Understanding Psychosis and Schizophrenia? What About Black People?

Philip Thomas, MD
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In many respects it is difficult to fault the report Understanding Psychosis and Schizophrenia, recently published by the British Psychological Society (BPS) and the Division of Clinical Psychology (DCP); indeed, there is much to admire in it. Whilst not overtly attacking biomedical interpretations of psychosis, it rightly draws attention to the limitations and problems of this model, and points instead to the importance of contexts of adversity, oppression and abuse in understanding psychosis. It also highlights the value of psychological interventions, and in particular, it proposes that people should be offered the opportunity to talk about their experiences in order to make sense of them. Mental health professionals should not impose a particular model or system of understanding on people who experience psychosis, such as their experiences are ‘symptoms’ of mental illness requiring medication.

It is impossible not to agree with this, and it would appear to be churlish or mealy-mouthed to pick holes in such a finely woven fabric. But before getting carried away with eulogy it is worth noting that the colour of this fabric is white, for the most part dazzlingly so. In the rainbow, multi-hued society that is Britain today. This is a glaring omission.

The report makes only scant, fleeting references to the role of cultural differences and the complex relationships that are apparent between such differences and individual experiences of psychosis, whether these relationships are for good or ill. For example, it points out that in Britain, people from African-Caribbean communities are much more likely to receive a diagnosis of schizophrenia than people from white communities, presumably because of ‘…social deprivation and disadvantage…’ (page 45). The racism that provides the daily backdrop to the lived experience of people from non-white (and some white, for example Irish and Eastern European) communities is referred to briefly on page 47, as one of several factors alongside bullying and abuse that makes paranoia understandable. But after this, racism sinks without trace in the rest of the report. There is a brief paragraph on culture on page 14, which draws attention to its importance in providing a context within which people from different traditions talk about their experiences, for example, in spiritual terms, but again, this matter too sinks without trace. Why are these omissions so serious in a report of this nature?

The last sixty years have witnessed the accumulation of a vast body of evidence indicating that people from non-Western traditions have very different experiences of and outcomes from their involvement with mental health services. This is an area too large to be given justice in the confines of a blog, but there are several excellent reviews and overviews of the problem . Early studies carried out in the 1960s in London, Birmingham, Nottingham and Manchester, all cities with growing black communities, found that black people had rates of schizophrenia between 2.5 to 14.6 times higher than the white community (see 4 for an excellent overview of these early studies). A more recent study carried out in London, Nottingham and Bristol  found higher rates for schizophrenic and manic psychoses in African-Caribbean people, and black African men and women compared with white groups. The rates of schizophrenia were 9.1 times higher in African-Caribbean people, and 5.8 times higher in black African people.

Not surprisingly these apparently higher rates of ‘schizophrenia’ are associated with a greater likelihood that Black people will  receive physical, as opposed to psychological or ‘talking’ therapies. They are also much more likely to receive physical treatments coercively, as involuntary patients in secure and forensic units (see, for example, ). One interpretation of these figures in the light of the submerged racist beliefs that white people have held historically about black people, is that their feelings and emotions are less refined and cruder than those of white people, because they are less intelligent. Consequently they are much more likely to require coercive physical treatments. The corollary holds of course; that being less intelligent they are less likely to benefit from psychological or talking therapies.

In any case, there is good evidence that black people’s personal experiences of day-to-day racism is linked to psychosis. Karlsen et al examined the impact of racism on the mental health of different ethnic groups in England. They used data from a follow-up survey of a sample of people drawn from minority ethnic communities who had participated in the 1999 Health for England study, together with a white English sample. The minority community sample included 793 Irish, 691 Caribbean, 650 Bangladeshi, 648 Indian, and 724 Pakistani people. In addition to questions about experiences of racism, they also asked subjects if they had ever been refused a job or treated unfairly at work on grounds of race, colour, ethnicity or religion. Mental health was assessed on the basis of subjects’ risks for developing significant anxiety or depression (i.e., becoming a clinical ‘case’) in the previous week, using a clinical interview schedule that gave ICD-10 diagnoses. In addition, they made estimates of the annual prevalence of psychosis in the sample using a psychosis screening questionnaire.

African-Caribbean people were most likely to report racial harassment, followed by Pakistanis and Indians. The risk of psychosis was significantly associated with the experience of verbal racial abuse, physical assaults and work-place discrimination. Experiences of racial abuse (verbal or physical) doubled the risk of psychosis compared with those who had no such experiences. Work-place discrimination was also associated with an increased risk of psychosis, although this was not statistically significant. These relationships were independent of age, gender, occupational and employment status.

