Journal of Psychiatric and Mental Health Nursing, 2009, 16, 501507

A decade of stigma and discrimination in mental health: plus a change, plus cest la mme chose (the more things change, the more they stay the same)
C . LY O N S 1 p h d m s c p g c e r t r n t d p s n r m n t e a c h e r s c e r t , P. H O P L E Y 2 m s c b s c r m n & J. HORROCKS3 rmn rgn bsc (hons) in nursing studies pg cert Senior Research Fellow, School of Nursing and Caring Sciences, Faculty of Health, University of Central Lancashire, Preston, 2Mental Health Programme Manager for Lancashire, and 3Director of Mental Health Strategic Development for Lancashire, Lancashire Mental Health and Social Care Partnership Team, NHS East Lancashire, Nelson, Lancashire, UK
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Correspondence: C. Lyons School of Nursing and Caring Sciences Faculty of Health University of Central Lancashire Victoria Street Preston PR1 2HE UK E-mail: drchristina1@btinternet.com
doi: 10.1111/j.1365-2850.2009.01390.x

LYONS C., HOPLEY P. & HORROCKS J. (2009) Journal of Psychiatric and Mental Health Nursing 16, 501507 A decade of stigma and discrimination in mental health: plus a change, plus cest la mme chose (the more things change, the more they stay the same) In recent years, efforts to combat stigma and discrimination experienced by mental health service users have ranged from small local initiatives to national and international campaigns. Success has been mixed, with signicant, lasting benets appearing to be elusive. This paper explores the current nature and extent of stigma and discrimination in an area of the north of England and compares ndings with those from a study undertaken a decade previously in 1997. Qualitative responses to a postal questionnaire received in 2007 were thematically analysed and compared and contrasted with ndings from the 1997 study. Four broad categories of discrimination (1) employment; (2) professional; (3) communities; and (4) family and friends arose from the 2007 data, the most common being discrimination in employment. There were close similarities in both sets of data. Stigma and discrimination remain largely as strong, damaging and enduring as they were a decade ago. A range of pre-emptive interventions that support people prior to the escalation of mental health crises could limit the impact of stigma. Keywords: discrimination, employment, mental health, qualitative, stigma
Accepted for publication: 11 December 2008

Introduction
The impact of stigma and discrimination associated with a psychiatric history is well documented in the literature (e.g. Markowitz 1998, Thornicroft et al. 2008). In this sense, a psychiatric history is initiated when a formal medical diagnosis of mental illness is attributed to an individual. In recent years, efforts to combat stigma have ranged from small local initiatives to national and international campaigns. For example, in 1996 the World Psychiatric Association embarked on its campaign to
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address the stigma and discrimination associated with schizophrenia. In 1998, the Royal College of Psychiatrist (UK) launched its 5-year campaign, Changing Minds, to increase the publics understanding and to reduce the stigma of mental illness. At its conclusion, Crisp et al. (2005) conducted a survey that revealed only small, probably insignicant positive changes in public attitudes. In Scotland, in 2001, the see me initiative set out to challenge stigma by introducing a well-funded, comprehensive and sustained programme which not only targeted the
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general public but also targeted particularly the Scottish media. By 2004, a 57% reduction in the use of derogatory terms by the media was evidenced in the Scottish Executives survey of public attitudes. For all of these efforts, to date success has been mixed, often affected by social and political events or changes with signicant lasting benets appearing to be elusive (Matorin 2002, Green et al. 2003). More recently, in 2006, the national charity Rethink launched its anti-stigma campaign, and the Department of Health began its initiative, Action on stigma promoting mental health, ending discrimination at work. By 2007, the biggest ever campaign in England entitled Moving People and supported by 18 million of lottery funding was embarked upon. This campaign has brought together a number of large, national mental health charities and the Institute of Psychiatry with an aim to reach 30 million people through TV advertisements, training and legal challenges to discriminatory practices. Luty et al. (2007) point out that providing information alone appears to be ineffective, suggesting that these multifaceted approaches may have more chance of success. It remains to be seen what impact these more recent campaigns will have on both those who experience mental health problems and the general public. Instruments have been developed to quantify the stigmatizing experiences of people with mental health problems (Ritsher et al. 2003, Ritsher & Phelan 2004, King et al. 2007). These are important for measuring the effects of and informing the development of anti-stigma initiatives. However, it was not the intention of this study to quantify experiences in the same way, but to gather information from a large number of respondents to provide a more in-depth understanding of everyday social encounters. The aim of this paper is to understand the current nature and extent of stigma and discrimination in an area of the north of England and to note any changes in the last decade. This paper arose from a need to involve patients and the public in the development of new mental health services across the north of England. This complies with a statutory duty detailed in the Section 242 of the National Health Service Act 2006 and forms part of local National Health Service arrangements1 to involve and consult with patients and local populations. Part of this work was to seek views from the public, including mental health service users and carers, on how services might help people stay mentally healthy and improve well-being. Stigma and discrimination have the potential to have a huge negative impact on
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peoples lives and general well-being, so it was necessary to understand the current local situation (TNS 2007). Over a decade ago, following the closure of many large psychiatric hospital beds, a local study was undertaken. This was a small-scale, in-depth study of the social realities of people living in the community with long-term mental health problems (Lyons 1997). A major nding of this study was that the strong and damaging impact of stigma pervaded most aspects of everyday life. The constant barrage of discrimination impacted on the unremarkable aspects of daily life such as relationships within families and work colleagues, doing the weekly shopping or socializing in the local pub. This had the effect of grinding down an individuals condence and contributing to self-initiated social exclusion. This paper reports on the ndings of a recent local survey and makes comparisons with the 1997 study.

