Open Mind 163

Beyond labels Bringing the real person into focus

Relaunch issue WHAT'S NEW

• The Big Society: Implications for mental health • Community treatment orders

FEATURES

• Psychiatry and sexuality • Borderline personality disorder • Uses of diagnosis

Issue 163 November & December 2010

welcome

A new beginning

Contributors

Editorial

Sarah Carr is an executive committee member of the Social Perspectives Network.

Welcome. I am pleased to introduce this first issue marking a new beginning for Open Mind, and myself as its new editor. We have taken the short pause in its publication as an opportunity to bring in a fresh perspective, both in design and content. Mind’s decision to continue publishing Open Mind was very much influenced by its readers. We hope you enjoy reading this re-launch issue.

Follow us on

In this issue, we focus on the language and labels used in mental health. Diagnostic labels, for example, are a significant issue for many of us who have used mental health services. I know – I have been given six of them over the last twenty two years. Some were useful initially, some were baffling and others were downright frightening. Language in mental health is not just about semantics, but a complex register that is enabling and disabling at times. The main articles in this issue examine this complexity from a variety of viewpoints, including professional and personal perspectives.

In the post-election world, new language and new labels have entered our shared vocabulary. ‘The Big Society’ is perhaps the most famous example. We take a critical look, from a variety of perspectives, at what this actually means and its implications for mental health and social care.

I hope you find these diverse perspectives thoughtprovoking and useful in your own work and life. I am mindful, as I present this issue, that I have joined a historic publication, known for its coverage of independent thought and comments. With your help, I hope to continue this legacy. Please write to us and let us know your views.

Jayasree Kalathil Editor openmind@mind.org.uk Openmind is published bi-monthly by Mind (registered charity number 219830) © Mind 2010 Mind, 15–19 Broadway, Stratford, London E15 4BQ. All rights reserved; no part of this publication may be reprinted or reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise without the prior written permission of the publishers. Mind cannot accept any responsibility for any photographs or other contributions submitted on a speculative basis.

Acting editor in chief: Bridget O’Connell Editor: Jayasree Kalathil Design: Dave McCourt Printed by: Trio Offset, Distributed by: Meldrum Mailings 2 | Open Mind November & December 2010

Nick Craddock is Professor of Adult Psychiatry at the Department of Psychological Medicine and Neurology, Cardiff University.

Gloria De Piero is an MP (Labour) for Ashford, and was a GMTV presenter and journalist.

Nita Devabhai is the manager of the National Black Carers and Carer Workers Network.

Suman Fernando is a retired consultant psychiatrist, academic and author of Mental Health, Race and Culture.

John Hanna is a consultant clinical psychologist and the director of the Policy Unit, Division of Clinical Psychology, British Psychological Society.

Mike Kerr is Professor of Psychiatry of Learning Disability at the Department of Psychological Medicine and Neurology, Cardiff University.

Simon Lawton-Smith is Head of Policy at the Mental Health Foundation.

Tom Pollard works at Mind as a Policy and Campaigns Officer in the Social Inclusion and Rights Unit.

Dan Poulter is an MP (Conservative) for Central Suffolk and North Ipswich, and a gynaecologist.

Clare Shaw is a survivor-activist and a director of harm-ed (www. harm-ed.co.uk), a user-led selfharm training organisation.

Debra Shulkes is a psychiatric survivor and editor of Advocacy Update, a publication of the European Network of (ex-) Users and Survivors of Psychiatry.

Anita Thapar is Professor of Child and Adolescent Psychiatry at the Department of Psychological Medicine and Neurology, Cardiff University.

Nick Yates is Senior Local Engagement Officer at Mind’s Policy and Campaigns team.

contents

Contents

16

4 The sickness label Sarah Carr takes a critical look at the psychiatric history of homosexuality

6 The right call A professional viewpoint on diagnosis from Nick Craddock, Mike Kerr and Anita Thapar

8 A cinematic epiphany A personal narrative of making sense of diagnosis by Tom Pollard

10 The most savage insult Clare Shaw and Debra Shulkes examine the damaging effect of the BPD label

14 Be our guest Dr John Hanna in conversation with Open Mind

16 The Big Society Nick Yates, Gloria De Piero and Dr Dan Poulter examine the implications of the Big Society agenda for mental health and the voluntary sector in general

22 Research update Simon Lawton Smith reports on the recent study on Supervised Commu­ nity Treatment Orders from the Mental Health Alliance

23 Welfare update The welfare reform agenda has grave implications for people experiencing mental distress, writes Tom Pollard

4

8

24 Reviews • Nita Devabhai on a BBC 3 documentary about young carers • Dr Suman Fernando on The protest psychosis: how schizophrenia became a black disease

14

6

ARTICLE

The sickness label A brief psychiatric history of homosexuality Pathologising homosexuality is not a thing of the past. It can still make mental health services inaccessible and oppressive to gay and lesbian people.