In a community study of over 5,600 people in Holland, Janssen et al found the rate of delusional beliefs in people who reported at least one instance of racial discrimination (0.9%) was nearly twice as high as the rate in those who reported none. In addition, 2.7 per cent of those who experienced discrimination in more than one domain showed evidence of delusional beliefs (but not hallucinations). These differences were statistically significant even when other demographic factors were taken into account. These results indicated that ‘… perceived discrimination predicts, in a dose-response fashion, incident delusional ideation’ (Janssen et al: 73).

It is important to be absolutely clear that I am not accusing the authors of deliberately ignoring the importance of black perspectives in their report. Rather, the way in which the report was carried out, the sort of evidence that was adduced, the sources of that evidence, who was involved in decisions about where to search and whose testimonies mattered, meant that it was inevitably flawed from the outset by virtue of the fact that very few, if any, people from black backgrounds were involved in it. I know most of the contributors to the report, and unless I am mistaken, it is clear that not one of them can be described as coming from a non-Western cultural tradition. The report is sprinkled with quotes from survivors / service users about their experiences of psychosis and the help they have received, but again the great majority of these are, as far as I can see, white voices. No reference is made to well-designed studies that have sought out Black people’s experiences of distress and mental health services .

Jayasree Kalathil , the lead author of one of the most recent research reports that deals specifically with the experiences of black women, argues  that in terms of social justice, equity and fairness, the report is seriously flawed. In her perceptive account of the launch event, which she attended, she points out that it is simply not possible to uphold the claims that the report is a ‘ground-breaking’ departure that marks a paradigm shift in mental health theory and practice. It may be a paradigm shift but it is one that is of little or no relevance to 14% of the British population. Jayasree writes as follows:

The most obvious of this [problem], to me, was the conspicuous absence of professionals and user/survivors from racialised (BME) communities in the working party and in the invited audience (there were a handful in the audience), and any meaningful engagement with the over 50 years of scholarship about ‘race’/ethnicity and psychiatry – especially around the theorisation and experience of schizophrenia – in the report.

She goes on to question whether the practice of clinical psychology and therapy are just as badly affected by flawed thinking about psychosis as are biomedical diagnoses and practices.

This is sadly ironic given that some of the clinical psychology contributors to the report have written scathingly, and with good reason, about the failure of biomedical psychiatry and psychiatric diagnosis to engage with the contexts of people’s lives.

There is a strong case to be made for the view that if we place the individual’s cultural heritage and identity at the centre of our attempts to help people who experience psychosis and distress, then we will end up with systems of help and support that are fair and equitable for all people, not just the 86% white majority. Doubtless, many will interpret what I have written here as unwarranted criticism of what is undeniably an otherwise excellent report, but the matter of race and culture is vital because the true mark of a democracy is the extent to which it engages positively with its minority groups.

The report comes at a particularly important moment in British culture. Next year we face a general election in which cultural identity is at the heart of a political debate driven by the gold and purple favours of a resurgent, sanitised, political right. Against that context it is especially sad that the BPS/DCP report fails to engage positively with cultural difference in relation to mental health. Perhaps it can go some way to rectifying this by  commissioning a report on ‘Race’ and Culture in the diagnosis of ‘psychosis and ‘schizophrenia’, and the impact of these diagnoses on black people, as well as the help and support they are offered?

References

1. British Psychological Society/Division of Clinical Psychology (2014) Understanding Psychosis and Schizophrenia accessed on 3rd December 2014

2. Bhui, K. & Bhugra, D. (2002) Mental illness in Black and Asian ethnic minorities: Pathways to care and outcome. Advances in Psychiatric Treatment, 8, 26–33.

3. Fernando, S. (1991) Mental Health, Race and Culture. Basingstoke/London: Macmillan/MIND Publications.

4. Sashidharan, S. (1993) Afro-Caribbeans and schizophrenia: The ethnic vulnerability hypothesis re-examined. International Review of Psychiatry, 5, 129–44.

5. Fearon, P., Kirkbride, J., Morgan, C., Dazzan, P., Morgan, K., Lloyd, T. et al (2006) Incidence of schizophrenia and other psychoses in ethnic minority groups: Results from the MRC AESOP Study. Psychological Medicine, 36, 1541–50. doi: 10.1017/S0033291706008774.

6. Davies, S., Thornicroft, G., Lease, M. et al (1996) Ethnic differences in the risk of compulsory psychiatric admission among representative cases of psychosis in London. British Medical Journal, 312, 533–7.

