagement Study Key themes and findings
section 4
• Forced marriage was the second most commonly given for
leaving the family home (after domestic violence) by 30
South Asian women (1 Bangladeshi, 10 Indians and 19
Pakistanis) whose mental wellbeing had been affected by
the experience. All these women, who had been resettled
after leaving home because of domestic violence, reported
that their mental wellbeing had been affected by the shame,
dishonour and stigma of leaving their family homes.
Resettlement had impacted on their mental health because
of loneliness, isolation, worry about being found by the
partner who had abused them and the practical aspects of
living independently from their families and previous
support networks:
– I didn’t know how to be independent. Didn’t know how
to pay bills or even catch a bus.
– I didn’t want to go out, thought people would find out
what had happened to me – it was shameful.
• A study among 60 South Asian women (over half of whom
gave their ethnicity as Punjabi) reported that over half had
personally experienced domestic violence, and 85% of the
study’s sample agreed that there was a link between
domestic violence and mental health problems. However,
shame, dishonour and stigma had prevented most of those
who had experienced domestic violence from seeking help,
as ‘it is a woman’s duty to accept everything in a marriage
and to believe that things will get better as life moves on’.
As the report summed up:
– Most of the victims of this abuse have been brought up
with traditional old-fashioned values. Therefore they
feel that they have to put up with this abuse and should
not complain or seek outside help.
• Another study on domestic violence, also among South
Asian women (a total of 80, of whom 56 were Pakistani
and 11 were Indian), reported that mental health problems
were a ‘direct consequence’ of the domestic violence
experienced by the women and the fear of 33 of them that
it would recur. For example:
– 
My husband used to beat me up all the time, my in-laws
always abused me. They treated me like a slave. I had
no permission to go anywhere. I was also not allowed to
attend phone calls. I suffered all this for two years –
every single day. Before this violence, I was full of life,
confident...I lost my confidence, I was scared, mentally
distressed. I always had a headache... I could not do
anything properly. I was always crying and began to
consider myself useless.
64

Key themes and findings
The asylum-seeking process
The trauma that leads to asylum seekers leaving their home
countries was reported to include war, genocide, torture,
persecution, rape, imprisonment and witnessing family
members being killed. These experiences, the process of
seeking asylum in the UK and racist abuse from other
members of the local population (as discussed in section
4.3.6), were reported to have a negative effect on the mental
health of both females and males. However, some aspects that
applied to females only were identified by the studies:
• Several studies, among a variety of ethnic groups but
especially Black Africans, reported that some husbands
and wives were not allowed to stay together in
accommodation provided by the National Asylum Support
Service (NASS). These families’ children stayed with
their mothers, which meant that women were not only
living apart from their husbands, but also had the extra
stress of having no help with childcare, including with
teenagers exposed to what they saw as a UK culture of
drug and alcohol use, tobacco smoking and teenage sex.
Many of these women were concerned about the effect of
their own poor mental health on their children.
• A study of 42 Black African and Kurdish asylum seekers,
39 of whom were female, emphasised the stress of waiting
for the ‘brown envelope’ from the Home Office containing
the decision on their application for asylum, and of the fear
of it being unsuccessful resulting in their forced removal
from the UK. The following comment, from a Kurdish
woman, illustrates this well:
– 
My stress and anxiety now is my unknown future... We
are still waiting to hear from our asylum appeal. Day
and night I think about it. I can’t sleep or look after my
children properly. I keep wondering what I did wrong in
my life to be treated like this. My fear of going back is
huge. I just bought another lock for the [front] door,
in case the Home Office come so I can run away
through the back door. I don’t want to go back to the
fear and my life threatened.
• The study above also reported other factors affecting these
female asylum seekers’ mental health. They had to visit a
police station to ‘check in’ and this ‘made them feel like
criminals’, and were unable to work until a positive
decision had been made on their asylum application.
Consequently, the study report stressed:
– 
Participants, including existing [mental health] service
users, were united in their desire to contribute and
participate in public life and felt being denied such
opportunities negatively affected their mental health.
• Participants in a study among 60 male asylum seekers
(two-thirds of whom were Black African) believed,
however, that because women had childcare responsibilities,
they were less inclined than men to be affected by the
trauma of migration and asylum seeking.
DRE Community Engagement Study Key themes and findings
section 4
Gender-specific factors negatively affecting the
mental wellbeing of males
This section discusses the factors identified by the studies
as affecting the mental wellbeing of Black and minority
ethnic males: the asylum-seeking process, unemployment,
the traditional male role, isolation and a reluctance to
express emotions.
The asylum-seeking process
As discussed above in relation to females, the experiences that
had led them to seeking asylum and of the asylum-seeking
process were reported to have a negative effect on the mental
health of both females and males. However, some factors
applying to males only were also identified by the studies.
The findings from around 25 studies that included male asylum
seekers or male refugees who had experienced the asylum-
seeking process, from a wide variety of ethnicities, concurred
with the study reports that concluded:
– Asylum seeking had robbed men of their status.
– [Men feel] dehumanised or sub-human in the eyes of
the [asylum-seeking] system.
Unemployment
The studies that addressed the issue of men’s unemployment
reported the subsequent loss of their self-esteem, especially
because they could not provide for their families. For example:
• A major issue for male asylum seekers, from a wide
variety of ethnicities, was that they were not allowed to
work until their application was successful. This meant that
those who had come to England with their families could
not fulfil their traditional role of providing for them. Many
reported the negative effect of this on their mental
wellbeing. For example:
– Asylum seeker’s life is disabled life – we don’t know
who we are and we can’t do anything [work].
– I go to the park to be alone and cry a lot because I can’t
do anything.
• Several studies among South Asians, including mental
health service users, also pointed out that men were
expected to take responsibility for being the main
breadwinner in the family. The study participants reported
that if men became unemployed, they became depressed
and anxious and existing mental health problems worsened:
–
I go out and I don’t want my wife to see me and I am
weak, I feel shame. (Pakistani male)
– A focus group of Bangladeshi men reported that they
‘felt distressed about not being able to work and about
financial difficulties’.
65
 section 4
Key themes and findings

• The findings from a study of 61 Black African, Black
British and Black Caribbean males showed how
unemployment meant that their ‘concept of “maleness”
was challenged’.
• A study that included migrant workers from many
different countries stressed that, although they were
employed, their qualifications were not recognised in
England and so they worked in jobs that ‘demeaned their
status and sense of self-worth’.
The traditional male role
As discussed above, some Black and minority ethnic males’
traditional role within their culture were challenged by
unemployment. Several studies identified other aspects of
this role that affected men’s mental wellbeing:
• A study among Orthodox Jews highlighted the importance
of gender roles in that culture. Orthodox Jewish men are
expected to be a ‘Talmid Chacham’ (scholar) and this,
along with the pressure of ‘Simcha’ (the command to be
happy), was reported to have a negative effect on their
mental wellbeing.
• A study among 100 Turkish Cypriot and Turkish
Kurdish men reported that the older men who were not
born in England continued with their traditional way of life
in England. This includes their strong patriarchal role in
the family and social activities such as visiting Turkish
coffee houses and community centres, watching Turkish
television, and supporting Turkish football teams. They
expect their wives and children to adopt these traditions
and ‘this means security and meaning to their lives’.
However, the study reported that men’s mental wellbeing
had been affected by the erosion of this tradition:
– 
Many participants passionately talked about their
problems with their wives and children which they
think has weakened their traditional patriarchal role
as breadwinner and sole guardian of their family.
• A study that included 37 South Asian male mental health
service users reported that it was culturally expected that
they would be cared for by their families when they became
elderly. However, most of these men were not elderly: less
than a quarter of them were aged over 49. They were
distressed that they were now dependent on the families
that they used to head.
• Males comprised around half the participants in a study
among 107 Somali people, including mental health service
users. These men reported how, in Somalia, they had been
the breadwinners and leaders of their families, but that they
had lost these roles in England because they were
unemployed. This loss of status led to stress and a loss of
self-esteem, and they felt powerless.
Isolation
Several studies discussed how isolation negatively affected
men’s mental wellbeing. For example:
• A study among older Irish men who had drug and/or
alcohol problems and/or mental health problems, some of
whom lived in hostels, reported that they were isolated
from their families in Ireland and lacked a social life.
As one of them reported:
– 
I get out, walk around, see people and keep myself
busy. If I didn’t, I’d be like the other guys in the hostel
who just sit and get more depressed.
• The sample of a study of 132 asylum seekers comprised
32 females and 100 males. 76% of the males did not have
any family in England, whereas 67% of the females did.
Consequently, more males than females lacked family
support and this affected their mental wellbeing. As one of
the men said:
– 
I am not feeling well... I am alone in this country, nobody
help me... I am helpless and fed up completely.

Study participants’ comments on this issue included:

– In this country, we have lost everything, we are not men
anymore... in this country there are four classes of
citizens. The first class is women, the second class is
children, the third class is dogs and the fourth is men.
– If my daughter tells her doctor that she wants to go to
a party that I will not allow, the doctor would regard
me as an oppressive father. However, what maybe he
doesn’t know is that I act according to what is right in
my culture.

DRE Community Engagement Study Key themes and findings 66


Key themes and findings
Reluctance to express emotions
In total, almost two-thirds of this project’s total sample was
female. This partly reflected each study’s target sample, but,
according to several study reports, it may also have been
because women were more willing to talk about mental health
problems (their own and others’) than men. For example:
• A study of 84 South Asian females and males aged 50-88,
some with mental health problems, included 60 men.
The study found that men were less willing than women
to answer some questions about their mental health:
– Consistently, women were more willing to acknowledge
their problem(s) and prepared to talk about their
conditions. It is apparent from the responses that women
had a wider vocabulary with which to articulate their
feelings. The reasons for this are that in traditional
South Asian communities, men are encouraged to see
themselves as the providers and protectors of their
families. They are not encouraged to discuss their
family business in public. They therefore feel a need to
project themselves as calm and strong, not showing any
signs of weakness, either physically or in their character.
As a result they are reticent to acknowledge personal or
emotional difficulties.
• A study of 132 female and male asylum seekers from
a variety of ethnic groups also reported that men did not
want to show weakness by talking about their mental health
problems. While the female study participants coped with
negative emotions by increasing their socialising and
talking to counsellors, some of the males’ solution was to
use drugs and alcohol. The study argued that this meant
that men were more likely to be admitted to hospital with
mental health problem or to be sectioned under the Mental
Health Act 1983.
• A study among 60 male asylum seekers (two-thirds of
whom were Black African) reported that the men’s
wellbeing was affected by their reluctance to talk openly
about their feelings concerning the often traumatic
circumstances that led to them leaving their home
countries. Those men who were alone in England were
particularly affected, as they did not have emotional
support from their wives and families.
• One hundred Black African men, three-quarters of whom
reported that they had poor mental health, were asked if
they would seek help for this. A common response was
that they would not:
– 
Because as a black man, I feel if I tell someone, they will
think I am weak. So we tend to keep it to ourselves.
DRE Community Engagement Study Key themes and findings
section 4
• A study of 100 Turkish Cypriot and Turkish Kurdish
men revealed that these men are willing to talk about their
mental health problems to some people, but not others.
Seventy per cent said they were able to share their emotions
and feelings, but further questioning revealed that they
were willing to discuss them only with friends and partners,
rather than professionals. This was confirmed by service
providers, who said that these men presented mental health
problems to them as physical problems such as headache,
backache and fatigue. The study report concluded that
the men’s culture dictated that ‘men don’t cry’ and that
they therefore denied their mental health problems to
health professionals.
• That said, several studies that conducted interviews with
males or held male-only focus groups reported the positive
feedback they received from the participants who were
mental health service users. These men had enjoyed
the experience and found it therapeutic, as it had given
them the opportunity to talk to other men in a similar
situation. For example:
– The report of a study among 40 South Asian men, 37 of
whom were mental health service users, had no problems
in getting the men to talk to the community researchers:
– 
Many found the process of completing the
questionnaire, talking about their experiences and
writing their personal stories very therapeutic and an
opportunity to re-examine their current circumstances
with a view to making positive changes.
– One study included separate focus groups for male
Bangladeshi, Black Caribbean and Somali mental
health service users. The study reported that all these
ethnic groups recommended having a venue where
they could meet with other men, so that they could
share similar issues and experiences and support
each other.
67

Key themes and findings
Gender-specific services
Many of the study participants identified mixed gender services
as a barrier to mental health service access, especially, but not
exclusively, facing women. These participants therefore
wanted gender-specific mental health services, and some
wanted these to be provided in female-only or male-only
spaces. It was argued that by providing these, services would
demonstrate their cultural competence.
• Some of the studies that addressed the issue of female-only
services did so in terms of religious laws. Muslim and
Orthodox Jewish study participants stressed that these
laws mean that separate services are needed for females
and males. For example:
– For women, being left alone with men can aggravate
[mental] distress further because keeping their personal
space private and away from men is an essential aspect
of their devotional life.
– At public functions a ‘mechitza’ (partition) separates
the genders and it is considered immodest to address
a member of the opposite gender (except for family)
by their first name.
• Women’s groups were suggested by the participants in
several studies, mainly those among South Asians,
including elderly people. Many of their comments on
the value of women’s groups show that without them,
some South Asian women with mental health problems
would be housebound and isolated. For example:
– 
Makes me feel happy, gives me a chance to go out
and meet other women.
– I feel good meeting with other Asian women with mental
health problems. This is the only group I access and
leave the house for.
– Met other women who are like me, can talk and discuss
my illness with them in my language. Makes me feel
good that I am not the only one out there with these
kind of problems.
– I used to talk to the other ladies in the group which
helped and I felt better.
• Some of the female study participants, across a range of
ethnicities, felt that there were no mental health services
meeting the needs of their ethnic group. For example:
A study among Bangladeshi women reported that
– 
participants ‘felt there were few services, if any, for
Bengali women with depression’.
– A study among 31 Irish women reported that 29 of
them believed, as one participant put it, ‘There’s
nowhere for Irish women – you have to get yourself
into a [crisis] situation before you can get help’.
DRE Community Engagement Study Key themes and findings
section 4
• Several study reports pointed out that mental health
services need to offer childcare to encourage mothers of
young children to attend, ‘because mothers can’t come out
of the house without their child, so we miss the services’
and ‘it would be hard for us to drag them [children] with
us’. For example:
A study among Orthodox Jews reported that
– 
participants wanted crèches to be provided at mental
health services, as many Orthodox Jewish women
have large families.
– The sample of a study of Pakistani women agreed
that crèches were needed.
– 47 of 70 study participants from a range of ethnicities
saw the lack of provision for childcare as a barrier
to mental health service access by mothers of
small children.
– A study among Yemeni people reported that some of
their participants thought that home visits by mental
health professionals should be provided for women
with small children.
• The studies that reported the need for male-only services
included a wide variety of ethnicities. Two of these studies
also reported that some South Asian males in their samples
believed such services were non-existent, while there
were plenty for South Asian women:
– 
They forget about Asian men – Asian women get
everything.
– 
[Asian men] are not recognised as an individual group
such as Asian women are. For example [a local mental
health resource centre] has an Asian women’s worker.
Asian men are not catered for.
• A variety of male-only services for those with mental
health problems were suggested by the study participants
including:
– Supported housing for South Asian men with mental
health illnesses.
– Mental health services specifically for Irish men,
because ‘A lot of Irish men get no help’.
Services (including information) aimed at Black
– 
Caribbean males.
– Men’s groups were suggested by:
– Black Caribbeans, who wanted men’s groups, the
study report concluded, ‘for talking as men... to help
them socially, motivate them, be therapeutic and give
them useful ideas’.
Bangladeshis, who wanted a place to meet with
– 
other men and share experiences and support each
other.
Somalis, who wanted to meet other men with mental
– 
health problems.
68
 section 4
Key themes and findings

South Asians: one study reported that their sample

– 
of South Asian men was very appreciative of local
support groups run by voluntary services for men
with mental health problems. As one of the study
participants put it, ‘This group is the only chance I
get to go and meet other Asian men who understand
me’.
– In another study of South Asian males with mental
health problems (in which 32 of the sample of 40 had
a diagnosis of mental illness), 80% said they would
be interested in joining a support group for South
Asian men.
Gender-specific staff
Overall, a majority of study participants who discussed this
issue wanted to be treated by a mental health professional of
the same gender as themselves, or to have a choice. There are
indications that this was more of an issue for females than for
males. However, as illustrated by the following examples, the
proportion of the studies’ samples wanting this varied within
and between ethnic groups and genders:
– 72% of a study of older Chinese people (around one-
third of whom were males) said they preferred to be
cared for by a professional who was the same gender
as themselves.
– In a study of 107 women (100 of whom were Pakistani),
78% wanted to be treated by a female professional.
– A study of 84 older South Asians reported that 11% of
men and 38% of women wanted to choose the gender
of the professional who was treating them.
– However, 57% (24) of 42 Black African, Black British
and Black Caribbean women (32 of whom has been
treated in hospital for a mental health problem) were
unconcerned about the gender of the person treating or
supporting them.
• Cultural norms also led to this demand from both female
and male study participants. For example, a study that
included a sample of 20 older South Asians and five carers
concluded that:
– 
Older generations of Asians find talking to a stranger
of the opposite sex a ‘taboo’.
• Cultural norms also meant that some study participants
from a wide variety of ethnic groups simply described
feeling ‘uncomfortable’ and ‘embarrassed’ with a mental
health professional of the opposite gender.
• Only one of the studies reported an exception to this
preference. A sample of 39 young (aged 14-25) Black
African, Black Caribbean and South Asian males
reported that they preferred to discuss their problems with
female professionals (especially those who are relatively
young), because they thought they would be ‘better
listeners’ and ‘more caring’ than males:
– 
[Females] have got that sort of listening ability, more
likely to listen... are more likely to take you seriously.
– Prefer lady nurses... they can help you.
The study report concluded that this finding may reflect ‘the
caring role women are boxed into in some cultures’. That said,
some of the young men recognised that South Asian males
may be uncomfortable with a South Asian female professional.
The community organisations’ recommendations to
increase mental health services’ cultural competence in
terms of gender can be found in section 6.3.4.

• Muslim and Orthodox Jewish study participants stressed

that their religious laws meant that they should be treated
by a mental health professional of the same gender as
themselves:
– I am a Muslim [woman]: a man should not touch me
or a woman should not touch a man.
– Male nurses in hospitals was considered inappropriate
for religious women concerned about personal modesty
and [who had] limited contact with men other
than husbands and close relatives such as fathers
and brothers.

DRE Community Engagement Study Key themes and findings 69


Key themes and findings
4.3.5 Culturally appropriate treatment and
interventions: ethnicity of mental health service staff
Sixty-seven of the 79 study reports presented data on the
ethnicity of mental health service staff. Discussions on study
participants’ perceptions and experiences surrounding this
issue clearly showed that they did not see it in isolation
from the other elements of cultural competence discussed
throughout section 4.3 (language, faith and religion, food,
gender and racism).
This section examines the arguments presented for and against
matching the ethnicity of staff and patients, and also data
that show that some study participants were indifferent or
undecided. Participants’ suggestions for addressing this are
then summarised.
Arguments for matching the ethnicity of staff
and patients
Throughout this report, the data from the studies have shown
that the major expressed need was for mental health services
and staff that are empathetic and sensitive to cultural and
religious needs. Many of the participants, regardless of
ethnicity, gender and age, stressed that this could be achieved
if staff were the same ethnicity as their patients, although
there were some who did not agree, as discussed shortly.
Matching the ethnicity of staff and patients was especially
demanded by service users, but also was seen as essential
by other study participants.
To support the argument for matching the ethnicity of staff and
patients, several study reports pointed out how the use of
community researchers as the same ethnic group as their target
samples had encouraged study participants to ‘open up’. As a
Black Caribbean participant said, when discussing his need
for Black Caribbean mental health service staff:
– I mean, I am talking to you [community researcher]
now... I feel like I am able to say what I need to say to
you... if I slip into the vernacular, it’s not a problem...
I am just able to relate to you because you are another
black person, you are Caribbean like myself...
so therefore that makes conversing with you so much
easier – being able to tell you what I need to tell you
so much easier.
DRE Community Engagement Study Key themes and findings
section 4
Additional evidence appears throughout this report, where
there are data showing that voluntary and community
organisations were especially valued for providing services
(including mental health support services) in religiously and
culturally supportive environments. The major reason for
this was reported to be because they were staffed by people
who were the same ethnicity and spoke the same language(s)
as those who visited them. The following comment is typical
of many, across all the ethnic groups that participated in
the project:
– 
They [community organisation that provides mental
health support services] have Asian staff, understand
mental health and our culture. I don’t have to explain
my cultural background, I feel comfortable and welcome
and they provide a safe environment.
The following data are only a small selection of the data
in support of matching the ethnicity of staff and clients:
• Black African, Black Caribbean and Black British
study participants. The following comments were
typically made by the study participants from these
ethnic groups:
– Black counsellor would understand where I’m coming
from. They would have an understanding about
oppression and racism. They would know what it’s like
being black and having problems. (Black Caribbean)
– People on the frontline are not Africans, we need more
African workers in mental health. Somebody who can
understand the culture and background is needed.
– [To treat me] they should find another black person that
understands a black person [to treat me], that’s the only
way, you know, because I can relate better to them than
I can relate to a white man. (Black Caribbean)
– To avoid innocent Africans being sectioned according
to the Mental Health Act, which can be due to
misunderstandings, African doctors should be part of
any panel that sections Africans since they better
understand their culture.
A study of Black Caribbean male ex-service users

reported that:
– 
Emanating from the findings is the need for more visible
black staff in the delivery of services as this, in black
men’s perception, allows them to be more open in their
discussions and less alienated.
Of 42 Black African, Black Caribbean and Black British
mental health service users in one of the studies, 31 (74%)
thought staff and patient ethnicity should be the same.
70

Key themes and findings
• Chinese study participants. Relevant comments from
studies among Chinese people included:
– It would be so helpful if we could have more Chinese
doctors and health professionals.
– A doctor from my ethnic background can understand
me deeper and more.
One Chinese study participant qualified this by adding:
– 
I mean real Chinese – you know, sometimes you bump
into a Chinese doctor or a nurse, you thought you’re
being lucky to have found someone who speaks your
language, but surprisingly he or she doesn’t speak
Chinese at all.
• Jewish study participants. A study of 64 Orthodox Jews
reported that their results showed:
– 
A distrust of non-Jewish professionals e.g. doctors,
psychiatrists and nurses, who were seen to be
unsympathetic or ignorant of the community’s cultural
and religious needs. Comments such as ‘most non-
Jewish practitioners have no understanding of our
community and can therefore make serious errors of
judgement’ were commonly made.
• South Asian study participants. The following comments
from South Asians were typical:
– 
[White] staff do not understand my culture issues. I was
stereotyped, assumptions were made.
– 
An Asian support worker would have been more
appropriate as I would not need to explain my issues
as I was already distraught.
– When advice is given to someone that is Asian, the
person giving the advice needs to be Asian, only then
will the advice be useful. One size does not fit all feet -
more Asian workers are required.
– They don’t understand Asian men. Asian culture is too
complicated for them.
– Have Asian workers so that I don’t feel scared and feel
like an alien.
In one study, 62% of 132 Bangladeshis said they
thought more Black and minority ethnic staff would
improve services, especially trained professionals from the
Bangladeshi community.
DRE Community Engagement Study Key themes and findings
section 4
• Turkish Cypriot, Kurdish and Turkish study
participants. A study of 100 men from these communities
reported that:
– 
Historically, we have always had to depend on
external agencies for interpreting services but these
were, invariably, unsatisfactory. We need to proactively
recruit Turkish/Kurdish professionals in different
[mental health service] disciplines.
• Y
 emini study participants. A study among 77 Yemini
people reported a preference for Yemini mental health
practitioners:
– 
Employ Yeminis in Mental Health Services – we tend to
stick to old traditions, we need someone who tends to
understand our culture and religion.
– Any Yemini who suffers from mental health problem
will feel free to talk about it to someone who comes
from the same cultural and ethnic background.
Arguments against matching the ethnicity of
staff and patients
All the studies that reported on the ethnicity of mental health
service staff presented comments in favour of matching
the ethnicity of staff with their patients. However, some –
especially those among Black Caribbeans, Jews and South
Asians – also found some resistance to this, because of fears
that confidentiality would be breached and that their mental
health problems would be seen and treated only from a western
perspective. For example:
• A study that discussed talking therapies with a focus group
of Black Caribbeans reported that some of their
participants did not want a Black Caribbean counsellor
because they feared that confidentiality would be breached:
– 
If they’re black, they may know your family and friends
and tell them your business and it’s supposed to be
confidential and private.
• One study among Jewish people reported that some of
their sample would be worried about confidentiality if they
were treated by Jewish mental health practitioners and that
they preferred culturally competent non-Jewish staff. In
another study, among Orthodox Jews, as discussed in
section 4.1.2, some participants agreed, and also thought
that Jewish staff may ‘judge’ them negatively:
– 
Positive point of non-Jewish counsellor is that you
might not be judged and things will not go back to
the community.
71

Key themes and findings
• A study that included South Asian service users and carers
reported some dissatisfaction with South Asian doctors
and counsellors:
– 
Some participants noticed that the cultural affinity
between them and their doctor was a problem. Some
participants observed Asian doctors made assumptions
and generalisations about them... and often disregarded
their personal views and opinions.
Comments from the South Asian study participants in other
studies confirmed this finding and included:
– Assumptions were made because I am Asian I would
behave in a certain way and I was not listened to by
doctors who seemed to talk to my husband more than
listen to me, especially Asian doctors.
– In my experience Asian doctors seemed to ignore their
own ‘Asianess’ and be more adamant and not listen to
Asian patients. They should have been of more help
to me – I expected they would be but I was listened to
only by white doctors.
– 
This counsellor was an Asian bloke and he said
something like ‘us people, we all go through things like
this’... made you feel like you should just go away and
deal with things. I remember feeling after that remark,
if it had been a white person I would’ve got more help.
I don’t feel I’m going to get the same sort of support
with an Asian person.
That South Asian mental health professionals might break
confidentiality was also an issue for a few study participants
(although no incidence of this occurring was reported).
For example:
– I would never see an Asian GP, because they might
tell someone.
– Some Asian carers felt they would seek support from
other cultures (due to small community, carers did not
want other people knowing their business).
DRE Community Engagement Study Key themes and findings
section 4
Indifference
Some studies reported that some of their participants were
indifferent about whether staff and patients should be of the
same ethnicity. They were more concerned about the
practitioners’ skills. For example:
• When asked if they would prefer to talk to a GP ‘from your
own ethnic background’ if they had mental health problem,
only a minority (14%) of a sample of 100 Black Caribbean,
Arabic-speaking, Chinese, Polish and Portuguese people
said they would, although 48% said they did not have
a preference regarding the ethnicity of their GP. As two of
them explained:
– 
My ethnic background is not important. I’ll go to
somebody who is a good professional.
– As long as doctor can provide me with a service and
confidentiality it doesn’t matter... what his background
is... a doctor is a doctor.
• Some of the participants in several other studies, among a
variety of ethnicities, agreed:
– The hospital, with the staff, usually treat as a patient...
whatever the background or religion of the patient,
is always the same to the doctor.
– It doesn’t matter which religion or background, they
[staff] are coming from as long as that person helps
him [patient] understand that he is ill.
– Ethnicity isn’t important – it’s the amount of knowledge
they have and how much support they are going to
provide... that is most important.
Between a rock and a hard place
Several studies pointed out the quandary facing some of those
who discussed whether or not they wanted a mental health
practitioner of the same ethnicity as themselves. For example:
• Some Black Caribbeans were worried that Black
Caribbean staff would breach confidentiality, yet a focus
group that discussed this issue concluded:
– 
In spite of what we’re saying about black counsellors,
doctors and nurses, we still want black people to help
us with our mental health.
• Some South Asians found it hard to choose because:
– 
White people don’t understand your situation, but the
Asians condemn you and judge you.
• Some Jewish study participants thought that Jewish mental
health practitioners were ‘unprofessional’, yet also
revealed ‘a distrust of non-Jewish professionals’ because
they felt their culture was not understood by them.
72

Key themes and findings
Study participants’ suggestions for resolution
The study participants’ suggestions to resolve the issues
surrounding the ethnicity of mental health service staff that
are discussed above were, unsurprisingly, that there should
be more Black and minority ethnic people delivering mental
health services (including information services) and training
staff in cultural competence. It should be reiterated here that,
when discussing this, study participants’ emphasis, whatever
their ethnicity, was on increasing these services’ cultural and
religious competence, that staff should be ‘kind’ and that the
service environment should make users feel ‘comfortable’ and
‘confident’. It should also be noted that those who argued
against matching the ethnicity of staff and patients, or were
indifferent or indecisive, nevertheless expressed concern about
services’ lack of cultural competence.
• Despite the call for more Black and minority ethnic mental
health service staff, it was recognised that having Black
and minority ethnic staff does not ensure that a service is
culturally competent. As one Black Caribbean study
participant summed up, ‘If you’re Black, you don’t
necessarily come from where all Black people come from’.
Other comments on this issue included:
– 
Class differences or the need to survive in a white
dominated profession may make them [Black Caribbean
staff] feel and behave differently.
– Sometimes Asian doctors don’t have cultural awareness.
They may have had a more mainstream [UK] upbringing
– they may not have cultural knowledge.
– Any staff trained in Eurocentric traditions, including
Asians, African Caribbeans or any other BME origin,
would not necessarily have the skills or the knowledge
for ‘transcultural orientated’ mental health work, unless
they are retrained.
Therefore, as a study participant summed up:
– Getting more black people is not the solution if they
continue to run the white systems with white norms and
white mind set.
DRE Community Engagement Study Key themes and findings
section 4
• Two study reports, one among Black African, Black
British and Black Caribbean service users and carers,
and another among South Asians acknowledged pointed
out that currently, matching the ethnicity of staff and
patient is difficult:
– Like all people, Black people are anxious that their
loved ones will be well cared for by trained and
supervised carers who will respect their family values
and preferences. White carers can almost always be
offered an ethnically matched placement. But a shortage
of black carers and sitters means this is not the case
or black people. This can be off-putting for those who
want to feel their language, culture and religion will
be respected.
– The lack of cultural awareness on the part of non-Asian
workers is a cause of concern as it will not always be
possible to place mental health service users with
workers who come from the same cultural background.
Cultural competence training for all workers needs
to be given priority.
• Participants’ most common suggestion to address the
issues surrounding the ethnicity of staff was for proactive
recruitment and support to increase the numbers of their
ethnic group among mental health service staff.
Reflecting the need for kindness and understanding,
many also stressed that Black and minority ethnic social
workers, outreach workers, counsellors, aftercare
workers, befrienders and carer support workers were
particularly needed.
Other common suggestions were that Black and minority
ethnic people and community organisations played a role
in designing and/or delivering cultural competence training
for staff, and provided information to members of their
communities about mental health and mental health
services, in order to address the stigma of mental illness
and encourage help-seeking.
The community organisations’ recommendations to
increase mental health services’ cultural competence in
terms of the ethnicity of their staff can be found in section
6.3.5.
73

Key themes and findings
4.3.6 Culturally appropriate treatment and
interventions: racism in mental health services
One of the aims of Delivering race equality [DRE] in mental
health care (Department of Health 2005a, p.4) was to help
mental health services comply with the Race Relations
(Amendment) Act 2000. In 2005, Professor (now Lord)
Kamlesh Patel OBE, in his foreword to DRE (p.9) said:
– 
There is discrimination, both direct and indirect, in
mental health care. Just about everyone accepts that,
and that the situation must change – quickly and
permanently... It would be wrong to say that there has
been no progress since [the death of David Bennett],
but no one can pretend there has been enough.
This section begins by a brief examination of the study
participants’ experiences of racial abuse from other members
of the public and the effect on their mental wellbeing. It
continues with their perceptions and experiences of racism in
mental health services and where appropriate, the dates of the
quoted studies are given to indicate progress towards change.
Racial abuse from members of the public
Racial abuse from other members of the public was an
underlying theme throughout the study reports, and was
reported by all ethnic groups (including the Other White
groups, such as Irish people, Irish Travellers and migrant
workers from Eastern Europe), but particularly by:
• Muslims, whatever their ethnicity and especially those
who were identifiable as Muslim by their dress. For
example, a study of 132 female and male Bangladeshis,
97% of whom reported their religion as Islam, reported
that, overall, almost two-thirds had experienced racism.
This had ‘varied from name calling, abuse, harassment,
personal attacks and to attacks on home or property’.
• Asylum seekers, such as the 167 (mostly female)
participants from a variety of South Asian and African
countries participating in a study that reported ‘we heard
many stories of racism, particularly hostile, aggressive
and violent behaviour by white English neighbours towards
newly arrived asylum seekers’.
Many study participants discussed the effect of such racial
abuse on their mental health, stressing that, as one report put it,
‘persistent hostility and racism, low-level non-aggression,
can lead to deterioration of people’s mental wellbeing’.
DRE Community Engagement Study Key themes and findings
section 4
Racism in mental health services
By no means all of the study participants reporting mental
health services’ failure to address their language, faith and
religious, dietary and gender requirements (as detailed in
sections 4.3.1-4.3.4) used the term ‘racism’ (or ‘discrimination’)
to describe this. As one of the study reports pointed out:
– Given the numbers of people who were unable to access
appropriate services, it seems that only direct
discrimination is recognised and that, for example,
lack of access to an interpreter to facilitate engagement
is not identified as discrimination.
Evidence to support this conclusion includes section 4.1,
which reported that study participants were more likely to
fear services’ lack of cultural competence than overt racism.
• Nevertheless, some study reports were in no doubt that
the data they collected on mental health services’ lack
of cultural competence amounted to institutional racism.
For example:
A report on the mental health needs of 87 female and male
Muslims conducted in 2006 concluded:
– In the past, mental health services have responded to
cultural difference in relatively superficial ways, such
as attending to diet and language. Although these are
important, it is clear from the responses of the subjects
in this study that they are insufficient. Shifting the
balance of power is an attempt to develop user defined
services, which are congruent with people’s faith and
values. Both historically and currently there has been a
resistance within services to change and become more
accessible. This,...informed by Eurocentric views of
psychiatry and lack of cultural competency reinforces
racist views that impinge on people’s ability to recover.
A study of 60 male asylum seekers and refugees conducted
in 2008 reported that:
– Primary care was frequently cited... as being one of the
regularly accessed sources of support and an opportunity
clearly exists to make a big difference to the mental
health and wellbeing of asylum seekers and refugees in
this regard... [but] unless an individual was particularly
lucky with the individual GP or ASR [asylum seeker
and refugee] mental health access worker they saw,
their needs would in all likelihood go unmet. As
gatekeepers to mental health services and as agents
routinely accessed by the participants in this research,
local surgeries’ receptionists and GPs are nonetheless
described offering a poor, often racist service
characterised by indifference or ignorance.
74