By Sarah Carr

F

orty years ago, in the wake of the Stonewall riots which marked the beginning of the gay liberation movement in the US, a group of radical British gay men and women were creating the Gay Liberation Front. A direct challenge to psychiatry formed a key part of their manifesto: “One way of oppressing people and preventing them getting too angry about it is to convince them, and everyone else, that they are sick.

There has hence arisen a body of psychiatric 'theory' and 'therapy' to deal with the problems and 'treatment' of homosexuality.”

At the time homosexuality was classified as a mental illness. As the gay liberation movement grew in the US and Britain, activists campaigned tirelessly to remove homosexuality as a disease classification and as a mental disorder from diagnostic manuals.

The sickness label The sickness label was used as a means of oppression by a psychiat­ ric system which strived to ‘cure’ gay people. Barbara Gittings, one of the original campaigners in the US, recalled the oppressive power of psychiatry: “… the sickness label infected everything we said and made it difficult to gain credibility for ourselves. The sickness label was paramount.”

Thanks to these pioneering gay

civil rights activists, in 1973 the American Psychiatric Association finally recognised that being gay did not mean being sick and homosexuality was removed from the Diagnostic and Statistical Manual of Mental Disorders.

However, the option to diagnose someone with ‘sexual orientation disturbance’ remained until 1987.

Homosexuality was only finally removed from the International Classification of Diseases in 1990 – the year a therapist was attempt­ ing to cure me of my ‘illness’.

Sadly, changes on paper do not always mean changes in practice.

Research published last year showed that 17% of the 1400 therapists surveyed had attempted to help patients reduce feelings of same sex attraction. The pathologisation legacy remains influential in mental health services, often making them inaccessible, oppressive or even unsafe for lesbian and gay people, or for people who are unsure about their sexual orientation. For that reason the lesbian and gay commu­ nity can be suspicious of main­ stream mental health services and we often do not engage with them when we are in distress.

4 | Open Mind November & December 2010

Coming out alive Michael King and Annie Bartlett who have explored gay people’s

GPs are still sending gay people like me who experience mental distress to conversion therapy to make us 'normal'. experiences of mental health services in the UK concluded that “the conservative bias inherent in psychiatry and psychology has damaged the lives of gay men and lesbians and provided grounds for discrimination.” When you know what went on in some NHS psychiatric hospitals until 1970s you can understand what they mean: lobotomies, hormone treatment, chemical castration, electric shock and emetic aversion therapy.

Peter Price was a gay man who psychiatrists attempted to ‘cure’ with aversion therapy, using emetic drugs to make him sick when he was shown sexual images of men. He describes his horrific ordeal: “...for seventy-two hours I was injected, I drank, I was sick... I just had to sit in my own vomit and excrement... I was in a terrible state.

What was going through my mind was not the fear of being gay; it was the fear of not coming out of the psychiatric wing alive.”

Fortunately, Peter came out alive, but Mathew, a young gay man sent to a military hospital instead of the

THE SICKNESS LABEL

prison for having a sexual relation­ ship with a man, did not. As his sister Colleen found out years later, Mathew had been given the emetic drug Apomorphine and had died as a result: “What he’d ended up dying of was dehydration and that had brought on a massive stroke. It’s what people die of in countries without much water when they’ve got diarrhoea and vomiting; it’s really bad care, why someone in the UK should actually die because of just vomiting.”

Or indeed because he loved men.

Refusing to play the game “The plague of mankind is the fear and rejection of diversity... The belief that there is only one right way to live,” wrote the famous psychiatrist Thomas Szasz in a critique of his own profession.

Unfortunately, mainstream mental health services are still in the business of making sure people ‘play the game’, with some thera­ pists exploiting gay people’s internal conflicts about their sexual

orientation, confusion about identity or distress at rejection and discrimination, in order to make them ‘normal’.

It happened to me, but it did not work. I may have been narrowly spared the violent torture of aversion therapy, but I found myself, as a teenager, being treated by a psychotherapist who thought he should try to change my sexual orientation in order to address my mental health problems. I had sought help because I had tried take my own life, not because I was gay.

GPs are still sending gay people like me who experience mental distress to conversion therapy to make us ‘normal’. This has recently prompted the British Medical Association to declare that the NHS should not fund ‘discredited’ and ‘harmful’ conversion therapy: “Sexuality is such a fundamental part

of who a person is; that attempts to change it just result in signifi­ cant confusion, depression and even suicide.”

I think the last word should come again from the 1971 Gay Liberation Front manifesto, as it still holds true today: ”That psychiatrists command such credence and such income is surprising if we remember the hysterical disagreements of theory and practice in their field, and the fact that in formulating their opinions, they rarely consult gay people. In fact, so far as is possible, they avoid talking to them at all, because they know that such confrontation would wreck their theories.”

Let us keep wrecking their theories because those theories can lead to the broken lives and broken minds of lesbian and gay people.