7. Coid, J., Kahtan, N., Gault, S. et al (2000) Ethnic differences in admissions to secure forensic psychiatry services. British Journal of Psychiatry, 177, 241–7.

8. Bhui, K., Brown, R., Hardie. T. et al (1998) African-Caribbean men remanded to Brixton prison. British Journal of Psychiatry, 172, 337–44.

9. Thomas, P. (2014) Psychiatry in Context: Experience, Meaning and Communities. PCCS Books, Ross-on-Wye (see especially Chapter 6, pp 95 –  116)

10. Karlsen, S., Nazroo, J., McKenzie, K., Bhui, K. & Weich, S. (2005) Racism, psychosis and common mental disorder among ethnic minority groups in England. Psychological Medicine, 35, 1795–803. doi: 10.1017/S0033291705005830.

11. Janssen, I., Hanssen, M., Bak, R., Bijl, V, De Graaf, R., Vollebergh, W. et al (2003) Discrimination and delusional ideation. British Journal of Psychiatry, 182, 71–6.

12. SCMH (2002) Breaking the Circles of Fear: A review of the relationship between mental health services and African and Caribbean communities. London: Sainsbury Centre for Mental Health.

13. Walls, P. & Sashidharan, S. (2003) Real Voices – Survey findings from a series of community consultation events involving black and minority ethnic groups in England. London: Department of Health.

14. Kalathil, J., Collier, B., Bhakta, R., Daniel, O., Joseph, D. & Trivedi, P. (2011) Recovery and Resilience: African, African-Caribbean and South Asian women’s narratives of recovery from mental distress. London: Mental Health Foundation.

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22 COMMENTS

  1. Thanks Philip for bringing up these critical issues!

    One sentence in your post was that ” It may be a paradigm shift but it is one that is of little or no relevance to 14% of the British population. ” I think I would argue though for a more nuanced view. The “Understanding Psychosis” report supported a paradigm shift toward taking into account people’s actual lives, their experiences of adversity, and did identify that cultural and spiritual issues can be important, without going into detail. Just taking that perspective is a very relevant step toward better mental health care for cultural minorities, even though it is also correct to argue that it won’t really make much of a difference unless we also take the next step and try to understand in detail what those actual issues are for specific cultural minorities, how they play out, how mental health workers can best help, etc.

    • I agree that identifying culture and spiritual issues as important is a key step. However, these issues are important for everyone, not just for minority groups. I am not sure how attending to these issues becomes “a very relevant step toward better mental health care for cultural minorities” alone. The issues Phil Thomas raises in his article point to a very real and embedded ‘wrong’ in our mental health care systems. First, there is a problem in re-articulating racialised communities as “cultural minorities”. Second, diagnosis – especially of schizophrenia and psychosis – is experienced as ‘racialised pathology’ by many black people in the UK (it is also true in other contexts such as the US). A more nuanced view is indeed needed and the report would have been able to do this if it had engaged with the vast literature that Phil points to which discusses these issues in much depth. To my mind, the marginalisation of black communities and the scholarship dealing with the issues affecting them in this report is indicative of a very real and embedded ‘wrong’ in academia and knowledge production itself.

    • I have not read Mary Boyle’s book which interrogates the validity of the schizophrenic diagnosis, but I think this article begs the following question. If racial oppression contributes to this “disease.” why does the black community in America have a lower rate of suicide, which psychiatrists attribute to the disease of depression.

  2. Thanks Phil,

    You’ve really made excellent comment on an important report. For me power is at the heart of “psychosis” and much is summed up in your sentence below.

    “There is a strong case to be made for the view that if we place the individual’s cultural heritage and identity at the centre of our attempts to help people who experience psychosis and distress, then we will end up with systems of help and support that are fair and equitable for all people, not just the 86% white majority.”

  3. I completely agree with you, Ron, about the value of the report in terms of paradigm shifts. However, the fact that there was no black survivor / mental health professional black people input means that yet again, black people’s voices are marginalised and excluded, and invalidating the report as far as 14% of the population of UK is concerned. The only way round this is for the BPS to withdraw this report, and start again with black input from the outset.

    • That is a very challanging comment. I will have to think about that one.

      What about class interests or the LGBT community? Do these also deserve a voice in this report?

      I ask because class and LGBT discrimination are intimately tied into mental distress. Also, I am involved in other kinds of campaigning and the dominance of the white middle class in campaigns that claim to be about social justice is something I am growing more aware of

      • Thanks John. The difficulty with this is that members of Britain’s BME communities are in any case disproportionately represented in working class / economically disadvantaged sectors of our communities. They have all the attendant struggles that that brings, but in addition they also have to cope with racism from white people, rich and poor., working class and middle class, whatever these terms mean these days (and I suspect their meaning are quite different from a generation or two ago).