Key themes and findings
• Of the different ethnics groups that participated in this
project, Black Africans and Black Caribbeans were
particularly likely to discuss racism in mental health
services. As shown in section 4.8, the annual Count me in
censuses of all psychiatric inpatients in England and Wales
show that males and all the Black and mixed White and
Black ethnic groups are overrepresented among inpatients
and those sectioned under the Mental Health Act. Service
providers who participated in several of the studies were
aware of this and expressed concern about the reasons for
it, with some attributing it to services’ lack of cultural
competence, although they did not label this as racism.
However, the 2008 report of a study among 22 Black
African and Black Caribbean men, all of whom had
extensive experience of mental health services, believed
racism had a big role to play in the explanation for
the overrepresentation:
– 
Many respondents clearly feel that not only are they
battling against the stigma and discrimination
associated with mental illness, but [also that] the
reasons for being labelled as such were down to the
racism and ignorance of mental health professionals
about African and African Caribbean culture. This
negative portrayal of Black men by the media and
the fear derived from perceptions about dangerousness
and violence weighs heavily on the minds of all parties.
This viewpoint was echoed by other Black African and
Black Caribbean men across the studies. For example:
– 
Actually, I would be very worried about going to get
help with hearing voices. Because of chances of being
locked up and being stereotyped as a black man are as
high as you get. And actually I think I wouldn’t tell
anyone and keep it to myself, I wouldn’t trust anyone.
– As a Black person with a mental health problem, you’re
just walking into a field of stereotypes. It’s about being
big, Black and dangerous. It’s the known one – it’s the
phrase that people use.
– They are very quick to section black people compared
to white people.
– When they hear about black people with mental health
[problems], all they believe is that we are going to kill
somebody with a gun or knife. Then they say ‘there’s
another black person with mental health, let’s lock him
up’. All they do is write us off because we have mental
health and we’re black.
– The NHS has got worse. They take advantage of people,
especially black people, always drugging you up and
putting us in hospital for a very long time.
DRE Community Engagement Study Key themes and findings
section 4
– If you are Black they treat you differently to white [in]
patients. If you want to talk about things that are
worrying you they will say I will come back and talk to
you about it but they never do, I observe that they don’t
do that when a white patient wants to talk.
• A smaller proportion of South Asian study participants
than Black Africans and Black Caribbeans thought that
racism explained their negative experiences of mental
health services, despite reporting that their cultural needs
were unmet. One study thought that this was because South
Asians were ‘too embarrassed’ to report and complain to
the community researchers about racism. For example:

Of 29 South Asians who had accessed mental health
services:
– Only 2 [male] respondents said they had experienced
discrimination when accessing services and both of
these instances were with their GP.
A study that included 40 South Asian men with mental
health problems, 38 of whom were Indian and 37 of whom
who were mental health service users. Of the service users,
22 did not think that they were treated differently by these
services because they were South Asian. Of the 10 who
did, however, most cited racial discrimination:
– I think White people get everything – best food, seen [by
mental health service staff] longer and treated better.
– 
They discriminate – treat differently on account of
skin colour.
A study of 50 South Asian mental health service users and
carers concluded that:
– 
Notwithstanding the efforts of many public sector
institutions who have given serious consideration to
addressing racial discrimination, sadly the historical
failure of welfare services generally to address the
needs of BME communities still lingers on.
• A minority of participants in other studies, across ethnicities
and including White minority ethnic groups, reported that
they were not (or did not expect to be) treated fairly by
mental health services because of their ethnicity or cultural
background.
All the community organisations’ recommendations
in section 6 address aspects of racism in mental
health services.
75

Key themes and findings
Commentaries
In this section, Jez Buffin and Dr Jonathan Bashford, ISCRI’s
Associate Heads, present their commentaries on cultural
competence. Jez Buffin, who was the lead on the NIMHE
Community Engagement Project discussed in this report,
shares his personal experiences of the project. Jonathan
Bashford presents a valuable framework for cultural
competence, showing how the competence of individuals and
organisations are interdependent.
Community engagement: a very personal journey
Jez Buffin, Associate Head of School, ISCRI, UCLan
Lead on ISCRI Community Engagement Programme
For me, this report represents the culmination of nearly 10
years of work. Although this particular community engagement
project took place over the period 2005-08, my involvement
with community engagement began much earlier when I began
to work with the University of Central Lancashire in 2000.
During this period I have been privileged to have been allowed
to peer through so many different windows in to the lives of so
many different people.
I have visited many of the groups who have taken part in this
and other community engagement projects. I have always been
welcomed and always treated with respect. Despite this, I
have, on many occasions, found myself way beyond my
comfort zone. Should I extend a hand to this particular woman
who is presented before me, or will she find offence? How do
I eat this strange food that has been prepared for me by way of
hospitality without a knife and fork? How can I be sure that the
person who is interpreting for me is actually translating the
words of the person that I am speaking to correctly? What are
those two people at the back of the room who are talking in
another language saying? Are they talking about me? How
strange it feels to be the only white person as I walk in to this
community centre: everyone is looking at me.
And yet at no point did I ever have anything to fear. As the
manager of a national project visiting a community centre I
was always given the red carpet treatment. I was always treated
like a VIP.
I never feared that I might be racially abused or beaten up.
If my words were not translated 100% accurately, it would not
really matter. My conversation was not a matter of life or death
or of liberty or freedom. And anyway, the centres that I visited
always had lots of people who could speak my language so I
could communicate with someone.
If I did not like the food, I enjoyed looking on the hospitality
as a new experience and an opportunity to try something
new. I would not have to eat the same meal again tomorrow.
It was exciting.
DRE Community Engagement Study Key themes and findings
section 4
How different might I have felt if, instead of being a white man
walking in to a community centre belonging to a Black and
minority ethnic community as an honoured guest, I had been a
Black man walking in to a mental health service as a person in
need. A mental health service where my reliance on an
interpreter really did matter; a mental health service where I
could not understand what was being said to me and could not
be sure that what I was saying was fully understood by the
person who was asking me the questions; a mental health
service where many of the words that they used could not be
interpreted for me because I do not have a similar word in my
own language. A mental health service where I am the only
Black person; where I might be treated unfairly, either by staff
or by other service users, because of the colour of my skin;
a service where, if I don’t like the food, I will simply have
to endure it.
The term cultural competence is one that gets bandied about
frequently. It is a nice safe term that we can all sign up to. We
can all agree that services should be culturally competent. But
do any of us really know what we mean by the term? How
many of us use the term as smoke screen to hide behind to
indicate the fact that we want to do the right thing while
keeping hidden the fact that we don’t actually know what the
right thing is?
The 79 study reports that have been summarised in order to
make up this report are not an easy read. Some of them are
hard to read because of the subjects that they deal with. Others
are hard to read because the authors are grappling with a
language that is not their own. And for many of the people who
took part in this programme, this is the first time that they have
ever attempted anything like this. Despite the difficulties, the
reports have been worth struggling with because they offer an
alternative and authentic voice – that of the ‘hard to reach’ and
seldom heard. Concepts such as fear and cultural competence
are unpicked. What is more, the voices of so many different
communities are juxtaposed in such a way that the subtleties
and nuances of different communities can often be seen and
understood. But this begs an important question: whose voices
do we listen to? Whose knowledge and experience do we
value? This goes right to the heart of the community
engagement programme whose raison d’être is to capacity
build and empower communities to have a greater say in the
services that are designed and delivered on their behalf.
Listening to communities is not easy however. It requires time,
patience, understanding and a willingness to set aside
pre-defined ideas about what is important and how
information should be presented.
Set aside your judgements and persevere.
76

Key themes and findings
A basic framework for cultural competency
Jonathan Bashford, Associate Head of School, ISCRI, UCLan
Cultural competency is a term that is being increasingly
used within the public sector, but there is little agreement over
what it means and how it can implemented. While most
organisations conduct some training around race, culture and
diversity, the content of their training programmes varies
considerably (Tamkin et al., 2002). Moreover, the diverse
meanings of ‘cultural competence’ are often highly dependent
on local contexts:
Cultural competency of care and services may be proposed
in quite diverse ways depending on the local context.
This mandates the need for careful research and quality checks
on what is proposed and implemented and applied. (Bhui et
al., 2007 p.14)
There are no nationally recognised standards by which cultural
competence can be measured, let alone defined.
However, a basic framework for assessing cultural competence
can still be developed. The following framework is intended as
a guide and contains only examples of the various skills,
processes and abilities that are involved.
It is based on both individual and organisational competence.
As detailed below, individual competence is skills-based
and relates to individual practitioners’ professional practice
in working with diverse communities and individuals.
Organisational competence, on the other hand, is defined
by the level of maturity in the organisation for addressing
equality and diversity across the full range of its functions
and policies.
Individual competence
Individual competence is based on the skills of acknowledging,
accepting and valuing cultural difference in others – that is,
between and among culturally diverse groups and individuals.
Individual competence is built up through a developmental
process that includes:
• Improving knowledge of local communities, such as
demographics, religious beliefs, sects and practices,
common languages, migration and settlement patterns,
health and social care needs, diet and cultural norms.
• Developing skills in reflective practice including
empathy, the ability to challenge assumptions and
prejudices in self and others, and the ability to work
through communication difficulties and differences with
a sensitive aptitude and attitude.
• Developing communication skills in working with people
whose first language is not English and the ability to work
sensitively and competently with interpreters.
DRE Community Engagement Study Key themes and findings
section 4
Organisational competence
Organisational competence is demonstrated through a clear
commitment to recognising diversity and the development
of proactive policies which embed equality and skills in
working with diverse communities throughout the organisation.
This process includes:
• A clear commitment to equality, valuing diversity and
human rights, which is articulated in the aims and objectives
of the organisation.
• P
 rovision of staff training programmes that meet the
needs of a range of personnel, from basic induction through
to higher-level learning.
• A
 system for engaging and consulting with local
communities and ensuring that services take account
of local diversity.
• L
 eadership and management of equality and diversity
through performance and monitoring systems.
It should be recognised that individual and organisational
cultural competence are interdependent: one cannot be
effective without the other. No matter how skilled or competent
the individual, they require the support of the organisation
in order to achieve effective cultural competence. Similarly,
however well-developed an organisation’s policies and
procedures are, it will fail to meet the needs of a culturally
diverse population without skilled and competent staff to
carry them out.
Taking a maturity approach to cultural competence recognises
that there are various levels through which individuals and
organisation might pass as they move towards a fully-
developed level of competence. This is also in keeping with
models of lifelong learning and organisational development.
For a detailed discussion of this issue, see Bashford, J.J. (2008)
An investigation into the effectiveness of organisational
change management processes for implementing race
equality post the Race Relations (Amendment) Act 2000.
PhD Thesis. Preston, University of Central Lancashire.
77

Key themes and findings
4.4 The journey towards recovery
One of the DRE service characteristics for 2010 was ‘more
BME service users reaching self-reported rates of recovery’.
This section details the issues raised by the studies concerning
recovery: how it is defined and factors facilitating and
hindering recovery. These issues were explored, in varying
degrees, by eight studies.
As reiterated throughout this report, this section cannot be
considered in isolation from those sections on the project’s
findings in relation to other DRE service characteristics. For
example, mental health service users who consider that they
have recovered from a mental illness are highly likely to be
more satisfied with services (section 4.5) and to have rated the
treatment they received as effective (section 4.2).
4.4.1 Defining recovery
A study of 22 Black African and Black Caribbean men, all
of whom had extensive experience of mental health services,
defined recovery as ‘being able to move forward, have a
positive outlook on the future and live independently’.
However, the study report commented that there is some
ambiguity about the term ‘recovery’ in relation to mental
health, noting that there are different perspectives between
what service providers and service users may term recovery,
and further differences among services users in apparently
similar circumstances. The report also outlined some of the
recovery models and concepts and concludes that:
– Recovery can be a relative concept and not a universally
agreed term.
For example, when 50 South Asian service users and carers
were asked ‘How can you can tell if someone has recovered
from their mental illness?’, almost two-thirds could not say.
Those who did attempt an answer focused on physical signs
and behaviour:
– Look normal, go about daily life and handle family
affairs.
– Talking normal, from face they look changed.
4.4.2 Factors facilitating recovery
Factors that facilitate recovery were explored by several
studies and were identified as support from family and
friends; ‘keeping busy’; a positive attitude; faith and religion;
and medication.
Support from family and friends
Several studies reported support from family and friends to
be a crucial element of recovery from a mental illness.
For example:
• Over a third of respondents in a study of 22 Black African
and Black Caribbean men thought that support from their
family and friends is the most important factor for recovery.
DRE Community Engagement Study Key themes and findings
section 4
• A study of 50 Black Caribbean and Mixed Black
Caribbean and White young people, including a
minority of service users, also emphasised the need for
family support to aid recovery. When asked what was
most influential in helping people with mental health
problems to get better, family support was the most
common response.
• In a study that explored the needs of Bangladeshi young
people, the importance of support from family and friends
was again highlighted:
– The boys and girls saw recovery as heavily dependent
on the support and acceptance of others.
‘Keeping busy’
The participants in a study of 22 Black African and Black
Caribbean men thought that being engaged in meaningful
activity and ‘keeping busy’ were key factors in their recovery:
– 
The most important steps to take to recover? Doing
things, keeping busy with things that I enjoy to do.
Almost half the sample highlighted that sport and exercise
were valuable for maintaining their physical health and that
good physical health aided recovery from a mental illness.
In addition, as the study report summed up, employment
or training were also important:
– 
The idea of being ‘normal’ by having a job or attaining
further qualifications to enter the world of work was
seen as a stabilising force for many service users.
Positive attitude
One of the studies that discussed recovery concluded that a
positive sense of self and self-esteem facilitated recovery.
– As important as support from others is support from
within and being able to help oneself.
For example, one study participant stressed the importance of
balancing their mental health condition with other aspects
of their life:
– Let it be a part of what happens and a part of my life
rather than my whole life.
Faith and religion
Some of the study participants who discussed recovery
considered faith or religion to have had a very positive impact
on their pathway to recovery (see section 4.3.2 for a detailed
exploration of the studies’ findings on faith and religion).
Medication
Approximately one quarter of the participants in a study of 22
Black African and Black Caribbean men reported that
medication had helped to decrease the negative symptoms of
their mental health conditions, and thus viewed it as a
facilitating factor in recovery. That said, others in the same
study and in others saw medication as unhelpful, as discussed
in detail in sections 4.2.1 and 4.5.2.
78

Key themes and findings
4.4.3 Factors hindering recovery
Unsurprisingly, there was a strong correlation between the
reported barriers to recovery and lack of the facilitating
factors, detailed above. For example, support from family
and friends was seen as a facilitating factor when present
and as a barrier to recovery when absent.
The factors hindering recovery were identified by the studies
as the lack of support from family and friends; the stigma of
mental illness; a return to an unchanged environment after
treatment; a poor experience of treatment; and disbelief that
recovery is possible.
Lack of support from family and friends
Lack of support from family and friends was seen as a clear
barrier to recovery, as one of the study reports notes:
– 
Many were disowned by their families at the onset or
during their periods of crisis and have also grappled
with being socially excluded. Social exclusion, rejection,
a lack of family ties and support have left many
respondents with very little motivation to recover.
Stigma
Many of the study participants who discussed their recovery
had experienced the effects of the stigma of mental illness
(as discussed in section 4.1.2). As one of them put it:
– 
Society stigmas people and if they see someone with that
mental illness condition I do not think they are so
willing, so accepting, and that is how I picked up on that
prejudice or became affected by that prejudice and I
either became withdrawn or segregated myself and
realised that I had become marginalised.
Unchanged environment
The importance of good living and social environments
were highlighted in a report on a study of Black African and
Black Caribbean men:
– 
Recovery cannot occur when [after treatment] you are
placed in the same old environment, with the same old
habits, the same issues and the same people.
Poor experience of treatment
As discussed elsewhere in this report (sections 4.1.1 and
4.5.8) treatment in a psychiatric unit was experienced by
some as hindering recovery. For example, the report on a
sample of service users among a study of older Chinese
people noted that:
– Overall the conditions experienced by inpatients were
not conducive to mental wellbeing or recovery.
DRE Community Engagement Study Key themes and findings
section 4
Lack of belief that recovery is possible
In a study of older Irish people, mostly male, a few participants
with mental health problems briefly discussed the issue of
recovery, but there was little indication that they believed this
to be possible.
A study that included 37 South Asian male service users
reported that around half said there had been changes in their
mental health, behaviour or attitudes over last 30 days.
However, most reported negative experiences, such as feeling
more anxious and depressed and suffering from insomnia.
Just two of them reported a positive move towards recovery:
– 
I have accepted the condition more and I’m unlikely
to relapse again.
– I have calmed down recently.
A study of 65 service users from a variety of ethnic groups
also revealed their lack of confidence that they would recover.
The report summed up:
– 
They were discouraged about their prospects of getting
better. They said ‘we are not getting better: so when
shall we come out of the mental health thing?’
The community organisations’ recommendations to
increase the proportion of Black and minority ethnic
service users reaching self-reported rates of recovery
can be found in section 6.4.
4.5 Service user and carer satisfaction with
mental health services
This section reports on service users’ and carers’ satisfaction
with a range of mental health practitioners and aspects of
services and treatment: one of the DRE’s aims was to increase
this satisfaction.
It is important that the issues explored in this section are
not be seen in isolation from other sections of this report.
These provide clear evidence that levels of satisfaction with
mental health services, as well as being highly individual
and subjective, are inextricably linked to service users’:
– fears of mental health services (section 4.1);
– perceptions of the effectiveness of the treatment they
received (section 4.2);
– 
experiences and perceptions of services’ cultural
competence (section 4.3); and
– opinions about whether or not they have recovered from
their mental health problems (section 4.4).
79

Key themes and findings
As detailed in section 3.5, 935 mental health service users and
344 carers were involved in this project. Fifty-four of the 79
study reports discussed various aspects of their satisfaction
with services, although only a minority were explicitly asked
how satisfied they were.
It is not possible to draw overall conclusions on levels of
satisfaction across the whole project, nor within and between
different ethnic groups. The range of participating community
organisations, the focus of their studies and their target samples
were extremely diverse (section 3.3.1). Further, each community
organisation devised their own data collection methods, which
ranged from statistical scales to measure satisfaction to individual
case studies (section 3.3.8). It is therefore unsurprising that,
overall, study participants reported a broad range of experiences
and subsequent levels of satisfaction with mental health services.
There were many accounts and statistical data to show that these
services had made a positive impact and, equally, some powerful
stories of problematic experiences. To illustrate:
– A study of 55 Black Caribbeans aged 55 and over
found that three-quarters had experienced mental health
problems, and that almost all had sought some kind of
help for these, including from GPs, counsellors and/or
other mental health specialists. Of these, two-thirds
reported that they were satisfied with the help they got.
An interviewee from a study that included Black
– 
African and Black Caribbean ex-inpatients reported
that ‘Nurses and doctors are too busy to talk to me.
I wanted to share my feelings with them but I could not.
I felt so lonely. I could have talked to other patients, but
I didn’t think that was right. I sometimes thought they
[staff] were avoiding me because I was big and black or
are they really busy?’
4.5.1 GPs
A visit to the GP was the route into mental health services for
many of the service users who participated in this project.
Some had used only the primary care services provided
by GPs, while others had been referred by their GP to
secondary care services.
• Between and among the studies, levels of satisfaction with
GPs varied greatly. Greater satisfaction was reported where
a GP had referred the patient to secondary care services:
– My doctor referred me to a counsellor. He suggested
that I could leave home [because this female study
participant was experiencing domestic violence] and
also gave me addresses of services I could contact. My
GP has been very attentive, caring and supportive.
– I was very ill with depression. I did not want to talk to
anyone. I saw my doctor [GP] about it. She was very
good, very understanding. She referred me to see a
psychiatrist and counsellor… the psychiatrist was very
good, very helpful… I was satisfied from the decision
because it helped me to get better.
DRE Community Engagement Study Key themes and findings
section 4
• However, where a GP had prescribed medication only,
there were many reports of dissatisfaction. For example,
a study of 80 South Asian women reported:
– My doctor’s behaviour was not good… only medicine is
not enough for treatment.
– I used to cry all the time. I was prescribed sleeping
tablets [by a GP]. After that I felt as if my brain was
sleeping all the time. I was not really satisfied because I
did not feel that the medicine was working. I was still
worried and depressed… I was always stressed.
• A study of 100 people focussing on issues relating to
Kurdish, Turkish and Turkish Kurdish young people
also reported varying levels of satisfaction with GPs.
Some were highly satisfied:
– 
My GP is very understanding and supportive of me. He
goes out of his way to help me overcome my mental
health problems. He keeps referring me everywhere,
hoping that I would benefit.
Others were highly dissatisfied:
– 
I couldn’t sleep and I was feeling tearful all the time.
I went to see my GP, but I don’t think he took me
seriously. He told me to talk to friends, keep myself busy
and I should be alright. I went home but within less than
6 months I had a breakdown and had to go into hospital.
• Many of the asylum seekers were dissatisfied with their
GP and there were instances where this had led to
disengagement with mental health services. The problems
were partly due to lack of clarity among staff in GP
surgeries about the rights of asylum seekers to treatment,
but also to GPs’ lack of sensitivity regarding their situation.
The following, from a study of 60 asylum seeking men in
Plymouth, describes one such incident:
– My GP gave me a diagnosis of ‘Asylum Seeker’ on a
sick certificate. Being an asylum seeker is not an illness.
I felt very depressed and angry.
• Some studies – particularly (but not exclusively) those
involving Irish people (including Travellers), especially
those who were also dependent on alcohol – reported
dissatisfaction with GPs’ perceived reluctance to refer
some patients to secondary mental health services.
A typical comment was:
– 
My doctor only talks to me about my alcohol problem,
he never wants to deal with the depression.
As one study report on Irish people summed up:
– Some responses suggested doctors and GPs were not
referring them [study participants] to see psychiatrists
because of alcohol dependency. Respondents felt that
from their experience that GPs did not acknowledge
their signs of depression or milder forms of mental
health problems.
80

Key themes and findings
A study of older Irish men included interviews with GPs and
gained their perspective on this issue. One GP acknowledged
the complex needs of this group of patients and the difficulty
in making a diagnosis of mental illness:
– The Irish patients that I see suffer from depression,
arthritis and heart disease. They suffer from an array of
problems causing serious distress... it is sometimes very
difficult to work out if there is an underlying mental
health problem which caused the patient to turn to
alcohol. There is definitely a link however.
4.5.2 Medication
Medication was also very commonly referred to when
services users discussed their satisfaction with their treatment.
As discussed in section 4.1.1, some service users’ fear of
mental health services centred around what they saw as
services’ tendency to over-medicate, and section 4.2.1
presents data on services’ over-reliance on medication to
treat those with mental health problems. It was clear from the
study reports that the issue of what medication is prescribed,
and under what circumstances, greatly influenced levels of
satisfaction with mental health services.
• 65 service users from a variety of ethnic backgrounds,
were asked about their level of satisfaction with their
medication. Equal proportions expressed satisfaction and
dissatisfaction, although almost two-thirds said their
medications had negative side-effects.
• Those who were compelled to take medication while under
compulsory detention in hospital under the Mental Health
Act 1983 expressed extremely high levels of dissatisfaction
with their medication.
• Several study reports pointed out that, as one of them put it,
‘the use of medication as the first response to distress is a
consistent theme’, negatively affecting patients’ satisfaction
with this aspect of their treatment.
• What were seen as the dehumanising and energy-sapping
effects of medication were reported in two studies of Black
African, Black British and Black Caribbean service users:
– 
They lied to me, said insulin would make me feel
more relaxed. Convinced me to take the drug/poison,
and then injected it into my bum... After this, I could
not function.
• In a study of 55 Black Caribbeans aged 55 and over, some
were dissatisfied with their treatment because it involved
only the use of medication. They expressed a need for
human interaction and the chance to talk:
– 
How can a pill help you deal with things? Does it
talk to you and does it ask how you’re feeling, does it
befriend you?
DRE Community Engagement Study Key themes and findings
section 4
• Some of the study reports focusing on asylum seekers
and refugees also reported dissatisfaction with medication
as a standalone treatment. These reports provide poignant
illustrations of the trauma leading to migration and
the stress and anxiety experienced by those waiting for a
decision on their immigration status. These reports
emphasised that as long as the challenging circumstances
of asylum seekers remain unchanged, medication is an
unsatisfactory response. As two of the study participants
commented:
– 
The GP just gives me prescriptions that do not help –
they only make me sleep and feel nervous. You become
addicted to it and you can’t take care of yourself or
your child. I stopped taking the medication or going to
my GP... I just say I’m fine, even though I am not. I can’t
keep taking the pills, they will destroy my life.
– I had a health check for my little son and the health
visitor asked me some questions about myself, then I
couldn’t help it, I started crying, crying... I was referred
to the mental health people. Were they helpful? I don’t
think so because your fears are still there. And they gave
me medication – tablets. I always felt drowsy, sleepy,
and I couldn’t look after my sons. I didn’t know what
was going on around me, I couldn’t cope, I couldn’t
cook or pick up my son from school. The medication
made things worse. I wanted help with my circumstances.
4.5.3 Services’ religious sensitivity
Several study reports on the Orthodox Jewish and South
Asian communities focussed on levels of satisfaction with
mental health services in terms of services’ sensitivity to their
faith or religion (see section 4.3.2 for a detailed discussion of
this issue). For example:
I n a study of 50 South Asian service users and carers, 39 had
accessed services at their GPs and almost two-thirds of them
felt their GP services were culturally and religiously sensitive.
However, other studies, especially among Muslim samples,
found much higher levels of dissatisfaction with services
because of their perceived religious insensitivity. As one study
report put it:
– T
 he Muslim community is not satisfied with the service
provision and there is a need for improvement in
understanding Islam and Muslims in general.
Studies among Orthodox Jewish communities also reported
dissatisfaction with primary care services because of their lack
of understanding of religious practices. It was thought that this
could lead to a misdiagnosis:
– 
The example of the Holyday of Passover could be
misconstrued to the outside world as an OCD
[Obsessive Compulsive Disorder], with its ‘washing
the entire apartment’ [a requirement for Passover].
81

Key themes and findings
4.5.4 Communication
Many of the study reports related satisfaction levels to the
amount of communication and clarity about the treatment
given by services. As two of the reports concluded:
– 
Where someone’s illness was explained and understood...
and a choice of treatment offered, people, in general,
had a much better perception of the mental health
services provided.
– People need to have their illness and treatment clearly
explained to them. They need to know the possible
side-effects of medication and be made aware of
alternative treatments… when all these things happen,
unsurprisingly, people’s experience and perception of
their care is vastly improved.
Experiences such as the following therefore led to a high
degree of satisfaction:
– 
The doctor tried his best to explain to me what side-
effects I may get [from medication] and reassured me
that I should not get worried because they would subside
with time. So I took the treatment with confidence and
was ready for everything.
• Dissatisfaction was expressed by those who had not had
their treatment explained to them. For example:
– 
One time I was in hospital, I was not sure what was
happening to me. All I knew was, three or four of
the staff were holding me down to give me an injection.
I know I am a big chap but that should not have
happened. I did not want to have it because it was not
explained to me but I was given it without [my] consent.
I was really angry with the nurses and doctors.
In a study of 80 South Asian women who had
– 
experienced domestic violence, some participants
lacked knowledge about the medications they had been
prescribed for their mental health problems. The study
report pointed out that the women almost invariably
referred to being given ‘tablets’, but that they knew
nothing of the nature of these medications, nor of
their side-effects.
– One study report of mainly Black African and Black
Caribbean service users noted, ‘service users felt
inappropriately represented by doctors and staff who
spoke over their heads without taking their personal
views into consideration’.
DRE Community Engagement Study Key themes and findings
section 4
4.5.5 Staffing levels
Lack of resources in terms of available staff and the
consequent amount of time allocated for appointments
affected satisfaction levels. For example:
 study of 45 people examined services for young men from a
A
range of different ethnic groups. The sample included a small
minority of service users who highlighted perceived lack of
staff:
– 
Very disappointed with mental health team, they never
have enough staff.
everal other studies, among a variety of ethnic groups,
S
reported dissatisfaction over seeing a different member
of staff at each consultation or counselling session,
meaning they had to repeat the same information at
every appointment:
– 
With mental health people I didn’t need every day somebody
with a new face... that does not help. I would have preferred
somebody that I am used to. You get close to her, then the
next day somebody else comes in. It’s painful – you have to
tell your story and how you are feeling over again.
– The same clinician would be much better. I have to repeat
myself every time they speak to me.
Lack of satisfaction with the short time offered for
appointments with psychiatrists was a recurring theme among
the study reports. In addition, as discussed in section 7.3.1,
dissatisfaction was also expressed where interpreters were
needed and extra time to allow for the interpreting process
was not given.
4.5.6 Waiting times for treatment
A study among recent migrants from Eastern Europe reported
long waiting times for counselling. Several studies across all
ethnicities reported concerns about the length of time between
referral to, and an appointment with secondary services, one
report commenting that this ‘is almost always an issue’.
4.5.7 Ethnicity of staff
Some studies explored the issue of mental health professionals
being from the same ethnic background as their patients.
Many service users thought that if this was the case, cultural
competence would be ensured and their satisfaction with
the service would increase. This issue is discussed in section
4.3.5, which shows, however, that matching the ethnicity of
patients and professionals does not automatically result in
patient satisfaction.
82

Key themes and findings
4.5.8 Inpatient services
Satisfaction with hospital inpatient services varied among
those who had experienced these, although overall the
majority were dissatisfied. As a study report on South Asian
service users and carers put it:
– 
The personal experiences of South Asian mental health
service users within the mental health institutions
varied. Those who could speak English language and
were provided halal food, prayer corner and were
allowed to wear scarf [hijab] were generally satisfied
with the so-called cultural competency of the service.
• Many of the study participants who were (or had been)
in hospital because of mental illness had been placed
there under a compulsory detention order under the
Mental Health Act 1983. The majority of these were Black
African, Black British or Black Caribbean. In these
circumstances, their level of satisfaction was low. In
addition, a choice of treatments was not always offered to
those detained under the act: these service users reported
a high level of dissatisfaction about their lack of control
over this situation.
• A study of 15 South Asian, Black African and Black
Caribbean service users and carers, and another of
older Chinese people, reported dissatisfaction with
their samples’ inpatient experience. For example:
– 
The nurses would come in and ‘huy huy huy’, pointing
this way and that – they didn’t treat the patients like
human beings
– 
My experience of mental health services has been
poor. Firstly I was assaulted – they call it restraint –
whilst in hospital, and then I was abandoned after
leaving hospital.
– No-one spoke to me or helped me work through my
problems in hospital – I was left to wander around,
being offered drugs by other patients, staff did not
seem interested in me. The whole experience was very
isolating and scary and I would avoid ever going to
hospital again.
Feelings of isolation in a hospital setting was a recurrent
theme among the studies that included these inpatients’
experiences:
– There was no-one there for me to talk to, no-one to
relate to.
– I don’t talk with [staff or other patients]. I talk very
little. There are no other Chinese patients here… I just
want to leave hospital. This is an environment for
English people.
DRE Community Engagement Study Key themes and findings
section 4
• 24 Black African, Black British and Black Caribbean
secondary care service users and carers were asked
‘How would you describe your experience of mental
health services?’. Most were dissatisfied, with almost
half replying ‘poor’ or ‘very poor’ and only 8% said
‘good’. Over half felt their hospital admission could
have been prevented.
• Some studies, however, reported greater satisfaction with
inpatient services. For example:
– 32 Black African, Black British and Black Caribbean
women who had been inpatients were asked to rate the
level of care they had received in hospital. Almost two-
thirds reported that it was fair, good or very good.
• Studies of Irish men and of Black African and Black
Caribbean men also recorded some satisfaction with
inpatient services:
– 
The best support I’ve received was the psychiatric care.
Things got worse before they got better and it took me
a while to get the help I needed. I didn’t want help at
first, I didn’t think there was anything wrong with me…
in the end I got remanded, put under Section 37. I feel
better today, I’ve got things going on and my life is
moving forward.
– They were very good, they were very helpful. When I
was ‘down’ and when I wasn’t happy, they lifted my
confidence and motivation.
4.5.9 Talking therapies
A wide variety of satisfaction rates with talking therapies was
reported by the studies. As discussed in detail in section 4.3,
satisfaction was strongly related to whether or not the relevant
professional was perceived as being able to understand the
patient’s culture and, particularly, whether or not patient and
professional could communicate in the same language (many
examples of this are provided in section 4.3.1). The perceived
effectiveness of talking therapies is discussed in section 4.2.3.
For example, a study of more than 30 South Asian women
who had experienced domestic violence reported a lack of
satisfaction with counselling because of cultural differences
between them and the counsellor:
– 
I had a white middle class female counsellor. I could not
relate to her. She did her best but she was not culturally
aware of my issues.
This finding contrasts with positive reports from a study that
highlighted the satisfaction reported by Bangladeshi women
who had undertaken counselling with a Bangladeshi counsellor.
The women were also extremely disappointed that the service
was ending because of lack of funding.
83