Find out more For more information on the issues discussed in this article, see: • www.treatmentshomosexuality.org.uk • www.nmhdu.org.uk/our-work/mhep/sexual-orientation/ • www.pacehealth.org.uk • www.lgbtmind.com

VIEWPOINT

The right call Timely and accurate diagnosis helps understanding, aids communication, guides therapy and can save lives.

By Nick Craddock, Mike Kerr, Anita Thapar

'D

iagnosis‘ means the identification of the nature of anything, either by process of elimination or other analytical methods. Diagnosis in healthcare is a well-established and fundamental part of clinical practice that has proven to be of great value for predicting how things may develop in the future (‘prognosis’) and guiding choices amongst different ways of helping the person. The process of making a diagnosis uses systematic, logical approaches to evaluating a person’s physical and mental state in order to determine if this state is within the normal range (taking account of age, developmental stage, socio-cultural background etc) or

6 | Open Mind November & December 2010

whether there is a pattern of features indicative of a recognised physical and/or mental disorder or illness. The diagnostic process, thus, allows past knowledge, experience and research to be used for the benefit of the help-seeker.

Supporting the helpseeker in making decisions When providing health care to an individual, decisions must be made.

The goal is always to ensure that optimal choices are made between what may be very different options and that the benefits outweigh any down sides. The aim is for the clinician to support the help-seeker in making the decision. Making

a diagnosis is an effective way of guiding evidence-based decisions.

Furthermore, in most situations encountered in mental health, some level of diagnosis is essential to ensure effective help is provided (when needed) and that everyone is able to have some shared under­ standing of the situation. For example, there are many reasons why an adult may develop lethargy, lose weight and become less active and interested in life. This could reflect temporary adjustment to a changing life situation (i.e. under­ standable normal response to life’s difficulties). The person might have cancer. The person might have heart failure. Alternatively, the person may be experiencing a

THE SECTION RIGHTTITLE CALL

severe depressive episode and be at immediate risk of suicide. The ways of helping are all very different (and not all medical) and diagnosis is needed to distinguish between the possibilities and implement the right help as early as possible.

Accurate and prompt diagnosis may be life saving.

Validating a person's experiences When a person seeks help from a mental health professional, they usually want to know what the problem is and to get effective help.

Diagnosis provides reassurance that the situation is not unique, mysteri­ ous or inexplicable and that there is a body of knowledge and experi­ ence that can be brought to bear in providing help. A diagnosis can help reduce inappropriate feelings of blame (for example parents believing that their parenting is at fault in a child diagnosed as having autism). It can reduce stigma by explicitly acknowledging the presence of illness (and, thus, that the feelings or behaviour cannot be dismissed as character weakness or bloody-mindedness).

Challenging stigma Diagnosis helps to communicate information between public and professionals about the support and service needs (including, where needed, speech and language therapy, occupational therapy, schooling support etc).

Diagnosis allows patients and carers to talk with, and get advice from, people with similar problems (for example, through support organisa­ tions like MDF – the Bipolar Organisation) and be able to read the most relevant educational and self-help material. Diagnosis can contribute to reducing stigma by helping the public understand why people are different, and, crucially, start to appreciate that mental illnesses are every bit as real and serious as physical illnesses like heart disease, cancer and diabetes.

Diagnosis can help an individual make sense of being different or of not functioning like most others and challenge the feelings of shame, loneliness and low self-esteem that may otherwise occur if they are simply treated as being ‘odd’, ‘bad’ or having a ‘character flaw’.

Improving the evidence base All the issues considered so far have been practical benefits that relate to the here and now. There is another major benefit for diagnosis.

It allows evidence to be gathered about prognosis, therapies and ways to protect from illness.

Without the possibility of scientifi­ cally based studies (which require diagnosis) there could be no progress and there would be no chance of things being better for future generations. Further, without diagnosis, today’s patients would not have been able to benefit from research knowledge accumulated from previous patients’ experiences.

The future of diagnosis We have outlined many of the benefits of diagnosis. Like every­ thing in life there are potential downsides in some situations and for some people. Examples are rehearsed within some of the accompanying articles. Undoubt­ edly, it is important to be fully aware of potential problems and to work to safeguard against them. How­ ever, the existence of potential problems is not a reason to avoid or abandon use of diagnosis. We also note that a great deal of work is taking place to improve psychiatric diagnosis through better under­ standing of the causes and triggers of illness.

Approaches that use (for example) dimensions with or without categories may prove to be more useful than the current diagnostic categories.

The ways of helping are all very different (and not all medical) and diagnosis is needed to distinguish between the possibilities and implement the right help as early as possible.

Accurate and prompt dia– gnosis may be life saving.

The bottom line is that diagno­ sis is important. When used well, it is key to a patient making an informed decision. It ensures a person gets the most effective help as quickly as possible and can benefit from the body of knowledge that has been built up from those who have had similar experiences previously. Most people who seek help from mental health professionals want these benefits.

