1.

Improve the quality and specificity of information

2. Agree outcomes that will have long-term impact
3. Respond to a clients changing needs
4. Work out who all your users are, not just the end user
5. Collaborate - and be seen to collaborate
6. Connect with other service providers
7. Help users to inspire and motivate others
8. Use consumer group frameworks to assess your therapy provision
9. Involve users at a policy (not necessarily executive) level
10. Draw on user involvement initiatives beyond speech and language therapy
Practical points: putting users in the driving seat
l put users n the
drvng seat
Sooner or ater, most earner drvers
reach a pont where they are ready to
go o on ther own, an exharatng sghty
scary moment. vhen you thnk about t,
speech and anguage therapsts have a ot
n common wth drvng nstructors -
patence, good communcaton sks,
vson, knowng when to appy the brakes
- but do we uy understand what t
means to put our users n the drvng seat'
Here, three contrbutors who work or
consumer groups* suggest why we shoud
acceerate the process.
* ...as they uncton argey outsde o the heathcare system,
consumer groups are n a poston to see the bgger pcture and
to pck up on trends ong beore those workng nsde the system
can perceve them. Ths s argey a resut o consumer groups
eorts to construct a new knd o scence - one whch uses a
combnaton o observaton, anecdote, daogue, compants and
human nput as we as the avaabe scentc, socoogca and
psychoogca evdence - to reach ts concusons regardng
approprate care, and to denty probems and opportuntes
or change. (Thomas, P. (oo) The mdwe you have
caed knows you are watng... AlNS Journa +( (), p.)
Ann Auchterlonie is Director of
Afasic Scotland. She writes in a
personal capacity informed by
her experience with Afasic in
Scotland. The views stated here
are not necessarily those of
Afasic and do not reflect the UK
situation.
Please note that Afasic Scotland
has moved to:
Unit 1 Prospect III, Gemini Crescent,
Dundee Technology Park, Dundee DD2
1TY tel: 01382 561891 Fax: 01382
568391 email: afasicscot@aol.com
Carole E. Higginbottom was
until recently speech and
language therapy service
manager at The Robert Ogden
School in South Yorkshire. She is
now a freelance consultant,
currently working for Barnsley
Local Education Authority at a
strategic level supporting their
resource provision for children
with autism
(e-mail
carole.higginbottom@btopenworld.com).
Cecilia Yardley is Director of
Services with Speakability,
www.speakability.org.uk.
you want
to ocus on soutons not
probems
cents to take more
responsbty
your mpact to contnue
when therapy stops
Read ths
cover story
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 (
go unfilled? Have you considered what the impact of a six month break
in therapy is for a child? Parents regularly ask who is responsible for the
provision of speech and language therapy because they want to find
out who is responsible for not filling the posts and sustaining the service
identified as critical to meeting their childs special educational needs
and, sometimes, they do not get straight answers. The authority is
responsible for provision but the filling of the post is the responsibility
of the health trust and, while the letters and telephone calls are
exchanged, childrens needs go unmet.
Occasionally, the issues are of effective provision at a local level - the qual-
ity of the individual service provided or the management of staff working
in relatively isolated situations, or in schools. Resolving the problemcan be
difficult when raising it may be seen as a criticism of other managers,
where inter-professional relationships are not good, or alternative sources
of supply are simply not available.
The local authority is currently a user with the responsibilities of a
provider without the powers. So, in the interests of accountability and
services for children in need, should I put the local authority in the
driving seat and clarify both responsibility and accountability? And
would that be enough?
What about parents as co-drivers? In Scotland, parents have statutory
responsibilities in the interests of the child, for their education, health,
development and welfare and to act as the childs legal representative;
and the right to take action to secure appropriate services for them.
They are users.
Afasic actively promotes partnership between parents and profes-
sionals, parents and local authorities and parents and health services.
But is partnership enough?
At present parents value speech and language therapy but have little
understanding of what it entails and who is responsible for providing it.