Key themes and findings
• In a study of 40 South Asian males, most of whom had
been diagnosed with a mental illness, psychotherapy/
counselling was rated highest from a list of 24 services
capable of increasing their satisfaction with mental
health services.
• Some study participants expressed satisfaction with talking
therapies as a welcome alternative to medication. The
following comment, from a study of mainly older male
Irish service users, was typical of that study’s participants:
– 
I didn’t want tablets, I just wanted therapy [counselling].
I’ve got it now and it’s really helped.
• However, other Irish and Irish Traveller study participants
expressed dissatisfaction with talking therapies:
– 
The GP referred me to a psychiatrist. I only went a
couple of times… We sat in a circle. There were loads of
men there [the participant is a woman]. The psychiatrist
went around the people. I did not want to discuss my
issues in front of people. I did not expect a group.
– Trying to make me talk and I did not want to. I would not
rush to go see a counsellor or talk to anyone.
• Many other study participants were similarly dissatisfied
with talking therapies. In particular, a study of Black
Africans who had AIDS or were HIV positive, and some
of the studies of asylum seekers and refugees found the
concept of counselling, with a focus on past issues,
unhelpful. As one of the study reports put it, these study
participants thought that:
– 
The Western psychological process of digging into past
personal experiences was unnecessary and tortuous.
For example, the following comments are typical of those
participating in a study of 132 asylum seeker and refugee
men who were showing symptoms of Post-traumatic Stress
Disorder (PTSD) because of the experiences that had led to
them leaving their home countries:
– 
I was always tearful when I was asked my story. I liked
the counsellor but did not want to talk to him. I want to
actively forget.
– I was scared (during counselling) as I wanted to know
what this guy is asking me questions for.
One study report explained the reason for such attitudes
to counselling:
– 
[Information on mental health services should include]
a clear definition of counselling as this service is not
popular in Africa. For people to understand the need
of counselling, they first need to understand what
counselling means.
DRE Community Engagement Study Key themes and findings
section 4
4.5.10 Complementary and ‘alternative’ therapies
Overall, although only a minority of study participants had
received complementary or alternative therapies, they were
satisfied with them and preferred them to medication and
talking therapies (as discussed in section 4.2.4). Evidence of
this satisfaction includes:
• A study of mainly older male Irish mental health service
users, who highlighted the positive effects of art therapy:
– 
I go to art therapy and that really helps me, it brings
everything out of you and helps you get better.
• A study of 80 South Asian women who had received
complementary therapies, including massage and
acupuncture. These therapies were much appreciated.
For example:
– 
The antidepressant tablets were not working, so I tried
several things – acupuncture, herbalist, massage. I did
feel some improvement after using them.
As the study report summed up:
– 
Several women reported using complementary therapies
to improve their mental wellbeing… these services were
particularly sought by women who did not wish to use
medication for their mental health issues.
• A study in which some service users had received
recreational treatments:
– 
The swimming and relaxation therapy worked magic.
• A study that compared levels of satisfaction with
counselling and gardening therapy among a sample of
asylum seeker and refugee men who were experiencing
symptoms of Post-traumatic Stress Disorder (PTSD). All
the men preferred the gardening therapy. Their preference
was backed up by a clinical assessment using Clinical
Outcome in Routine Evaluation (CORE), showing that the
men had found talking therapy to be more distressing than
helpful. They were, however, extremely positive about
gardening therapy:
– 
I just had to dig and be with the soil and just share about
the garden with others, not my past.
– In garden, I was myself and I felt whole, a new being,
just me and my hands.
84

Key themes and findings
4.5.11 Aftercare services
Study participants expressed dissatisfaction with the shortage
of aftercare services and the lack of information about them.
A recurrent theme in several study reports was:
– 
I was not given any information when I left [hospital]…
I didn’t have a clue where I should turn to, not a clue
where I was supposed to go or who I was supposed to go
to and talk to if I became ill again.
Examples of dissatisfaction with aftercare services include:
• A study of Black African, Black British and Black
Caribbean people, which recorded much dissatisfaction
with aftercare services among 24 service users and carers:
– 
I was kicked out of the system and I had to fend for
myself – I had nowhere to go, nowhere to live – no
care co-ordinator or CPN [community psychiatric
nurse]… I was literally taken in [to hospital], drugged
up, kicked out… I never had support from day [aftercare]
services.
– 
The ward forgot to inform him of appointments on
discharge. He lives independently… was given six boxes
of tablets on discharge, and no-one ensured that he can
understand how to medicate safely.
– There needs to be a care co-ordinator in place before
you get out, because in the time between getting out and
getting a care co-ordinator, that’s when many people get
lost in the system… they come out and they vanish
because of their state of mind – and no-one ever chases
you up.

However, the same study also recorded more positive
experiences, including the following from a service user
diagnosed with a serious mental health condition:
– 
The people I see do actually help me… I used to be the
kind of person who bottled up my problems, I didn’t
speak about it at all, but since I started attending
[aftercare sessions] with my co-ordinator and nurses, I
explain to them any problems I might have and they do
actually help.
• A study exploring the experience of 50 South Asian
service users and carers asked service users if they were
satisfied with the services provided after discharge. Half of
them said they were.
DRE Community Engagement Study Key themes and findings
section 4
• A study of 50 young people, mainly Black Caribbean and
Mixed Black Caribbean and White asked participants
whether they thought mental health services met the care
and support needs of young people when they are
discharged from hospital. The majority felt these needs
were unmet and some had personal experience of this:
– They don’t care once you leave.
– I’m just a number to them. They helped me a lot when I
was there [hospital], but I need more help now, just
somewhere to talk about my issues.
– They don’t really care once you have left. I have only
been visited twice since I left [hospital] a year ago.
It was stressed by several study reports that the lack of aftercare
services could result in the so-called ‘revolving door’ pattern:
service users are discharged from psychiatric units with no
aftercare services to address the problems in their day-to-day
lives that may have contributed to their poor mental health
(such as financial and accommodation problems), with the
result that they become mentally unwell again and are re-
admitted to hospital.
There was more satisfaction with aftercare services when
voluntary sector services were involved in the provision. For
example, in a study of 42 Black African, Black British and
Black Caribbean women, a large majority of whom had been
in hospital with a mental illness, two-thirds said they were
satisfied with aftercare services and highlighted the contribution
made by voluntary sector services to this satisfaction (as
discussed further in section 4.5.4).
4.5.12 Care plans
The Care Programme Approach (CPA) is the process that mental
health service providers use to co-ordinate the care for people
who have mental health problems. CPA was introduced by the
Government in 1991, and updated in 1999 (http://cpaa.org.uk/
thecareprogrammeapproach). It has four main elements:
• Assessment
Systematic arrangements for assessing the health and
social needs of people accepted by the specialist mental
health services;
• A Care Plan
The formation of a care plan which addresses the identified
health and social care needs;
• A Key Worker
The appointment of a Key Worker (now Care Co–ordinator)
to keep in close touch with the patient and monitor
care; and
• Regular Review
Regular review, and if need be, agreed changes to the
care plan.
85

Key themes and findings
The CPA operates as two levels – standard and enhanced.
These are described on http://www.lifewithvoices.co.uk/
care_in_the_community as follows:
Standard CPA
The standard CPA is for people who require the support
of only one agency. People on standard level will pose no
danger to themselves or to others and will not be at high risk
if they lose contact with services. The input of the full
multidisciplinary community mental health team will not
be required – service users on standard CPA will generally
require the support of only one or two members of the team.
An example of standard CPA might be someone who has been
assessed as needing a fortnightly visit by a community mental
health nurse (CMHN) plus an appointment with the psychiatrist
at the outpatient clinic every three months. The CMHN will be
the care co-ordinator; the care plan will be the fortnightly
visit, the outpatient appointment and any treatment (such as
medication or counselling).
Enhanced CPA
The enhanced CPA will be for people with complex mental
health needs who need the input of both health and social
services. People on enhanced CPA generally need a range of
community care services and community mental health care
services. This group of people may include those who have
more than one clinical condition and also those who are hard
to link with services and/or with whom it is difficult to maintain
contact. Some people on enhanced CPA are thought to pose a
risk if they lost contact with services. Generally speaking,
enhanced CPA tends to apply to people with the more
severe mental health problems such as schizophrenia or
manic depression.
• Levels of satisfaction with care planning were not
consistent across the study reports, but overall, a majority
reported a lack of satisfaction -– and indeed, a lack of
care plans. For example:
Few of the service users in a study of 108 asylum seekers,
refugees, Chinese and Irish people knew what a care
plan was, and the study report concludes:
– 
As mental health services purport to base their care
around effective care coordination and care planning,
it seems very odd that people who have accessed
services would not know what a care plan is… It is
recognised that not everyone who feels unwell and
goes to the doctors will have a care plan. However, of
those who accessed psychiatrists, counselling or
psychologists, none had an understanding of what a
care plan was, nor did they have one.
DRE Community Engagement Study Key themes and findings
section 4
Similarly, a study of Orthodox Jewish service users

found that:
– Many participants reported that... they did not have a
care plan. This included severe cases such as
schizophrenia and clinical depression.
• Even where care plans were in place, the way in which
they worked in practice was not routinely reported to be
satisfactory. A study of 61 Black African, Black British
and Black Caribbean mental health service users and
carers, for instance, reported their dissatisfaction because
they were not meaningfully involved in planning their
own care:
– Many complained that whilst they may be invited into
the planning processes, nothing of what they said would
be taken into account.
• However a small minority of the study reports recorded
a more positive experience of care planning, such as a
study of 42 Black African, Black British and Black
Caribbean women, most of whom had been in hospital
with a mental illness. Two-thirds said they had been
consulted on their care plans.
4.5.13 Day centres
Mental health day centres typically provide a daily programme
of support, adult education classes, one-to-one support,
groups and activities for people dealing with mental health
issues (although it should be noted that some of the studies
that included older people did not distinguish between day
centres for those with mental health services and those for
older people).
• Satisfaction with day centres was discussed by only a
small minority of the studies, most often those focusing on
older South Asians and Irish people, who reported some
positive experiences of accessing day centres and
satisfaction with being ‘looked after’:
– 
It’s good that they have day centres because when
you attend the staff can notice the warning signs and
changing patterns.
• A study among older South Asians and their carers also
reported some satisfaction with day centres:
– 
Ten participants attended day centre 1-2 days a week…
most said that they found it helpful, but were disappointed
that no Asian food was provided, although they did
enjoy the activities and having company of others.
86

Key themes and findings
• A report on a study of 152 Pakistani people concluded that
more day centres were needed, equipped with culturally
competent staff and activities. The study reported problems
with existing day centres for people with mental health
problems being culturally inappropriate and too public:
– Day centre is situated on the main road and people
feel they will be seen if they go there. Mainstream
[day centres] offer services that cater mainly for white
people, therefore understanding particular problems of
Asians i.e. jinn possession/nazar (evil eye) etc will not
be understood.
• A study of 40 South Asian males reported that their
sample rated highly ‘Asian-specific drop-in day centres’
from a list of services that would increase users’ satisfaction
with mental health services.
4.5.14 Mental health services provided by the
voluntary sector and community organisations
In considering the mental health services offered by local
voluntary and community organisations, and the subsequent
levels of satisfaction with them, it is important to bear in mind
the diverse range of such agencies involved in this project.
Fourteen of the studies were conducted by specialist mental
health agencies, including local branches of national
organisations such as Mind and Rethink: mental health issues
are central to these organisations’ work. Other studies were
conducted by community organisations with a wider remit and
many offered just a few services that support mental health.
Voluntary agencies and community organisations providing
mental health services tended to score highly in satisfaction
ratings. However, data on the mental health services they offer
were not as plentiful as data on primary and secondary services.
Further, the range of mental health services they offered was
generally restricted to talking therapies (although, as discussed
in section 4.2.5, the support and activities offered by voluntary
agencies and community organisations was seen by those
attending as invaluable for maintaining their mental wellbeing).
For example:
• When asked about quality of support received from
voluntary agencies, three-quarters of a sample of 50 South
Asian service users reported a good or excellent service.
No-one reported that the service was poor.
• Satisfaction with the type of support offered by community
organisations is well-illustrated in a study focusing on
Kurdish, Turkish and Turkish Kurdish young people:
– My 17 year-old daughter became very depressed when
her older brother died of a car accident… things got so
bad that I approach the local community centre for help
who provided us the support we needed in seeking help.
They told us everything would be confidential and that it
could happen to anyone. Since then my whole attitude
towards mental health has changed.
DRE Community Engagement Study Key themes and findings
section 4
4.5.15 Services for carers
Although two study reports specifically targeted carers, many
others included carers in their research focus and samples:
overall, a total of 344 carers participated in this project. Some
data on their level of satisfaction with the support available
to them were gathered and overall overwhelmingly revealed
dissatisfaction.
• A large majority of 43 Black African, Black British and
Black Caribbean carers reported, as one female carer put it:
– 
There is a long way to go before the system is acceptable
to African Caribbean people. No-one takes us seriously,
and we are the ones that know our men best – we live
with them and we know what triggers them.
• When some of the carers were asked about their satisfaction
with GPs, the issue of not being listened to was reiterated,
particularly by those caring for a dementia sufferer:
– GP was not interested and did not have a caring attitude
when discussing the matter.
– I was told by my mom’s GP that my mom was getting
old and that’s why she was losing her memory. He
was unsympathetic and prescribed my mom with
sleeping drugs.
• Establishing and building positive working relationships
between service providers and carers was often reported to
be problematic. Frustrations were particularly expressed
regarding the communication between hospitals and service
users’ families. For example:
– 
Sometimes when family members are in hospital or
get sectioned the staff don’t tell you when they have
them – not even a phone call – or tell us when they
change their medication.
• Several studies reported the difficulties carers had in
accessing support. As one study report concluded:
– 
Many carers did not know that help was available to
support them and thought they wouldn’t be entitled to it.
For example, participants from two studies stressed that:
– 
I had no help or information in the first year. I didn’t
have a social worker or know that people could help me.
– Help does come, but by the time it does come, there is
much damage done here.
• Obstacles facing carers in accessing help included what
was seen as excessive paperwork. For example, a study of
Black Africans and Black Caribbeans reported that:
– 
Carers were aware of or would like to access certain
services, but once they come across certain obstacles i.e. too
much paperwork, or the time it takes to access certain funds
or services, they saw it as ‘too much bother’ and would
rather struggle on with the caring role [without help].
87

Key themes and findings
• A study of 20 Bangladeshi users and carers reported that
the carers did not feel supported:
– 
The carers stressed that they were not offered any help
despite having to cope with the young person with
mental health problems. They felt they were neglected
by the services.
• I50 older South Asians and their carers pointed to the
confusion and conflicting advice they encountered:
– 
It took almost 2 years to find out what is useful in
the caring role. There are too many organisations to
approach and conflicting advice given.
• Carers’ assessments are used by social services departments
to decide what help to provide. The purpose of the
assessment is for carers to discuss with social services
what help they need with caring, including support to
maintain the carer’s own health and balance of their
commitments.
The issue of carers’ assessments was highlighted in one
report on dementia. Half of the 78 carers in the study had
been assessed, and of those, two-thirds said they were
dissatisfied or very dissatisfied with the outcome:
– 
It was a paper exercise, as my social worker did not
know what to do with the carer’s assessment after she
had completed it.
– Once my needs were identified, my care co-ordinator
was struggling to find something that was suitable,
because the resources were not there.
This section has revealed the complexities of the factors
resulting in satisfaction and dissatisfaction with mental
health services and how these are related to issues
discussed throughout this report. Indeed, all the
community organisations’ recommendations in section 6
would, if implemented, increase satisfaction with services.
DRE Community Engagement Study Key themes and findings
section 4
4.6 A more active role for Black and minority
ethnic communities and service users
As discussed in sections 3.1.2 and 3.1.6, the NIMHE Community
Engagement Project was designed as the action around one of
the three building blocks of the DRE programme for change:
a programme of community engagement with Black and
minority ethnic populations, to ensure that they have genuine
opportunities to influence mental health policy and provision,
and to promote mental health and recovery.
This project allowed 547 community researchers, 75
community organisations, 935 Black and minority ethnic
current or ex-mental service users, 344 carers and 4,472
other community members to contribute to the development
of mental health policy and to the planning and provision
of services. The project has therefore contributed to the DRE
characteristic of ‘a more active role for BME communities and
BME service users in the training of professionals, in the
development of mental health policy, and in the planning
and provision of services’. Section 5 gives more details of
this achievement in terms of the outcomes for individuals,
community organisations and communities, from a variety
of perspectives.
Two commentaries are included in this section. The first is on
mental health service user involvement in research, which
begins by praising the community organisations that employed
a total of 48 current and ex-service users as community
researchers for this project. The second commentary describes
an approach that has demonstrated the contribution service
users can make to the DRE vision of service characteristics.
The community organisations’ recommendations for a
more active role for members of Black and minority ethnic
communities and Black and minority ethnic service users
in the development of mental health policy, planning and
provision of services are detailed in section 6.6.
88

Key themes and findings
Commentaries
Increased involvement of mental health service users in
planning and delivering these services was a common
recommendation from the community organisations that
participated in this project (section 6). This section presents
two commentaries on this theme. In the first, Mary Nettle,
a mental health service user consultant. She notes with
pleasure that service users were employed as community
researchers for this project and goes on to discuss other
examples of mental health service user involvement in
research. She then details some of the work of the European
Network of (ex) Users and Survivors of Psychiatry (ENUSP),
of which she is chair.
In the second commentary, Robert Little, a Research Fellow at
ISCRI, describes User-Focused Monitoring, an approach that
has demonstrated the contribution service users can make to
the DRE aims.
Service user involvement in research
Mary Nettle, Mental health service user consultant,
Chair, ENUSP
There has been a major development in health and social
science research: it is now being carried out by people who had
previously only been seen as its subjects. At the forefront are
people with experience as mental health service users/survivors
who have taken a lead in pioneering a new approach to research
which is now commanding increasing attention and respect.
I was pleased to see that this report includes work from
research projects throughout the UK and that the principle of
involving service users/survivors in research as researchers as
well as participants was part of some of the projects undertaken.
This project has added to the examples of good practice of
employing service users as researchers, particularly by
universities. The accredited training for this project by the
University of Central Lancashire led to some service users
gaining a university certificate, for instance.
Another example is Suresearch (http://www.suresearch.
bham.ac.uk), which is supported by the Centre for Excellence
in Interdisciplinary Mental Health (CEIMH) at the University
of Birmingham (www.ceimh.bham.ac.uk). Suresearch is the
network of Service Users in Research and Education and
members are users and survivors of mental health services and
their allies who have experience and/or an interest in
mental health research and education. Suresearch provides a
supportive environment and a wide range of opportunities for
members to explore and become involved with. Suresearch
aims to influence the quality, ethics and values of mental health
research by linking with other local, regional and national
partnerships in the mental health arena.
I am co-editor of a book (Sweeney et al. 2008), This is survivor
research, which has articles from many mental health service
users who have undertaken research. This demonstrates that
DRE Community Engagement Study Key themes and findings
section 4
the community engagement approach adopted for the NIMHE
Community Engagement Project is not a one-off. Written and
edited by leaders in the field, This is survivor research:
• explores the theory and practice of survivor research
• provides practical examples of survivor research, and
• offers guidance for people wishing to carry out such
research themselves.
On a European level, the European Network of (ex) Users and
Survivors of Psychiatry (ENUSP – http://www.enusp.org/)
of which I am chair, is an initiative to give (ex-)users and
survivors of psychiatric services a means to communicate, to
exchange opinions, views and experiences in order to support
each other in the personal, political and social struggle against
expulsion, injustice and stigma in our respective countries.
ENUSP is the only grassroots umbrella organisation on
a European level that unifies (among others) national
organisations of (ex-)users and survivors of psychiatry across
the continent to provide a direct representation of people who
are or have been on the receiving end of psychiatric services.
Involvement of both user and survivor organisations from
all over Europe is a unique added value of the network.
ENUSP is currently involved with the European Patients
Forum in a research project looking at patient and public
involvement in all EU-funded research, not just that on
mental health (http://www.eu-patient.eu/). A user researcher,
Elizabeth Winder, is working for ENUSP on the VALUE+
project, which is co-funded under the Public Health Programme
by the European Community (http://www.eu-patient.eu/
projects/valueplus/index.php). The project is underpinned
by the basic premise of VALUE+ – that meaningful
involvement of patients will enhance projects’ outcomes and
these will, in turn, contribute to more effective patient-centred
policy making. At the end of 2009, a conference on patients’
involvement will be the project’s final event and will present
results from the project, concrete tools on patient involvement,
and will be an important platform for fostering continued
political commitment.
ENUSP is also involved with the European Disability
Forum in the EuRADE project (The European Research
Agendas for Disability Equality – http://www.eurade.eu/),
which is supporting service users to do their own research.
EuRADE is funded under the European Union Seventh
Framework Programme for Research and Technological
Development (FP7) and seeks to increase and enhance the
input and full participation of disabled people’s organisations
in future research initiatives that will improve the lives of
disabled people in Europe.
The VALUE+ and EuRADE projects illustrate well that the
desire and necessity for an evidence base from the user
perspective is universal.
89
 section 4
Key themes and findings

The difficulty is sustaining such initiatives. It does concern me
that the enthusiasm of being involved and trained as a user
researcher may not be sustained after the projects are finished.
This is because it is still not routine to employ service users
as researchers and means that expectations may have been
raised which will not be fulfilled. I hope this is not the case but
it would be good to know how these talents will be used in
the future.
User-Focused Monitoring
Robert Little, Research Fellow, ISCRI, UCLan
User-Focused Monitoring (UFM) was developed by the
Sainsbury Centre for Mental Health under the direction of Dr
Diana Rose. Following pilot work carried out in London this
approach has been used in many different mental health sites.
The approach has demonstrated that those with severe and
enduring mental health issues are able to make informed
judgements about the service they receive; are capable of
recognising good practice; and are able to make suggestions
about where care and services can be improved (Rose, 2001).
who did not speak English were less intelligent than those who
did (ibid, 2003).
Conclusions
UFM provides a productive route for accessing users’
experiences of mental health services and also has the potential
to make a significant contribution to the DRE aims. Through
actively involving service users from excluded groups UFM
allows members of Black and minority ethnic communities to
identify what they consider to be their mental health needs. It
is a powerful tool for facilitating the development of more
effective and responsive services, for ensuring greater
community participation and ownership of mental health
services, promoting understanding of non-statutory services
and may ultimately lead to Black and minority ethnic groups
being more directly involved in the process of commissioning.

The UFM process involves a small group of local service users

working together to generate questions they feel need asking
about the services. These service users then use these questions
as the basis for data collection, which they carry out themselves,
typically conducting interviews and focus groups. Importantly,
UFM focuses on those who make heaviest use of the services,
thus engaging with those whose voices are frequently unheard.
This approach may access perceptions and experiences of
service provision which would not be as apparent to more
traditional research methods as interviewees tend to ‘relax and
open up’ once they become aware the interviewer has also
‘been through the system’ (Rose, 2001).

Letting Through Light: Ealing Service User’s Audit

A UFM project of particular relevance to the current report is
the Ealing service user’s audit. This was designed and
implemented by Black and minority ethnic Black and minority
ethnic service users and concentrated on Black and minority
ethnic groups (Ferns, 2003). Considering previous findings
described by Rose (2001), a significant finding was that 58%
of Black and minority ethnic service users described the side-
effects of the medication they were prescribed as ‘bad or very
bad’ (Ferns, 2003). Also, many Black and minority ethnic
service users stated that they would prefer staff from
the same background as their own. Reasons given for this
were primarily around cultural and lingual understanding.
However, some Black and minority ethnic service users stated
they would prefer someone from a different background
because of fears around confidentiality. A critical finding of
this study was that 21% of Black and minority ethnic service
users reported experiencing racism from staff in inpatient units
(ibid, 2003). Similarly, one-third felt hospital treatment was
primarily about control (ibid, 2003). Stereotyping was also
found to be a significant problem, with it being assumed that
Black males could not articulate their feelings and that those

DRE Community Engagement Study Key themes and findings 90


Key themes and findings
4.7 Older people
As discussed in section 3.3.3, applications from community
organisations were particularly sought for studies dealing with
older people, as they were one of groups specifically mentioned
in DRE as needing improved mental health services (section
3.1.2). Fifteen of the 79 studies dealt solely with this issue
and older people were included in the samples of others. The
results have appeared throughout this report. In this section,
Professor Ajit Shah, a specialist in the field of old age
psychiatry, sets them in the context of previous research and
current policy.
Commentary
The needs of a rising tide of older people from
Black and minority ethnic groups
Ajit Shah, Professor of Ageing, Ethnicity and Mental Health,
ISCRI, UCLan
Consultant in Old Age Psychiatry, West London Mental
Health NHS Trust
Demography
The proportion of Black and minority ethnic Black and minority
ethnic individuals over the age of 65 years has progressively
increased from 1% in 1981 to 3% in 1991 to 8.2% in the 2001
population census in England and Wales (Shah et al., 2005a;
2007). This contrasts with 17% of the indigenous population
being over 65 years. Moreover, 7.1% of all elderly individuals in
England and Wales were from Black and minority ethnic groups
in the same 2001 population census. The total number of elderly
from all Black and minority ethnic groups combined was
531,909.
Epidemiology
There are only a few population-based prevalence studies of
mental disorders among Black and minority ethnic elders in the
UK. A small pilot study, in London, of only 45 subjects, reported
a prevalence rate of 34% for dementia in an African Caribbean
group compared with 4% in the indigenous white British group
(Richards et al., 2000). A population-based study of Indian sub-
continent elders in Bradford reported prevalence rates of 7%,
20% and 2% for dementia, depression and anxiety neurosis
respectively (Bhatnagar & Frank, 1997).
A population-based study of Gujarati elders in Leicester reported
prevalence rates of 0% and 20% for dementia in the age-bands
65-74 years and 75+ years respectively (Lindesay et al., 1997a).
These prevalence figures were not significantly different from
the comparison group of indigenous white British elders. This
study also reported prevalence rates of 22%, 1% and 4% for
agoraphobia, simple phobia and panic attacks (Lindesay et al.,
1997a) and that simple phobias were less prevalent among the
Gujarati. Although the prevalence of depression was not
measured, depression scores were not significantly different
between Gujarati and indigenous elders.
DRE Community Engagement Study Key themes and findings
section 4
A population-based study from Liverpool (McCracken et al.,
1997) reported the prevalence of dementia in English speaking
individuals of Black African, Black Caribbean, Black other,
Chinese and Asian origin as 8%, 8%, 2%, 5% and 9%
respectively, similar to the 3% found in the indigenous white
British population. Prevalence in Black Africans and Chinese
who did not speak English was 27% and 21% respectively.
These higher figures among non-English speakers may have
been an artefact of communication and translation difficulties.
The prevalence of depression amongst Black African, Black
Caribbean, Chinese and Asian groups was 19%, 16%, 13% and
15% respectively (McCracken et al., 1997); these figures are
comparable to indigenous elders (Shah 1992a).
A population-based study in Islington reported the prevalence of
dementia in those born in the UK, Ireland, Cyprus, and Africa
and the Caribbean as 10%, 3.6%, 11.3% and 17% respectively
(Livingston et al., 2001). The prevalence of depression in those
born in the UK, Ireland, Cyprus, and Africa and the Caribbean
was 18%, 16.5%, 28% and 14% respectively.
The prevalence of dementia among elders from different Black
and minority ethnic groups in the UK is generally similar or
higher than indigenous elders. The prevalence of depression
among ethnic elders, in general, was similar to that among
indigenous elders: the main exception was a higher prevalence
among those born in Cyprus compared to those born in the UK.
Scale of the problem
The two most common mental disorders in old age are dementia
and depression. The prevalence of dementia doubles every 5.1
years after the age of 60 years (Jorm et al., 1987; Hofman et al.,
1991) and prevalence rates of up to 15% have been reported for
depression in the elderly (Shah, 1992a). These observations, the
demographic changes and the prevalence of dementia and
depression among Black and minority ethnic elders being similar
or higher than that among indigenous elders, suggest that the
absolute number of cases of both dementia and depression will
significantly increase in Black and minority ethnic groups. One
recent study estimated the absolute number of cases of dementia
in the Black and minority ethnic population to be 11,860 in the
UK in 2004 (Kings College London & London School of
Economics, 2007). Another study estimated the absolute number
91

Key themes and findings
of cases of dementia between 7,270 and 10,786 and of depression
between 33,559 and 52,980 among Black and minority ethnic
older people from all groups combined (Shah, 2008).
Access to care
The pathway to reach secondary care Old Age Psychiatry
Services (OAPSs) encompasses several sequential stages: the
first appearance of an illness in the community; consultation
with the GP; identification and management of the illness by the
GP; referral to secondary care; and identification and
management of the illness in secondary care (Goldberg &
Huxley, 1991). Elders and their families from several different
Black and minority ethnic groups, including those from the
African Caribbean, Asian, Chinese and Vietnamese groups, are
well aware of services provided by GPs (Bhalia & Blakemore,
1981; Barker, 1984; McCallum, 1990). They also have high
general practice consultation rate (Donaldson, 1986; Balarajan
et al., 1989; Gillam et al., 1989; Lindesay et al., 1997b;
Livingston et al., 2002). For example, 70% of Gujarati elders in
Leicester had consulted their GP in the preceding month
(Lindesay et al., 1997b). However, the prevalence of Black and
minority ethnic elders in contact with OAPSs is generally low
(Blakemore & Boneham, 1994; Rait & Burns, 1997; Lindesay
et al., 1997b; Shah & Dighe-Deo. 1998; Jagger, 1998).
Possible reasons for the discrepancy between high general
practice consultation rates and low prevalence in OAPSs,
despite the community prevalence of mental illness being
similar or higher among Black and minority ethnic elders than
in the indigenous group, include the influence of factors related
to patients and their families, general practice and secondary
care (Shah et al., 2005b). The current report, compiled from a
series of studies of Black and minority ethnic individuals
(service users, carers and others), is timely in the context of
rising number of elderly people from Black and minority ethnic
groups and their poor representation in secondary care services.
Moreover, the characteristics of the age structure in the different
study samples closely resembles the elderly age structure from
the 2001 population census for Black and minority ethnic groups
(Shah, 2007).
The context for the findings of the NIMHE Community
Engagement Project
Older people from Black and minority ethnic groups with
potential mental illness may be unfamiliar with symptoms of
mental illness (Adamson, 2001; Marwaha & Livingston, 2002;
Bowes & Wilkinson, 2003; Purandare et al., 2007), as
traditionally, few Black and minority ethnic elders reached old
age (Manthorpe & Hettiarachy, 1993; Rait & Burns, 1997).
Consequently they may not recognize symptoms of mental
illness and dismiss them as a function of old age (Shah et al.,
2005b). These reasons may be further enhanced if the patient is
unable to communicate symptoms of mental illness to family
members and the GP either due to lack of appropriate vocabulary
or fluency in English (George & Young, 1991; Shah, 1992,
1997a,b, 1999; Thornton et al., 2009; Thomas et al., 2009); also,
for the same reasons, family members may not be able to
DRE Community Engagement Study Key themes and findings
section 4
communicate their concerns to the GP.
The 79 studies described in the current report highlight these
concerns about communication elegantly. Moreover, one study
of elderly Chinese people highlighted language as one of the
main barriers to accessing services. Furthermore, studies of
elderly people highlighted the lack of availability of interpreters
in consultations with GPs and at hospital appointments. Some
studies also reported concern about the lack of knowledge of
mental health issues amongst interpreters as another barrier.
This is very important as the clinician and the patient cannot be
sure if the interpreter has accurately translated information in
both directions. Some studies also reported concerns about
using family members as interpreters and this has also been
suggested before. The concern here is that family members are
not professional interpreters, are likely to lack training in mental
health, are emotionally involved, and may not wish to or be able
to translate sensitive information. Concern was expressed about
translated information given to individuals who may not be able
to read their first language and suggestion of other mediums of
communication like DVDs were made.Other factors related to
patients and family members that may contribute to barriers to
accessing services include: the belief that nothing can be done;
lack of awareness of available services (Bhalia & Blakemore,
1981; Age Concern/Help the Aged Housing Trust, 1984; Barker,
1984; McCallum, 1990; Lindesay et al., 1997b); lack of
awareness of access procedures for available services (Lindesay
et al., 1997b); belief that available services are inadequate,
inaccessible and culturally insensitive (Hopkins & Bahl, 1993;
Lindesay et al., 1997b; Lawrence et al., 2006); previous poor
experience of services (Lindesay et al., 1997b; Bowes &
Wilkinson, 2003); and fear of stigma attached to mental illness
(Barker, 1984; Manthorpe & Hettiarachy, 1993; Marwaha &
Livingston, 2002; Livingston et al., 2002). The series of studies
described in this report clearly highlights concerns over cultural
sensitivity (e.g. food, language and communication issues),
faith and stigma at different levels, which contribute to barriers
in accessing services.
The current series of studies has been able to substantiate some of
the previously reported concerns from studies of individual Black
and minority ethnic groups for individual disorders, by studying a
large and diverse range of Black and minority ethnic groups.
Policy context
Over the last decade, the mental health of Black and minority
ethnic groups has become a national priority in the United
Kingdom. This has resulted in the publication of a number of
detailed governmental reports, guidelines and policies. These
can broadly be divided into publications relating to Black and
minority ethnic mental health in general and those relating to
elderly mental health with specific mention of Black and
minority ethnic groups. The most influential documents have
been published directly by the Department of Health or related
public bodies including the National Institute for Mental Health
in England (NIMHE), National Institute for Health and Clinical
Excellence (NICE), the Healthcare Commission and the Care
92