Methods
As part of a wider initiative to understand mental health and well-being issues, questionnaires were sent out to the 314 organizations that were on the Primary Care Trusts database. Questionnaires were also sent out to 379 individuals who, following a public consultation in 2006 and other related community engagement activities, had expressed an interest in staying involved with mental health service developments in the future. Additionally, the questionnaire was sent out to the seven council voluntary sector organizations, the public and patient involvement lead in the specialist mental health trust and the lead in a specically constituted mental health umbrella public and patient involvement initiative for further distribution. A request was also sent to local community mental health teams and sixth form colleges to distribute to relevant contacts in their own organizations. Postal questionnaires (with a freepost return envelopes) were used because they were regarded as the most efcient means of reaching a large number of stakeholders (Parahoo 1997). Respondents were also given the option of completing the questionnaire over the telephone or by email. The questionnaire was designed to seek participants views drawn from their personal experience. Respondents were asked to comment on their rst-hand experiences and respond to the question:
Have you experienced discrimination because of a mental health problem? Please give one example.

These comply with Primary Care Trusts legal duties such as those that arise under the Human Rights Act, the Data Protection Act, the Freedom of Information Act and laws against discrimination and defamation.

Data comprised qualitative responses extracted from questionnaires and details of respondents. A descriptive analysis of respondent details was undertaken. The raw qualitative data were initially scrutinized independently by each of the authors. The data were managed and analysed
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by the authors using a cyclical, reective process (Carter 2004). This cyclical and dynamic approach meant that analysis was interactive and reexive with periods of immersion in the data, periods of reection and then a return to the data for further coding based on new ideas. Individual interpretations of the data were subsequently coordinated, identifying and summarizing areas of similarity, difference and any other points of note. Team discussions followed to examine the concepts, codes and themes, facilitating questioning of the analysis. Thematic analysis was selected as the approach broadly draws codes into groups, groups into sub themes and the sub themes into themes (Carter 2004) that reected participants responses. Following the dynamic cyclical process of coding, a consensus was arrived at and a list of themes was collated, and at this point data could be allocated to four broad categories of discrimination: employment; professional; communities; family and friends. Using these categories as a framework, a detailed account of each theme was then constructed from the data. These accounts were reviewed by all authors. The aim of the analysis was to produce an overview of individual experiences. In pursuing this attention was paid to achieving a balance between the individual experiences expressed and general trends.

providing services to people with mental health problems (n = 6), or they did not specify who they were. The accounts of 123 respondents (58.5%) who experienced direct discrimination and some examples of observed discrimination are reported below. Accounts of observed discrimination are important because to some extent they counter concerns that service users perceptions can be too strongly inuenced by their mental health problems.

Discrimination categories
The most common form of discrimination reported that which arose from respondents employment reports), closely followed by encounters with health social care professionals (26 reports), communities reports) and lastly family and friends (six reports). was (30 and (17

Employment
Issues related to: (1) gaining employment in the rst place; (2) attitudes and behaviours of colleagues and superiors; and (3) returning to work following an episode of mental illness. Revealing a mental health problem at the application or interview stages of seeking employment seems to create difculties in securing employment. One example from these data cited a service user as being unsuccessful at 25 interviews. Other examples reported by service users, which were the inappropriate questions relating to their illness, such as, how they would control their behaviour if challenged by work colleagues, were often asked during job interviews. There appears to be a dilemma whether to openly declare the mental health problem or to avoid mentioning it. For example, one respondent reported being advised not to declare her mental health problem on the application form. Another respondent stated that the law society requires him to declare mental illness on all job applications. Gaps because of periods of poor mental health in curricula vitae were cited as problematic. One respondent had developed strategies for overcoming some of the discriminations he experienced on applying for jobs:
I am always careful of how I describe my health problems if I am going to an interview or meeting new people. Depression has become more socially acceptable, so, I often use that label.