Their ability to act in their childs interests is restricted. Increased partic-
ipation by parents in the planning and monitoring of service provision
is an essential first step. A parallel step is to involve parents in the ongo-
ing work with their child, helping them understand the nature of their
childs difficulty, what support they can give and how the therapy pro-
vided can impact on their childs learning. The Individual Education Plan
can provide a framework for this where the therapist and the teacher
are working collaboratively and involving the parent, and the proposed
Co-ordinated Support Plan will make it essential (note 1).
If it is the parents duty to act in the interests of their childs health,
development and welfare, how can they fulfil that duty if they are not
in a driving seat?
Right to participation
And what about children and young people themselves - are they just
passengers? Since the UN Convention on the Rights of the Child spelt
out childrens right to participation - and not to be passive recipients of
services provided for them, good or bad - recognition of the importance
of involving children when decisions are made about them has been
gradually developing.
Children of sufficient understanding have the right to consent to, or
refuse, medical examination or treatment. Their rights to be involved in
decisions about their education or their personal life are now enshrined
in legislation and embodied in many national policy documents.
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003
cover story
fasic promotes the interests of
children and young people with
speech and language impair-
ments, works for their inclusion in
society and supports their parents and car-
ers. A common question parents ask us is, Where can I get private
speech and language therapy? It usually follows a complaint that their
child isnt getting enough speech and language therapy, or that their
speech and language therapist has gone off on maternity leave and
hasnt been replaced or, occasionally, that they have no choice in the
therapist provided. Like Oliver Twist, parents want more - usually more
of a good thing. More therapists, more therapy, more one-to-one
therapy, more therapists in secondary schools (are there ANY?) They
also want better. Better understanding of speech and language impair-
ments by GPs and in schools, better evidence of teachers, therapists and
educational psychologists working together, better information about
the nature of their childs difficulty and what the implications are,
better information on the level of service their child is going to receive
and what the intervention is aiming to achieve, and better service
provision.
Parents want more of what they see as a good thing. But, before we
decide to change drivers, we need to consider how that would make a
good thing better. We also need to establish just whos driving the bus
anyway.
Much of Afasics work is done on behalf of children and young people
for whom speech and language impairments have significant implica-
tions for their learning and potential educational achievement. In
Scotland, many children have these needs recognised in a Record of
Needs, opened by the Education Authority to support the planning of
appropriate educational provision (note 1). In these cases, the local
authority is responsible for the provision of speech and language
therapy and funding is provided to enable the authority to secure
therapy services. The authority can choose to buy these services from
their local health trust, or a different one, to buy them from a private
provider or to employ therapists. In practice, local authorities enter into
contracts with their local heath trusts - with varying degrees of success,
if we measure the outcomes against standards such as:
Child-centred provision of services
Collaborative working practice between therapists and teachers
Collaborative training of teachers and therapists
Improved understanding of specific language impairment in schools
Effective service provision
Accountability to parents, children and young people.
Not long ago, a major debate centred round the The Case of the
Disappearing millions, announced by a Government Minister in
Scotland as additional funding for speech and language therapy in
schools. The unhypothecated funds were allocated to local authorities
across Scotland with little impact on services. And, while central gov-
ernment and local authorities passed responsibility to the other and
avoided direct accountability, raised expectations were dashed and chil-
drens needs went unmet. Meanwhile, the allocation of health service
resources to the provision of speech and language therapy for children
whose needs are not recorded went unexamined and the level of
resources actually allocated to speech and language therapy for chil-
dren in school remains difficult to establish across Scotland.
A different problem arises on a regular basis and is a common cause
for complaint: maternity leave. Have you noticed how many speech and
language therapists are female? Have you calculated how many have
maternity leave? Have you noticed how many maternity leave vacancies
A
A aboard!
lrom her poston at the whee o Aasc Scotand,
Ann Auchterone takes a persona vew o some o
the obstaces we need to negotate to brng parents
and young peope wth speech and anguage
mparments on board our bus.

Simply getting older doesnt achieve this. Active participation means

being informed, as far as possible, of the purpose of the therapy, encour-
aged to give their views and to be listened to, helped to understand
what can be achieved through therapy and their own role in making this
happen, and consulted on agreeing and setting targets for outcomes
which will have an impact on them long after therapy has ceased.