Key themes and findings
Services Improvement Partnership (CSIP). The National Service
Framework (NSF) for Mental Health (Department of Health,
1999), primarily covering working age adults (16-65 years),
was one of the first governmental policy documents to
acknowledge ethnic inequalities in mental health service
provision. The NSF for Older People (Department of Health,
2001) set standards for the health and social care of older people.
This document recognised that “older people from Black and
minority ethnic communities need accessible and appropriate
mental health services”, assessments may be “culturally
biased”, assumptions are sometimes made about the willingness
of families to act as primary carers for their older relatives, and
information about services may not be readily available in an
accessible form and tends to rely on translated leaflets and
posters. This document emphasised that mental health services
should “take account of the social and cultural factors affecting
recovery and support”, but made few specific suggestions as to
how cultural awareness might be improved amongst mental
health and social care professionals.
Forget Me Not, the Audit Commission’s analysis of mental
health services for older people in England and Wales
(Audit Commission, 2000, 2002), challenged the commonly
held erroneous assumption that Black and minority ethnic
families “look after their own” and have less need for services.
It recognised that services “may be insensitive to cultural norms
and may threaten carer’s wellbeing if they do not reinforce the
carer’s role in an appropriate manner”. Despite the extensive
recommendations in this report, there was little addressing these
issues other than suggesting that information for users and carers
is distributed “in languages and formats that can be understood
easily by local people”.
Everybody’s Business (Department of Health, 2005b), a service
development guide, aimed to build on the service models
outlined in the NSF for Older People. Although this guide
highlighted the needs of a number of special groups, including
those with early-onset dementia, learning disabilities and older
prisoners, there was no specific reference to Black and minority
ethnic elders other than mentioning that religious and cultural
needs should be taken into account when providing services.
The Inside Outside report (National Institute of Mental Health
England, 2003) recognised the ethnic mental health inequalities
both inside and outside of services and that they had not been
adequately addressed by existing mental health initiatives such
as the NSF for Mental Health and the NSF for Older People.
This report outlined key components to eliminate mental health
inequalities: ensuring accountability and ownership in relation
to Black and minority ethnic communities; developing a
culturally capable service; setting national standards to improve
access, care experience and outcome; and enhancing the cultural
relevance of research and development.
Delivering Race Equality in Mental Health Care is a five-year
action plan for achieving racial equality and tackling
DRE Community Engagement Study Key themes and findings
section 4
discrimination in mental health services in England (Department
of Health, 2005a). It recommends three building blocks: more
appropriate and responsive services – specifically mentioning
the improvement of clinical services for groups including older
people, asylum seekers and children; community engagement –
aiming to engage communities in planning services; better
information – improved monitoring of ethnicity, better
dissemination of information and good practice and a new
regular census of mental health patients. The document
acknowledged that older people from Black and minority ethnic
communities face the double jeopardy of old age and ethnic
minority status, that they can be marginalised in society and
have specific needs. Potential difficulties around communication
and particularly written language were highlighted, as was the
need for services to provide adequate interpretation facilities.
One of the key principles of care outlined in the National
Institute for Clinical Excellence’s (NICE) clinical guidance on
dementia related to diversity (sex, ethnicity, age or religion),
with a strong emphasis on ‘person centered care’ (NICE, 2006).
Although there was no mention of specific Black and minority
ethnic groups, this guidance advocated that the needs and
preferences of dementia-sufferers relating to diversity must be
identified and, where possible, accommodated. There was also
recognition of language as a possible barrier to care, with
recommendations that interpreters are readily available and that
written information is provided in the preferred language and/or
an accessible format. The National Institute for Clinical
Excellence’s technical appraisal on drugs in the category
cholinesterase inhibitors used in the treatment of dementia
(NICE, 2007) was found to be unlawful because it breached the
Race Relations (Amendment) Act 2000. It discriminated against
people from different ethnic backgrounds, particularly those
who first language was not English, because it relied heavily on
an asessment tool developed in English.
The recently published National Dementia Strategy for England
also recognises the importance of ethnicity, culture in religion in
the systematic development of services for dementia
(Department of Health, 2009).
There is clear recognition in these policy documents that Black
and minority ethnic elders face particular challenges and are
especially vulnerable to exclusion, marginalisation and
inequality in mental health promotion and mental health service
access. The studies in the NIMHE Community Engagement
Project make a range of recommendations to reduce barriers to
accessing services. Almost all the recommendations are in
keeping with recommendations from a range of central guidance.
Moreover, unlike all the central guidance, these recommendations
clearly provide practical details of specific ways in which the
barriers can be reduced. Service providers, service commissioners
and policy makers need give serious consideration to these
detailed practical suggestions to reduce barriers to accessing
services.
93

Key themes and findings
4.8 The census
As shown in section 3.1.2, one of the three building blocks
of the programme of change laid out in Delivering race
equality in mental health care (Department of Health 2005a)
was better information, including a yearly census of the
ethnicity of mental health service inpatients.
Since 2005, there have been five annual Count me in
census surveys of all psychiatric inpatients in England
and Wales. These censuses have collected data on a variety
of parameters and the findings of the first four are available
at http://www.cqc.org.uk/guidanceforprofessionals/
healthcare/allhealthcarestaff/countmeincensus.cfm.
It is important to note that the censuses refer only to inpatients,
and that these were a minority of the 935 mental health service
users who participated in this project. Nevertheless, many
study participants and community organisations were aware of
the overrepresentation of some ethnic groups as inpatients, and
the data from the censuses support the findings from the study
reports, particularly regarding Black and minority ethnic
people’s fears of mental health services (section 4.1) and
dissatisfaction with them (section 4.5).
The 2008 census reported that:
• There was an increase in the proportion of psychiatric
inpatients from Black and minority ethnic groups, from
20% in 2005 to 25%.
• Admission rates were increased in the Black Caribbean,
Black African, Other Black, Mixed White and Black
Caribbean, and Mixed White and Black African groups.
This pattern is similar in all the Count me in censuses.
• Admissions rates increased for all the Black and Black
British ethnic groups, except the Other Black group
between 2005 and 2008. The same was observed for
the Other White group.
• Rates of detention under the Mental Health Act 1983
were higher in the Black Caribbean, Black African, Other
Black, and Mixed White and Black Caribbean groups. The
pattern is similar in all the Count me in censuses.
• Detention rates were also higher in the Other White and
Pakistani groups.
• Seclusion rates were higher in the Black Caribbean, Black
African and Other Black groups and this was a consistent
pattern in all the Count me in censuses.
• Restraint rates were higher in the Other White and in the
Mixed White and Black Caribbean groups.
• The proportion of inpatients experiencing physical assaults
was higher in the Mixed White and Black Caribbean, and
in the Other Black groups.
DRE Community Engagement Study Key themes and findings
section 4
• Longest median length of stay was among Black
Caribbean, Mixed White and Black Caribbean, South
Asian, and Chinese groups.
• Inpatients from Black Caribbean, Mixed White and Black
Caribbean, and Other Black groups were overrepresented
in medium and high secure units.
• Rates of detained inpatients with capacity to consent to, but
refusing, treatment were the highest in Black Caribbean,
Black African, Mixed White and Black Caribbean, Other
White, and Other Mixed groups.
• Rates of referral for admission from GPs were lower in
the Black Caribbean, Mixed White and Black Caribbean,
and Pakistani groups.
• Rates of referral for admission from community mental
health teams were lower in Black Caribbean, Mixed
White and Black Caribbean, Other White, and Black
African groups.
• Rates of referral for admission from social services were
lower in the Other White group and higher in the Mixed
White and Black Caribbean group.
• 6% of inpatients reported that English was not their first
language. This was most prevalent in Bangladeshi,
Chinese, Other, and Pakistani groups. 2% of inpatients said
they needed an interpreter and 78% of these were from
Black and minority ethnic groups. Just under 1% reported
using non-verbal interpreters. These proportions are similar
in all Count me in censuses.
• A wide range of religions were represented among inpatients
from all ethnic groups. The proportion of inpatients who did
not have a religion were highest among the mixed group,
and lowest among the South Asian groups.
Regarding the Care Programme Approach (CPA) discussed in
section 4.5.12, the Count me in censuses report that:
• The proportion of inpatients under Enhanced CPA has
progressively increased from 2005 to 2008.
• In 2008, the rate of inpatients under Enhanced CPA was
higher in the Black Caribbean group. There were no other
ethnic differences.
• In 2008, the rates of detained inpatients thought to lack the
capacity to consent to the admission were the highest in
Black Caribbean, Black African, and Other Black groups.
94

Key themes and findings
Commentary
In this commentary, Christina Marriott outlines the changes in
the population and in mental health inpatient services in
England that took place during the period that the NIMHE
Community Engagement Project was being conducted,
relating these to Delivering Race Equality in Mental Health
Services (Department of Health, 2005a) and to data from
the Count me in censuses.
Shifting Sands: The changes in DRE’s context 2005-8
Christina Marriott, Research Fellow, ISCRI, UCLan
This report covers the NIMHE Community Engagement
Project that ran from 2005, the year of the start of Delivering
Race Equality (DRE), until 2008. In these three years, two
highly pertinent contexts changed rapidly and substantially.
This brief commentary will outline these changes in the
population and in mental health inpatient services in England,
which are both important for understanding DRE. These will
then be illustrated by a brief consideration of the use of
seclusion, a practice explicitly addressed as one of the 12
DRE characteristics and linked to service users’ fear of, and
satisfaction with, mental health services.
Changes in Inpatient Mental Health Services
On 31st March 2005, there were 31,668 inpatients within
mental health services in England [1]. By 2008, this number had
reduced to 28,797. This drop of 2,871 beds[2] represents a 9%
reduction over 3 years. At the same time, the number of
patients who were subject to the Mental Health Act (‘formal
patients’) on census day rose from 12,732 to 13,660.
The proportion of patients who were subject to the Mental
Health Act rose from 40% in 2005 to 47% in 2008. As Graph
1 illustrates, this is a consequence of both the drop in the
number of informal inpatients (-20%) and the rise in the
number of formal patients (+7%).
Graph 1: Number of Formal and Informal Inpatients in Mental
Health Services in England (Count Me In 2005-8)
35000
30000
number of inpatients
25000
18936 17643 16126
20000
15000
10000
12732 12263 12924
5000
0
cMi 2005 cMi 2006 cMi 2007
Y
Year (of count Me in census))
Formal patients Informal patients
DRE Community Engagement Study Key themes and findings
section 4
Two of the DRE characteristics relate to reducing the
disproportionately high rates of admission and detention of
Black and minority ethnic people. Each Count Me In census
has shown some ethnic groups, particularly the Black groups,
the White/Black Mixed ethnic groups and the Other White
group, to have significantly higher rates of admission[3]. Once
admitted, rates of detention have been consistently higher
for all the Black groups, the White/Black Caribbean mixed
group and the Other White ethnic group.
As different ethnic groups have significantly different rates of
admission and of detention, these changes to inpatient services
may have differential impacts on the different ethnic groups.
In essence, some groups were more likely to be formal patients
in 2005-2008 and so, as the proportion of formal patients in the
inpatient population increased, there is a potential for a
“concentration effect”. Any consideration of the changes
during DRE will therefore need to consider the impact of
the changes in the overall inpatient service.
Changes to the Population of England 2005-8
2005 to 2008 are also the years of rapid changes to ethnic
profile of England following the expansion of the European
Union in May 2004. In 2004, the Czech Republic, Estonia,
Hungary, Latvia, Lithuania, Poland, Slovakia and Slovenia
(the “A8” countries) joined the EU, with Cyprus, Malta,
Bulgaria and Romania joining on 1st January 2007.
The Office of National Statistics estimate that the number of
UK residents who were born in the A8 countries increased
from 167,000 to 589,000 between 2004 and 2007 – an increase
of 423,000[4]. This included a substantial number of Polish
born people, taking Poland from 12th in the table of overseas
born residents in 2004 to 2nd in 2007. From a UK resident
population of 95,000 in 2004, the Polish community grew to
an estimated 475,000 in 2008[5]. This migration of, primarily,
working age adults, has also changed the age profile of the
UK-resident Polish community which nearly trebled in size in
the three years 2005-8.
This migration has been rapid and has several distinctive
features. It has included a more dispersed residency in the
UK than previous migrations, it appears relatively fluid and
dependent on the availability of work.
15137 In considering DRE, a race-based intervention, we have to
consider this rapidly changing Black and minority ethnic
population. The analysis of Count Me In to date has depended
on the 2001 Census data and, latterly, the 2005 mid-year
population estimates from the Office of National Statistics.
13660
However, these do not capture the rapid changes since 2005
during the course of DRE.
cMi 2008
95
 section 4
Key themes and findings

Count Me In and DRE are not alone in facing these challenges. Graph 2: The Number of Patients Secluded at Least Once
In the context of World Class Commissioning, many healthcare in Previous 3 Months (or current hospital stay, if shorter)
organisations are developing a “rapid response” way of knowing
their local populations and few, if any, are perfect. However, it is 10
clear that estimates of resident populations, from the registrations
8
in maintained schools, GP registrations and National Insurance

number of patients
applications for example, are showing a number of very recent, 6
very rapid population changes. Any consideration of DRE will
need to include an understanding of these changes. 4

A Practical Example – Seclusion in Hospital 2

As briefly outlined above, DRE has operated in two very
rapidly changing environments which must be considered if 0
White other Africa other caribbean
DRE, its characteristics and changes over time are to be & Black Black White
understood. As an example of this, it is of use to examine the caribbean

use of seclusion in hospital. count Me in year

Seclusion is defined in the Mental Health Act’s Code of Practice as: CMI 2005 CMI 2006 CMI 2007 CMI 2008

“the supervised confinement of a patient in a room, which may be

locked. Its sole aim is to contain severely disturbed behaviour
which is likely to cause harm to others” (paragraph 15.43) Graph 3: The Percentage of Patients Secluded at Least Once
in Previous 3 Months (or current hospital stay, if shorter)
Service users, and their representative groups, have argued that its
use should be assumed “to do some harm”[6] to the patient. It is 10
directly addressed in DRE, in the characteristic of a reduction in
use of seclusion for Black and minority ethnic patients. 8
Percentage

Count Me In has shown seclusion rates to be higher in some 6

groups of patients than others, despite it being a relatively rare 4
event. This is true for rates that are standardised against the
inpatient population and so not influenced by the different 2
age and gender profiles for the different ethnic groups. The
seclusion rate for patients from the Other Black group is higher 0
than average for all four years, for the Black Caribbean group White
& Black
caribbean other
White
other
Black
Africa

in three years and for the Black African group in 2005 and caribbean
2008. Of interest here, is the change for the Other White group, count Me in year
which includes the majority of people from the EU migrations
discussed above. 2005 2006 2007 2008

The number of patients in the Other White group who have

been secluded at least once in the past 3 months has grown, as
This change could reflect that the previous group was too
would be expected as the inpatient population in this group
small for a statistically significant effect to be found within
grows. However, the percentage of patients in this group that
Count Me In. An alternative explanation is that the “new”
has been secluded also changes – perhaps indicative of a new
inpatients from this group, seen in 2007 and 2008, have a
age profile in the inpatient population that reflects the new age
disproportionately high rate of seclusion – in a way that the
profile of the UK-resident Other White population. However,
previous “Other White” inpatients have not. It does highlight,
for 2007 and 2008 the seclusion rate for this group is higher
however, that any explanations for changes in mental health
than the average even when standardised against the inpatient
and ethnicity over the period of DRE needs to consider
population for age and gender[7].
both the demographic changes, changes to the services and
methods of measurement.

From Count Me In 2005-8 report and tables.

[1]

http://www.cqc.org.uk/publications.cfm?widCall1=custom
DocManager.search_do_2&tcl_id=2&top_parent=4513&
tax_child=4759&tax_grand_child=4858&search_string=
Accessed 24 August 2009.

DRE Community Engagement Study Key themes and findings 96

 section 4
Key themes and findings

Count Me In records inpatients, not beds, but its number of

[2]

inpatients can be taken as an indication of the beds available

within mental health services.

Although referred to as an “admission rate”, the calculation

[3]

from Count Me In refers to the population-based rate for

people in mental health inpatients services on census day.

UK Resident Population by Country of Birth

[4]

http://www.palgrave-journals.com/pt/journal/v135/n1/
index.html Accessed 24 August 2009.

Population by country of birth and nationality October

[5]

07 – September 08 and Population by country of birth

and nationality 2005. http://www.statistics.gov.uk/statbase/
Product.asp?vlnk=15147 Accessed 24 August 2009.

See, for example, Peter Campbell cited in Coercion and

[6]

Consent: Monitoring the Mental Health Act The Mental Health

Act Commission Thirteenth Biennial Report 2007-9 page 78.
[7]
http://www.cqc.org.uk/_db/_documents/Count_me_in_
census_2008_Results_of_the_national_census_of_
inpatients_in_mental_health_and_learning_disability_
services.pdf Accessed 24 August 2009.

DRE Community Engagement Study Key themes and findings 97

 section 5
Project outcomes

This section details the outcomes of the NIMHE Community 5.1.1 The community researchers’ qualifications
Engagement Project for Black and minority ethnic individuals Each community researcher was assigned a personal tutor
and community organisations. Profiles of individuals and (usually their community organisation’s support worker from
community organisations are presented as illustrations of UCLan) who met with them individually up to three times
these outcomes. during the project to identify their aims and aspirations,
explore the level of qualification (if any) they wanted to
In order to provide a picture of the outcomes of the NIMHE pursue and discuss their progress.
Community Engagement Project for Black and minority ethnic
communities, a survey of 140 community development workers Of the 547 community researchers, 321 (59%) enrolled on the
was undertaken and the results are reported in this section. training workshops that were a mandatory element of this
project and were provided by UCLan. The training included
basic information on aspects of mental health, mental health
services and local and national mental health policies, and on
5.1 Outcomes for Black and minority relevant data collection and analysis methods.
ethnic individuals
After attending at least six of the seven workshops, the
At the final meeting between each UCLan support worker community researchers either gained a University Certificate
and community organisation, an exit form was completed. It of Achievement or could go on to enrol for one of two
included items to capture information about outcomes and other university certificates that required them to submit
experiences for the individuals who had been working on assignments. By the end of the project:
the NIMHE Community Engagement Project as community
researchers. The main outcomes reported related to: – 123 had been awarded a University Certificate of
Achievement;
– enhanced communication skills;
– 143 had been awarded a University Certificate in
– knowledge of mental health conditions and policies; Community Research and Mental Health; and
– the academic learning experience; – 55 had been awarded a University Certificate in
– gaining knowledge of community research, questionnaire Community Research.
design, conducting fieldwork, interviewing and listening
skills, data analysis and report writing;
– learning about mental health service user perspectives;
– project management skills;
– administrative skills;
– budget management;
– organising community meetings and launches;
– 
shadowing members of the steering group to learn
about their work as, for example, mental health service
commissioners and providers;
– building confidence;
– networking and meeting people outside usual circles;
– progression to jobs in mental health work with Black and
minority ethnic people, (including at least 20 who were
employed as community development workers); and
– qualifications from UCLan (see section 5.1.1) and
plans to undertake further study, including degrees in
psychology and social work.

The community researchers were also asked to write short

accounts of their experiences for their study’s report. These
recounted extremely positive outcomes in terms of the new
skills and knowledge about mental health and mental health
services that they had acquired during their training and work
on the project.

DRE Community Engagement Study Project outcomes 98


Project outcomes
5.1.2 Profiles of individuals
The report authors asked five of the community researchers to
give accounts of ‘what happened next’. These are presented
in this section and include four individuals who credit their
involvement in the project with obtaining employment in the
mental health field – three as community development workers
(CDWs) and another as a carer support worker. The fifth
received a national award for his work researching the local
Pakistani community.
Razaw Fatah
Child and Adolescent Mental
Health Services (CAMHS) CDW
for BME Communities, Plymouth
Plymouth is a dispersal site for asylum seekers, so the Black
and minority ethnic community here has grown enormously in
recent years. I myself came here as an asylum seeker initially,
so I have first-hand experience of some of the issues faced by
the community. I became involved in the NIMHE community
engagement project because I was accessing a service within
CAMHS in Plymouth called Kew 5. The service was supporting
my son who had some behaviour problems at that time, and
through my contact with Kew 5 I was invited to get involved
in the community engagement project, which was focussing
on the experiences and needs of asylum seeker and refugee
women and families in Plymouth. I was really happy to take
part in such a project, especially because the University of
Central Lancashire was involved, and I could study for a
qualification.
I learned a lot from the project. It was a big opportunity for
me and opened a door for me to understand more and gain
new skills and knowledge. As well as learning about different
aspects of mental health, my communication skills and
confidence levels improved. This in turn has had a big impact
on me getting the CDW job, which I was offered in August
2008. From my role in the community engagement project
I now have a wealth of knowledge to use every day in my
work. For example, I know that many people in the community
lack the knowledge of services that can support them, and in
my role I can offer guidance and support to families to help
them access the services they need.
In my CDW role, I focus on children from 0-18 years of
age. As well as offering a bridge between them, their families
and services, I can also help services understand more
about the issues and barriers the community experience in
accessing services.
DRE Community Engagement Study Project outcomes
section 5
Ajaib Khan
Project Co-ordinator –
Aap ki Awaaz Project,
Community Development
Service, Rethink
In 2005 I was appointed by Rethink to work with the local
Pakistani community. Shortly after my appointment, Rethink
was successful in its application to take part in the NIMHE
community engagement mental health programme. I led the
work, and recruited a team of 12 to explore the local
Pakistani community’s views of mental health and mental
health services.
This project has paved the way for real improvements in
the way mental health services are offered in the community.
We have developed excellent working relationships with
various organisations including CSIP and the Birmingham &
Solihull Mental Health Foundation Trust and have undertaken
initiatives in partnership with them.
From day one of the project it was a learning experience.
As well as learning about research methods, I was developing
my skills in project management and developing my team.
I was also learning about the ethics of research, data analysis,
and issues connected with translation.
We are now, two years after the research project finished,
really building trust in the community and starting to be able to
gauge the effectiveness of our on-going work. More people in
the community are starting to talk about mental health, taboos
are slowly being broken and that opens up more possibilities.
The success of the community engagement research project
has enabled us to secure funding for on-going related
implementation work, and the work of the team was recognised
on 2007 when I was awarded a Rethink National Service of
the year Award (The Pringle Award) for the work researching
the community.
99

Project outcomes
Arvind Joshi
Carer Support Worker,
Mind in Harrow
Before being invited to join in the NIMHE community
engagement project with Mind in Harrow, researching the
experiences and needs of Gujarati-speaking elders, I knew
very little about mental health. I did, however, know a lot
about learning disabilities as I have been a carer for many
years and have run an agency to support children with
learning disabilities, and their carers. I found during the
community engagement project that there are many
similarities in the way that mental health conditions and
learning disabilities are viewed within the community. For
example, the stigma that is experienced within the family,
plus the tendency to become isolated.
During the project I learned a great deal about mental health
and gained insight into the issues facing older people in
our community. At the end of the project I presented the
findings to many local agencies, including the PCT Local
Implementation Team (LIT). And now, nine months after the
project has finished, we are still working to monitor take up
of the recommendations and improve services for Gujarati
speakers in Harrow. The Mind in Harrow website now has a
special Gujarati section on its website and we received funding
from the PCT to fund a community development worker who
spends half of her time specifically addressing Gujarati
language issues.
For me, being involved in the community engagement project
has opened up new opportunities in mental health, and I am
glad I had the opportunity to get involved in it. I am now
working with Mind in Harrow as a Carer Support Worker,
for people of all ages. Every week I am working with service
users and their carers and am finding the work very satisfying
and rewarding.
DRE Community Engagement Study Project outcomes
section 5
Vlademiro Rocas
Mental Health CDW, Dorset
I am currently working as a Mental Health Community
Development Worker in Dorset, focussing on Black and
Minority Ethnic and hard to reach issues.
My experience of work with mental health began with
the NIMHE community engagement project in 2007. At that
time I was Chair of the Portuguese Association in Somerset
and I was also working with the Somerset Race Equality
Council (SREC). When SREC was invited to become one of
the participating projects, I joined the team as a community
researcher.
The project offered me the chance to learn about mental health,
and to take that knowledge and begin to discuss mental health
in the community, and this was an important first step in
breaking down barriers and tackling stigma around mental
health in the community. My experience had been that any
mental health issues were kept hidden in the Portuguese
community, and this project brought the subject to the surface
for the first time. During the project we came across people
who were not accessing primary care at all, usually due to
language barriers and a lack of knowledge about how the
system works and also a lack of confidence.
Being involved in the community engagement project
taught me how to go through a process of identifying needs
via research and interacting with the community in a
structured way.
In my role in Dorset I have a particular focus on criminal
justice and issues affecting older adults. I am able to use the
knowledge and experience gained during the community
engagement project as a useful background in exploring and
tackling mental health situations, and in encouraging services
to understand the complexities of mental health issues facing
Black and minority ethnic offenders and assure that the
services are prepared and have structure to support the
resettling and engagement of offenders back to the community
after being released from the criminal justice system.
100

Project outcomes
Lorna Markland
CDW, Bedfordshire and Luton
Mental Health and Social Care I worked with one previous service user who had not had a
Partnership NHS Trust
I am currently employed as a Community Development
Worker for Luton & Bedfordshire helping to deliver race
equality in mental health care.
My journey into mental health work began when I joined
the NIMHE community engagement programme. I was lead
researcher with my church’s Mental Health project – Dignity
in Luton. Dignity conducted one of the initial pilot projects
on mental health needs in 2005/6.
I had been very active within the voluntary sector for a
number of years, whilst raising my family. I worked tirelessly
to address inequalities experienced by my community. My
youngest child was nearing school age and I was ready to
return to paid employment.
Getting involved with this research helped me make the transition
back to work with ease! The whole process served as a stepping
stone which built my confidence and personal capacity. I learned
new skills and gained a greater insight into Black and minority
ethnic Mental Health. The accredited training raised my
understanding of the Mental Health system and gave me not only
the university qualification but also the ability to articulate Black
and minority ethnic issues in a new way.
I was delighted to find that my community/social justice
work was a perfect fit within this race equality in mental health
care agenda – the issues being tackled were exactly the same.
A job in this field would allow me to get paid for what I had
been doing for free!
Being a member of the Focused Implementation Site (FIS)
Board – our research project’s steering committee – put me in
the right place at the right time to help shape culturally
sensitive projects as well as embed recommendations from our
report. Having become engrossed in the work so far, I felt the
CDW role would naturally progress the work started, so
decided to apply for a position. I was successfully recruited
to post in December 2007. Once in post, our CDW team
began to take forward projects initiated in the FIS.
The research has given me a very good understanding of the
issues and the improvements people wanted to see. As soon as
I took up post I could start to implement some of the changes
that had been identified. I could be a bridge between the
communities and the world of mental health services. One of
the first things I wanted to change was to demystify the mental
health services among the community. Not enough was known
in the community about services on offer, so I worked with
staff in my Mental Health Trust to develop the website, create
DRE Community Engagement Study Project outcomes
section 5
leaflets and let people in the community know that there is a
range of pathways they can access to get help. For example,
positive experience of accessing services through his GP.
Even though he needed help, he was reluctant to go back to his
GP. I worked with him and his family to access the help he
needed via a different route. Our CDW team also created a
directory of local services.
One of the recommendations made in our community
engagement report was that more links and partnerships
should be made between organisations and the community.
Since taking up my post I have worked on partnership
projects with various organisations such as Nyabingi service
user charity, Mind, the mental health organisation, and
Impact Service User Involvement group.
I have been involved in a whole range of initiatives in
my CDW role. At the moment I am working on improving
cultural competence training within the Trust, and assessing
what people really need from cultural competence training to
bring about positive change for service users. I also hold a
key position within the Trust’s Black and minority ethnic Staff
Network. Playing a useful role in tackling inequalities,
especially around ethnicity, is exactly what I want to be doing.
I love my job and am pleased that I have found a way to
combine my passion with developing a career in this way. I
am at present looking for a relevant university course to assist
with my progression to the next level.
5.2 Outcomes for Black and minority
ethnic community organisations
As detailed in section 5.1, the community organisations
completed exit forms at the end of the project. Although
these did not specifically ask about the project’s outcomes for
communities, some relevant information was given, illustrating
the value of the projects in achieving the DRE service
characteristic ‘a more active role for BME communities and
BME service users in the training of professionals, in the
development of mental health policy, and in the planning and
provision of services’. To illustrate:
– Taking part in this project has increased our awareness of
the needs of people from BME backgrounds and our
engagement with them... we have now increased our BME
involvement – we have recently completed another project
and increased the number of Black and minority ethnic
people working with us as part of our volunteering network
from 35 to 57. (Penwith Community Development Trust,
Cornwall)
– Very positive experience… for us as an organisation –
we have gained a lot from it – we have gained recognition
and spread awareness of what we do to minority ethnic
groups… it is something we can build on. (Dorset Mind)
101

Project outcomes
Other outcomes included that community organisations had:
• Made links with regional networks, especially Black and
minority ethnic and local DRE networks.
• Gained funding for further projects related to mental health
work. For example:
– The Bolton Association and Network of Drop Ins
(BAND) received £30,000 from the local authority to
support Black and minority ethnic carer groups;
– Hikmat (Exeter) was granted £4,000 to set up a Black
and minority ethnic counselling service; and
– 
Mind in Harrow received £100,000 to work with
mental health promotion and the Black and minority
ethnic community following a proposal made based on
the findings of its study for this project.
• Presented their studies’ findings at DRE Local Implementation
Team (LIT) meetings.
• Strengthened their links with primary care trusts.
• Made connections with key people in mental health
services.
• Made connections between secular and religious
organisations.
• Progressed on the implementation of their studies’
recommendations. For example, with local GPs, YWCA
Doncaster Women’s Centre had explored the issues of
female-only service provision and the availability at all
times of female interpreters.
• Received continued financial support for projects on the
basis of their studies. For example, in Manchester, the
Asian Women’s Project gained funding for the continuation
of a Women’s refuge after presenting their findings to local
mental health service providers.
Members of several of the community organisations that took
part in this project also featured in a short film titled ‘Minority
matters’ made by Barnie Choudhury. The film, which reiterates
many of the issues raised in this report, includes case studies
of the lives of mental health service users from various Black
and minority ethnic populations and their experiences of
services. It is available on DVD (contact iscrioffice@uclan.
ac.uk to obtain a copy).
DRE Community Engagement Study Project outcomes
section 5
5.2.1 Profiles of community organisations
The report authors asked three of the participating
community organisations to describe their experiences since
the completion of their studies and on the uptake of their
recommendations. They reported ongoing progress and
partnership work with statutory organisations. Their accounts
are followed by a commentary by a race equality lead
(REL), which further discusses the benefits of the project
for community organisations.
Derbyshire Gypsy Liaison Group (DGLG)
by Siobhan Spencer, DGLG Co-ordinator
In 2007, Derbyshire Gypsy Liaison Group began working
on their community engagement study. The group provides
assistance and information to the Gypsy community in and
around Derbyshire, and works with a local, regional and
national focus.
The focus of our community engagement study was an
exploration of the emotional and wellbeing needs of Romany
Gypsies and Irish Travellers. A team of five joined together
to work on the study, including two CDWs (working as a
job share).
A total of 150 interviews were conducted for the study – 50
Irish Travellers and 100 Romany Gypsies.
Since completion of the study in 2008, progress has been
made. As well as individual capacity building that has had
a positive impact on individual community researchers and
the community, additional work has been commissioned by
West Midlands CSIP (Care Services Improvement Partnership)
specifically exploring emotional wellbeing and mental health
needs of older people, culminating in a report entitled Shoon
te o Puri Folki (Listen to the Elders).
Progress in implementing the recommendations that came
from the community engagement study is as follows:
Improved access to primary health care
It was found in the study that the lack of access to primary
health care for people from Gypsy and Traveller communities
represented a significant hurdle in accessing appropriate
mental health care. Through outreach work and improved
inter-agency working, there have been improvements, even
though there is still work to be done in improving
communication and appropriate responses. One example is
a woman who appeared to be suffering from severe mental
health problems, but was undiagnosed, and was evicted from
a council-run site despite a complex set of circumstances.
The woman has since received a mental health diagnosis
and treatment.
102

Project outcomes
DGLG work is split between accommodation and health
promotion. We have observed that a secure home base
is paramount to good mental health care. Overall, I have
observed a gradual improvement on accommodation issues,
as amendments to the Housing Act 2004 have assisted in
bringing more security to Travellers, since there are fewer
evictions. I feel that improvements are ‘beginning to bite’.
However, there is still quite a lot of work to do, as issues
cannot be addressed until members from the community are
within the health care system. Many support groups still have
to assist community members through the care system to make
sure that they are not lost, as they may have no NHS number.
Continuity of records and information –
patient held record cards
A further issue hampering access to mental health care is the
lack of information available at GP surgeries for individuals
who have moved frequently from place to place. DGLG had
been exploring patient-held record cards, but there were
concerns around confidentiality of information and a swipe
card system is currently being investigated. This would allow
Travellers to hold their own information in a protected format.
Information for the Traveller communities,
including in non-written formats
DGLG have provided information on mental health care
and emergency mental health care services to the communities
via two leaflets as part of the project on older people referred
to above. Also, it was recommended in our community
engagement study that information on mental health care be
provided in formats other than written. DGLG are working
with a Leeds-based organisation to provide a DVD package
of information.
Training packs for service providers on cultural aspects
of life of Romany Gypsies and Irish Travellers
DGLG have been progressing this via sending out reports to
agencies and offering training seminars. These have also been
picked up on by agencies outside Derbyshire including those
in Devon, Sussex and Kent and the North East.
Healing Waters, Croydon
by Marjorie Francis, Director
Healing Waters’ stated mission is ‘to restore the hidden
potential of BME Mental Health / Learning Disabilities service
users, Carers and Older people living in Croydon and
neighbouring boroughs by improving their self confidence and
awareness through empowerment training and related
activities’.
We began our study as part of the community engagement
programme in 2007, focusing on the after-care mental health
services in Croydon for African, African-Caribbean and Black
British male mental health service users, aged 18-45 years.
DRE Community Engagement Study Project outcomes
section 5
Our recommendations included developing a community
resource for BME people, an advocacy support service,
improving monitoring and accountability of mental health
services, plus developing innovative cultural mental health
awareness training.
Since completion of the study, progress has been made towards
realising these recommendations. Healing Waters are now
working in partnership with two other local organisations to
host and support the team of four CDWs in the locality, and
the community engagement study is useful as a reference tool
in continuing to work towards improving access to services.
The PCT has taken the findings and recommendations of the
study on board and work is continuing, particularly regarding
implementing advocacy services and a drop-in resource.
Some change is now taking place in improvement and access
to services, but the positive change is slow in manifesting a
real difference. More work still needs to be done by service
providers in prioritising service users’ views and experiences.
Rethink, Birmingham
Aap ki Awaaz Project
Members of the Rethink research team – Top (l to r): Mohammed
Asghar, Khalid Khokhar, Dr. Khalid Khurshid, Syma Ali, Yasmeen
Shahbaz, Rifat Mumtaz and Misbah Janjua. Bottom (l to r):
Muhammed Shuaib, Tariq Rehman, Ajaib Khan and Amran Ali.
In 2006, Rethink put forward a successful application to
conduct a community engagement project. A team of 12
local members of the Pakistani community, reflecting a broad
mix of backgrounds, ages and career paths, joined forces to
undertake the community engagement programme. The team
was led by Ajaib Khan.
Their study explored the Pakistani community’s view of
mental health and mental health services in Birmingham. A
total of 152 interviews were conducted with members of
the community, two focus groups were held (one with service
users and the other with carers). In addition a self-completion
questionnaire was circulated to 30 service providers (though
only seven responses were received).
103
 section 5
Project outcomes

At the end of the project recommendations were made to

implement ideas and strategies following on from the research
findings. The recommendations were linked to the DRE
service characteristics for 2010 and included the following,
with progress on the recommendations recorded below:

Ongoing awareness raising and education programmes

within the Pakistani community
A wide range of initiatives have been undertaken in partnership
with various organisations. These include provision of a
Mosque roadshow, promoting mental health awareness and
showcasing services and resources available. There has also
been a substantial media campaign to raise awareness of
mental health issues and the findings of the research. This has
included interviews with Ajaib Khan on BBC local radio
stations, Sunrise Radio and Smooth FM, and in the local
press, plus a Noor TV (Sky Channel) programme explaining
the work of the project.