After a cinematic

epiphany

viewpoint

The discovery of a diagnostic term created the hope that there would be suitable treatment and a way to get better. But finding solutions and learning to moving on was harder than expected.

By Tom Pollard

T

he cinema would not seem to be a likely venue for receiving a mental health diagnosis. But it was not until, about five years ago, I went to see the wonderful film Tarnation that I came across an accurate descrip­ tion and associated label for what I had been experiencing during my first couple of years at university: ‘depersonalisation disorder.’ At the time, it came as a massive relief.

I had finally heard someone else describe what I had been feeling since a night of panic attacks over a year earlier and what I had been trying to express to various doctors, mental health professionals, friends and family members in the interven­ ing period.

This relief was in part due to a sense that what I was going through was not some unique experience, so alien that no one else could understand it, but something that others had been through before or were going through right now. However, perhaps of greater significance was the hope that the discovery of this diagnosis had provoked, that I would now receive suitable treatment and ‘get better.’

The search for solutions The symptoms that depersonalisa­ tion disorder refers to are very abstract, which is why it had been so hard to convey to others what I was feeling: a sense of things being ‘unreal’, feeling ‘distant’ from the world, a sense of ‘detachment’ from memories and people you are close to, a feeling of ‘observing’ yourself rather than ‘being’ yourself.

Strange stuff, now neatly packaged within this diagnosis.

Through this gateway label, I was able to access a ‘community’ of people suffering from or linked to

the condition: websites, forums and books all discussing the ghostly shroud that depersonalisation drapes over its victims. Again, this felt like progress – surely there would be answers somewhere in all this discussion?

However, it was at this point that I began to sense that the diagnosis I had stumbled upon did not hold all the answers to my woes. The forums were the most attractive aspect of this ‘community’ at first, with their endless examples of depersonalised experiences that resonated so tightly with my own.

But none of these threads led me to any solutions.

Working it out for oneself As it happened, I had recently started seeing a cognitive behav­ ioural therapist. On my next visit, I was keen to relate my cinematic epiphany. He responded with mild interest but seemed unshaken from the path of exercises and discus­ sions he had planned for me.

He argued that there was little productive direction to be taken from a broad description of how I felt. Instead, he said, we should focus on the individual components of thoughts and behaviour that were contributing to my malaise.

In keeping with the way I had felt about the CBT so far in general, I responded with frustration and a sense that I was not being listened to and that I would be stuck this way forever.

I was wrong. With no other options on the table, and having tried various pharmacological solutions, I stuck with the CBT and begrudgingly tried to do as I was advised. It was a slow, gruelling process with almost as many steps backwards as forwards, but eventually I started to feel the

positive effects. By focusing on tackling the ruminative, obsessive introspection and unproductive behaviour that underwrote the feelings I was experiencing, the shroud began to lift and I began to feel, for want of a better term, more ‘normal.’

Going beyond the label I am not saying that a diagnosis cannot be helpful. I did feel temporarily better as a result of putting a name to what I was feeling. Everyone may experience things, and respond to things, in vastly different ways. What I am trying to point out is that a diagnosis can become a shelter in which to seek refuge from the scary things that are going on in your life. It can legitimise rather than challenge how you are feeling and build an expectation of ‘outside’ redemption rather than ‘inside’ rebuilding.

I used the label I had found as a comforting blanket for a while.

But it was not until I abandoned it for the cold reality of what I was experiencing, and how my thoughts and behaviour were sustaining it, that I began to tackle my problems effectively. Perhaps if the symptoms of mental distress were less stigmatised, there would be less of an imperative to seek validity in a named diagnosis.

If asked now how I would define the mental health issues I experienced, I may still fall back on this term as a means of avoiding a lengthy and complex description. But in doing so I would wince a little at the insufficiency of squeezing my experience – including how it came about and how I was moved on from it – into the confines of a once-welcomed label.

TITLE

The most savage insult Exposing the damage caused by the borderline personality disorder label

10 | Open Mind November & December 2010

THE MOST SAVAGE INSULT

Language within mental health is more than just semantics, and this is most significant in the case of diagnostic categories like borderline personality disorder and its effect on those diagnosed. By Clare Shaw and Debra Shulkes

T

here is a huge body of clinical literature on the description, diagnosis and treatment of borderline personality disorder (BPD). Yet, this literature pays scant attention to its lived impact. Beyond rightful concerns about the label’s immense stigma, few examine the effect of branding someone’s personality – the core of their being – as disordered.

It is now 22 years since the current National Clinical Director for Health and Criminal Justice, Louis Appleby, denounced personality disorder (PD) diagnosis as “an enduring pejorative judgement.”1 Others have highlighted the vulnerability of people with the label to severe mistreatment and the smearing of their characters across medical and legal settings.2 Still, service user and survivor reports of ongoing discrimination and degrading treatment go unheeded.3 Calls to expand the description and diagnostic criteria have resulted in increases in diagnosis rates, with one recent survey claiming that 72% of the British population had personality disturbances.4 There is now a real prospect of screening all psychiatric patients for pathological personality traits from 2012. Clearly, there is a desperate need to pay attention to the voices of people who are stuck with this label.