First we have to enable children and young people to become users.
But then, can we put these users in the driving seat or even in the back
seat - helping and directing the professional chauffeur to get them to
where they need and want to be?
Notes
1. The Scottish Executive is currently planning changes to the legal
framework for the provision of services for children with special educa-
tional needs, which would abolish the Record of Needs and replace it
with a Co-ordinated Support Plan.
2. Exploring Participation, Afasic Scotland (2002) is available from
Afasic Scotland, tel: 01382 561891, price is 4 plus 1 p&p.
Recently, Afasic Scotland undertook an analysis of the extent to which
children and young people participated in the formal decision making
process involving teachers, speech and language therapists, educational
psychologists and parents in school (note 2). As the project progressed,
we became aware of a vacuum at the heart of the documentation:
amongst the reminders of childrens rights and the need to give due
weight and pay due regard to their views, rarely does there appear any
clear statement about why their participation is so important, or what
end the effort to involve children in the decision making process is
intended to serve.
Obviously, very early intervention takes place because professionals
and parents have recognised the need for therapy and work towards
helping the child, but successful therapy always depends on the childs
participation and the childs willingness to participate plays an increas-
ingly important role in achieving successful outcomes as the child gets
older.
To be a user of speech and language therapy, children and young peo-
ple need to move from being passive recipients to active participants.
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003
cover story
ach young person with autism
is as unique as a fingerprint
and all are challenged by their
autism in a different way. I
work as a speech and language therapy service manager in The Robert
Ogden School situated in South Yorkshire. The school is run by The
National Autistic Society and provides education and care for 138 young
people between the ages of 7 and 19 years. We are fortunate enough to
have three full-time specialist speech and language therapists support-
ing both the educational and residential provision and working along-
side these dedicated teams to provide individualised yet flexible pro-
grammes to minimise the impact of autism on the young peoples lives
and those of their families.
When I was first asked to write this article, I immediately thought of my
time in the NHS and panicked! Why wasnt I, as the manager of a service
for children and adolescents with autism, dishing out questionnaires
and audit forms to my service users? I couldnt possibly be putting users
in the driving seat if I didnt have reams of paper and graphs to prove
how effective and professional we are. Then I thought again. Who actually
are the service users? Where do we make the biggest impact? How do
we respond to the changing needs of the individuals that we work with
on a daily basis? How do we know what they need? More importantly,
how do they tell us what they need?
It is difficult to say, really, who our service users are: the young people with
autism; their parents or carers; the teachers; residential social workers;
special support assistants; respite service staff; the taxi drivers? Each one
can have a significant impact, for better or worse, on the lives of indi-
viduals with autism. Their influence should not be underestimated or
undervalued. The person with autism is, of course, the end user of the
service but the parents, carers and professionals accompany the child
with autism on his or her life journey and therefore can and should access
the support and expertise of the speech and language therapy service.
Where do we make the biggest impact? The role of the speech and
language therapist at The Robert Ogden School is to work as part of a
multidisciplinary team in its broadest sense, sometimes leading sometimes
following, but always keeping the needs of our special young people
uppermost in both mind and practice. The National Autistic Society has
developed a framework, SPELL, for understanding and responding to
the needs of children and adults with an autistic spectrum disorder across
its range of services. This stands for Structure, Positive (approaches and
interventions), Empathy, Low arousal (approaches and environment) and
Links (between the various components in a persons life). As spells go,
this one, if applied sensitively with knowledge and to individuals, can sig-
nificantly improve the communication and flexibility of our client group.
1) Structure
Structure can and does change lives. I dont want to seem to be teach-
ing my granny to suck eggs, but this may just simply be changing the
physical structure of a room to using objects of reference and providing
access to symbols, words or pictures to enable a child to understand and
express himself.
Making a childs life predictable and ordered will gradually improve
understanding, communication and behaviour. Modelling practice and
supporting a teacher or parent to set these systems up can be liberating
for both child and adult.
2) Positive (approaches and interventions)
Sometimes I think many of our children would scream, if they could,
Just tell me what to do! We all need to know the rules of the game
not what we are doing wrong. The biggest impact can be made by the
simplest of actions.