Working more closely with religious leaders –

Imams – to bring about improvements in mental
well-being for the community
There have been several developments in this area. A pilot
training programme for Imams (Mosque prayer leaders) and
mosque leaders from across the West Midlands in mental
health was conducted. The scheme included a 12-week training
programme exploring faith and mental health therapies, aiming
to equip Imams with basic mental health awareness and
training to promote mental health from within the Mosques.

Work is also underway to set up a mental health clinic which

will operate from the mosques. Muslim doctors, consultants
and psychiatrists will be involved on a voluntary basis to give
their time and professional expertise to see members of the
community within an informal surgery context, with advice
and referrals being made as appropriate.

In addition, Islamic Counselling Training has been funded

by the Birmingham & Solihull Mental Health Foundation
Trust to enable a specialist counselling service to be set up
for the Muslim community, with volunteers from the
community receiving training, and establishing a telephone
helpline service.

Further proposals include working with service providers

and trying to bridge the gap between the community and
services by identifying and tackling the barriers to accessing
mental health services. The on-going work will enable better
community engagement and help to fight mental health stigma
within the community.

DRE Community Engagement Study Project outcomes 104


Project outcomes
Commentary
The following commentary from Manjeet Singh, a race
equality lead (REL), discusses her involvement in the
NIMHE Community Engagement Project and its outcomes
in the North West.
A race equality lead’s perspective on supporting
the NIMHE Community Engagement Project
Manjeet Singh, Regional Lead, Equalities in Mental Health,
Equality & Diversity Team, NHS North West
The ISCRI Community Engagement Model (Fountain, Patel
and Buffin, 2007) was a welcome lever for supporting the
implementation of the action plan set out in Delivering race
equality [DRE] in mental health care (Department of Health
2005a). Both inside and outside of the system, mental
health service providers wanted quantitative and qualitative
evidence concerning inequalities experienced by our Black
and minority ethnic communities.
The process from recruitment to commissioning and the
development of projects was an empowering and enabling
experience to be party to, witnessing firsthand the many
opportunities that were created for third sector groups and
community researchers. With regard to the community
organisations that participated in this project, I have seen
how their involvement has increased their visibility in
relation to all stakeholders, and built their capacity.
To support this, I want to highlight Saheli Asian Women’s
Project, (Manchester), who have gone from strength to
strength, having secured their future funding while managing
to stay independent. Their co-ordinator has said to me on a
number of occasions that being involved has really helped to
profile the organisation, assisted with partnership working,
and that they now have much stronger links with the local
authority and secondary care.
In relation to community researchers, I have seen how their
confidence has grown and how they have made life-changing
decisions. For example, one from the North West region had
always wanted to work in another continent and when I recently
spoke with them, they were heading off to do that. Another had
no qualifications and dreamt of being a social worker and is now
studying on an Access to Social Work Course.
Being involved in every stage of the process myself
and establishing strong links with UCLan staff has really
supported my role as a Race Equality Lead in ensuring that all
the North West’s community organisations’ applications to the
NIMHE Community Engagement Project were successfully
commissioned. In particular, I want to highlight how this
collaborative approach was significant to ensuring success
in delivering a project within a prison setting and allowed
some additional creativity in supporting three established
Black and minority ethnic community organisations in
Liverpool to come together as one and deliver a project which
has fostered greater, continuing links between them – Asylum
DRE Community Engagement Study Project outcomes
section 5
Link Merseyside (ALM), Merseyside Chinese Community
Development Association (MCCDA) and Irish Community
Care Merseyside (ICCM).
As the Regional Race Equality Lead for the North West, I have
a professional, ethical, social and personal commitment to
ensure that all the community organisations’ recommendations
are implemented. In the whole process, I have found the
greatest challenge to be how to ensure, in a timely manner,
that their priorities are clearly supported by commissioners.
In the North West, I have looked to our community development
workers (Black and minority ethnic mental health development
workers), who I had already engaged in the projects, to support
the next steps. Together we are working to make this happen
with the continued involvement of the community
organisations. I want to highlight the Liverpool Commissioning
Team who have really engaged with this process. To date, they
have arranged for Asylum Link Merseyside to have access to
primary care services, IAPT[1] (Improving Access to
Psychological Therapies) to meet the needs of asylum
seekers and refugees who, on a daily basis, present with crisis
or trauma and often need on-the-spot support. This is a very
positive step in preventing future hospitalisation. The
commissioners have also provided support to the Merseyside
Chinese Community Development Association (MCCDA) to
help them attract funding for a Chinese community
development worker who will work with the MCCDA to
provide training to staff on mental health and help build
capacity through training volunteers. Regardless of whether
outside funding is successful, the commissioners will work
towards making this happen. In Ashton Leigh and Wigan, the
commissioner and the community development worker have
started working closely with the Hindley Young Offenders
Institute to address the recommendations made by Partners of
Prisoners (POPS) and Families Support Group (Manchester).
They are working on developing a peer support system to
promote wellbeing and positive mental health, developing
appropriate spiritual/religious care, promoting DRE amongst
the workforce and addressing recruitment of a culturally
capable workforce.
As I said earlier, this part of the work is the greatest challenge:
to realise the vision and deliver race equality, which requires
ongoing attention, capacity and partnerships. The process
has really underlined the significance of the building blocks
within DRE: better information, informed by community
engagement, leading to the development of appropriate and
responsive services. I am very hopeful that, in time, working
in collaboration will result in equality of access, equality of
experience and equality of outcomes for the Black and minority
ethnic communities we serve.
http://www.iapt.nhs.uk/about/
[1]
Fountain, J. Patel, K. Buffin, J. (2007) Community engagement:
The Centre for Ethnicity and Health model. in Domenig, D.
Fountain, J. Schatz, E. Bröring, G. (eds.) Overcoming barriers:
migration, marginalisation and access to health and social
services. Amsterdam, Foundation Regenboog AMOC, pp. 50-63.
105

Project outcomes
5.3 Outcomes for Black and minority
ethnic communities: results from a survey
of community development workers
As well as the NIMHE Community Engagement Project, the
appointment of 500 community development workers (CDWs)
was one of the DRE’s provisions to engage communities in
planning services (sections 3.1.2, 3.1.3 and 3.1.6). The final
part of this section reports on a survey conducted by the
authors of this report in order to present CDWs’ views of the
outcomes of this project and its effect within the communities
it targeted.
At the time of writing, between one and three years have
elapsed since the completion of the individual community
organisations’ studies. In order to provide a fuller picture of
the outcomes of the NIMHE Community Engagement Project
and its outcomes for Black and minority ethnic communities in
the intervening years, this section explores CDWs’ experiences.
• A request (and a reminder) to complete an online survey
was sent to the 419 CDWs on the National Mental Health
Development Unit (NMHDU) database in July 2009. 140
responses were received – a response rate of 33%.
• Almost half (63) of the respondents were aware that the
community engagement project with UCLan had taken
place (13 were unsure) and 42 of them said they had been
involved in working with the project in some capacity. The
64 CDWs who reported no awareness of the studies were
screened out of the survey at this stage.
• Of 72 CDWs, 40% (29) had observed improvements in
mental health services for Black and minority ethnic
communities that had occurred as a result of the NIMHE
Community Engagement Project, 21% (15) were unsure
if improvements were connected to the project, and 39%
(28) said they had not observed any improvements
connected to the project.
• Key improvements included improved awareness and
understanding, improved community contacts and
community engagement, better services and information,
improved communication and contact with commissioners.
• A range of issues were felt to be relevant in bringing about
improvements via the project. The most frequently cited
were highlighting Black and minority ethnic communities’
mental health service needs and raising the profile of
mental health in the communities.
• 57 CDWs said they had experienced obstacles in trying to
achieve improvements, especially lack of financial resources
and lack of support from healthcare professionals. Some
responses were particularly noteworthy for the detailed
and passionate accounts of other obstacles, particularly a
perceived lack of clear strategic direction; of senior
DRE Community Engagement Study Project outcomes
section 5
management support; and of the power and authority of
needed for CDWs to act effectively as change agents.
• Just over half of respondents had taken up their posts in
2008 or 2009 and thus were unlikely to have been involved
in the NIMHE Community Engagement Project, which
ran from 2005-2008. However, some of these were
involved in working with the community organisations
that participated in the project to implement their
studies’ recommendations and were able to contribute their
experiences to this survey.
5.3.1 Rationale
One of the building blocks of DRE was for 500 CDWs to
be appointed (section 3.1.2). Of course, not all of these were
in post at the time the community engagement projects
were being conducted. Indeed, one of the expectations of
the NIMHE Community Engagement Project was that a
proportion of the community researchers would develop
their careers as CDWs following their involvement in the
project (six of the respondents in this survey reported that
they had come to their CDW post via this route).
This survey was therefore undertaken to ascertain CDWs’
level of involvement in the NIMHE Community Engagement
Project and to give an indication of progress observed since
completion of the community organisations’ projects.
5.3.2 Methods
The survey was conducted using the online survey tool,
SurveyMonkey. Questions were deliberately designed to be
simple and straightforward to answer. Most were closed
questions with a list of pre-set options, although there were
opportunities for respondents to add further detail (the
questionnaire is provided in appendix 5).
A request to complete the survey was emailed to respondents
in late July 2009, with a closing date of 25 August 2009.
A reminder was sent two weeks before the deadline.
The survey was given ethical approval by the ISCRI ethics
committee at UCLan.
5.3.3 Results
The survey was emailed to the 419 CDWs on the database held
by the NMHDU and 140 (33%) responses were received.
Year of taking up CDW post
Just over half of respondents had taken up their posts in
2008-2009, meaning that they may not have been in post until
after the NIMHE Community Engagement Project had ended.
106
 section 5
Project outcomes

N=120 (no response from 20 CDWs) N=28 (no response from 3 CDWs)

In which year did you take up your CDW post, working on the Which FIS site do you work in?
Delivering Race Equality in Mental Health Care agenda?

25% (7)
2005 5% (6)
25%

14.3% (4)

14.3% (4)
2006 13.3% (16)
20%
2007 27.5% (33)
2008 39.2% (47) 15%

7.1%(2)

7.1%(2)
7.1%(2)

7.1%(2)
7.1%(2)
2009 15% (18)

3.6% (1)

3.6% (1)
3.6% (1)
10%

0% 10% 20% 30% 40% 5%

0%

Leicestershire, northamptonshire
& Rutland
east Birmigham & the Black country
northumberland, tyne & Wear
Hampshire & isle of wight
south east London
south Yorkshire
surrey & sussex
trent
county Durham & tees Valley
Greater Manchester
other
Strategic Health Authority (SHA) Region
There was a spread of completion rates from across the
regions, with the most responses coming from the Midlands
and the North West.

N=121 (no response from 19 CDWs)

In which Strategic Health Authority (SHA) region do you work?

24% (29)

20.7% (25)

25%

20%
9.9% (12)

9.1%(11)

15%
7.4% (9)

7.4% (9)

6.6% (8)

Awareness of and involvement in the NIMHE Community

5.8% (7)
5.8% (7)

3.3% (4)

10% Engagement Project

Of the 111 CDWs who responded to this question, 57% (63)
5% said they were aware of the project, 31% (N=35) were not
and 12% (N=13) were unsure.
0%
42 CDWs reported that they had played a role in the project
north West
east Midlands
south east coast
north east
London
south central
West Midlands
east of england
Yorkshire & the Humber
south West

as follows:
• 40% (N=17) had played a major role in delivering a
community organisation’s project.
• 14% (N=6) had worked as a community researcher on
a project.
• 12% (N=5) had played a minor role in delivering a project.
• 10% (N=4) reported that had been a steering group member.
DRE focused implementation sites (FISs)
• 23% (N=10) said they played an ‘other’ role, comprising:
28% (31) CDWs worked within a FIS, 72% (80) did not support during data collection and/or launch of project,
and 29 did not answer the question. including feedback and analysis of data (5);
Of the 31 working in a FIS, 28 responded to the question lead researcher – co-ordinating and managing the work of
asking them which site they worked in, as shown in the the community researchers (2);
chart below.
support worker with UCLan (2); and

additional research/interpretation of results (1).

DRE Community Engagement Study Project outcomes 107


Project outcomes
The proportion of the sample responding to the questions
reported in the following sections varies. This is because
those CDWs who were unaware of the NIMHE Community
Engagement Project (because they did not work in a
FIS or had not been involved in their local community
organisations’ projects) were less likely to be in a position
to respond in detail to questions about improvements
related to the project. However, some of the CDWs who
had taken up their posts in or after summer 2008 (when
the project ended) were involved in working with the
community organisations that participated in the project
to implement their studies’ recommendations and were
able to contribute their experiences to this survey.
Awareness of improvements
Seventy-two CDWs answered this question. Of these, just
over 60% reported that they had observed improvements,
although half of these said they felt the improvements were
not necessarily connected with the community engagement
project.
N=72
Are you aware of improvements in mental health services for
Black and minority ethnic communities that have occured as
a result of any of the DRE/UCLan Mental Health Community
Engagement projects?
50%
40.3% (29) 38.9% (28)
40%
30%
20.8% (15)
20%
10%
0%
Yes I have seen improvements made as a result of the
DRE/UCLan Community Engagement Projects
I have seen improvements, but I am not sure if they are
connected to the DRE/UCLan Community Engagement Project
I have not observed improvements based on DRE/UCLan
Community Engagement Project
Those respondents (N=44) who had observed improvements
were asked to identify up to three regarding mental health and
the Black and minority ethnic communities with whom they
work. Thirty-two chose to do this.
The question was open-ended, but a number of clear
themes emerged, and these are listed below in order of
frequency cited:
DRE Community Engagement Study Project outcomes
section 5
• Increased awareness and understanding was the
improvement most often cited. While it was not always
clear from the responses exactly whose increased awareness
was being referred to (for example, community members’,
service users’ or commissioners’), there was a sense that it
stretched in several directions: greater awareness of mental
health and what it means within the community at large;
greater awareness of services; and increased understanding
by service providers of the communities they serve.
• M
 ore community contacts / engagement / access to
dialogue and connection with key communities. There
was a wide range of responses within this theme. Some
were very general, such as ‘more community contacts’.
Others were very specific: for example, one respondent
from the North West noted that commissioners are working
with communities to implement specific recommendations
from the project.
• Better services and information were also frequently
reported. These again included the general and the specific.
Examples of improved services included older Black
African and Black Caribbean people being offered chair
yoga to improve both their physical and mental health,
and that a Black and minority ethnic counselling service
had been established.
• The establishment of the CDW roles to work with
communities.
• Better relationships and communications with and
between service users, PCTs and commissioners, plus
reports of greater commitment of service providers to
meet the needs of Black and minority ethnic communities.
• Less fear of mental health services and reduced stigma
of mental health issues and a climate of greater openness
on matters of mental health and wellbeing.
• I ncreased confidence in services among those communities
that took part in the project.
• C
 ontinuation of DRE Board to progress learning and
gradual change (DRE regional boards were set up in each
area to bring together key people relating to mental
health and DRE).
• More consultation with Black and minority ethnic
communities and funding made available for particular
projects.
• Use of innovative media, such as local radio, to increase
awareness of mental health issues and where to find help.
• Improved partnership working with voluntary agencies.
108

Project outcomes
How the NIMHE Community Engagement Project helped to
bring about improvements
35 CDWs answered the question on how the NIMHE
Community Engagement Project helped to bring about
improvements. As shown in the chart below, the two
improvements considered by the vast majority of respondents
to have resulted from the project were that it highlighted
community needs and raised the profile of mental health
issues in the communities.
N=35
How did the DRE Mental Health/UCLan Community Engagement
Project help to bring about these improvements?
100% 88.6% 85.7%
(31) (30)
80% 65.7% 68.6%
(24)
57.1% (23)
60% (20)
37.1%
40% (13)
20% 8.6%
(3)
0%
Highlighted community needs
Helped to open up access to communities for service
providers/commissioners
Helped identify new services that are needed
Raised prifile of mental health issues in the communities
Created a team of trained community researchers to continue
work in the community for service improvement
Developed links between community groups and service
providers and commissioners
Other
Four respondents noted additional factors that they thought
had brought about improvement. These included:
• The improved alignment of services to the local needs to
build partnership working opportunities.
• The ‘excellent template’ for community engagement
provided by one of the reports on the Orthodox Jewish
Community (while noting the complexities of correctly
defining and identifying particular factions of the Jewish
communities, such as Charedi Jews, and the differences
in approach and tradition between the diverse elements
of these communities).
Obstacles preventing improvements from taking place
Fifty-seven CDWs answered the question asking whether they
felt there were obstacles preventing improvements taking place.
The vast majority (91%) had observed and experienced obstacles.
DRE Community Engagement Study Project outcomes
section 5
When asked what these obstacles were, 53 respondents offered
their views. Lack of financial resource was the most common
answer from the list offered (65%), but was closely followed
by other issues taking priority (59%) and lack of support from
healthcare professionals (51%).
N=53
What are the obstacles, from your point of view?
80%
64.2%
70% (34) 58.5%
(31) 54.7% 88.6%
60% (27)
(31)
50% 37.7% 35.8%
40% (20) (19)
30%
20%
10%
0%
Lack of financial resources
Other issues taking priority
Lack of support from healthcare professionals
Lack of management from senior management
Lack of human resources
Other issues
Over a third of the CDWs (19) also felt that ‘other’ obstacles
had prevented improvements, and some responses gave very
detailed and passionate accounts of these that clearly expressed
their frustration and disappointment. Key themes were:
• Lack of local support or only tokenistic support from
commissioners, primary care trust service providers and
senior management.
• R
 acism/institutional racism/lack of interest in Black
and minority ethnic communities. In addition to these,
underlying problems were highlighted regarding the lack of
a clear understanding of what defines Black and minority
ethnic communities. It was reported that in some cases, the
prevailing perception is that colour rather than ethnicity is
the key defining factor. This lack of understanding was
particularly (but not exclusively) felt to be the case regarding
White minorities such as the Irish and Traveller communities.
It was noted that the lack of commitment to working with
these less visible minority ethnic groups is sometimes
exacerbated by services’ under-recording of ethnicity.
• Isolation of CDWs, coupled with lack of support and
training and what were considered to be unreasonable
demands to show outcomes. This isolation was sometimes
identified as resulting from a view that once a CDW is in
post, the ‘box has been ticked’ with only limited support
offered thereafter.
109

Project outcomes
• Lack of strategic direction – Several respondents
commented on concerns regarding strategic direction, and
one CDW summed up the problem as a ‘strategic fog – a
surfeit of strategies (Mental Health, Community Cohesion
etc.) without clear operational structures or commitments
leads to a major implementation deficit’.
• Lack of power of those passionate about the issues to
really effect change.
• Lack of referral pathways that reflect cultural competence.
• R
esistance of services to community development
approaches. This was summed up by one respondent as
‘allowing too much emphasis on CDWs as the method by
which services will be transformed – when in fact NHS
systems are peculiarly resistant to community development
approaches – successful change within the NHS requires
a different model to be used’.
• Lack of measurable outcomes at the outset for DRE
(now evidenced by the DRE Dashboard – http://www.
mentalhealthequalities.org.uk/our-work/delivering-
race-equality/dashboard/). One CDW commented that
the delay in the development of the DRE Dashboard had
‘allow[ed] recalcitrant Trust types to bemoan the lack of
measurable outcomes measures – thus allowing the agenda
to be sidelined in favour of things that could be measured’.
• T
 ime-limited DRE agenda. There was concern at the short-
term nature of the DRE and the limitations this places on the
scope for improvement, expressed by one CDW as
‘abandoning DRE to its fate – there should have been DRE2,
allowing for another 5 years building on the slow won
change. We’re now fighting for Race and Ethnicity to be seen
as important amongst the other single equality strands’.
• Legal complexities and disputed statistics at national
and local levels.
Additional comments
Respondents were invited to add any comments that had not been
addressed in the questionnaire. There were 26 responses and these
were so varied that an analysis of key themes is not possible.
Comments are listed below and are quoted verbatim. Some points,
however, reiterated those made elsewhere in this survey report, or
discussed matters beyond the parameters of the survey, and are
therefore not reproduced. Some CDWs reported positive
experiences of the NIMHE Community Engagement Project,
while others suggested areas for improvement.
I have seen copies of the Community Engagement Projects. They
are very detailed and I always refer to them when I need to engage
with Community groups.
The projects were very worthwhile. They helped CDWs to
look directly at community concerns and pick up on the main
issues, however CDWs have been limited financially in trying to
meet the needs identified.
DRE Community Engagement Study Project outcomes
section 5
We recruited two CDWs from the communities who undertook the
research and many others have gone on to CDW roles elsewhere
or other health related roles.
I hear they have been quite successful in some areas, hence they
could be taken as examples of good practice.
Overall there are good initiatives because they involve community
members that reinforce capacity building and engaging
community easily.
These projects has set the way for first class services for BME
communities and this needs to be established and maintained
nationally and reported for visibility of service.
Even though I have not observed any direct improvement, the
community engagement project reports did give me inspiration
and tools for working towards improving mental health services
for BME communities in my particular area. I shared the reports
at our BME Mental Health Forum and findings did inform those
managers with little or no knowledge of mental health needs in
BME communities. However, it is too soon to observe any tangible
improvements.
UCLan need to continue to be involved with the projects after
research is completed in order to support the conversations with
commissioners and help the community groups and/or CDW
teams through the implementation stages. UCLan would also do
well to ensure that engagement with senior management in the
NHS organisations is a priority. BME organisations have tended
to be left to struggle on their own, usually with minimum success,
to engage senior managers in the local context.
They were too academic – they needed to be more practice based.
Too intellectualised, “Ivory tower” attitude of UCLan, felt like an
exercise rather than a “real” reflection of experiences.
The structure of the different stages of the UCLan research was
not very clear until towards the end.
While it was a brilliant idea, there was not commitment on NHS
to take community engagement forward. Another tick box exercise.
The community engagement project was very useful, but need to
push forward.
I think the benefits from the engagements and the contributions
from participants need more than just words in a report.
If people only see short term moves and do not experience an
increase in sustainable respectful relationships, this agenda will
have failed to leave a lasting improvement on an arrogant
Eurocentric approach to Wellbeing. Realistically this approach
has to counter unwitting and hidden racism within the fabric of
service delivery across all uninformed departments and their staff
within government both national and local.
110

Project outcomes
Commentaries
This section ends with reflections, illustrations and
recommendations for mental health service development by
experts in the field of mental health service delivery. In the
first commentary, Marcel Vige reflects on aspects of the five
years of DRE and asks ‘where to from here?’ In the second,
Bill Fulford and Malcolm King give one of the answers to that
question. They describe a project that aims to develop the
skills of DRE community development workers (CDWs) to
work with mental health professionals in pilot areas. The
project will particularly address the fear of mental health
services among Black and minority ethnic communities, and
the overrepresentation of young men from the Black and Black
British ethnic groups who are detained under the Mental
Health Act 1983 (as detailed in section 4.8).
Delivering Race Equality (DRE) – some reflections
Marcel Vige, Manager, Diverse Minds, Mind
As DRE draws to a close hopefully to live on in the upcoming
New Horizons strategy[1], hindsight reveals the extent to which
the scope of the original vision captured by the characteristics
detailed in 1.1.1 have both driven and constrained meaningful
change in the configuration of mental health services, and their
relationship with Black and minority ethnic communities. This
was inevitably the case given the myriad drivers of ethnic
differentials in experience and outcome. Coordinating a
strategy to deal with such complexity was always going to be
a challenge. However, the real dilemma for DRE has been the
need to negotiate the divergent beliefs, views, even political
priorities about the nature of its subject matter; where does the
catchall phrase Black and minority ethnic begin and end? Is
ethnic disparity an aberration arising from inadequacies within
mental health or an inevitable function of wider differentials?
To what extent can the ideal of cultural competency in
therapeutic approaches be achieved, whilst adhering to clinical
versions of ‘normality’, and the perceived need for threat-
management? Whilst the very essence of what DRE is about is
in a state of flux, somehow the strategy has had to progress
with its change agenda – akin to navigating a journey upon
shifting sand.
Despite this backdrop, DRE has been successful in generating
an array of local projects that engage communities in novel
ways. Also, within some PCTs DRE has underpinned a shift in
consciousness around responding to the mental health needs of
diverse communities. One telling discussion I had with a local
Mind service provider in Oxford revealed how DRE had
concentrated priorities of the local PCT onto responding to
Black and minority ethnic issues within mental health
provision. This was reflected in both the allocation of resources
and a general climate amongst commissioners and others. A
critical aspect of this was the willingness by the PCT to take
risks – supporting projects to engage with communities in
creative ways. Though it’s hard to quantify such effects, it’s
fair to say that the extent to which DRE has facilitated
DRE Community Engagement Study Project outcomes
section 5
improvements in understanding of and response to Black and
minority ethnic mental health issues at the juncture between
local strategy, implementation and service provision is
indicative of its overall success.
An obvious problem for DRE has been differential
interpretations of its issues, and how best to respond to them.
This has resulted in a hotchpotch approach, particularly in
relation to CDW role descriptions, and the mix of strategic and
operational engagement with the strategy across SHA regions.
However, the fundamental challenge for DRE has always
been delivering a coordinated process of change by influencing
inherently variable understandings of and responses to its core
issues. This partly explains the expression of DRE objectives
largely in terms of proxies: e.g. ‘reduced fear of services’ –
‘reduced fear’ taken as representing improvements in the
relationship between services and Black and minority ethnic
communities. What is not clear however is the extent to which
such adjustments in levels of fear are the outcomes of particular
adjustments in services and/or community engagement. There
are also difficulties in using a subjective, emotional, variable
state such as ‘fear’ as a measurement of strategic change.
That there isn’t a clearly specified path leading from objectives
to outcomes is largely a consequence of the fluidity of
understanding around DRE’s subject-matter. What this has
meant is a ‘working out’ of the strategy ‘on the fly’, thus
different manifestations of DRE in different localities. This
accounts for the ad-hoc roll-out and general lack of consistency
of engagement by its various stakeholders. Though guided by
a core framework of outcomes, their achievement has been
principally a locally determined affair. Despite the rationale
proffered for such an approach (increased relevance to local
need), it has resulted in a strategy simultaneously effective and
groundbreaking, whilst at the same time ineffectual and
hamstrung. It all depends on which ‘bit’ of DRE one observes.
So, what does all of this mean in terms of next steps? The
obvious ideal would be to attempt to preserve the successes of
DRE, whilst limiting its deficits. Clearly, a critical element
in its success has been a willingness of stakeholders within
particular localities to engage. This probably reflects a pre-
existing desire to respond to such issues, which DRE
conveniently tapped into. Fermenting such zeal across all local
stakeholders – particularly gatekeepers such as commissioners
– is an important lesson for future engagement/service
improvement strategies. This would be assisted by addressing
the other deficit of DRE, namely an overemphasis on local
determination at the expense of a centrally driven strategy.
Whist by no means suggesting that local contextualisation
isn’t essential, the consistency of DRE’s successes could
certainly have been increased by a more thorough interweaving
into the accountability systems of those responsible for its roll-
out. Referring back to my Oxford example, location of DRE
objectives into the monitoring systems of the PCT was
acknowledged to have concentrated minds, securing buy-in
from key personnel.
111