        • You think these problems are linked to the socioeconomical status and individual’s status in society more than they are linked to race per se and the racism’s contribution is just a part of the vicious cycle that keeps certain sectors of the population down in the lower class?
          Are there any studies that link the UK’s class system to psychosis?

      • Speaking of social class and social movements: Here is how things get turned around back hear in Appalachia: It seems that the rural whites in West Virginia have not gotten on board with Brand Obama. This is termed by the “liberal Charleston Gazette, as people who are voting against their interests, since it is axiomatic that the Democratic Party does reflect their class interests. The fact that both major parties coalesce around a common political and economic and political agenda that includes a continuation of the warfare economy, corporate friendly trade deals like TPP, and a militarization of the border gets lost in the shuffle. By the way, only Minnesota-The home of Vice President Mondale- and Washington D.C. had a higher voter turnout for Carter in 1980, than did West Virginia. The Democrat Party has even shelved their symbolic support for the Union Movement. Obama flew over Wisconsin with his one tweet of support for the efforts there for collective bargaining rights. Also he was too engaged with violating international law over the murky accusations of chemical warfare in Syria to attend the AFL-CIO convention which saw the labor and environmental movements reach out to each other. But hey, its all the hillbillies fault for voting against their interests.

    • I fail to see how withdrawing a report that will be quite helpful to at least some people could be the right thing to do at this point. It seems that an alternative solution would be to revise it to include up front an apology for not including or linking to very much on the cultural front, and then aiming for producing another report that would include the elements you are talking about.

      As for what may have caused the failure to be sufficiently broad, the failure to address issues of cultural diversity etc. in the first place: I think it’s common in all kinds of social justice movements for initial steps to be taken by people who may be more privileged in some way (like middle or upper class woman banding together to support women’s rights) – initially just organizing at all is so overwhelming that issues of broadening the discussion to include more cultural/class etc. perspectives gets neglected, and only comes later. Obviously, we need to move along toward that broader approach, but I think we are better off doing that with the angle of “expanding” the report and the movement, rather than getting caught up in attacking it or various pioneers for not having been broad enough at the beginning.

    • Stokeley Carmichael’s term institutional racism come to mind, Darby, something that permeates British society despite the best efforts of equalities legislation and the Equalities and Human Rights Commission. The difficulty is we have no way of knowing what discussions took place in the BPS, and to what ends. This is why they should hold a fully transparent inquiry into what went on.

  5. I agree the absence of any kind of analysis of race, ethnicity, and experience of prejudice is a glaring absence from the report and analysis, and I really appreciate you bringing that issue forward. I don’t think it’s necessary to throw out the baby with the bathwater, however. The report makes a big emphasis on building from the personal experiential viewpoint of the person seeking help. I see no reason why racial/ethnic identity, sexual orientation/identity, immigrant status, historical group trauma, and social prejudice can’t become an integral part of the model. Perhaps rather than withdrawing this report, which is very timely in a lot of ways, an amended report can be written that incorporates these issues into what seems a very sound framework of focus on individual needs rather than the pathologization of normal reactions to adverse social and personal circumstances.

    — Steve

  6. Thank you for endorsing the broad messages of this report. It is not perfect, and although it has been widely welcomed we are happy to receive feedback about how it could be improved.
    We accept the criticism about the failure adequately to address the perspectives of black and minority ethnic people in the development and content of the report. We are aware that there are ongoing discussions within the DCP/BPS about the kinds of structural changes necessary to avoid such problems in the future.
    However, we are concerned that your comment may create the impression that these issues were not addressed at all. For example, the report has a section on the experience of ‘psychosis’ in ethnic minorities and non-Western cultures; discusses supernatural, religious and spiritual explanations at several points; discusses the role of discrimination and social deprivation in prevalence rates of ‘psychosis’ in migrant and minority ethnic groups; and calls for preventative action to tackle racial discrimination and oppression.
    The report is intended to be supplemented by a website, which will give us the opportunity for collaborative exploration in greater depth of the aspects you have highlighted, via video clips, personal testimonies, signposting to other resources, and so on. We are also planning a document on ‘psychosis’ in BME groups and would welcome your input.
    The overall message of the report, as you have correctly noted, is that the experiences that are referred to as ‘psychosis’ should be understood as meaningful responses to an individual’s personal, relational, social, spiritual and cultural context. We believe that if these central points are taken on board, and embedded into services, service users from all cultural backgrounds will benefit.