Findings
Details of respondents
Service users have made up 47.6% of the respondents, and this can be further broken down into those who use primary care mental health services (14.3%) or specialist secondary care services (33.3%). Carers made up 21.4% of responses and workers/other made up the remaining 1813% of respondents did not answer this question. In response to the question, 74 of 210 respondents stated that they had not experienced discrimination; 29 of these described themselves as service users. Two of these service users were still in hospital at the time they completed the questionnaire, and nine were service users receiving primary care mental health services. Thirteen respondents reported that although they themselves had not experienced discrimination themselves, a family member had. One respondent reported not experiencing discrimination because of her particular circumstances. In this case, it was not a problem because she was retired. Other respondents who stated that they had not experienced discrimination were carers (n = 14) or workers
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Interestingly, one respondent experienced difculties in securing employment as a mental health professional because of her history of eating disorder. The rationale offered for this was:
Those suffering with eating disorders never really get better. 503

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Experiencing a mental health problem while in employment can be extremely distressing. These data reveal examples of being ridiculed and bullied at work by both colleagues and superiors, being talked about and colleagues behaviour changing after a mental health problem has been revealed:
I told a friend, in condence, that I was having problems with my mental health and going to X hospital. Very soon everyone in the factory knew about my poor mental health and everybody treated me differently.

was nothing wrong with my chest, that I was hyperventilating and to go and breathe into a brown paper bag which would calm me down. It turned out that I had a severe chest infection requiring antibiotics.

Another respondent had taken steps to keep her mental health problems secret:
I am unable to discuss this or reveal this in the workplace. The stigma is still very alive and active.

One respondent, while ill with depression, was told that she would be red from her job because she could not provide a denite return date. Another described her employer as completely unsupportive when she was experiencing postnatal depression. Returning to work was also reported as a problem. One respondent lost his job 25 years ago and was unable to return in spite of medical advice maintaining that he was t. One respondent was pressured to retire early, although another was going through an appeals process after losing his job because of schizophrenia. Another respondent reported that when she returned to work following a period of depression, she had been moved to another department and down graded. When she sought an explanation, the reason offered was that it was considered that because of her period of illness she was seen as no longer reliable enough for her previous position and workload. The effect of mental health problems on employment was not conned to service users. One respondent maintained that the practical implications of being a carer curtailed his ability to compete for promotion and at times threatened his employment altogether.

Another respondent reported being told by her gynaecologist that her problems were all in your mind. There were mixed reports relating to GP services. For example, one respondent reported that her depression was interpreted as a physical problem or anxiety. Another respondent reported attending a GP appointment because of severe back pain. He was told that this was a psychosomatic and due to his depression; weeks later, a slipped disc was diagnosed. Another respondent stated that his GP did not seem to be able to recognize the difference between physical and mental health problems. A carer reported a GP describing schizophrenics as a nuisance, time wasting and expensive when he tried to register his son as a new patient at the practice. These data reveal what appears to be a widespread lack of respect and poor care generally. This was manifested as: (1) not being listened to; (2) questions being directed at the person accompanying the patient or service user; (3) being videoed while unwell and without consent; and (4) one report of physical abuse. It appears that mental health services do not escape criticism. A service user attending a community mental health team review reported being treated with disrespect by reception staff. A carer stated that she and her husband were treated with total disrespect and made to feel blame because their son had a diagnosis of schizophrenia.

Communities
Discrimination experienced within communities was widely reported (17 reports). This ranged from avoidance, e.g. people crossing the street so that they did not have to acknowledge the person; being called names such as nutter, psycho or retard; being made fun of to being banned from certain shops and being refused service in pubs. One respondent described being stopped in a town centre store because he looked suspicious and the police being summoned. Another respondent observed:
. . . people in shops being treated badly, being laughed at while in the shop, then after leaving, people coming out with remarks like people like that should be locked up away from normal people.