Project outcomes
Given the potential for DRE to be caught between the
differential interpretations of its various stakeholders,
fundamentally its successes and failures are a function of
prioritisation and leadership at ministerial level. Leadership
was certainly present following years of campaigning about
the inadequacies of mental health services, brought to a head
by the death of David (Rocky) Bennett, all of which led to the
creation of DRE. Though unfortunate that such leadership fell
short in maintaining the consistency and integrity throughout
its implementation, DRE has laid down a foundation both in
terms of community-based engagement projects and increased
capacity of local service developers and providers, to make
provision culturally competent. The task going forward will be
to incorporate such approaches into strategies such as New
Horizons[1], World Class Commissioning[2], professional
training and development, indeed all initiatives and strategies
that have a bearing on Black and minority ethnic mental
wellbeing. DRE was the first step. The question now is ‘where
to from here?’
New Horizons – Towards a shared vision for mental health
[1]
consultation document http://www.nmhdu.org.uk/news/
new-horizons-towards-a-shared-vision-for-mental-health/
http://www.dh.gov.uk/en/Managingyourorganisation/
[2]
Commissioning/Policyguidanceandtoolkits/DH_100305
The key role of community development
workers in delivering DRE using Values-Based
Practice and the 3 keys to a Shared Approach
in mental health assessment
Bill Fulford, Professor of Philosophy and Mental Health,
Co-director of Institute for Philosophy, Diversity and
Mental Health, ISCRI, UCLan
Malcolm King, National Mental Health Act Project Lead,
NMHDU
This commentary describes a project that aims to develop
the skills of DRE community development workers (CDWs) to
work with mental health professionals in pilot areas. Outcomes
of the pilot are concerned with the key objectives of the
DRE Dashboard (http://www.nemhdu.org.uk/silo/files/dre
dashboard.pdf) to reduce the fear of services among Black and
minority ethnic communities and disproportionate rates of
compulsory detention of young black men. The pilot also
addresses the issues raised in “New Horizons – Towards a
shared vision for mental health” consultation document [1],
which aims to target the root causes of mental illness and support
the local development of higher quality, more personalised
services. The project uses a Values-Based Practice Approach
and the 3 Keys to a Shared Approach to underpin the work. The
data collected at the end of the project will be important in
developing robust training materials and approaches for mental
health services in delivering effective service to Black and
minority ethnic communities.
DRE Community Engagement Study Project outcomes
section 5
Values-Based Practice
(Woodbridge and Fulford, 2005)
Values are at the heart of the project:
“The current situation is unacceptable and unsustainable since
it contradicts the basic value of equity that is the cornerstone of
the NHS. It is no good us pretending to have these values and
failing to recognise them, we need to change to live up to them”.
(John Reid, Secretary of State for Health, 2003 p.4).
The process of Values-Based Practice (VBP) is an ideal means
to support the aim of the community development workers to
capture and disseminate best practice in relation to DRE.
VBP facilitates:
– the inclusion of diverse perspectives
– all those involved having a voice and being heard
– building relationships based on the development of trust
and understanding
– increased sensitivity and effective problem solving by
explicitly including facts and values.
The aim of the project will be to use values-based practice
in an innovative and systematically robust way to test out
and evaluate the process of VBP within the context of DRE
based on the PDSA (plan, do, study, act) model. In addition,
to produce a DRE VBP resources pack with the intention of
making this available to a wider audience.
The Three Keys to a Shared Approach (CSIP/NIMHE,
2008) is about people who provide services in mental health
and social care working in partnership with service users and
carers to find a strong voice that will help them be understood.
The important roles that CDWs have to play in relation to
each of the Three Keys in ensuring that assessments are carried
out with people from ethnic and other minority groups in a
genuine partnership between service users and carers and
service providers. We have included a range of examples of
good practice in the use of the three keys approach.
CDWs help to:
i) improve communication and understanding (Key 1)
ii) ensure a more equal relationship between service users/
carers and providers (Key 2)
iii) support strengths-based assessment, particularly in relation
to aspirations (Key 3).
Each of the contributions of CDWs to assessment is illustrated
by the examples of positive practice given in the Three
Keys document.
112

Project outcomes
First Key: Active Participation of the Service
User and Carer
• It is well recognized that service users and carers should be
actively involved in how their problems are treated so that
they can work together in a shared process with practitioners
to develop independence and self-management skills.
• The kind of support a service user receives from services
depends critically on how they are understood. Therefore,
the Shared Approach aims to extend active service users’
involvement from how a person is treated to how their
problems are understood in the first place.
• Assessment is the gateway to care and treatment.
A successful Shared Approach in assessment will lead
to improved and more appropriate care planning.
• CDWs have a key role to play in improving mutual
understanding and communication with people from ethnic
and other minority backgrounds as an essential contribution
to active participation in assessment. Sometimes CDWs
may share a similar background with the service user or
carer concerned. Many also have particularly rich networks
of contacts within local communities and hence can help to
identify people who may act as supporters and interpreters
for the service user or carer concerned.
Example: Participation and minority groups –
Simon’s Spirals
Sharing Voices, a voluntary sector organization in Bradford,
has been particularly active in developing approaches that
allow people from minority groups to feel safe and included
as a basis for understanding their mental health needs.
They have recently begun working with young people in
schools using a multi-agency approach that involves school
nurses, inclusion managers from the schools, a CDW from
Sharing Voices and other professionals, such as educational
psychologists, learning mentors and youth workers who are
brought in when their expertise is needed.
The aim of the work is to enable young people experiencing
distress to gain support at an early stage and to facilitate access
routes into services if needed, particularly Child and Adolescent
Mental Health Services (CAMHS). Effective assessment of
young peoples’ needs and strengths is therefore critical.
Simon Hendy, a Youth Worker at Sharing Voices, has developed
an approach to assessment based on a set of circles that allows a
young person to define their own needs and what is important to
them and how they would like support around issues that
are affecting their lives.
DRE Community Engagement Study Project outcomes
section 5
Second Key: A Multidisciplinary Approach
• A multidisciplinary approach is as important in assessment
as it is in treatment. Different service providers, from both
voluntary and statutory sectors, bring different perspectives
and skills sets to the process of assessment that can help to
identify and highlight an individual’s strengths as well as
difficulties.
• CDWs have a distinctive role to play within the
multidisciplinary team in empowering service users and
carers, particularly from ethnic and other minority
backgrounds. In the consultation that led to the Three Keys
document unequal power relationships were identified as
one of the main barriers to a shared approach in assessment.
Example: An expanded model of the multidisciplinary team
– non-mental health services – voluntary sector
Sharing Voices, Bradford, as a voluntary sector organization,
work closely with local statutory services to provide a fully
joined-up approach for people from minority ethnic groups.
One of their recent projects is an innovative ‘In Reach’
partnership between Sharing Voices and Bradford’s District
Lynnfield Mount Hospital set up to support people from
Black and minority ethnic communities entering mental health
acute wards for the first time. The project, which is facilitated
by the local FIS (Focus Implementation Site for the DRE
programme), aims to meet the objectives of the DRE programme
to reduce fear and to develop services that are responsive to the
needs of Black and minority ethnic communities. The project
employs a multi-disciplinary approach with the aim of ensuring
that culture, faith, spirituality and family issues are taken into
account in assessment and care planning.
Ward staff at Lynnfield Mount Hospital refer people admitted
to the hospital for the first time to In Reach, and CDWs from
In Reach then visit the wards to engage people using skills and
processes developed from their work within the community.
Sharing Voices is also the only voluntary sector organization
in Bradford that can make referrals direct to mental
health service. This two-way process thus allows the skills
and expertise of In Reach to interact with the different
but complementary skills and expertise of the ward team. Key
features of the interaction are to build confidence and to reduce
fear through improved mutual understanding in the assessment
process and to provide links to the community and other
resources once people have been discharged.
A young student from Iraq had completed his degree and his
student visa had expired. Normally, he would have returned
home but with the political situation in Iraq at the time
deteriorating, he became completely withdrawn and depressed
and he ended up being admitted under the Mental Health Act
to Lynnfield Mount Hospital. A referral was received from the
ward staff and a CDW with the In Reach project, who was
from the same cultural group as the student, went to visit him.
113

Project outcomes
When he arrived on the ward, the staff were anxious because
the student had already attacked a nurse: ‘be careful of him’,
they warned, ‘he may attack you as he attacked one of the
nurses’. However, when the CDW was able to greet the student
with the embrace that is traditional to their culture, instead of
attacking him he immediately calmed down and started to
explain why he had been so upset when he was admitted to the
ward. The problem was, he said, that he felt that he was not
being listened to – he wanted to stay in his room and pray; and
he did not want to take medication but wanted to talk to
someone instead.
The result of this initial contact was that the ward team were
able to understand the student’s problems in a completely
different way and this led on to a care plan that built on the
resources of his own culture. The CDW arranged a visit to a
local Arab mosque where they knew the young man because
he had attended it in the past. It was agreed that the Imam
would visit him on the ward and also try to get in touch with
his parents in Iraq. This was successful and the result was that
his father travelled to the UK and supported his son. He is now
back in Iraq with his family and is doing well.
The example illustrates how joined up working between
voluntary and statutory teams can help to engage service users
from minority groups in a process of holistic assessment that
can deliver more sustainable outcomes because they are tied to
and balance the values of service users and the different
professionals involved in their care.
Third key: Strengths, Resiliencies and Aspirations
• The approach also highlights the importance of the
strengths, resiliencies and aspirations of service users
and carers, as well as identifying needs and challenges.
• There is growing recognition, particularly from the narratives
of service users and carers themselves, that individual
strengths, resiliencies and aspirations are essential to
recovery and developing self-management skills.
• CDWs have a further key role in relation to strengths-based
assessment. Through the consultation process it became
clear that CDWs and other non-professionally aligned
workers were being particularly effective in supporting
service users’ and carers’ aspirations and that this often
made a vital contribution to recovery and development
of the skills of self-management.
Agreeing to Disagree
• A shared understanding will not always mean full
agreement. It is important that different views, including
different service users’ and carers’ views, are acknowledged
and mutually respected. This is important because it
helps to support a balanced understanding as the basis
of mutual engagement in a shared process of recovery.
DRE Community Engagement Study Project outcomes
section 5
Example: Aspirations and non-professionally
aligned workers
One of the keys to bringing aspirations into the process of
assessment is to recognize that they may be quite low key and
practical – “just to be able to go for a walk in the park”, as one
service user put it. It is these practical day-to-day activities that
non-professionally aligned workers, such as CDWs and
support, time and recovery (STR) workers, are already
involved with.
Jenny Correia, an STR worker with the Crisis Intervention and
Home Treatment Team at Chase Farm Hospital in north
London, pointed out that there is no obvious place on the care
programme approach (CPA) form to include these ‘aspirations
of ordinary life’. This meant that many of the things that really
mattered to her clients, and that she could help them bring to
a full understanding of their situation, often were overlooked
by the team as a whole in the assessment process.
As a result of this observation, the team has now begun a small
trial with an amended version of their own assessment form to
build on this important aspect of the Shared Approach.
Project Objectives
Phase 1 – Awareness raising
• To train community development workers in mental health
legislation, including the Mental Health Act 1983 and the
amendments contained in the Mental Health Act 2007.
• To enable CDWs to cascade the training to their colleagues
and key stakeholders in the BME communities to aid
development of a more culturally sensitive service.
• To enable CDWs to give information and increase local
knowledge about mental health legislation.
• To identify the link with the CDW action plans for improving
knowledge and giving confidence in implementing the
changes contained in the Mental Health Act 2007.
• To raise awareness in BME communities about the Mental
Health Act 2007 and its implications for service users.
• To raise awareness of community advocacy provision of
the new act and its implications for the support they provide
to service users and their carers.
• To promote joint working between the legislation and
DRE workstreams.
• To identify champions who will carry forward the complex
works in phase two.
114

Project outcomes
Outcomes
Phase 1: Completed. Over 220 CDWs have attended 1-day
workshops from November 2008 to April 2009.
Phase 2: Implementation and Intervention
• To develop, with the “Champions”, interventions that align
the shared vision/three keys, in particular the strengths
element and community engagement (through CDWs)
approaches with the health and social care assessment
process when detention under mental health legislation is
being considered.
• To help “Champions” to identify requirements for training
and development in supporting change in practice for
organisations.
• To support organisations to initiate training for staff to
develop competencies which support the project aims.
• To establish effective dialogue with key stakeholders to
help ensure that they understand the key issues.
• To develop an evaluation tool for assessing the effectiveness
of the project.
The project is working with 18 Champions to meet the
objectives of Phase 2, to be completed by March 2010.
Phase 3: Evaluation and Dissemination
• To use the evaluation results to disseminate examples of
good practice based on the key characteristics of a culturally
sensitive service.
• To use the training materials and approaches developed in
stage 2 to roll out the training to all CDWs nationally.
• To prepare a detailed project report to disseminate the
information to all key stakeholders.
Conclusion
We believe this project will produce:
• Identified standards of practice to meet the needs of
BME communities in terms of the impact of mental health
legislation. The project will provide the Department of
Health, mainstream mental health and social care workforce
programmes and other key stakeholders with advice
regarding the key practice issues for delivering effective
services for service users from diverse communities who
are detained, or likely to be detained, under the Mental
Health Act.
• Agreed specification for the commissioning of education
and training. The project will engage with key stakeholders
to develop training materials for mental health service
providers and professionals to enable them to develop and
deliver services appropriate for BME communities using
the amendments to the Mental Health Act 1983 as a driver
for change in respect of mental health legislation.
DRE Community Engagement Study Project outcomes
section 5
• Identified standards of practice. Identified pilot sites
leading on changes in practice in working with people
from BME communities.
• Identified examples of good practice. Evidence of local
services that are able to demonstrate effective change in
practice.
• Redesign of present working practices. Introduce
methodologies to support provider organisations to address
needs of BME communities.
The continued fear of services from many BME communities
and the considerable overrepresentation of young black men
being detained under the Mental Health Act remain a major
challenge in the delivery of mental health and social care
services. There is evidence that CDWs have a key role to play
in meeting these challenges.
The New Horizons – Towards a shared vision for mental
[1]
health consultation document (http://www.nmhdu.org.uk/
news/new-horizons-towards-a-shared-vision-for-mental-
health/) includes the aims of personalised services and
equality (p.4):
Personalised services
People with mental health problems, and those at risk, will
receive personalised care packages designed to meet their
individual needs. They will be able to make decisions about
their care, treatment and goals for recovery, as well as to
monitor their own condition.
Equality
In 2020 all individuals will be treated with respect in an
inclusive society, whatever their age, background or
circumstances. Public services will recognise the importance
of environments, services and amenities that maximise
independence and opportunities for older people to participate
and contribute as equal, active citizens.
Services will be attuned to the needs and wishes of individuals
and communities and will actively promote equality.
Inequalities for black and minority ethnic groups in access to
and experience of mental health care will have disappeared.
The consultation document also describes Three Keys to a
Shared Approach as an example of an approach to assessment
that supports recovery and the development of self-
management skills (p. 63).
115

Recommendations from
community organisations
This section presents the community organisations’ detailed
recommendations, based on their findings, of what the next
steps should be to reach the DRE aims of achieving equality
and tackling discrimination in mental health services in
England. They are presented in the order in which the results
appear in this report in sections 4.1-4.6 although, as shown
throughout the report, the results, and therefore the
recommendations, are highly interrelated.
Delivering race equality [DRE] in mental health care
(Department of Health 2005a) covered 2005-2010 and the
NIMHE Community Engagement Project ran from 2005-
2008. Therefore, some of the following recommendations
were made as DRE began and may have been addressed or are
currently under consideration. Nevertheless, they indicate the
issues significant at community level, and what the community
organisations see as essential for DRE to achieve its aims.
6.1 Fear of mental health services
Section 4.1 revealed the complex nature of the fear of mental
health services and the study reports did not offer any ‘quick
fix’ recommendations. Rather, a variety of measures aiming to
work gradually towards lessening fear were suggested.
• Education
 Education to increase awareness of mental health
conditions and reduce the stigma attached to them was
recommended by many of the community organisations.
There were calls for high-profile awareness campaigns and
work with families and faith and religious groups to
achieve these aims. The majority of the study reports
stressed that educational material should be made available
in a variety of media, in the relevant locally used languages
and in written, oral and visual formats.
• Terminology
 The word ‘mental’ and its negative connotations were
commented upon by many study participants, especially
young people. Indeed, when asked what the term ‘mental
health’ meant to them, many participants responded by
listing only mental health problems. Some young people
felt that the word ‘mental’ was in itself prejudiced and
outdated. There was therefore a call for a more acceptable
designation for mental health services.
• Community-based services
Many reports identified the existence of, and need for what
they described as ‘community-based services’. While this
term did not have a universal definition, it was used to
describe services that are offered in a particular locality,
and usually staffed and run by members of a specific Black
and minority ethnic community.
DRE Community Engagement Study Recommendations from community organisations
section 6
One example was counselling services offered by Jewish
community members in a locality with a high proportion of
Jewish residents. Although the types of services referred to by
the study reports differed, they are broadly linked to talking
therapies and interventions of a non-medicinal nature (although
in some reports on the Chinese communities, ‘community-
based services’ also included treatment with Chinese herbal
medicine).
Community-based mental health services were felt to be
preferable to mainstream services, as they would have
knowledge of, and be sensitive to the culture and concerns of
local populations. It was argued that that there would be less
fear attached to using community-based services, although
there were some concerns surrounding confidentiality if
services were locally based and staffed by local people.
• Service user roles
A greater role for service users was recommended to help
tackle the issues of fear surrounding mental health services
and the stigma of mental health problems. It was stressed
that service users should have input into planning services,
advocacy services and mental health training for new and
existing professionals, and be encouraged to set up self-
help and peer support groups.
• Support groups
Some study reports recommended the establishment of
culturally sensitive support groups on issues such as stigma
and the consequences of denial of mental health problems.
This, they argued, would help to reduce the fear of mental
health problems and mental health services in their
communities.
• Partnerships
 Tackling fear issues in partnership with existing
organisations was seen as the way forward by some
community organisations. For example, partnership work
with the Alzheimer’s Society was recommended by a study
of elderly Chinese people, in order to utilise the society’s
expertise and skills to challenge ignorance and stigma
about dementia within the community. It was considered
that such joined-up work could lead to a reduction
in fear about mental health services among Chinese
communities.
116

Recommendations from
community organisations
6.2 Effective therapies and interventions
Section 4.2 showed that study participants and the community
organisations strongly criticised what was reported as an
unbalanced approach to treatment, with an over-reliance on
medication and too little choice of alternatives. The community
organisations’ recommendations on a balanced range of
effective, culturally appropriate treatments therefore
concentrated on increasing mental health service users’ access
to talking therapies, complementary therapies and, particularly,
social interaction and participation in activities. These were
perceived by mental health service users as effective additions
to their treatment and by other community members (including
ex-service users) as maintaining their mental wellbeing.
• Choice and combination of treatment
Overall, the community organisations’ recommendations
centred around mental health service users having a choice
from a range of treatment options that included talking
therapies, complementary therapies, social interaction, and
leisure, educational and occupational activities. The aim,
as one study report emphasised, was to create:
– Care packages designed to meet the unique needs of the
individual offering a range of treatments and support,
which are socially, culturally and spiritually acceptable.
Medication was very rarely positively mentioned in this
context: the recommendations concentrated on, as a study
report put it, ‘methods other than medication to help
service users feel better’.
• Community-based social interaction and activities
The most common recommendation (by around one-third
of the community organisations) concerning effective
treatment was the provision of opportunities for social
interaction and participation in activities. It was strongly
argued that these would maximise the effectiveness of
mental health service users’ prescribed treatment and
maintain the mental wellbeing of other community
members.

The community organisations variously described social
interaction and participation in activities as ‘mental health
support’, ‘peer support’ and ‘self-help’. However, the
benefits to mental health accrued regardless of the label and
whether they were acquired formally, as part of treatment, or
informally. The study reports’ recommendations stressed
that such services should be community-based, in community
centres (or, it was suggested by a few study reports, in
religious institutions), because:
– 
Many people identified the community as a potential
source of support across a range of needs, not least
social, educational and recreational opportunities as
well as care/support needs. It is well established that
positive interaction and activity leads to increased
mental wellbeing.
DRE Community Engagement Study Recommendations from community organisations
section 6
The community organisations therefore recommended that
they were funded and/or commissioned to provide one or
more of a range of such services, not only for those with
existing mental health problems but also to prevent others
developing them. These services included social
gatherings; outings; entertainment such as drama, dance
and cinema; discussion groups; self-help groups;
befriending; mentoring; drop-ins; the provision of food,
such as lunch clubs; gardening; classes, including art,
pottery, cooking, sewing, music, sport, English, literacy
and computer skills; and practical support such as helping
with access to education and employment.
Two of the study reports added that, in order to inform
future service development, such services should be
evaluated by their users and the outcomes for those with
mental health problems monitored.
• Increased access to talking therapies
Thirteen study reports recommended that opportunities for
talking therapies should be increased, invariably adding
that, to be effective, these must be culturally, spiritually
and linguistically appropriate.
One community organisation added that talking therapies
should include those based in the community (including at
GP surgeries) and another that long-term funding should be
available for counselling services for young people.
Another study stressed that this type of support particularly
needed strengthening for Black African, Black British and
Black Caribbean men who, as shown in section 4.8, were
proportionally more likely than other ethnic groups to be
sectioned under the Mental Health Act 1983 and reported
that they were treated only with medication to ‘control’
them (section 4.2.1).
• Increased access to complementary therapies
 Eight study reports, covering a range of ethnicities,
recommended that there should be increased access to
complementary or so-called ‘alternative’ therapies. Several
added that these should be incorporated into mainstream
mental health services as standard treatments and that their
effectiveness should be researched.
The complementary therapies variously requested by the
study reports were traditional Chinese medicine,
acupuncture, massage, art and music therapies,
aromatherapy, yoga, Reiki, Ayurveda, horticultural therapy
and reflexology.
117

Recommendations from
community organisations
6.3 Culturally appropriate treatment
and interventions
Sections 4.3.1-4.3.6 presented data on the studies’ findings on
mental health services’ cultural competence. These data and
the recommendations that follow add up to a strong need for
greatly increased cultural competence by mental health
services.
The provision of separate mainstream treatment services for
Black and minority ethnic people with mental health problems
was very rarely suggested as a solution to services’ lack of
cultural competence. Rather, the study participants and the
community organisations wanted existing mainstream, generic
services to heed their recommendations for increasing their
cultural competence, especially concerning a greater
involvement of community organisations and community
members in planning, commissioning and delivering services.
The following recommendations on this issue are presented in
terms of mental health services’ cultural competence: language,
faith and religion, food, gender, the ethnicity of staff and
racism. It is not intended to suggest that these categories
comprise the entire range of the elements that define cultural
competence, nor that they exist in isolation from each other
and from the issues raised elsewhere in the report.
6.3.1 Language
The severity of the problems surrounding language (discussed
in section 4.3.1) is confirmed by over three-quarters of the 79
study reports including this issue in their recommendations.
Many of these reports unequivocally stressed that language
barriers prevented service users, their carers, their families and
the general population from understanding mental illness and
from engaging with services. They agreed that this issue needs
to be urgently addressed to achieve the aims of the DRE action
plan (section 3.1.3) and thereby improve Black and minority
ethnic populations’ access to and experience of mental health
services and the outcome of treatment:
– Language needs have proven to be central to many of
the barriers [to mental health service access] found.
– 
Improving communication is central to the
recommendations of this report. There has been no
aspect of the project that has escaped communication
challenges.
The study reports’ recommendations, in order of the frequency
with which they were made are summarised below.
DRE Community Engagement Study Recommendations from community organisations
section 5
• Translated information
The most common recommendation in terms of language
(made by 48 reports) was for the translation of written
materials about:
– 
mental health problems and mental health services
(such as a directory of services and their functions) for
the general public; and
– 
information for the individual with mental health
problems (and their carer and family where appropriate)
about their condition and treatment (such as care plans).
It was stressed that such translations should be made in
simple language and be easily accessible to all those who
required them.
• Information in a variety of media
Twenty-nine reports recommended that a variety of media
should be used to transmit information, especially to those
who could not read in any language and whose culture
favoured the oral transmission of information. These
included, especially, phonelines, DVDs and workshops,
and also radio and television programmes and websites.
Information in Braille was recommended by one of the
community organisations.
• Bilingual workers
Mental health service workers who speak the preferred
language of service users were recommended by 16 reports.
This was thought especially necessary for counsellors.
• Access to interpreters
 Fourteen reports recommended that more interpreters
should be available and that access to them was made
easier and quicker than currently, including by setting up a
bank of interpreters who operate across primary care trust
boundaries. One report recommended that service users
were made aware that they were entitled to ask for an
interpreter if they needed one and two pointed out the need
for sign language. Two studies recommended that
interpreting services are not restricted to the Language
Line (a telephone service), but uses face-to-face
interpreters.
• Community workers
Eleven reports recommended that workers who spoke the
local community languages should act as the link between
mental health services and the community. These workers
were variously described as community liaison workers,
mental health guides, advocates, community champions,
bilingual ambassadors and outreach workers. Their role
was seen as signposting people with mental health problems
and their carers to services, channelling accurate and up-
to-date information about services to the community, and
supporting those dealing with mental health problems.
118

Recommendations from
community organisations
• T raining for interpreters in mental health
and cultural issues
 Ten community organisations recommended that
interpreters and translators should be trained in mental
health issues. Several added that these workers should also
be trained to understand the culture of the communities
whose languages they were interpreting. As one study
participant succinctly put it, ‘Having an interpreter does
not mean the service is culturally competent’.
• English classes
Although this was recognised as a long-term solution to
communication problems, more English classes and easier
access to them were recommended by eight study reports.
• R
 eviewing, monitoring and auditing translating and
interpreting services
Eight reports variously recommended that mental health
services review what information is available in which
languages, to identify unmet needs; monitor the language
needs of their users; conduct an audit of the languages
(including dialects) they could currently accommodate;
and carry out quality checks to ensure that the translations
and interpretations they provide are accurate.
• Increased funding
The study reports recognised that their suggestions for
improvements required funding and recommended that
this be provided where necessary, including to those
services in areas where non-English speakers are a
relatively new phenomenon. For example:
– 
Service commissioners should include resources for
interpreting services, including training and support for
interpreters, in all mental health service specifications
and budgets… Service budgets and practice should take
account of additional time to allow for interpreting;
realistically this is four times that with an English
speaker.
It was also pointed out that those with mental health problems
who found it difficult to communicate in English benefited
from attending community centres where language was not a
barrier to being understood. As one study participant put it, at
a South Asian community centre that supported mental health
service users, ‘My cultural needs were met. I felt good among
my people, I could talk in my language’. Increased funding for
these centres (and for places of worship providing help with
mental health and language issues) was therefore recommended,
so that they can increase their support to those with mental
health problems.
DRE Community Engagement Study Recommendations from community organisations
section 6
• Other recommendations
Recommendations made less frequently than those above
were:
train members of local communities as translators and
–
interpreters;
– 
address the issue of inpatients who could not
communicate with others on the ward and were therefore
isolated, by, for instance, ensuring their involvement in
all the activities provided for patients;
– create a ‘helping community’ by encouraging those who
spoke English to interpret and translate for those who
could not; and
– family members not to be used as interpreters, as their
presence can curtail meaningful discussion between the
service user and the service provider, and also raises
confidentiality issues.
6.3.2 Faith and religion
Section 4.3.2 presented the community organisations’ findings
on mental health services’ cultural competence in terms of
faith and religion. Around half of the studies recommended
that services should be more aware of the faith and religious
needs of service users.
• R
 eligious beliefs and mental health diagnosis
and treatment
There was a call for religious perspectives to be explored at
diagnosis and during treatment, rather than be seen as an
‘add-on’ and addressed by what one of the studies among
Muslins termed a ‘tokenistic gesture’.
It was recommended that there should be a wider paradigm
of understanding of an unusual or psychotic experience,
and that antipsychotic drugs should not necessarily be the
first response:
– 
Providing help that enables the person to make sense of
their experiences within a faith tradition such as Islam
(or for that matter any system of belief shared with
others) is for many the first step on the road to recovery.
• Training of mental health staff
Training of staff was a much-discussed issue. Those studies
that explored the experiences and attitudes of mental health
staff found training in religious issues to be scant, with one
commenting:
– 
Developing staff competencies that equip them with the
tools to engage people from different faith and cultural
traditions, and their spiritual needs, is a crucial
component of the training and continuing professional
development of all staff who work in mental health
services.
119

Recommendations from
community organisations
 study of Orthodox Jews presented staff training as their
A – Helping Somalis to find rooms and imams for their own
number one recommendation and called for:
– Relevant professionals to undergo ethnicity training –
including basic understanding of the faith and aspects
that affect life and leisure activities, such as standards
of morality around acceptable music, literature, images,
films, TV etc.
Some studies were quite specific in the detail of their calls
for improved training, such as:
– A workforce that recognises BME cultural and religious
perspectives and has clear pathways for induction,
supervision and progression.
– Developing training that brings into focus diversity in
the context of perception and notions of health, recovery,
gender and religious affiliation and what this means for
people living in mental distress.
– To provide training that includes dietary, religious and
cultural customs… and to ensure staff become
acquainted with religious significant dates.
• Partnership work
It was recommended by many studies that there should be
genuine two-way communication between mental health
service providers and religious and community
organisations:
– Church services and mosques should be involved in
providing spiritual support and counselling services...
The PCT should contract out the care and treatment of
the mentally ill to voluntary and charity sector
organisations who have proved they have access to the
BME community and that culturally sensitive services
be delivered from non stigmatised settings.
Study reports recognised that both service providers and
religious organisations need to increase their knowledge of
the other’s work. Across the ethnicities, a frequently
recommended key component of such partnership work
was the training of religious leaders in matters of mental
health, to raise their awareness and to encourage debate in
the community. For example:
– 
Establish and provide culturally sensitive educational
training seminars on issues of mental health and stigma
for rabbis, plus a discussion group to unpick confusion
between cultural beliefs vs religious beliefs regarding
mental health.
– Faith based organisations and faith based practitioners
ie pastors, needs to be trained and supported to
effectively deliver mental health support and guidance
to Black African and Caribbean communities.
DRE Community Engagement Study Recommendations from community organisations
section 6
communal prayer, and in the long run combine support for
training of local Somali imams with education, advice and
counselling about mental health.
• Treatment choice
Greater choice of treatment was considered to be important
in bringing about a mental health service with enhanced
cultural competence in terms of faith and religion. One of
the studies among Muslims recommended that:
– 
Offering choice to Muslim people living in [city]
includes… Hakims and Faith-based resources... far from
being a last resort people want and need Alims/mufti/
hakims, use of safe spaces and or Sheikhs to be a central
aspect of recovery pathways.
(Hakims are herbal medicine practitioners. Alims, muftis
and sheikhs are Muslim scholars. A mufti gives legal
rulings based on Islamic law (Sharia) and a sheikh is a
revered elder).
• Appropriate inpatient facilities
It was recommended that inpatient facilities should provide
resources for religious practices, including worship:
– 
Service providers should ensure there are faith based
resources within residential and other statutory service
provision. Faith based resource could include space for
prayer (including gender specific), ablution facilities,
prayer rugs, prayer beads, resource and information
library as well as audio visual materials.
– 
There is a need to adapt the environment to better
accommodate patients spiritual needs, including
provision of prayer rooms, chapels, prayer mats, and to
alert the staff to these arrangements.
It was also recommended that examples of good practice in
this respect should be widely disseminated throughout
mental health services.
6.3.3 Food
The issue of food is discussed in section 4.3.3. It was recognised
by a minority of study participants that the provision of
culturally appropriate food may not be straightforward. For
example, six focus group participants from five different ethnic
groups were aware of the difficulties in providing for a variety
of dietary needs, concluding:
– Come on, let’s not get carried away. We can’t give
everybody different food... What we should do is serve
healthy food, you know. Food that our experts, doctors,
would prescribe. Not food from all over the world.
You’re not here [hospital] to live all your life. You’re
here just to get better, so you should get healthy food.
120

Recommendations from
community organisations
That said, a study of mental health service users and carers
reported that the city centre hospital in their area was better at
producing culturally appropriate food than smaller hospitals
outside the centre. They thought that this was because the city
centre hospital served a local population that comprised people
from many different ethnic groups.
• Staff training on dietary needs
It was recognised that all mental health service staff needed
training on dietary needs. As one study report put it:
– On the one hand, clinical staff were not responsible for
dietary needs specifically but many users and carers were
saying many staff did not understand their cultural
customs around eating.
Several reports added that training should teach staff to
avoid making assumptions about diet on the basis of
ethnicity and religion. For example:
– For the younger generation, have a mix of foods, Asian
and British, because we have grown up here.
– I was given a curry… I don’t eat curries, it’s not good for
my ulcers…yet because you’re Muslim, they assume you’ll
eat curry.
• The provision of halal and vegetarian food
Many Muslim study participants complained that halal
food was not available in statutory mental health services
and when it was, it was too bland. As one study participant
put it, ‘Halal food does not mean boiled tasteless
vegetables’.
There were also complaints that some services did not
cater for vegetarians at all, or did not take measures to
separate vegetarian and non-vegetarian food (by, for
instance, frying food for vegetarians in non-vegetable fat).
• Black and minority ethnic chefs
Three study reports on the South Asian communities and
one on the Black Caribbean communities recommended
that services employed chefs (to cook or to train existing
chefs) from the same ethnic groups as service users.
• T he provision of food-based activities as an element
of other mental health services
 The study reports revealed many instances of how
community organisations and other community-based
organisations had incorporated food and cooking into their
activities, via cookery and nutrition classes, lunch clubs
and the provision of cooking facilities. It was stressed by
most of them that these activities were not only about food,
but enriched the attendees’ social lives and were therefore
beneficial for their mental wellbeing. Many study
participants, including current and ex-mental health service
users and their carers, agreed:
– I can smell the food from outside and it puts a smile on
my face. I can have Asian food.
DRE Community Engagement Study Recommendations from community organisations
section 6
–
The elderly luncheon club at the Chinese community
centres enriches their social life. They are always happy
that they can come here and chat with their friends,
playing mahjong, having a meal together or watching
Chinese TV.