BPD – the official explanation The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) aligns personality disorders with enduring, inflexible, socially deviant styles of thought and behaviour. For a diagnosis of BPD, five of the following ‘symp­ toms’ must be cited:

• intense interpersonal relationships • affective instability; mood reactivity • impulsive behaviours • inappropriate intense anger • frantic efforts to avoid abandonment • unstable self-image • suicidal and self-mutilating behaviours • chronic feelings of emptiness • transient stress-related paranoid ideas It is often said that such vague and subjective criteria could apply to almost anyone; who is to decide when anger is ‘inappropriate’ or ‘intense’?

So what is wrong with it?

Since being introduced to the DSM in 1980, several studies have criticised BPD diagnosis for numer­ ous reasons:5 • its lack of scientific reliability and validity • its biased construction, which pathologises the coping strate­ gies and options of particular populations such as women • its alarmingly inequitable patterns of diagnosis – 75% of those diagnosed are women – at least 70% of whom were sexually abused as children. Many draw parallels with notorious past diagnoses such as hysteria • its overwhelming stigma – BPD is arguably one of the labels most feared by staff and patients, being associated with phrases like manipulative, attentionseeking, untreatable, and untrustworthy, and a list of assumptions so derogatory it has been described as “little more than a sophisticated insult”

• its use as a punitive dust-bin diagnosis for those judged to be ‘bad’ patients because they are troublemakers or have failed to ‘respond’ to treatment Perhaps these extreme concerns could be overlooked if the diagnosis was linked to credible causation models or effective treatments. However, clinical explanations are highly sketchy – the latest ones trace the problem to poor brain development – and until recently, everyone with the label was considered incurable.

Current responses cluster around medication and dialectical be­­haviour therapy, a behaviour modification programme that rewards ‘positive’ behaviours, and punishes ‘inappropriate’ ones.

Service users and survivors have linked behaviour modification with manipulation, covert force and “ceremonial degradation.” Where these techniques do not work, the reason is presumed to be the individual’s underlying pathology.

Diagnosed disordered: our story A diagnosis of BPD destroys lives.

We should know. BPD is our primary diagnosis. When we listen to the voices of those who have been diagnosed with BPD, there is no debate – it is hurting people.

Badly.

“In many ways it is a relief to be diagnosed… At last you have it irrefutably confirmed that you are wrong and always have been wrong.

And it makes such sense … you have nothing else to blame but yourself.” (Clare Shaw)

ARTICLE

“It became clear to me that the diagnosis had caused women more distress than whatever took them to services in the first place... No other diagnosis smears the woman’s character, trustworthiness and validity of her distress as much as BPD does.”

(Louise Pembroke) “Having the diagnosis of BPD has never been a positive experience, it’s always hung over my head like a dark cloud.” (Jo) Language within mental health is more than ‘just’ semantics.

Words like personality disorder can “deform thought and practice.”

They position the diagnosed as ‘other’ in her distress. They tell her that her very being is ‘disordered.’

They obstruct recognition of the role of context. And they push our voices, opinions and experiences to the margins of society.

Our diagnosis confirmed – and deepened – the most negative messages we had been given throughout our lives. It meant that it was our fault that services had not been able to help us. It meant that our experiences of childhood trauma and violence were over­ looked as marginal details. It meant that we were not going to get better – there would always be something wrong with who we are. We live with the legacy of that message to this day.

imperative that professionals, practitioners, activists and academ­ ics stop promoting this regressive and traumatising label and all others like it. Led by service users and survivors, we must: • undertake urgent research and monitoring of the human rights situation of people with the label • look for alternative ways of framing and explaining the distress which often leads to a BPD diagnosis, as well as ways of assisting those who have been injured by the label.

Getting rid of the label The diagnosis of BPD is causing extensive damage to the people it is supposed to help. It is leading to bad practice in services rather than meaningful support. It is therefore

Whether we maintain that all diagnosis is flawed, or whether we feel that alternative diagnoses – such as Complex Post-Traumatic Stress Disorder – offer more helpful,

less devastating alternatives to BPD, we must listen primarily to the voices of those subjected to these labels. We must accept the simple, incontrovertible reality that the words we use to describe ourselves and each other really do matter.

Language can help. Or it can hurt.