3) Empathy
Imagine your worst holiday nightmare; stuck in the middle of deepest
darkest Borneo; lost; dont speak the language; dont know the cultural
taboos (like the advert with the guy with his bare feet on the table) no
food, no drink; no money; horror of horrors no phone! Aagh! Blood
pressure sky high, heart pounding, adrenalin pumping; thats what I
think autism must be like every day.
E
Passng the test
The Natona Autstc Socety encourages ts
therapsts to ocus on the changng needs o
ther young cents, ree rom the constrants o
the NHS. aroe Hggnbottom assesses a Ros
Royce servce.

It is important to distinguish, however, between the policy-making role

of trustees and the executive role of staff and volunteers. When we talk
at Speakability about people with aphasia being in the driving seat, we
mean leading the policy work of the charity. The unpalatable reality -
which both Speakability staff and our client group wrestle with - is that
people with aphasia may no longer be able, unsupported, to undertake
executive roles because of their difficulties with reading, writing,
speaking and memory.
Experience of working over a six-month period with someone with
aphasia who made presentations to groups about aphasia and
Speakability, highlighted that the commitment of support from the
organisation may need to be very intensive to make that sort of role
work. In a medium-sized organisation, where staff are already fairly
stretched, that is not a commitment to take on lightly.
Inspired and motivated
However, people with aphasia who lack confidence in their own ability
to communicate can be very inspired and motivated by hearing one of
observe, facilitate and communicate with the child and others to come
to a consensus about the best ways to enable a child with autism to tell
us what they need. We may not get it right first time but if we can per-
suade these very special children that visiting our world, even for an
instant, is fun then I for one feel Ive made a difference.
As a service, do we put users in the driving seat? Do the wishes of our
client group change the shape of our service? Do we listen? Yes, I think
so. Maybe, as a service manager working for the National Autistic
Society, I am in a very unique position. I am not pressurised by waiting
lists, targets for face-to-face contacts and the rest. I have the greatest
respect for my colleagues in the NHS who respond professionally and
sensitively to these pressures. I am allowed, perhaps even encouraged,
by my masters to focus on the changing needs of my client group without
recourse to number crunching. Maybe thats why I left the NHS...
The National Autistic Society (NAS) is the UKs leading charity for people
with autistic spectrum disorders and their families. In its 41st year, it con-
tinues to spearhead national and international initiatives and provide a
strong voice for autism. The Society provides a wide range of services to
help people with autism and Asperger syndrome live their lives with as
much independence as possible. The NAS has over 12,000 members whose
vote at the General Meeting ultimately controls the Societys direction.
The issues raised by NAS members and other interested individuals have a
major impact on our policy and campaigning work. The NAS Policy &
Campaigns team produces a report once a year on a topic relevant to
autism (for example, diagnosis, inclusion), for which the views and experi-
ences of our members and other interested individuals are surveyed. The
NAS Regional Development teams inform the policy and senior manage-
ment teams of the issues raised by members locally - whether through NAS
branches, schools or social groups. The policy team raises these in meetings
with government officials (such as those at the Department for Education
& Skills, the Department of Health and other agencies) and groups with
which the organisation works.
www.nas.org.uk
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 ;
cover story

ow many people can you fit

in a Mini? A mind-numbing
nineteen!* Of course, laden
with so many individuals,
driving is virtually impossible. And the same is true of organisations with
many stakeholders, unless it is absolutely clear who is in charge of driving.
At Speakability, were quite clear that people with aphasia should be in
the driving seat. This is a conscious change of direction for the organisation.
For most of its twenty-four years, under its former name of Action for
Dysphasic Adults, the charity essentially supported people with aphasia
indirectly. It provided materials and information about aphasia to
speech and language therapists, and looked to therapists to take the
lead on setting up and maintaining the network of support groups.