It was therefore recommended that community
organisations and other community-based services (such
as those providing advice and social and cultural activities)
should be funded to provide meals, cookery classes, and
cooking and communal eating facilities.
6.3.4 Gender
In total, 23 study reports made recommendations for service
development on issues surrounding gender, which are
discussed in section 4.3.4. As almost two-thirds of the project’s
study participants were female, it is unsurprising that the
majority of the recommendations also concerned females.
• Gender-specific services
The gender-specific service most commonly recommended
was a centre for women where – including on a drop-in
basis – they could get support for mental health problems
by obtaining information on mental health and mental
health services; have the opportunity to participate in
discussion groups to share experiences; and take part in
social and other activities such as cookery, exercise and
excursions. The study reports reasoned that this service
would help to address the factors that negatively affect
women’s mental wellbeing, especially isolation, and meet
study participants’ requests for female-only services and
the chance to talk to other women.

For the same reasons, several of the study reports also
recommended such a centre for males, also with a range of
activities such as discussion and support groups, sport and
excursions.

Four study reports recommended that mental health
outreach workers should target those females who were
housebound because of mental illness or because there
were restrictions on them leaving their homes.

Female- and male-only spaces within mental health
services were recommended by several study reports,
particularly those concerned with Muslims and Orthodox
Jews, whose religions ordered separation of genders.
121

Recommendations from
community organisations
• Gender-specific workers
Eight study reports – again, particularly those concerned with
Muslims and Orthodox Jews – recommended that mental
health service users should be treated by a professional
(including GPs) of the same gender as themselves, or at least
be given a choice. In addition, one community organisation
stressed that this option should be widely promoted, as the
fear or experience of being treated by someone of the opposite
gender was a barrier to help-seeking.
One study reported recommended an audit of the gender of
current mental health service professionals, in order to
identify where the gender balance between patients and
professionals needed correcting.
• Improve women’s knowledge of mental health services
It was shown in section 4.3.4 that the stigma not only of
having a mental health problem but also of not coping with
their role in the family were barriers to some women’s
access to mental health services. In order to begin to
address this and to ensure that Black and minority ethnic
women are, as one of the study reports put it, ‘clear and
confident about services’, five community organisations
recommended that action was taken to give them
information about mental health services.
It was variously recommended that this information should
include the range of treatment options available, that
women could talk to their GP about mental health issues,
and that the confidentiality of mental health services was
assured. A wide variety of venues for transmitting the
information were suggested, including in public toilets, at
a women’s day event and at social venues attended by
women.
• Provision of childcare at mental health services
 Several study reports recommended that mental health
services provided childcare facilities for female patients
with small children, so that they could attend appointments
more easily.
• Creation of new posts
Six study reports recommended that new posts should be
created to address the mental health service needs of local
Black and minority ethnic women:
– A ‘women’s issues’ post on a local primary care trust’s
community development team.
– Counsellors who are especially trained to understand and
deal with the cultural issues affecting their female South
Asian clients.
– Counsellors and outreach workers working from a local
women’s centre to deliver mental health services to
females.
– A female community development worker (CDW) in an
area where the PCT had appointed only male CDWs.
DRE Community Engagement Study Recommendations from community organisations
section 6
The study report complained that this was despite
consultation with them where they had presented
evidence from their study to show lack of women-only
services was a barrier to some women accessing
services. The study report commented that ‘male CDWs
compromise service equality for a significant proportion
of Black and minority ethnic women’.
– A CDW to address the mental health service needs of
asylum-seeking women and their children.
– An outreach worker to target Irish women with mental
health service needs.
One study report recommended that there should be female
and male ambassadors, to ‘bridge the gap between mental
health services and South Asian elders’.
Three reports recommended that alimas and alims (female
and male Muslim scholars) should be employed to work
with mental health services, ‘to contextualise key Islamic
principles and offer guidance and advice on mental health’
to Muslims. The rationale for this was that these scholars
were trusted and that alimas were especially needed for
those Muslim women who felt they could talk about their
mental health problems only to another woman.
Another study report also stressed the benefits of the
involvement of religious workers in mental health issues. It
recommended that those in churches attended by Irish
women should be educated in mental health issues and
services, so that they can influence the way Irish women
deal with mental health problems and offer support.
• Training for mental health service professionals
Several study reports recommended mental health services
train staff on a variety of issues surrounding gender:
– Three studies focused on domestic violence and stressed
that this was a ‘core mental health issue’. They
recommended that healthcare staff should be trained in
recognising the needs of women who were experiencing
domestic violence, including that they may present with
other symptoms but not reveal this to their GPs. They
stressed that treatment should not therefore consist only
of medication.
– Mental health service staff should be trained in how to
access those women who are vulnerable to mental
illness, so that can be referred to services as early as
possible.
– Mental health service staff should be trained to consider
the effect of the asylum-seeking process on mental
health.
122

Recommendations from
community organisations
• C
 ommunity member and service user involvement
in services
Several of the study reports stressed that the involvement
of Black and minority ethnic community members and
service users in planning, commissioning and delivering
mental health services would enhance these services’
cultural competence in terms of gender requirements.
• Further research
 The issues raised in section 4.3.4 generated
recommendations for further research on:
– the mental health needs of young Black Caribbean males
who are vulnerable to suicide, so that early interventions
can be offered;
– 
women with mental health problems who also
experience domestic violence and other abuse;
– 
the effect of mothers’ poor mental health on their
children and families, because, as one study report put
it, ‘A happy mum means happy children – children tend
to be more confident if they have a strong and confident
mum because children feed off the vibes a mum gives, so
if mum is suffering a mental illness, then the family is
suffering too’; and
– a longitudinal study of women’s experiences in mental
health services, to demonstrate pathways to recovery.
6.3.5 Ethnicity of mental health service staff
Issues surrounding the ethnicity of mental health service staff
were discussed in section 4.3.5 and 42 of the 79 study reports
made the following recommendations concerning this matter.
• Increase the numbers of Black and minority ethnic staff
Almost all the study reports that discussed the issue of the
ethnicity of mental health service staff recommended
increasing the number of Black and minority ethnic staff
via appropriate training opportunities and proactive
recruitment. Ultimately, it was argued, services (including
information services) would then better reflect the
populations they serve and meet their cultural, religious
and linguistic needs.
• Involvement in staff training
Several study reports recommended that members of Black
and minority ethnic communities, including mental health
service users, should be closely involved in planning and
delivering cultural competency training for mental health
service staff.
DRE Community Engagement Study Recommendations from community organisations
section 6
• Increase volunteering among Black and minority
ethnic populations
Several study reports recommended a volunteer programme
for members of Black and minority ethnic populations,
which would facilitate them obtaining employment and
following careers in mental health services.
• Organisational representation
A study among Orthodox Jews recommended that there
was a member of this community on the local Patient
Advice and Liaison Service (PALS):
– Such an appointment would go a long way towards
dispelling misunderstandings and difficulties that often
emerge during the rather torturous and stressful mental
health assessment and hospitalisation process and help
create a climate of engagement between the Mental
Health Trusts and the Orthodox Jewish community.

Other recommendations concerning organisational
representation by Black and minority people included
membership of relevant local NHS and primary care trust
forums, and of panels concerned with detention under the
Mental Health Act 1983.
• B
 lack and minority ethnic advocates,
ambassadors and champions
 Each of the following were recommended by several
studies:
– 
more Black and minority ethnic advocates to assist
access to mental health services, particularly (but not
exclusively) by asylum seekers, refugees and migrant
workers;
– more Black and minority ethnic ambassadors to act as
bridges between service users and providers; and
– 
more community champions to increase Black and
minority ethnic communities’ knowledge of mental
health and the related services.
6.3.6 Racism in mental health services
Section 4.3.6 discussed perceptions and experiences of racism
in mental health services. All the community organisations’
recommendations in section 6 address aspects of this issue.
123

Recommendations from
community organisations
6.4 The journey towards recovery
The recommendations from the eight studies that discussed
recovery (section 4.4) echo those in other study reports in
terms of increased service user involvement in planning,
commissioning and providing mental health services (section
6.6) and improvements to services’ cultural competence
(section 6.3).
• Addressing the social exclusion of service users
The study reports recommended that those with mental
illnesses should be given opportunities to contribute to,
and participate in society, including by involvement in
mental health service user groups. This involvement should
include volunteer schemes that give service users some
responsibilities (where appropriate) in the services they
attend. Links between training organisations, educational
institutions and mental health services should be
established, to help create relevant pathways for service
users to get their lives ‘back on track’ and facilitate
recovery.
It was considered that empowering service users in this
way would give them some sense of ownership of their
own recovery process, an important step to enhance
recovery.
• Faith and religion
It was recommended that stronger links be forged between
mental health services and faith- and religion-based
organisations, in order to develop services’ understanding
and address service users’ faith and religious needs.
• Increased community understanding of mental health
Increasing the awareness of mental health in the community
and working towards a reduction in stigma was
recommended, to enable service users to reach a point
where they considered themselves to be recovered.
Improvements to information on mental health were also
called for, to ensure that it is culturally appropriate in terms
of, for example, language, faith and religion.
• Peer support
 The study reports stressed that mental health services
should be aware of the value of peer support in terms of
recovery. It was therefore recommended that services
should link into programmes representing good practice in
terms of peer support to service users, such as self-help
groups, mentoring and befriending.
DRE Community Engagement Study Recommendations from community organisations
section 6
6.5 Service user and carer satisfaction with
mental health services
Section 4.5 revealed the complexities of the factors resulting in
satisfaction and dissatisfaction with mental health services and how
these relate to issues discussed throughout this report. Indeed, all the
community organisations’ recommendations in section 6 would, if
implemented, increase satisfaction with services.
6.6 A more active role for Black and
minority ethnic communities and service
users
The majority of the studies recommended vastly increased Black and
minority ethnic community members’ and service users’
involvement in the planning, commissioning and delivery of
mental health services, to their own and others’ benefit. The
studies argued that the result would reduce these communities’
fear of mental health services; provide them with a more
balanced range of culturally appropriate, effective therapies;
increase mental health services’ cultural competence; increase
the proportion of Black and minority ethnic service users
reaching self-reported states of recovery; and increase their
satisfaction with services.
The recommendations to achieve a more active role for Black
and minority ethnic communities and Black and minority
ethnic service users in the training of professionals,
development of mental health policy, and planning and
provision of services are detailed throughout section 6. They
can be summarised as:
– training and proactive recruitment of Black and minority
ethnic people so that they are represented at all staffing
levels within mental health services;
– community-based services, staffed and run by members
of the target community;
– service user input into planning services;
– service user input into advocacy services;
– increased input by Black and minority ethnic community
members (including mental health service users) into
cultural competency training for all mental health
service staff, including all those who treat service users
and come into contact with them (such as receptionists)
and for chefs and interpreters;
– 
support to Black and minority ethnic community
organisations and members (including mental health
service users) to provide information to members of
their communities about mental health and mental
health services, in order to address the stigma of mental
illness and encourage help-seeking;
124
 section 6
Recommendations from
community organisations

– encouragement to set up self-help and peer support groups

for service users and other community members who want
to maintain their mental wellbeing;
– 
funding for community organisations to provide
opportunities for social interaction and a range of
leisure, educational and occupational activities;
– partnerships between mental health service providers
and religious and community organisations to increase
all parties’ knowledge and awareness of faith and
religious mental health service needs;
– recruitment of Black and minority ethnic chefs to work
in mental health services providing food;
– recruitment from the local community of bilingual workers,
interpreters, community workers, outreach workers,
ambassadors, advocates and champions to act as links
between mental health services and the community;
– 
opportunities for service users to volunteer at the
services they attend; and
– services to encourage peer support to service users via
mentoring and befriending.

DRE Community Engagement Study Recommendations from community organisations 125


References
Adamson J. (2001)
Awareness and understanding of dementia in African/
Caribbean and south Asian families.
Health Soc Care Community, 9, 391-396.
Age Concern/Help the Aged Housing Trust (1984)
Housing for ethnic elders.
London, Age Concern.
Audit Commission (2000)
Forget me not: mental health services for older people.
London, Audit Commission.
Audit Commission (2002)
Forget me not.
London, Audit Commission.
Baker, B. Crompton, N. Anitha, S. (2006)
An evaluation of the Community Engagement Programme
for the Centre for Ethnicity and Health. Preston, Centre for
Ethnicity and Health, University of Central Lancashire.
Balarajan, R. Yuen, P. Raleigh, V.S. (1989).
Ethnic differences in general practice consultation rates.
British Medical Journal, 299, 958-960.
Barker, J. (1984)
Research perspectives on ageing:
Black and Asian old people in Britain. (1st edn).
London, Age Concern Research Unit.
Bashford, J. Buffin, J. Patel, K. (2003)
The Department of Health’s Black and minority ethnic
drug misuse needs assessment project.
Report 2: the findings. Preston, Centre for Ethnicity and
Health, University of Central Lancashire.
Bhalia, A. Blakemore, K.(1981)
Elders of the minority ethnic groups.
Birmingham, AFFOR (All Faiths For One Race).
Bhatnagar, K.S. Frank, J. (1997)
Psychiatric disorders in elderly from the Indian
subcontinent living in Bradford.
International Journal of Geriatric Psychiatry, 12, 907-912.
Bhui, K. Warfa, N. Edonya, P. McKenzie, K. Bhugra, D.
(2007) Cultural competence in mental health care: a review
of model evaluations. BMC Health Services Research, 7(1).
Blakemore, K. Boneham, M. (1994)
Age, race, and ethnicity: a comparative approach.
Buckingham, Open University Press.
Bowes A, Wilkinson H (2003)
‘We didn’t know it would get so bad’: South Asian
experiences of dementia and service response.
Health and Social Care in the Community, 11, 387-396.
DRE Community Engagement Study References
section 7
Burvill, P. (1995)
Suicide in the multiethnic population of Australia.
1979-1990. International Psychogeriatrics, 7, 319-333.
Care Services Improvement Partnership (CSIP) /National
Institute for Mental Health in England (NIMHE) (2008)
3 keys to a Shared Approach in mental health assessment.
London, CSIP/NIMHE.
http://www.3keys.org.uk/downloads/3keys.pdf
Accessed 23 August 2009.
Department of Health (1999)
National Service Framework for Mental Health:
modern standards and service models.
National Service Frameworks. London, Department of Health.
Department of Health (2001)
National Service Framework for Older people.
National Service Frameworks.
London, Department of Health.
Department of Health (2005a)
Delivering race equality in mental health care: an action
plan for reform inside and outside services and the
Government’s response to the independent inquiry into
the death of David Bennett.
London, Department of Health.
Department of Health (2005b)
Everybody’s business. Integrated mental health services
for older adults: a service development guide.
London, Department of Health.
Department of Health (2007)
Capabilities for inclusive practice.
London, Department of Health.
Department of Health (2009)
Living well with dementia: A national dementia strategy.
http://www.dh.gov.uk/en/Publicationsandstatistics/
Publications/PublicationsPolicyAndGuidance/DH_094058
Accessed 14 July 2009.
Donaldson, L.J. (1986)
Health and social status of elderly Asians.
A community survey.
British Medical Journal, 293, 1079-1082.
Fernes, P. (2003)
Letting through light: Ealing service user’s Audit.
http://www.nimhe.csip.org.uk/silo/files/
lettingthroughlightpdf.pdf Accessed 2 June 2009.
Fountain, J. Khurana, J. Underwood, S. (2004)
Barriers to drug service access by minority ethnic
populations in the European Union and how they
can begin to be dismantled.
In Decorte, T. Korf, D.J. (eds.) European studies on drugs
and drug policy. Brussels, VUB Press.
126

References
Fountain, J. Patel, K. Buffin, J. (2007)
Community engagement: The Centre for Ethnicity and Health
model. in Domenig, D. Fountain, J. Schatz, E. Bröring, G. (eds.)
Overcoming barriers: migration, marginalisation and access
to health and social services.
Amsterdam, Foundation Regenboog AMOC, pp. 50-63.
George, J. Young, J. (1991)
The Physician.
In Multicultural Health Care and Rehabilitation of Older
People. (ed. A.J. Squires). London, Edward Arnold.
Gillam, S. Jarman, B. White, P. et al. (1989)
Ethnic differences in consultation rates in urban general practice.
British Medical Journal, 299, 953-958.
Goldberg, D. Huxley, P. (1991)
Common mental disorders: a biosocial model.
London & New York, Tavistock & Routledge.
Hofman, A. Rocca, W.A. Brayne, C. et al. (1991)
The prevalence of dementia in Europe: a collaborative
study of 1980-1990 findings.
International Journal of Epidemiology, 20, 736-748.
Hopkins, A. Bahl, V. (1993)
Access to care for people from Black and ethnic minorities.
Royal College of Physicians, London.
Jagger, C .(1998)
Asian elders. An under studied and growing population.
Old Age Psychiatrist, March (10), 8.
Jorm, A.F. Korten, A.E. Henderson, A.S. (1987)
The prevalence of dementia: a quantitative integration
of the literature.
Acta Scandinavica Psychiatrica, 76, 465-479.
Kings College London and London School of Economics (2007)
Dementia UK. The full report.
http://www.alzheimers.org.uk/downloads/Dementia_UK_
Full_Report.pdf Accessed 1 August 2009.
Lawrence, V. Banerjee, S. Bhugra, D. Sangha, K. Turner, S.
Murray, J. (2006) Coping with depression in later life:
a qualitative study of help-seeking in three ethnic groups.
Psychological Medicine, 36, 1375-1383.
Lindesay, J. Jagger, C. Hibbert, M.J. et al. (1997b)
Knowledge, uptake and availability of health and
social services among Asian Gujarati and white elders.
Ethnicity & Health, 2, 59-69.
Lindesay, J. Jagger, C. Mlynik-Szmid, et al. (1997a)
The mini-mental state examination (MMSE) in an elderly
immigrant Gujarati population in the United Kingdom.
International Journal of Geriatric Psychiatry, 12, 1155-1167.
DRE Community Engagement Study References
section 7
Livingston, G. Leavey, G. Kitchen, G. et al. (2001).
Mental health of migrant elders – the Islington study.
British Journal of Psychiatry, 179, 361-366.
Livingston, G. Leavey, G. Kitchen, G. et al. (2002).
Accessibility of health and social services to immigrant
elders: the Islington study.
British Journal of Psychiatry, 180, 369-374.
Manthorpe, J. Hettiaratchy, P. (1993)
Ethnic minority elders in Britain.
International Review of Psychiatry, 5, 173-180.
Marwaha, S. Livingston, G. (2002)
Stigma, racism or choice. Why do depressed ethnic
elders avoid psychiatrists.
Journal of affective Disorders, 72, 257-265.
McCallum, J.A. (1990)
The forgotten people: carers in three minority communities
in Southwark.
London, Kings Fund Centre.
McCracken, C.F.M. Boneham, M.A. Copeland, J.R.M.
et al. (1997) Prevalence of dementia and depression
among elderly people in black and ethnic groups.
British Journal of Psychiatry, 171, 269-273.
National Institute of Clinical Excellence (NICE) (2006)
Dementia. NICE guidelines. London, NICE.
National Institute of Clinical Excellence (NICE) (2007)
Donepezil, galantamine, rivastigmine and memantine for
the treatment of Alzheimer’s disease. NICE technological
appraisal guidance 2 (amended). London, NICE.
National Institute of Mental Health England (NIMHE) (2003)
Inside outside – improving mental health services for Black
and minority ethnic communities in England.
London, NIMHE.
ODPM (Office of the Deputy Prime Minister) (2004)
Mental Health and Social Exclusion Social Exclusion Unit
Report. London, Social Exclusion Unit, ODPM.
Purandare, N. Luthra, V. Swarbrick, C. Burns, A. (2007)
Knowledge of dementia among South Asian (Indian)
older people in Manchester, UK.
International Journal of Geriatric Psychiatry, 22, 777-781.
Rait, G. Burns, A. (1997)
Appreciating background and culture: the south Asian
elderly and Mental Health.
International Journal of Geriatric Psychiatry, 12, 973-977.
Richards, M. Brayne, C. (1996)
Cross-cultural research into cognitive impairment
and dementia: some practical experiences.
International Journal of Geriatric Psychiatry, 11, 383-387.
127

References
Richards M, Brayne C, Dening T, et al (2000)
Cognitive function in UK community dwelling African
Caribbean and white elders: a pilot study.
International Journal of Geriatric Psychiatry, 15, 621-630.
Richards, M. Abas, M. Carter, J. Osagie, A. Levy, R. Brayne,
C. Forde, C. (1998) Social support and activities of daily
living in older Afro-Caribbean and white UK residents.
Age & Ageing, 27, 252-253.
Reid, J. (2003) in
Delivering Race Equality: A framework for action.
Mental health services. Consultation Document. p.4.
London, Department of Health.
Rose, D. (2001)
Users’ Voices. The perspectives of mental health service
users on community and hospital care.
London, The Sainsbury Centre for Mental Health.
Shah, A.K. (1992)
The burden of psychiatric disorders in primary care.
International Review of Psychiatry, 4, 243-250.
Shah, A.K. (1997a)
Interviewing mentally ill ethnic minority elders with interpreters.
Australian Journal on Ageing, 16, 220-221.
Shah, A.K. (1997b)
Straight talk. Overcoming language barriers in diagnosis.
Geriatric Medicine, 27, 45-46.
Shah, A.K. (1999)
Difficulties experienced by a Gujarati psychiatrist
in interviewing elderly Gujaratis in Gujarati.
International Journal of Geriatric Psychiatry, 14: 1072-1074.
Shah, A.K. (2007) Demographic changes among ethnic
minority elders in England and Wales. Implications for
development and delivery of old age psychiatry services.
International Journal of Migration, Health and Social Care,
2007, 3: 22-32.
Shah, A.K. (2008) Estimating the absolute number of cases of
dementia and depression in the black and minority ethnic
elderly population in the UK. International Journal of
Migration, Health and Social Care. 4, 4-15.
Shah, A.K. Dighe-Deo, D. (1998) Elderly Gujaratis and
psychogeriatrics in a London psychogeriatric service. Bulletin
of the International Psychogeriatric Association, 14, 12-13.
Shah, A.K. Lindesay, J. Nnatu, I. (2005b)
Cross-cultural issues in the assessment of cognitive impairment.
In Dementia (Eds. A. Burns, J. O’Brien, D. Ames). London,
Hodder Arnold 147-164.
DRE Community Engagement Study References
section 7
Shah, A.K. Oommen, G. Wuntakal, B. (2005a)
Cultural aspects of dementia.
Psychiatry, 4, 103-106.
Sweeney, A. Beresford, P. Faulkner, A. Nettle,
M. Rose, D. (eds.) (2008) This is survivor research.
Ross-on-Wye, PCCS Books.
Tamkin, J. Ashton, J. Cummings, J. Hokker, H. Pollard, E.
Rick, J. Sheppard, E. Tackey ND (2002)
A review of training in racism awareness and valuing cultural
diversity. RDS on-line report 09/02. London, Home Office.
http://www.homeoffice.gov.uk/rds/pdfs2/rdsolr0902.pdf
Accessed 23 May 2009.
Thomas, P. Thornton, T. Shah, A.K. Language, games and
interpretation in psychiatric diagnosis: A Wittgensteinian
thought experiment. Journal of Medical Humanities. In Press.
Thornton, T. Shah, A.K., Thomas, P. Understanding,
testimony and interpretation in psychiatric diagnosis.
Medicine, Healthcare and Philosophy. In Press.
Winters, M. Patel, K. (2003)
The Department of Health’s Black and minority ethnic
drug misuse needs assessment project.
Report 1: the process. Preston, Centre for Ethnicity and
Health, University of Central Lancashire.
Winterton, R (2004) at the launch of Mental health and social
exclusion (ODPM, 2004), widely quoted including at
http://www.bps.org.uk/downloadfile.cfm?file_uuid=1EDE
025D-1143-DFD0-7E5D-19F57B537B63&ext=pdf and
www.socialinclusion.org.uk/publications/DavidMorrisRE.ppt
Accessed 03 September 2009.
Woodbridge, K. Fulford, B. (2005)
Whose Values? A workbook for values-based practice
in mental health care.
London, Sainsbury Centre for Mental Health.
128
 Appendix 1
Participating community organisations
in each strategic health authority area

SHA area Studies Participating community organisations

East of England 5 Bedford African and Caribbean Forum

Bedfordshire African Community Centre (BAAC)
Centre for African Families Positive Health (CAFPH)
Dignity Mental Health Service
Guideposts Trust and Watford Asian Community Care
East Midlands 8 African Caribbean Citizens Forum
AWAAZ, Asian Mental Health Research Unit
Derby Millennium Network (DMN)
Derbyshire Gypsy Liaison Group (DGLG)
Karma Nirvana
Northampton Irish Support Group
Northampton Somali Community Association (NSCA)
Youth Voice
London 17 Chinese Mental Health Association (CMHA) (2 studies)
Chinese National Healthy Living Centre
Derman for the Well-being of the Turkish and Kurdish Communities
Healing Waters
Hopscotch Asian Women’s Centre (HAWC)
Lewisham Day Centre for Refugees and Asylum Seekers
Mind in Harrow
Mind in Tower Hamlets (MITH)
The Qalb Mental Health Centre
RUN-UP
Social Action for Health and Mellow
Southside and Fanon
SubCo Trust
Talking Matters Wellbeing Centre
Turkish Women’s Support Group
UK Coalition of people living with HIV and AIDS (UKC)
North East 2 Faith Community Project (FACOP)
Tees Valley Voices for Justice
North West 12 Asylum Link Merseyside (ALM), Merseyside Chinese Community
Development Association (MCCDA) and Irish Community Care
Merseyside (ICCM)
Bolton Association and Network of Drop Ins (BAND) (2 studies)
Big Life Services
Binoh of Manchester
BME Mental Health Community Development Team, Oldham Primary
Care Trust
Blackburn with Darwen Community Links
Health, Advocacy and Resource Project (HARP)
Nguzo Saba

DRE Community Engagement Study Appendix 1 129

 Appendix 1
Participating community organisations
in each strategic health authority area

SHA area Studies Participating community organisations

North West cont Partners of Prisoners (POPS) and Families Support Group
Saheli Asian Women’s Project
Wai Yin Chinese Women’s Centre
South Central 6 Bangladeshi Welfare Association and Culture Works
The Forest Bus Mobile Project
Maytree Nursery and Infant School parent support staff
North Hampshire Caribbean and African Network
Portsmouth Race Equality Network Organisation (PRENO)
The Wiltshire Trust
South East Coast 3 Brunswick Community Development Project (BCDP)
Rethink Sahayak Services
Shifa
South West 8 Amana Educational Trust and Transparency Research Partners
Devon and Cornwall Refugee Support Council (DCRSC) and Plymouth
Teaching Primary Care Trust (2 studies)
Dorset Mind
Hikmat BME Elders Centre
Penwith Community Development Trust
Rethink West Dorset Services
Somerset Racial Equality Council
West Midlands 11 African Caribbean Community Initiative (ACCI) and Nyela
Age Concern
Aston Christian Centre
Black Country Holistic Approach
BME Housing Consortium/RAMA (Asian men’s support group)
Éirim Mná, Midland Heart/Focus Futures, Birmingham Future Health
and Social Care Association
Irish Welfare and Information Centre
My Time New Communities Team
Rethink Birmingham
Smethwick Bangladeshi Youth Forum
Yorkshire and 7 Barnsley Black and Ethnic Minority Initiative (BBEMI) (2 studies)
the Humber
Khidmat Centres
Rotherham Yemeni Community Association
Sahara Spotlight Group, Sahara Women’s Group
Sharing Voices
YWCA Doncaster Women’s Centre

DRE Community Engagement Study Appendix 1 130


Extract from the information pack
sent to community organisations
The NIMHE Community Engagement Project
Community organisations participating in the programme
will be required to undertake a piece of research to highlight
the mental health service needs of their own community and it
is important that this piece of work should take place within
the context of DRE. However, in undertaking the work and
preparing a report it is crucial that the work is carried out in
line with the ethos of community engagement, thus ensuring
that the capacity-building elements of the programme are met.
The process by which the work is done (i.e. engaging people
from communities that ordinarily do not have a voice) is as
important as the final product (the report) that is produced.
At the end of the project, and in addition to the final report,
we would like to see the following outcomes achieved:
– A number of people who ordinarily would not have
been able to have a voice around their needs will have
been involved in the project as workers and volunteers
and will have had the opportunity to undertake the
training that is provided as part of the programme.
– New partnerships will have been made between the
community organisations taking part in the programme
and local strategic bodies such as representatives of
local focused implementation site teams, primary care
trusts, etc.
– 
New and innovative ideas about how to go about
delivering some of the outcomes envisaged in DRE
will have been articulated and discussed.
There are a number of key criteria that we will require of all
selected projects:
1. That your project retains a tight focus around research and
the issues relating to mental health among Black and
minority ethnic communities. You will not be funded to
set up a new service.
2. 
That you recruit between three and six local people
from the target community to undertake the work. These
people should be paid wherever possible (e.g. except where
payment may affect a participants’ entitlement to receive
state benefits and would leave them financially worse off).
The budget for your project should reflect this.
3. You must not allocate more than 25% of the total funding that
we give you to central costs and overheads (including
management and administration, rent, heat, capital equipment,
etc). Total funding will not exceed £20,000.
4. The community members you recruit to do the work should
be aged 17 or over.
DRE Community Engagement Study Appendix 2
Appendix 2
5. You must at all times conduct your work in line with good
practice and research ethics. This will be covered during
the workshops and training (see 6, below). This will mean
having due regard for the safety and wellbeing of all who
are involved in the project, whether as researchers or
respondents, and ensuring that no-one is put at risk of
harm. The university may require you to amend or stop
your work programme if it is felt that you are proposing to
do something that is unethical or that carries an unacceptable
level of risk.
6. It is a requirement of the programme that those people
who are recruited to do the work are able to attend the
workshops and training that are provided by University of
Central Lancashire (UCLan) to ensure that the work is
carried out to a satisfactory standard. This means that they
will be required to commit to attending 6 one-day
workshops over the lifetime of this project. Those who
attend the training will be able to enrol for a university
qualification if they wish.
7. A community engagement project support worker from the
Centre for Ethnicity and Health will visit you on a
fortnightly basis. Your project support worker will be
confirmed prior to you commencing the project and their
contact details provided.
8. It is the support worker’s role to assist and support you
to deliver this project by offering advice and guidance
about research methods; the target group for your research;
data analysis; report writing; budgetary allocation; pulling
together a steering group for the project; and maintaining
links with your local stakeholders. They will also provide
academic advice to any members of your project team who
enrol for the university qualification.
During the first two or three meetings with their support
worker, the project team will be required to draft up a plan
for the project. This must detail what you intend to do;
how you intend to do it; who you will get to do the work;
what work you will do; where you will undertake the work;
who you will undertake the work with; how those working
on the project will be supervised; how you will ensure that
participants in the project have given consent; how you
will ensure participants’ confidentiality; how you will store
and handle any data collected as part of the project; and
how you will identify and manage any risks. Support
workers are required to submit these plans to an internal
ethics committee at the university. As stated in 5, above,
the university reserves the right, after consulting the
NIMHE programme director, to require you to stop or
amend any work plan if it feels that what you are doing or
are proposing to do is unethical.
131
 Appendix 2
Extract from the information pack
sent to community organisations

9. Project support workers are part of a dedicated team of

community engagement staff within the Centre for
Ethnicity and Health. They are managed within a regional
structure. Each regional team is managed by a senior
support worker. Senior support workers are directly
accountable to the Operational Manager at the Centre
for Ethnicity and Health. Support Workers work across a
range of community engagement programmes that are
housed within the university.

10. You are required to establish a local steering group for

this project. This should include representation from your
local focused implementation site, primary care trust and
other key local stakeholders who may be able to assist in
steering the direction of the research so that it fits with
local priorities, and with picking up the findings and
recommendations of the work so that the opportunities for
sustainability are maximised.

11. 
Steering groups need to develop the mechanism for
harnessing the skills and energies of your research team
members as they are developed, such as how they could be
helped to take the next step. Community organisations and
statutory services may wish to engage Learning and Skills
Councils to find ways in which they can sustain the skills
and knowledge acquired by your research team members
during the process of working on the project.

12. 
Projects need to clearly specify their management
arrangements.

13. The total sum allocated to your project will be divided and
paid in three instalments. The second and third payments
will be made to you upon receipt of a completed financial
monitoring form showing expenditure to date together
with a project report indicating key project activities.

14. The lifetime of your project is 12 months. A draft final

report should be submitted to UCLan (one hard copy and
one electronic copy in Word) within 9 months of
commencing the work. We will review your report, and
may require amendments or further work to be carried out
during the remaining 3 months, prior to you disseminating
or launching the results more widely.