It can kill. “[If] I’d never come into contact with it and someone had validated and helped and cared and loved instead of immersing me in this… I wouldn’t have tried to kill myself the second time. Because that’s what it did. If I had died, this would have been the cause as it escalated my suicidality into a realm previously unknown to me. It caused me to feel sub­ human. It’s lethal.”6

1. Lewis, G and Appleby, L (1988) ‘Personality disorder: the patients psychiatrists dislike,‘ The British Journal of Psychiatry, 153: 44–49 2. Becker, D (1997) Through the Looking Glass: Women and Borderline Personality Disorder, Westview Press; Kirk, S and Kutchins, H (1992) The Selling of DSM: The Rhetoric of Science in Psychiatry, Aldine De Gruyter 3. Castillo, H (2003) ‘A dangerous diagnosis,’ Mental Health Today, February 4. Yang, M, Coid, J and Tyrer, P (2010) ‘Personality pathology recorded by severity: national survey,’ The British Journal of Psychiatry, 197: 193–199 5. See for example: Herman, J.L (1997) Trauma and Recovery: The Aftermath of Violence from Domestic Abuse to Political Terror, Basic Books; Pilgrim, D (2005) Key Concepts in Mental Health, Sage; Wirth-Cauchon, J (2001) Women and Borderline Personality Disorder: Symptoms and Stories, Rutgers University Press; Castillio, H (2003) 6. Personal correspondence with a survivor of psychiatry from Ireland.

12 | Open Mind November & December 2010

THE MOST SAVAGE INSULT

Challenging the label: Suzi’s story Suzi discovered that she had a diagnosis of BPD by accident when, on a routine visit to her GP, she happened to see it on the computer screen.

Suzi had worked hard to get her life on track after a traumatic childhood marked by domestic violence and sexual abuse. When her sister took her own life, Suzi became unwell and, following a violent incident with an ex-partner, was admitted to a psychiatric ward. After several months of treatment, Suzi was again on the road to recovery, back at her studies and work.

The accidental discovery of her BPD diagnosis was shocking and infuriating. When she asked for an explanation, she was put in contact with a different psychiatrist who gave her an alternative diagnosis of depression, which she felt more accurately described her experience.

Suzi’s worries about the impact of having a BPD diagnosis in her records became stronger when she started working with children with emotional and behavioural problems. She was afraid she would not pass occupational health checks; that the diagnosis would make her unfit to work with vulnerable people.

Suzi requested psychiatric services to remove what she believed to be a misdiagnosis from her records, and argued that it was unacceptable that someone was left unaware of a diagnosis on their records.

Having requested and gained access to her case notes, Suzi was further upset and shocked to find a number of inaccuracies in them, including important details of sexual abuse history which she had been questioned about.

The Trust responded by saying that they could not remove the BPD diagnosis from her records, but would formally record the current psychiatrist’s opinion that it was a misdiagnosis. There was no reference to the distress caused by the misdiagnosis or to the inaccuracies in the case notes. Consequently, Suzi filed a formal complaint and eventually received an apology from the Trust.

The discharge summary made no reference to her efforts to recover and survive. She felt this was too much of a challenge to the official view that BPD is untreatable. Suzi found it outrageous that one three-week admission to an acute ward, where she saw doctors at most four times, could lead to a person being given any diagnosis, let alone one as damaging as BPD. These abuses of power and oppressive practices need to be challenged in order to limit the damage it does to people’s lives.

Adapted from Asylum magazine, volume 14:3, p11–13, 2004. The full story is also available at http://spn.org.uk/fileadmin/SPN_uploads/ Documents/Papers/SPN_Papers/SPN_paper_7.pdf

BE OUR GUEST

“A work in progress” Dr John Hanna talks to Open Mind on mental wellbeing, coping with stress, and what keeps him motivated.

What is the biggest challenge for people with mental health problems?

Overcoming societal stigma about mental health problems. This appears to be the biggest obstacle for people wanting to return, or start, work, which of course offers huge potential for further recovery. It also affects forming friendships, housing arrangements, access to community resources, educational opportunities, travel...

I am weary of discovering, after weeks or even months of working to instil hope and set social inclusion goals with individuals recovering from suicidal thinking or psychosis, that members of the local community have prejudicially blocked their access to essential needs or activity. This results in my clients breaking down again through loss of confidence in society’s willingness to accept them. We must press for continued funding for the Time to Change campaign and find new ways of supporting this civil rights movement.

What advice would you give to someone who came to you and said they were suffering from depression?

I would want to know how bad it had become, and whether they had had thoughts of harming themselves or ending their life – we must not be shy about asking these important questions. If so, I would ensure they had support to manage day-to-day and help them find out how best to access professional help. If their depression

14 | Open Mind November & December 2010

was a bit more manageable, I would suggest they work on making positive changes in scheduling activity, exercise, nutrition, drug/alcohol intake, relationships. Often people need help with this, or find that while self-help makes a good start, it is not enough.

I would recommend they contact their local Improving Access to Psychological Therapy (IAPT) centre. I would hope that relatively immediate low intensity support, offered by IAPT through the NHS, might serve to resolve most of their difficulties, but if not, the range of high-intensity, evidence-based brief psychological therapies available would provide choice and, ultimately, a positive outcome. I wish I could feel as confident about access to psychological therapies for people with other, often more complex and risky, presenting difficulties within the NHS. We must press on toward realising equal access to ethical, clinically effective and economical psychological therapies for all who would benefit.

Do you, your family or friends have any personal experience of mental distress? How did it affect you?