    Lucy Johnstone and Dave Harper (contributors) Zenobia Nadirshaw (Chair of London DCP branch and expert in the field of BME)

    • The problem is not so much the report’s content, which for the most part is excellent, but the key issue that we have drawn attention to in our letter to the report’s coordinating editor (http://www.sumanfernando.com/Letter%20to%20Anne%20Cooke.pdf) is that the institutional and organisational processes resulted in very few if any people from BME communities – survivors, service users, mental health professionals – being involved with the DCP in the report from the outset. For this reason it’s difficult to accept your assertion that ‘…if these central points are taken on board, and embedded into services, service users from all cultural backgrounds will benefit.’ It’s clear from what I’ve heard already that many BME survivors and professionals are saddened and offended that the DCP failed to engage them from the outset. That said, it’s also clear that the DCP recognises that it has made an error, and is keen to rectify this.

    • Thanks Lucy and Dave for pointing to the sections in the DCP report that refer to non-western cultures (para 1.3 pg. 14) and the experiences of black people being diagnosed as ‘schizophrenic’ (para 6.3 pg. 45). There is indeed reference to beliefs in ‘supernatural or religious forces’ (pp. 12, 16, 20) but surely this applies to everyone not just ‘ethnic minorities’ and other groups that suffer discrimination?

      Reading the sections you draw attention to, I am horrified by the language used implying that black people in UK are outsiders who do not belong to British society; and by the inaccuracies that obscure the problems that British black people face in contending with the diagnosis of schizophrenia. In para 1.3, while stating that people from ‘particular cultures’ believe in ‘ghosts, evil spirits and aliens … [and] … demon possession’, the report suggests patronisingly that ‘we’ (presumably white Europeans) should ‘take into account ‘their’ (of the foreign ‘other’?) ‘upbringing and cultural background’.

      In para 6.3, the report refers to ‘migrant groups particularly people of African and African-Caribbean origin’ being diagnosed with schizophrenia, ‘even though rates in their home countries are generally similar to those in the UK’ (no reference given). In fact, it is not ‘migrants’ (many immigrants are now white people from Europe) who are over-represented among people diagnosed as ‘schizophrenic’ but the British black population born in UK, whose home country is the UK. The rate of diagnosis of ‘schizophrenia’ in the British black population is higher than that among black migrants of earlier years from Africa and the Caribbean. If by ‘home countries’ is meant the Caribbean (where systems of training are similar to that in UK, being dependent on Western psychiatry and psychology), the evidence is that the rates among black people in the Caribbean are lower than those reported among white British people in UK and considerably lower than those among black British (I can give references). In fact, there was a study at the Institute of Psychiatry in London (published in 1999) which showed that a Black Jamaican psychiatrist disagreed in 45% of instances with the diagnosis of ‘schizophrenia’ among black British patients at the IOP made by British psychiatrists. The point is that the issue is (mainly) one of institutional racism and not migration or ‘culture’. This may of course be an issue in North America too—see the book by Jonathan Metzl The Protest Psychosis How Schizophrenia became a Black Disease.

      I think that the report needs re-writing, keeping the good bits but including a critical analysis of how the diagnosis ‘schizophrenia’ play out in its application to black and possibly other racialized groups in UK. Otherwise, as Phil says, if is of little or no relevance to 14% of British society – and I think in its present form it is an insult to black British people. In any case the DCP should make an official apology for issuing such a report in the first place.

      • Re my previous posing, I should have said ‘surprised’ not ‘horrified’ in the first line of the second paragraph – I am sure the subscriber to the text of the report did not mean what seems to comes over by the language used. My deepest apologies, because in my experience Britain is the most liberal minded and inclusive western society I know of.

  7. Just to correct a wrong impression that may be given by an earlier post, there was apparently no consultation (before the report was drawn up) with people within DCP who may have known something about BME views, such as Zenobia Nadirshaw or any of the members of the BPS’s former ‘Race and Culture Faculty’ – a body I believe that had been disbanded a short while ago without consultation with its members! And of course no attempt had been made to consult service users / survivors from BME communities. So while welcoming the acknowledgment of some DCP members that a mistake was made and an apparent wish to work on a new more inclusive report, it does seem there are institutional problems (i.e.’ institutional racism’) that DCP may wish to address too. Way back in late 1990’s (soon after McPherson pointed out that most British institutions were institutionally racist), I think the Royal College of Psychiatrists invited a consultancy to report on institutional practices that led to institutional racism of this sort and made some changes as a result, such as introducing ethnic monitoring of its membership, membership exams etc. – although I must say did not manage at that time to bring in race equality into training curricula.

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