Professionals
There were 27 reports of discrimination from health and social care staff and staff from other organizations such as housing and education. Health and social care staff were both from mental health areas and from social care areas, as well as other generic services such as general practitioners (GPs), hospital consultants, social workers, accident and emergency staff. One issue of concern that was raised on a number of occasions was that of physical problems being overlooked. For example, one respondent reported:
I went to the doctors recently with a very bad chest infection. The doctor read the notes and told me there 504

It appears from these data that everyday social encounters have the potential to be emotionally painful and just leaving home can be emotionally hazardous and damaging to self-esteem. There is one report of being insulted by strangers. Two respondents used the word stupid:
People called me stupid;
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Sometimes when people nd out I have a mental health problem they either walk away or start treating me like Im stupid.

Comparisons with 1997 data

The 1997 study used a case study approach that facilitated the collection of in-depth qualitative data rather than survey data. However, the major themes related to stigma and discrimination remain constant (see Table 1). The 1997 data provided intimate insights into participants lives, but the 2007 and 2008 data reached a much larger number of people yet still yielded rich qualitative data that are largely similar to the 1997 data. Cross comparisons across both sets of data can be made. In terms of family and friends, mental health problems, particularly if these involved hospital admission, have been cited as contributing to divorce. The 1997 study provided an example of a young woman whose postnatal breakdown was left untreated and subsequently escalated. This resulted in the eventual breakdown of her marriage, desertion by friends and limited access to her children. Stigma can be felt by the whole family, shame and guilt shared by all members. For example, in the 1997 study the issue of Bad Blood was raised by a carer who had concerns about his other children and their marriage prospects. The 1997 study provided examples of a whole range of social sanctions used by communities to exclude those identied as having mental health problems. These ranged from passive exclusion to verbal and physical aggression,

These everyday social encounters are likely to have an accumulative effect so that an individual feels, as reported in these data, an outsider and being inferior. One respondent articulated this as: Discrimination is something one faces daily and as a matter of routine.

Family and friends

There were only six reports of discrimination from family and friends, suggesting that these networks are generally supportive and that this form of discrimination is experienced less than others. However, the examples cited offer insights into the devastating effects that discrimination from families and close friends can have on individuals. The effects ranged from hiding the problem from others and friends and relatives withdrawing to a safe distance, to divorce and marginalization. For example, one respondent stated that her husband divorced her because of her mental health problem and that friends and family did not understand her. Another respondent reported that he was the only family member not invited to a family celebration and that his brother had told him that if he was not his brother, he would have nothing to do with him.

Table 1 Comparison of examples from data pre-2007/2008 2007/2008 examples Family and friends Divorce 1997 examples Divorce and child custody issues Comment Divorce can occur regardless of mental health problems but these respondents attributed the cause to their mental health problems

Exclusion from family celebrations Communities Taunted and called derogatory names

Fear of whole family being ostracized because of Bad Blood Verbal aggression and use of words such as nutter Many examples in 1997 data Reports of physical abuse, as well as a general lack of care and not being listened to Examples of all these in 1997 data 1997 data also have examples of physical aggression such as being physically removed from pubs Used as a social sanction to maintain social exclusion Increased concern about not being listened to and physical problems being overlooked No apparent change to workplace conditions for people with mental health problems

Use of ridicule and being talked about behind your back Professional General lack of respect and physical problems being overlooked Problems with getting a job or getting a job commensurate with qualications, explaining periods of unemployment because of mental health problems and maintaining employment after a period of sick leave Negative attitudes of work colleagues wide use of ridicule, verbal aggression and social exclusion

Employment

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as well as particularly ridicule. A participant described how persons with mental health problems were only allowed access to the local pub at certain times and how a range of tactics, such as ridicule and verbal aggression, were used by other customers to enforce this. This has parallels with reports of peoples experiences in shops found in the 2007/ 2008 data. There appears to have been a change over the 10-year period in reports of professionals attitudes. There seems to have been a shift from reports of examples of overt abuse in 1997 to examples in 2007/2008 of professionals being dismissive and passively neglecting a persons needs. The 1997 study provided reports of being cruelly treated and ridiculed while in hospital, as well as not being listened to and generally disempowered by professionals. One participant cited being head locked by a member of staff for whistling, while the young mother stated that her psychiatrist hardly consulted her and decisions about her treatment were made between the psychiatrist and her husband. The 2007/2008 data suggest that people have most difculty accessing services and being listened to by professionals, particularly when presenting with a physical problem. There are close similarities in both sets of data relating to employment. Apart from issues relating to getting a job, a major problem for 2007/2008 respondents and 1997 participants was how they were treated when they returned to work following a period of sick leave. In both sets of data, there are examples of employment being terminated, negative attitudes and behaviours of work colleagues and managers, taunting, ridicule and being talked about. There were also reports in both sets of data of people being unable to obtain jobs commensurate with their qualications. For example, a 1997 participant could only get a job as a gardener even though he was a graduate with teaching experience. A similar situation was reported in the 2007/ 2008 data. A woman with a master degree could only secure shop work. It is possible that some accounts, particularly those of physical abuse, may have been distorted by some individuals because of their mental health problems. For example, people who experience paranoid symptoms often feel persecuted and discriminated against. Although some circumspection may be warranted, the purpose of this paper was to present respondents subjective accounts as perceived by them.