Since the charitys relaunch in 2000, the Trustees and staff have been
actively engaged in trying to expand the opportunities for people with
aphasia to voice their needs and interests. The process starts at the top
of the organisation. A third of Speakabilitys trustees have aphasia. They
are uniquely placed, in discussions about strategy, to draw on their
experience of living with the condition. And we are about to open up a
further seat on the Board for a person with aphasia, who will be selected
from candidates drawn from the Speakability Action Group, a body that
comprises members of each support group in the country.
H
vhere do you want to go'
Peope wth aphasa are
handed the keys by Speakabty
- aong wth tranng, maps
and navgatona support.
eca Yardey reports.
4) Low arousal
This is the most challenging aspect for all who work with autism - look-
ing and feeling the world with the eyes of autism. What you or I feel is
calming may be wildly stimulating if you have autism.
5) Links
We all know how valuable it is to network at meetings and conferences.
Its vital that service providers connect. For the speech and language
therapist working in my environment this can mean many things.
Attending each Annual Review can influence the other services provided
for a family with autism by supporting the young person, parents and
carers to communicate their needs to organisations like social services,
Connexions (www.connexions.gov.uk) and Local Education Authorities.
Aiding in the setting of communication based yearly objectives can result
in achievement. Working with dedicated residential staff to implement the
requirements of the National Care Standards (www.carestandards.org.uk)
in order to aid the young people to communicate about choices, likes
and dislikes can result in major changes in a childs daily activities.
Working with highly professional education teams to enable access to
the curriculum and to develop strategies can extend young peoples
skills beyond what was initially predicted. Each of these elements con-
tributes to an understanding of the changing needs of the young people
who attend the Robert Ogden School.
Privileged role
The vitally important factor has to be, for the speech and language therapist
at least, how do our service users tell us what they need? Parents, carers
and teachers are usually very clear about their needs and the perceived
needs of the young person. Working with youngsters with autism, it is
often blindingly obvious what they want but not often what they need.
Like all of us, what we want may not be whats good for us; choosing
between chocolate and fruit - no contest - even with informed choice. It
is the privileged role of the speech and language therapist to assess,
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 8
cover story
their peers both describing and demonstrating successful communication.
For this reason, fully aware of the support issues, we are in the process
of setting up a post, on a limited-hours basis, to engage someone with
aphasia to take the lead on promoting our Speakers Panel. Speakers
recruited to the Panel will receive training in how to make presentations
to community groups and statutory bodies. Some of the training will
deal with effective communication strategies, but it will also cover the
kind of user involvement issues addressed by projects like
CancerVOICES (www.cancerlink.org/cancervoices) and the Expert Patient
(www.ohn.gov.uk/ohn/people/expert.htm) initiatives. To take the pres-
sure off aphasic spokespeople, Speakability is shooting a ten minute
video that introduces the work of the organisation.
So, Speakability puts people with aphasia in the driving seat through
involvement as trustees and spokespeople, and also Working Party and
support group membership. Speakabilitys Working Parties are typically
six or eight strong. They meet several times to help develop a particular
product or plan an event. The Patients Passport Working Party, for
example, has provided initial ideas and feedback on prototypes of a per-
sonalised healthcare communication book that is now available for
external consultation with a wide range of organisations outside the
field of aphasia. Speakability recognises the value of specialist knowl-
edge within the Working Party. For example, the Patients Passport
group included a GP who now has aphasia.
Speakability staff have an agreement with working party members
that they will be faithful to the ideas suggested, but will repackage
them, where necessary, to make the language accessible and appropri-
ate to the audience. This is vital when the charity is working with policy
makers. On one occasion, Action for Dysphasic Adults was involved in a
government consultation and delivered a response written in aphasic
language that was submitted late because of the difficulty in meeting
the consultation timeframe. In this instance, the response missed the
mark.
Acting as a bridge between people with aphasia and policy makers,
Speakability must find ways of responding within a very short timeframe
that it often cannot control. So, to reach the destination set by people
with aphasia, it may sometimes appear that Speakability staff are driving.
Perhaps the analogy of competitive blind skiers is appropriate - the blind skier
is taking the lead but the assistant is enabling him to negotiate the course.