DRE Community Engagement Study Appendix 2 132


Criteria for shortlisting community
organisations’ applications
1 The organisation
a As far as you can tell, is this a bona fide organisation?
Have they the supplied information we asked for (e.g.
copy of constitution, list of responsible officers, equal
opportunities policy, accounts etc)? Do you get a sense
that they can deliver this project?
b Is the organisation working within a focused implementation
site (FIS) area?
2 Community links
Has the organisation demonstrated sufficiently strong links
with the community that it would like to work with? (Consider
track record, what it does, how it works, the understanding it
seems to have of its community, how it has developed links,
organisational history.)
3 Support and sustainability
a Is the project supported by a FIS?
If yes – which one?
b Is the project likely to be able to establish a sufficiently
robust and effective steering group? Has it demonstrated
that it can establish a dialogue with commissioners?
c [asked in third phase only] Does it relate to one of the
priority areas (older people, children, Irish communities,
Eastern European communities, men)?
If so which?
DRE Community Engagement Study Appendix 3
Appendix 3
4 Proposal
a Does the proposal fit with the Delivering Race Equality
action plan? How strongly? Which of the 12 characteristics
does it fit with?
b Research focus – does the focus of the research make sense
to you in the context of DRE?
c Does the way that the organisation proposes to undertake
the work make sense? Are the methods logical?
d Is the project likely to be deliverable or is it likely to run
into serious problems or barriers?
e 
Is the project making appropriate use of the target
communities as community researchers/volunteers? Are
there adequate processes in place to support them?
5 Budget
Does budget meet the criteria of the project? Do items clearly
relate to the project? Do the resources appear to be apportioned
sensibly across the budget? Have significant costs been missed
or unnecessary items included? Is the budget within the
£20,000 maximum?
While we would generally expect that you will shortlist the
proposals that score more highly, this may not always be the
case. For example, a project may have scored highly overall,
but zero in one or more sections that you think are critical (e.g.
it is not supported by a FIS or the organisation’s community
links are very weak). In these circumstances, you might not
want to shortlist it despite it having a high overall score. If you
shortlist such a project, please list below any particular issues
you want to discuss further at the interview before making a
final decision.
133

Contact details of the community
organisations that participated in this project
Community organisation
African Caribbean Citizens Forum,
Leicester
African Caribbean Community
Initiative (ACCI)/Nyela,
Wolverhampton
Age Concern,
Herefordshire and Worcestershire
Amana Educational Trust
and Transparency Research
Partners, Bristol
Aston Christian Centre, Birmingham
Asylum Link Merseyside (ALM),
Merseyside Chinese Community
Development Association (MCCDA)
and Irish Community Care
Merseyside (ICCM)
AWAAZ – Asian Mental Health
Research Unit, Nottingham
DRE Community Engagement Study Appendix 4
Appendix 4
Contact details Study report title
Deborah Sangster How best to encourage African
Melbourne Centre, Melbourne Rd, Caribbean men to make use of mental
Leicester LE2 0GU health services prior to crisis
Tel: 0116 2530947
info@accforum.co.uk
Alicia Spence The mental health service needs of
217 Waterloo Terrace, African and Caribbean women
Newhampton Road East,
Whitmore Reans,
Wolverhampton WV1 4BA
Tel: 01902 571230
support@acci.org.uk
www.acci.org.uk
Philip Talbot The level of interaction between Black
Malvern Gate, Bromwich Road, and minority ethnic individuals aged
Worcester WR2 4BN 50 and over and service providers in
Tel: 01905 740950 relation to mental health wellbeing
ageconcern@achw.org.uk in Worcestershire
www.achw.org.uk
Sue Topalian The mental health needs of Somali
Bristol CAMHS and Joint 11 to 18 year olds in Bristol
Commissioning Development Officer,
PO Box 57, Room 361,
The Council House, College Green,
Bristol BS99 7EB
Tel: 0117 9037937
sue.topalian@bristol.gov.uk
The Vine Project, The needs of African Caribbean people
Aston Christian Centre, between the ages of 18-65 that live in
3 Trinity Road, 1st Floor, the Aston and surrounding areas of
Birchfield Neighbourhood Office, Birmingham with regard to their
Birmingham B6 6AH mental health and talking therapy
Breege McDaid Inequalities and cultural needs in
60 Duke Street, Liverpool L1 5AA mental health service provision for
Tel: 0151 7074302 Black and minority ethnic communities
breege.mcdaid@iccm.org.uk in Liverpool
Angela Kandola Access to mental health secondary
198 Mansfield Road, care services for South Asians
Nottingham NG1 3HX in Nottinghamshire
Tel: 0115 924 5555
angela.kandola@awaaznottingham.org.uk
angela.kandola@btconnect.com
134

Contact details of the community
organisations that participated in this project
Community organisation
Bangladesh Welfare Association/
Culture Works, Portsmouth
Barnsley Black and Ethnic
Minority Initiative (BBEMI)
(now Barnsley Gypsy
Traveller Project)
Bedford African &
Caribbean Forum
Bedfordshire African Community
Centre (BAAC), Luton
Big Life Services, Liverpool
Binoh of Manchester
BME Housing Consortium/RAMA
(Asian men’s support group),
Wolverhampton
DRE Community Engagement Study Appendix 4
Appendix 4
Contact details Study report title
Syed Aminul Haque The mental health needs of the
and Shipa Ahmed Khan Bangladeshi community in Portsmouth
Portsmouth Jam-e-Mosque Building,
Unit 2, 75 Bradford Road, Southsea,
Portsmouth PO5 1AA
Tel: 0239 2295448
bwaportsmouth@hotmail.com
Sharon Smith Two studies: Whether existing mental
BBEMI, 4 Burleigh Court, health services in Barnsley are
Barnsley S71 1XY appropriate and responsive to the
Tel: 01226 284477 needs of refugees and asylum seekers
sharon@bbemi.org.uk and migrant workers
Whether mental health services are
appropriate and responsive to the needs
of the Gypsy and Traveller
communities of South Yorkshire
Carl Bernard The after-care services in Mid and
Swan House, 2nd Floor, North Bedfordshire for male/female
3-5 High Street users with mental health service issues
Bedford MK40 1RN aged between 18-35 from the African/
Tel: 01234 340600 / 01234 348127 Caribbean community
bac@forum.fsbusiness.co.uk
Bony Ndjov-A-Shamalo The mental health needs of
The Basement, Aldwyck House, African refugees, asylum seekers
Upper George Street, Luton LU1 2RB and new migrants
Tel: 01582 484807
info@africancentre.org.uk
Faren-Ebi Pumude Why Black and Muslim women
Big Life Services, 124 Duke Street, in Liverpool do not access mental
Liverpool, Merseyside. health services and also to find out
Tel: 0151 709 7030 what services are available and how
faranebi.pumude@thebiglifecompany.com accessible information was to obtain
and
Christine Holland and Neil Turton,
Big Life Services, Kuumba Imania
Millenium Centre, 4 princes Road,
Liverpool L8 1TH
Rabbi S Grant Mental health service needs amongst
Binoh Centre, Broadhurst House, the Orthodox Jewish community in
Bury Old Road, Salford M7 4QX Greater Manchester
Tel: 0161 7208585
binohmanchester@tiscali..co.uk
Arun Bector Asian men’s mental health
4 Second Floor, The Royal London
Buildings, Princes Square,
Wolverhampton WV1 1LX
Tel: 01902 571286
arunbector@bmeconsortium.freeserve.co.uk
135

Contact details of the community
organisations that participated in this project
Community organisation
BME Mental Health Community
Development Team, Oldham
Primary Care Trust
Blackburn with Darwen
Community Links
Black Country Holistic
Approach, Walsall
Bolton Association and Network of
Drop Ins (BAND)
Brunswick Community Development
Project (BCDP), Brighton and Hove
Centre for African Families Positive
Health (CAFPH), Luton (now known
as Centre for All Families Positive
Health/CAFPH)
Chinese Mental Health Association
(CMHA), London
DRE Community Engagement Study Appendix 4
Appendix 4
Contact details Study report title
Black and Minority Ethnic Mental Black and minority ethnic elders within
Health Community Development the Pakistani, Bangladeshi, Indian,
Team, Oldham Primary Care Trust, Polish and Ukrainian communities
Ellen House, Waddington Street, looking at their experiences and
Oldham OL9 6EE perceptions of mental health issues in
Tel: 0161 621 7136/0161 622 6500 Oldham
www.oldham.nhs.uk/ochs/what.htm
Iqbal Patel Rehmat Hasham
c/o 35 Dukes Brow, Blackburn, Exploring the needs, views and
Lancashire BB2 6EX experiences of South Asian
Tel: 01254 601081 mental health carers in Blackburn
rehmat_hasham@hotmail.com with Darwen
Richard Clarke
The MAP, Green Lane, Walsall, The mental health needs of Black and
West Midlands WS2 8HG minority ethnic young people
Tel: 01922 474744
rac_hac@yahoo.co.uk
Rita Liddell Two studies: Barriers affecting those
The Bolton Hub, Bold Street, aged 50+ from the South Asian
Bolton BL1 1LS community when accessing mental
health services and whether socio-
Tel: 01204 546070
economic factors impact on their
admin@band.org.uk
mental health
Issues and barriers faced by the Black
and minority ethnic communities in
accessing mental health services and
their experiences once they access
mental health services in Bolton
The Old Market, Upper Market Street, Access to mental health services and
Hove BN3 1AS treatment for the Arabic speaking
communities in Brighton and Hove and
whether they are culturally appropriate
Kingham House The mental health needs of African
1 Kingham Way (off Reginald Street), heritage people affected by HIV/AIDS
Luton, Bedfordshire LU2 7RG in Bedfordshire
Tel: 01582 726061 or 726063
info@cafph.org
www.cafph.org
Perry Fung Two studies: Investigating the barriers
2nd Floor, Zenith House, and difficulties faced by older Chinese
155 Curtain Road, London EC2A 3QY people in Tower Hamlets and Hackney
in coping with mental health issues
Tel: 0207 613 1008
perry@cmha.org.uk The exploration of mental health needs
www.cmha.org.uk and experiences of the Chinese
community in Barnet
136

Contact details of the community
organisations that participated in this project
Community organisation
Chinese National Healthy
Living Centre, London
Derby Millennium Network (DMN)
Derbyshire Gypsy Liaison Group
(DGLG), East Midlands Region
Derman for the Well-being of
the Turkish and Kurdish
Communities, London
Dignity Mental Health Service,
Luton
Devon and Cornwall Refugee
Support Council (DCRSC) and
Plymouth Teaching Primary
Care Trust
Dorset Mind
Éirim Mná, Midland Heart/Focus
Futures, Birmingham
DRE Community Engagement Study Appendix 4
Appendix 4
Contact details Study report title
Eddie Chan The mental health service needs of
29-30 Soho Square, Chinese elders in Westminster,
London W1D 3QS Kensington and Chelsea, and Brent
Tel: 020 7287 0904
eddie.chan@cnhlc.org.uk
www.cnhlc.org.uk
Angela Simpson The experiences of 18+ Black and
Health and Well Being Centre, South Asian service users and carers
5 Peartree Road, Derby DE23 6PZ in the Derby city area
Tel: 01332 250720
hascpo@derbymilleniumnetwork.co.uk
dmn@derbymilleniumnetwork.co.uk
Siobhan Spencer ‘I know when it’s raining’:
Office 3, Ernest Bailey Community the emotional health and well-being
Centre, New Street, Matlock, needs of Romany Gypsies and
Derby DE4 3FE Irish Travellers
Tel: 01629 583300
info@dglg.org
Algin Saydar Voice of men: mental health needs
Derman Head Office, The Basement, assessment of Turkish/Kurdish and
66 New North Road, London N1 6TG Cypriot/Turkish men in Hackney
Tel: 0207 6135944
services@derman.org.uk
Trevor Adams The role faith communities can play in
27 Axe Close, Luton LU1 1SA the mental health service needs of the
Tel: 01552 651011 African Caribbean community in Luton
admin.frcc@btconnect.com
Lyn Nightingale Two studies: The experiences of
NHS Plymouth, Plymouth Primary asylum seeking and refugee women,
Care Trust, Building One, Brest Road, children and young people living in
Plymouth PL6 5QZ Plymouth
www.plymouthpct.nhs.uk ‘A normal reaction to an abnormal
situation’: the mental health of lone
male refugees and of those seeking
asylum in Plymouth
Timon Hughes-Davies Knowledge and perceptions of the use
11 Shelley Road, of compulsory powers in mental health
Bournemouth BH1 4JQ among Black and minority ethnic
Tel: 01202 392910 communities in Bournemouth, Poole
contact@bpd-mind.fsnet.co.uk and East Dorset
Tony Merry The mental health needs of Irish
St Eugene’s Court, 77 Rea Street, women in Birmingham
Digbeth, Birmingham BS 6BB
Tel: 0121 6221833
tony.merry@midlandheart.org.uk
137

Contact details of the community
organisations that participated in this project
Community organisation
Faith Community Project (FACOP),
Middlesbrough
The Forest Bus Mobile Project,
Hampshire
Future Health and Social Care
Association, Birmingham
Guideposts Trust and Watford Asian
Community Care
Healing Waters, Croydon
Health, Advocacy and Resource
Project (HARP), Manchester
Hikmat BME Elders Centre, Exeter
Hopscotch Asian Women’s Centre
(HAWC), London
DRE Community Engagement Study Appendix 4
Contact details
Folu Nubi
96 Park Lane, Middlesborough,
Tees Valley TS1 3LL
Tel: 07825 164649 / 07956 365656
folu2nubi@yahoo.co.uk
Jane Peacock
Forest Bus House,
Unit A8.2, North Road,
Marchwood Industrial Park, Normandy
Way, Marchwood, Hants SO40 4BL
Tel: 02380 663866
jane@forestbus.co.uk
www.forestbus.co.uk
Sharon Annakie
2-4 Summer Hill Terrace,
Birmingham B1 3RA
Tel: 0121 265 2650
lucy.peterson@futurehsc.com
www.futurehsc.com
Leslie Billy
Henry Smith House, 3-5 Estcourt
Road, Watford WD17 2PT
Tel: 01923 223554
lbilly@guidepoststrust.org.uk
Marjorie Francis
PO BOX 3026, Coulsdon CR5 9AP
info@healingwaters.org.uk
Elaine Dixon
The Zion Centre, 339 Stretford Road,
Hulme, Manchester M15 4ZY
Tel: 0161 226 9907
info@harp-project.org
www.harp-project.org
Fiona Hutton
Regus House, 1 Emperor Way,
Exeter Business Park, Exeter,
Devon EX1 3QS
Tel: 01392 314753
kulini@msn.com
42 Phoenix Road, London NW1 1TA
Tel: 0207 3886200
nahar.choudhury@hopscotchawc.org.uk
Appendix 4
Study report title
The effective use of faith in alleviating
mental health problems amongst
asylum seekers and refugees in
the Tees Valley
Mental health, equality and wellbeing
of Gypsies and Travellers in Hampshire
The needs of Black minority ethnic
carers who care for those with
dementia, in the Ladywood area
of Birmingham
Asian women from Indian, Pakistani,
Sri Lankan and Bangladeshi
communities in Watford and their
understanding about mental well
being: their views about the
accessibility and appropriateness
of local mental health services
The after-care mental health services
in Croydon for African, African-
Caribbean and Black British male
mental health service users aged
between 18-45 years
The mental health needs of refugees
and asylum seekers in Manchester
‘Like suffer in a dark fridge’:
the mental health experiences
and outcomes of Black and minority
ethnic elders and their carers in and
around Exeter
The mental health needs of young
people from a Bangladeshi background
from the London Borough of Camden
138

Contact details of the community
organisations that participated in this project
Community organisation
Irish Welfare and Information
Centre, Birmingham
Karma Nirvana, Derby
(now known as Karma Nirvana
Male & Female Project)
Khidmat Centres, Bradford
Lewisham Day Centre for Refugees
and Asylum Seekers
Maytree Nursery and Infant School
parent support staff, Southampton
Mind in Harrow
Mind in Tower Hamlets (MITH)
My Time New Communities Team,
Birmingham
Nguzo Saba, Preston
DRE Community Engagement Study Appendix 4
Contact details
Hugh Tibbits
45 Alcester Street, Deritend,
Birmingham B12 0PY
Tel: 0121 604 6111
Shazia Qayum
Unit 6, Rosehill Business Centre,
Normanton Road, Derby DE23 6RH
Tel: 01332 604098
shaziaqayum@btconnect.com
Mohammed Saleem Khan
36 Spencer Road, Bradford BD7 2EU
Tel: 01274 521792
info@khidmat.org.uk
Makila Nsika
c/o FrancoEast, Unit 10B,
Deptford Business Park,
Deptford, London SE8 5AD
Tel: 0208 6912020
ledaycentre@hotmail.com
Rajvinder Sandu
Power Parents Project,
Maytree Nursery and Infant school,
Derby Road, Southampton SO14 0DY
Tel: 02380 630522
head@maytree.southampton.sch.uk
Arvind Joshi
8 Havelock Place, Harrow,
Middlesex HA1 1LJ
Tel: 0208 4260929
a.joshi@mindinharrow.org.uk
Michelle Kabia
Open House, 13 Whitehorn Street,
London E3 4DA
Tel: 020 7510 1081
michelle.kabia@mithn.org.uk
172 Herbert Rd, Small Heath,
Birmingham, B10 0PR
Tel: 0121 766 6699
info@mytime.org.uk
Christina Cooper
16-18 Derby Street, Preston,
Lancashire PR1 1DT
Tel: 01772 883733
nguzosabacentre@yahoo.co.uk
www.nguzosabacentre.org.uk
Appendix 4
Study report title
The mental health needs of older
Irish adults in Birmingham
The mental health and wellbeing needs
of South Asian women re-settling in
Derby following domestic violence
The mental health needs of older
people from South Asian communities
in Bradford
The mental health needs of refugees
and asylum seekers in the London
Borough of Lewisham
Power to parents: work by a local
school to enable South Asian parents
to foster their children’s mental
wellbeing
Gujarati-speaking Asian elders’
experiences/views and attitudes of
mental health and mental health
services in Harrow
The experiences that adult mental
health service users and survivors from
African and Caribbean, Bengali and
Somali communities have had of
using mental health services in
Tower Hamlets or other boroughs
Mental health needs of asylum
seeker and refugee men and
women community in Small
Heath, Birmingham
Exploring the mental health needs
and access to mental health support
services for young males aged 14 to 25
years from African, Caribbean,
South Asian and mixed heritage
backgrounds within Preston.
139

Contact details of the community
organisations that participated in this project
Community organisation
North Hampshire Caribbean and
African Network
Northampton Irish Support Group
Northamptonshire Somali
Community Association (NSCA)
Partners of Prisoners (POPS) and
Families Support Group,
Manchester
Penwith Community Development
Trust, Cornwall
Portsmouth Race Equality Network
Organisation (PRENO)
The Qalb Mental Health Centre,
London (now known as Qalb
Centre Services Ltd)
Rethink Birmingham
Rethink Sahayak Services, London
DRE Community Engagement Study Appendix 4
Appendix 4
Contact details Study report title
Jeanne James Obrey Alexis Mental health, equality and wellbeing
14 Bliss Close, Brighton Hill, of Caribbean and African black men
Basingstoke, Hampshire RG22 4EJ in Hampshire
Tel: 01256 354736
obrey2001@yahoo.co.uk
Vince Carroll A report on the 1st generation Irish
112 Adnitt Road, community in Northampton, and their
Northampton NN1 4NG experiences of mental health and
Tel: 01604 473920 mental health services
thomas.vincent.carroll@ntlworld.com
Abdirahman Abdi and Abade Ahmed, Jaah Wareer (Trauma)? I live with this:
8 Hounsbarrow Road, Briar Hill, post traumatic stress in the Somali
Northampton NN4 8SA community in Northampton and their
experiences of health services
Diane Curry OBE The mental health needs of young
Valentine House, 1079 Rochdale Road, Black and minority ethnic men based
Blackley, Manchester M9 8AJ in HMP/YOI Hindley
Tel: 0161 702 1000
diane@partnersofprisoners.co.uk
www.partnersofprisoners.org.uk
Dilys Down Barriers to accessing mental health
The Penwith Centre, Parade Street, services within the Black and minority
Penzance, Cornwall TR18 4BU ethnic community in Cornwall
Tel: 01736 330198
dilys@pcdt.org.uk
www.pcdt.org.uk
Tunde Bright-Davies The mental health needs of people aged
Unit 2, Victory Business Centre, 50 and over in the Chinese, Vietnamese
Somers Road North, Portsmouth, and Sikh communities in Portsmouth
Hampshire PO1 1PJ and the views of service providers
Tel: 02392 877 189 regarding BME service users
tuned@preno.org.uk
Yasmin Choudhry The mental health service needs of
26 Low Hall Lane, Walthamstow, South Asian communities in the
London E17 8BE London Borough of Waltham Forest
Tel: 0208 521 5223
theqalbcentre@hotmail.com
Ajaib Khan The mental health views, concerns and
28 Glebe St, Walsall, WS1 3NX needs of the Pakistani community in
Tel: 01922 627706 Small Heath, Birmingham
ajaib.khan@rethink.org
Carol Gosal Understanding the effects of domestic
197 Kings Cross, London WC1 9DB violence for South Asian women
Tel: 0207 7138984
claire.felix@rethink.org
140

Contact details of the community
organisations that participated in this project
Community organisation
Rethink West Dorset Services
(now known as West Dorset Rethink)
Rotherham Yemeni Community
Association (now known as Yemeni
Community Association)
RUN-UP (Redbridge User Network
User Pressure Group)
Sahara Spotlight Group, Sahara
Women’s Group, Middlesbrough
(now known as Tees Valley Asian
Welfare Forum Limited)
Saheli Asian Women’s Project,
Manchester
Sharing Voices (Bradford)
Shifa, Woking
Smethwick Bangladeshi Youth
Forum, Birmingham
DRE Community Engagement Study Appendix 4
Appendix 4
Contact details Study report title
Andrew Court Mental health needs of Eastern
5 Carlton Road North, Weymouth, Europeans and preparedness of
Dorset DT4 7PX services to meet this need
Tel: 01305 766193
andrew.court@rethink.org
Abdulla Mohamed Exploring the mental health needs of
35 Hatherley Road, Eastwood, the Yemeni community
Rotherham S65 1RX
Tel: 01709 821871
ryca@btconnect.com
Christine Bullivant The experience of people from Black,
98-100 Ilford Lane, Ilford, Asian and minority ethnic groups
Essex IG1 2LP in adult acute mental health settings
Tel: 0208 9252435 in Redbridge
runupuk@hotmail.com
Rifaat Raja Zarina Din Mental health service needs of
11 Thornwood Avenue, Ingleby Asian women
Barwick, Stockton on Tees TS17 0RS
Tel: 01642 765574
tvawf@yahoo.co.uk
Priya Chopra The mental health needs of South
PO Box 44, S.D.O, Asian women who are survivors of
Manchester M20 4BJ domestic violence
Tel: 0161 9454187
saheli.centre@virgin.net
Mohammad Shabbir Self-defined mental health needs of the
99 Manningham Lane, Manningham, Muslim community
Bradford BD1 3BN
Tel: 01274 731166
www.sharingvoices.org.uk
Ghazala Why people over the age of 50 from
Corner House, 2 Courtenay Road, Pakistani, Bengali, Indian, Nepalese
Woking, Surrey GU21 5HQ and Chinese communities who are
Tel: 01483 756318 Ext 224 living in the North and West Surrey
mailto:info@shifa-woking.org.uk areas do not access mental health
www.shifa-woking.org.uk services provided by the NHS Trust in
North West Surrey and part of North
East Hampshire
Johur Uddin Sandwell Bangladeshi mental health
North Smethwick Resource Centre, needs analysis research
Cambridge Road, Smethwick,
West Midlands B66 2HR
Tel: 0121 565 3311
johur@sbyf.org.uk
141

Contact details of the community
organisations that participated in this project
Community organisation
Social Action for Health and
Mellow, London
Somerset Racial Equality Council
Southside and Fanon, London
(now known as Southside
Partnership)
SubCo Trust, London
Talking Matters Wellbeing Centre,
London
Tees Valley Voices for Justice,
Middlesbrough
Turkish Women’s Support Group,
London
UK Coalition of People Living with
HIV and AIDS (UKC), London
DRE Community Engagement Study Appendix 4
Appendix 4
Contact details Study report title
Elizabeth Bayliss The impact assessment of the Mental
The Brady Centre, 192 Hanbury Street, Health Guide Programme: a mental
London E1 5HU health community development
Tel: 0207 2471414 project within Hackney’s African
elizabethb@safh.org.uk and Caribbean communities
PO Box 75, Somerton, Researching BME views on mental
Somerset, TA11 9AR health provision in Somerset: light at
Tel: 01458 274200 the end of the tunnel?
info@srec.org.uk
Claudette Campbell-Bailey Male African and African Caribbean
31-33 Lumiere Court, 209 perspectives on ‘recovery’
Balham High Road,
London SW17 7BQ
Tel: 0208 7726222
ccampbell-bailey@southsidepartnership.org.uk
www.southsidepartnership.org.uk
Taskin Saleem Asian elders’ and carers’ access to
49 Plashet Road, Upton Park, mental health services
London E13 0QA
Tel: 0208 548 0070
taskin@subco.org.uk
Jose Martin Emotional experiences and attitudes
The Library, Portland Avenue, of Orthodox Jews in Stamford Hill:
Stamford Hill, London N16 6SB a needs assessment of mental health
Tel: 0208 802 9222 services in the Ultra Orthodox Jewish
office@talkingmatters.info community in North London
William Meli The mental health needs and
Ground Floor, Erimus House, experiences of African men living
4 Queens Square, in the Tees Valley
Middlesbrough TS2 1AA
Tel: 01642 354143
info@blackstudentsproject.co.uk
Suzanne Ahmet The mental health needs of Turkish
42 North Square, Edmonton Green, speaking children/young persons
London N9 0HY
Tel: 0208 8074525
suzanne_twsg@yahoo.co.uk
Jack Summers The mental health needs of Black
250 Kennington Lane, African people living with HIV
London SE11 5RD
142

Contact details of the community
organisations that participated in this project
Community organisation
Wai Yin Chinese Women Society,
Manchester
The Wiltshire Trust, Southampton
YWCA Doncaster Women’s Centre
Youth Voice, Leicester
DRE Community Engagement Study Appendix 4
Contact details
Louise Wong and Mark Greenwood
61 Mosley Street, Manchester M2 3HZ
Tel: 0161 2375908
mark_greenwood@waiyin.org.uk
Phil Simmons
PO Box 566, Southampton,
Hampshire SO14 3XJ
Tel: 02380 232220 / 07981 989126
phildazzler@googlemail.com
Mandy Willis
21 Cleveland Street,
Doncaster DN1 3EH
Tel: 01302 309819
joyce.foster@ywca.org.uk
Hamza Vayani
1st Floor, Block D, Wellington House,
29 Albion Street, Leicester LE1 6GD
Tel: 0116 2239177
hamza@youth-voice.org
Appendix 4
Study report title
The needs of Chinese older people
with dementia and their carers
Investigating the extent and impact
of isolation and loneliness amongst
ex-service users and carers
The mental health needs of Black
and minority ethnic communities
in Doncaster
Substance misuse and mental health
services: an exploration of the
experiences and attitudes of young
people from Black and minority
ethnic (BME) communities
143
 Appendix 5
Questionnaire for community
development workers (administered online)

Note: The online survey was interactive, so a response to a (B) About your CDW role
particular question would automatically result in respondents
being redirected to a further appropriate question. These are 2. In which year did you take up your CDW post,
indicated in the questionnaire below with * working on the Delivering Race Equality in Mental
Health Care agenda?
2005
(A) Information about this survey 2006
1. 
The International School for Communities, Rights and 2007
Inclusion (ISCRI) at The University of Central Lancashire
(UCLan) is working on a report about the mental health 2008
community engagement projects undertaken 2005-2008,
relating to Delivering Race Equality in Mental Health Care. 2009

2. 
To add current detail to the report, ISCRI is interested
in gathering the views of Community Development
3. In which Strategic Health Authority (SHA) region
Workers (CDWs) about the impact of the community
do you work?
engagement projects.
East of England
3. The following questions ask about your involvement in the
DRE Community Engagement Projects. Even if you did not East Midlands
take part in this in any way, please would you let us know
this by answering the initial questions. When you answer London
that you were not involved, you will skip to the final North East
questions and submission option.
North West
4. The information you give will be analysed and will appear
in a report along with the overall findings of the project. The South Central
report is likely to appear on the relevant mental health
websites, be distributed to relevant organisations and some South East Coast
findings will also be reported in academic journals and
South West
mental health publications.
West Midlands
5. The questionnaire is completely anonymous: we don’t want
you to put your name on it and no information that could Yorkshire and the Humber
identify you will be published nor passed on to anyone else.
You don’t have to answer any of the questions you if don’t
want to, but please answer where you can.
(C) FISs
6. If you have any questions about this questionnaire, please
get in touch with Joanna Hicks: jshicks@uclan.ac.uk or 4. Do you work in a DRE Focused Implementation
Jane Fountain: jfountain1@uclan.ac.uk Tel: 01772 892780 Site (FIS)?
Yes
7. 
If your involvement in the community engagement
programme was very limited (e.g. if you have come into No
post since spring 2008) this questionnaire will take just a
couple of minutes to complete. If your involvement in the *If no, redirected to q6
programme was greater, it will take up to 15 minutes.

1. Please tick boxes below before you begin

I have read and understood the explanation of the survey
given in the accompanying email and above

I agree to take part in this survey

DRE Community Engagement Study Appendix 5 144

 Appendix 5
Questionnaire for community
development workers (administered online)

5. Which FIS do you work in? 8. Which ONE of the following best describes your role in
the community engagement projects?
Bedfordshire & Hertfordshire
I worked as a community researcher in the community
Birmingham & the Black Country engagement project and took up my CDW post afterwards
County Durham & Tees Valley 
I played a major role in delivering the project (e.g.
meeting often with community researchers and/or leading
Dorset & Somerset
on the project)
Greater Manchester

I played a minor role in delivering the project (e.g.
Hampshire & Isle of Wight providing some information and offering some support)

Leicestershire, Northamptonshire & Rutland I joined the steering group only

Northumberland, Tyne & Wear Other – please add details below

North Central London

North East London 9. If you answered ‘other’ above, what was your role?

North West London

South East London

South West Peninsula

South Yorkshire (E) Improvements

Surrey & Sussex
Trent
West Yorkshire
(D) Community Engagement Projects
6. Are you aware of any mental health community
engagement research projects undertaken as part of the
DRE Mental Health/UCLan Community Engagement Project
in your area? (Note: if you answer ‘no’ to this question
you will be automatically directed to the closing section
of this survey)
Yes
10. Are you aware of improvements in mental health
services for Black and minority ethnic communities that
have occurred as a result of any of the DRE/UCLan Mental
Health Community Engagement projects? Please tick ONE
of the options below that best describes your response:
Yes – I have seen improvements made as a result of the
DRE/UCLan Community Engagement Projects.
I have seen improvements, but I am not sure if they are
connected to the DRE/UCLan Community Engagement
Project.
I have not observed improvements based on DRE/UCLan
Community Engagement Project.
* If the last option, redirected to q14

No
11. Please would you briefly describe up to 3 improvements
Not sure
in mental health care for Black and minority ethnic people
*If no, redirected to q17 in your area that you feel have links with the DRE Mental
Health/UCLan community engagement programme. If these
were aimed at specific communities, please state which.

7. Were you involved in any of the UCLan mental health Improvement 1

community engagement projects in your area?

Yes
Improvement 2
No
* If no, redirected to q10 Improvement 3

DRE Community Engagement Study Appendix 5 145
 Appendix 5
Questionnaire for community
development workers (administered online)

12. How did the DRE Mental Health/UCLan 15. What are the obstacles, from your point of view?
Community Engagement Project help to bring
Lack of financial resources
about these improvements?
Highlighted community needs Lack of human resources

Helped to open up access to communities for service Lack of support from senior management
providers/commissioners
Lack of support from healthcare professionals
Helped identify new services that are needed
Other issues taking priority
Raised profile of mental health issues in the communities
Other issues

Created a team of trained community researchers to
continue work in the community for service improvement
16. If you answered ‘other issues’ above, please give
Developed links between community groups and service
details here
providers and commissioners

Other

13. If you answered ‘other’ above, please give

details below:

(G) Thank You

Thank you for taking the time to complete this survey.
Your participation is much appreciated.

17. If there are any other comments you wish to make on

(F) Obstacles the community engagement projects, please do so here.
14. Are there obstacles you are aware of that have
prevented improvements in mental health services
taking place for people from Black and minority
ethnic communities in your region?
Yes

No

Don’t know

*If no, redirected to q17

DRE Community Engagement Study Appendix 5 146

 Appendix 6
Key of commentaries

The social inclusion agenda

David Morris, page 26

Community engagement: a very personal journey

Jez Buffin, page 76

A basic framework for cultural competency

Jonathan Bashford, page 77

Service user involvement in research

Mary Nettle, page 89

User-Focused Monitoring
Robert Little, page 90

The needs of a rising tide of older people from Black and

minority ethnic groups
Ajit Shah, page 91

Shifting Sands: The changes in DRE’s context 2005-2008

Christina Marriott, page 95

A race equality lead’s perspective on supporting the

NIMHE Community Engagement Project
Manjeet Singh, page 105

Delivering race equality (DRE) – some reflections

Marcel Vige, page 111

The key role of community development workers in

delivering DRE using Values-Based Practice and the
3 keys to a Shared Approach in mental health assessment
Bill Fulford and Malcolm King, page 112

DRE Community Engagement Study Appendix 6 147

 NOTES
Notes

DRE Community Engagement Study Notes 148

 University of Central Lancashire
International School for Communities, Rights and Inclusion
School Office, Harrington 122
Preston, PR1 2HE
United Kingdom

Tel 01772 892780

Email iscrioffice@uclan.ac.uk