Discussion
It appears that over the last decade there has been very little change in the way stigma and discrimination are experienced by people with mental health problems. There seems to have been a shift in how professionals are perceived.
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Negative encounters are now more likely to be reported in terms of dismissive behaviours rather than overt abuse. This may be due to the fact that in 2007/2008 more people with mental health problems are treated outside of hospital but this remains unclear from the 2007/2008 data. However, experiences, involving family and friends and members of the general public, relating to communities and employment, appear to be as devastating as they were a decade ago. This appears to be regardless of public education and advertising campaigns. This raises the question of why the stigma of a psychiatric history should be so intractable. Coulter (1973) argues that a psychiatric history is often acquired following a formal medical or psychiatric diagnosis; psychiatrists are often societys nal arbiters in identifying and ratifying a person as insane. Once this occurs, the individual is stigmatized by the diagnosis, and thus their social identity is recreated in the context of the disorder (Goffman 1968, 1971). An illustrative example from these data is the experience of people returning to work following a period of sick leave because of a mental health problem. Both work colleagues and managers treated them differently than before the absence from work. A diagnosis of severe mental illness, such as schizophrenia, could be regarded as a critical incident in the development of the individual, leading to what Strauss (1977) refers to as a turning point. At a turning point brought about by such a diagnosis, Strauss goes on to argue that a conceptual shift takes place that precipitates new evaluations of and by self and others. At this point, a transformation of identity takes place and may become irreversible. In effect, an individual with a psychiatric history acquires another identity and may consequently become estranged from his own family and his community. These data provide examples of relationship breakdown, exclusion from family events and overt discrimination within communities. However, there is also some evidence that a diagnosis of depression may be viewed as less stigmatizing, being used, e.g. as a blanket term by one respondent to avoid the effects of negative attitudes and behaviours. It is likely that with a changed identity an individual will put out social cues such as nervousness or even fear which can, in turn, alienate others, perpetuating a self-fullling prophecy of discrimination (Merton 1968, Woodward 1997). It is difcult imagine given the examples from these data, such as verbal abuse in shops, how else anyone might react. Politically correct expressions of behaviour and attitudes towards people who have mental health problems are often shaped by notions of sympathy, understanding and care. Although many individuals may ascribe to this stance, others may harbour deep seated prejudices which are often subtle and covert (Goffman 1968). This is clearly illustrated
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by the behaviour of some professionals cited in these data, particularly in relation to treatment for physical problems. Certain groups in society, such as those who have mental health problems, have always evoked prejudices and perceptions of inferiority, exposing them to inferior treatment and consideration including physical abuse, ridicule and nancial exploitation (Torrey 1985, Scull 1989, Dickenson 1990). Both the 1997 and 2007/2008 data expose these aspects of human nature, but do not provide reasons why, given education and media campaigns, the situation has not improved. Decades of research indicate that negative perceptions of people with mental health problems prevail regardless of government policy; stigma is as pervasive as ever (Bhugra 1989, Huxley 1993, Ingamells et al. 1996, Thornicroft et al. 2008).

Conclusions
The stigma of a psychiatric history and diagnosis for many who participated in this study remains as strong and damaging as it was for people over a decade ago. It may be that the numbers of people who attract discrimination arising from stigma could be reduced by helping to prevent a change of identity. One strategy could be to offer a range of preemptive interventions such as services that support people prior to the escalation of crises, exible respite services and investment in mental health and well-being. National anti-stigma and social marketing campaigns could focus on keeping people mentally and physically healthy through lifestyle choices, e.g. targeting drugs and alcohol use. It is unclear how social marketing itself could end stigma. The impact of stigma could possibly be reduced if more people are able to access timely effective treatment such as talking therapies, and they are able to fully recover rather than just have their symptoms alleviated by medication.

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