Return autonomy
There are other ways in which we try to return autonomy to people with
aphasia. Most of Speakabilitys support groups are run by people with
aphasia, often with the support of non-aphasic volunteers, usually the
partner of an aphasic member. In the words of one person with aphasia,
The group meets for confidence building, conversation and company.
Speakabilitys ethos is very much that carers must not take over and
monopolise the safe place to speak that the groups provide. However, of
course, carers of people with aphasia need their own space to adjust to
the massive impact that aphasia can place on the relationship. In the
past, the charitys focus at group level was very much on the person with
aphasia, somewhat to the exclusion of carers. Now, recognising that a
well-supported carer can offer the best support to the person with aphasia,
we are broadening our approach and laying on workshop sessions to
explore the most pressing issues for carers.
As well as local group meetings, people with aphasia meet together at
Speakability network meetings. These often have a social core - an
entertainment or party - but they are an opportunity to share successes
across the region. For example, members of groups that have raised
money to pay for computers and information technology training for
group members share with others how they did it. The feeling of
achievement, in both having undertaken the activity and then having
communicated with others about it, is palpable. Involvement as a
spokesperson or group officer gives people with aphasia an opportunity
to regain some of the status and social contact they may have lost when
aphasia robbed them of work or leisure activities.
In addition to our work directly with people with aphasia, Speakability
undertakes to make the environment more aphasia-friendly. Calls to
the information service are typically about how to access services and
support for people with aphasia and what family members can do them-
selves to help rebuild communication.
We run training courses for health and social care professionals and
unpaid carers to help them improve their own communication abilities,
and create a better climate for communication for the aphasic person.
Recent publications, including the guidelines booklet Rebuilding
Communication and the Patients Passport, address the same need.
Our campaigning activities and materials that focus on the rights of
people with aphasia, such as the Charter for People with Aphasia and
Joined Up Talking, Joined Up Working, are intended to stimulate
change at policy and service planning levels. Our annual lecture series,
the Mary Law Lecture, aims to generate creative discussion and practice
within the speech and language therapy community. Speakability is also
a stakeholder in the Royal College of Speech & Language Therapists
Aphasia Guidelines development project.
The title of our forthcoming Annual Meeting - Putting people with
aphasia at the heart of their services - could easily be rephrased as
Putting people with aphasia in the driving seat. They are the experts
in where they want to go. Our role as navigator is to make it as smooth
and exciting a ride as possible.
*Record set in new-style Mini 19/12/01. Record for old-style Mini, set
3/7/00 is 18 women.
STOP PRESS
Chief speech and language therapist Lizzy Marks attended
Speakabilitys Rebuilding Communication reception in March
on behalf of Speech & Language Therapy in Practice. Hosted
by Tim Boswell, Shadow Minister for Education & Skills and
for Disabilities, well over 100 people came to Westminster for
the launch of the Rebuilding Communication guidelines, the
Patients Passport Consultation and work on a more aphasia-
friendly website.
In a personal message, the Prime Minister Tony Blair said of
Speakability, I am delighted to see that the charity is
successfully bringing together individuals and organisations
that can work together to dismantle the barriers that face
people with aphasia and other communication impairments.
John Hughes, who heads the Disability and Carers Directorate
Benefit Policy Division, reported that the government is
committed to providing an accessible customer service in
benefits offices. In a rolling training programme, the first
module is about dealing with people with communication
impairments, and 8000 staff will be using Speakabilitys
Rebuilding Communication guidelines in their training.
Speakabilitys chief executive Anne Keatley-Clarke pointed
out that the views of people with aphasia were excluded
from a national user survey as the interviewers didnt know
how to communicate with them. She hopes the Patients
Passport will allow an alternative means of communication
with benefits including better informed consent, counselling
and advice. Lizzy Marks believes that, the communication
passport will be invaluable for ensuring that clients attending
medical or social appointments can have their needs met by
professionals. Any therapists wishing to take part in the
consultation on the Patients Passport (for anyone with a
communication difficulty, not just aphasia) can request a
sample passport to trial with clients and then offer feedback
by the end of August. E-mail speakability@speakability.org, or
fax 0207 928 9542 with your details. A follow-up workshop
will take place in central London in September to review the
consultation and consider the next steps.