Some of my family members and friends have experienced episodes of mental distress, including anxiety, depression and psychosis. I try to be helpful as a friend/relative, but I resist the pull to become their psychologist as this is unethical for a variety of reasons. I will advise on how best to get

help, from my perspective at least.

These personal situations are of course a concern but I do not see these as out of the ordinary, largely because I help people with such problems on a regular basis. I have been struck by how difficult it has been for other family members or friends to cope with – I have stepped in on occasions when significant others are pulling away from the person who is struggling, perhaps because they feel overwhelmed or under-skilled. For the person in distress, though, this can seem like rejection, or abandonment.

In these circumstances I try to keep everyone together and encourage simple ways of continuing to offer an empathic, validating presence in the life of the person concerned.

How do you cope with the day-to-day stresses of your job?

My clinical role is quite stressful, but I have been doing it now for several years and I feel broadly confident in what I do and in the teams I work with.

My policy role is relatively new and my confidence is building here. I do what I can to maintain a work-life balance, and separating work and home life is important to me. Commuting home at the end of the day affords me time to shift out of work mode. I try to wrap up any reflections on my day by the time I reach my front door. I do find that ideas, and concerns, come to me in the night and cause me problems with sleep. I try very hard to manage

Losing him was a terrible blow to me and the rest of the family; the grief was compounded for me by what had become a precocious introduction to the fragility of life.

“Perhaps one of my main coping strategies is holding a clear sense of purpose, personal and political, which clarifies for me why I continue to do what I do.” my thoughts, to divert them as best as possible to the next day, when I am (hopefully) rested and more capable of addressing them. This remains a work in progress! Perhaps one of my main coping strategies is holding a clear sense of purpose, personal and political, which clarifies for me why I continue to do what I do.

What has been the most stressful experience of your life?

This is a difficult question to answer, not because I can’t but because I have

some reservations about opening up my personal life in this way. But I will answer it, without self-censure, as I think it is important for your readers to know that many of us mental health professionals have faced and ultimately overcome significant life challenges; as far as I am concerned, there is no “them and us.” When I was seven, my youngest brother became seriously ill. I picked up on cues which indicated that his prognosis was very poor. He died when I was ten, after many difficult months of treatment.

What got you through it?

I did not cope in the same way as the rest of my family members; I was quite different from them in personality.

For a while, I retreated into fantasy, I was quite isolative (beyond, probably, what would be reasonable for an otherwise healthy introverted nature) and I became somewhat hardened emotionally. I decided I would need to live on for myself and for him as well, as he would be missing out. This brought me out of myself. I read a lot of existential novels and philosophical texts, which helped make sense of what had happened, and rejuvenated my optimism. I have got through the worst of it by carrying on, by participating in therapy myself before I qualified as a clinical psychologist, and by honouring his short but largely joyous time on earth by pursuing good causes alongside a good quality of life.

I think the latter is completely necessary to find success in the former.

What makes you happy?

Happiness is not, to my mind, a constant state, and certainly not a given. I find I have to work consciously to achieve and sustain moments of happiness, and to remind myself to be grateful for them when they have come and gone. I try to retain what I think is a positive, optimistic temperament, to maintain a healthy lifestyle and to be alert and receptive to experiences which make me feel good – the imaginative play of my sons, spending quality time with my wife, live music, regular time out with friends, completing practical and creative tasks at home. My job often makes me happy – when I have helped someone through crisis, or when I have influenced policy decisions.

Tolerating and working through other states of mind – being afraid, angry, upset – also seems vital in allowing space for happiness to take root.

on the agenda

The Big Society Implications for mental health The new push for voluntarism from the state poses possibilities and challenges for mental health and organisations working in the sector.

By Nick Yates

T

he Big Society is the Coalition Government’s big idea to fix ‘Broken Britain’ and transform the way public services are delivered. At its heart, the Big Society is about ensuring that the needs and desires of local people are reflected in their communities and public services.

It draws on the belief that in recent years the state has been doing too much, that we have become over-reliant on bloated bureaucratic service delivery, and that if we want to fix the ills of society we need to take responsibility for our own communities. What does it mean in practice? What does it mean for Mind and mental health?

What is it all about?

The first step is to make sure people have a greater say in government policy. The idea is that by rolling back state provision to core services, increasing local democracy and providing more information about how tax payers’ money is spent, government action will be more responsive to local need.

As the state rolls back, it will encourage other service providers to “roll in,” by making it easier for voluntary and private organisations to run formerly state-run public services, and by funding services through charitable giving, philan­ thropy and investment from local companies.

16 | Open Mind November & December 2010

Both these moves are based on the belief that making it easier for lots of different organisations to provide services will increase individual choice, encourage innovation and improve satisfaction.

These ideas are embedded in legislation like the recent Acad­ emies Act which aims to enable faith groups, parents and private companies to set up and run their own schools.

What the plans do not explain What will the roll backs mean for services such as mental health where provision still falls woefully short of demand? The Government has promised the vulnerable will be protected. But they also seem to be saying that philanthropy and a range of service providers will step in and fill existing gaps. The key question is if these gaps are not filled, will the state roll forward to protect the vulnerable? Similarly the concept of extending choice in areas like mental health services is largely a misnomer because currently virtually no choice exists.

One of the core principles of the Big Society is the belief that if you see something being run poorly, in danger of closure or not meeting your needs you should be able to change it. For example, doctors would be best placed to organise medical services and parents to run schools. In terms of health care you

could argue that handing power to patients, not doctors, would be more in tune with the stated aims of the Big Society.

Developments so far A key criticism of the Big Society initiative is that whilst it is strong on ideas and intent, it is extremely limited on detail around implemen­ tation. However, a few key an­­ nounce­­­ments do shed some light.

The ‘Big Society Bank’, set up using funds from dormant bank accounts, will provide funds to existing organisations that have a proven track record in supporting social enterprise. The idea is that this initial amount of money will be maintained long term by encourag­ ing a massive increase in charitable giving and philanthropy.

Two flagship initiatives will also encourage individuals to embark on their own social enterprise. National Citizens Service will be rolled out from September 2010 to encourage 16 year olds to become more active responsible citizens. Alongside this, National Centres of Community Organising will train 5,000 inde­ pendent community organisers over the next five years. No details have yet emerged explaining what being a “more active responsible citizen” entails and how this initiative will run. Equally, it is unclear exactly what the community organisers will be doing. The lack of detail leaves question marks over the actual

the big society

One of the core principles of the Big Society is the belief that if you see something being run poorly, in danger of closure or not meeting your needs you should be able to change it.

impact of these plans.

Inside the Government, there appears to be a strong emphasis on embedding the principles of the Big Society across departments. The Office for the Third Sector has become the Office for Civil Society and Francis Maude MP will chair a Ministerial Committee on the Big Society. Meanwhile departmental boards have been enhanced to include members from the private and voluntary sectors to advise on strategy and progress. Potentially, the biggest change is the require­ ment for departments to demon­ strate how they are supporting the Big Society in their Structural Reform Plans. These plans detail what each department aims to achieve and have been introduced to ensure members of the public can check that the Government is delivering on its promises. None of these actions guarantee that fundamental changes will result from the Big Society, but they do

suggest a significant amount of departmental and ministerial time is being put into the initiative.

What it could mean in reality Frontline public sector staff could see significant changes. They might find themselves working for a private company or voluntary organisation that delivers state contracts. They might even find themselves joining together with other public sector workers, forming a co-operative and running the service they work for.

For people using services the plans could, in theory, usher in a golden era of user-led and designed services. It is likely that individuals will be offered more opportunities to voice their opinions on what is important to them. Meanwhile service user-led organisations could be given more opportunities to run services that suit local need.

on the agenda

If the plan really takes off we could also see a real shift in how our local communities operate. The existence of community organisers could see us persuading or being persuaded by our neighbours to take on voluntary roles in our local communities. Parents might be given a greater say in school curriculum, patients could be more widely consulted on treatment options and volunteers might be expected to dig deep to fund services in their community.

The basic idea of communities pitching in to support each other will find few critics. However, its impact will almost certainly be tempered by the extremely challeng­ ing financial environment, with unprecedented cuts in public spending. An increase in charitable giving and volunteer action could see more services provided at a

lower cost to the state in the long term. But the more immediate question is what will happen to services in the coming months? Will public service workers surrounded by redundancies and reduced budgets really summon the motivation to run services? And once the cuts are through will there be enough of a voluntary sector left to support the Big Society?

What does it mean for mental health and Mind?

It is difficult to tell what the impact of the Big Society on mental health will be. It presents opportunities and threats for Mind and mental health services in general.

Mind has been putting the principles behind the Big Society into practice for many years. Our network of local Mind associations (LMAs) are organised around the

18 | Open Mind November & December 2010

idea that local people are best placed to run local services. Our Ecominds and Open Up projects clearly embody the key aims of the Big Society. By equipping individuals with the skills and resources they need to improve their environment or challenge stigma in a way that suits them, Mind is already encour­ aging people to take action in their local communities.

These initiatives could benefit from more funding and support to extend their reach, a rise in volun­ teerism and a drive to increase philanthropy. LMAs could have more opportunities to provide services, drawing funding from traditional providers and putting the voice of service users at the heart of more services for their local community.

The concern for Mind and mental health services more

the big society

generally are mainly around funding. We have already seen a local Mind service lose half a million pounds in funding as a result of Government cutbacks. Encouraging private companies with more capital to set up new services is not necessarily a good thing for the voluntary sector. This has significant implications in terms of the quality of the service provided as private companies are less likely to involve service users and volunteers to the extent that Mind does.

Beyond funding there are also big concerns about just whose voice will be heard in the Big Society.

The danger is that those with an already strong voice will see their agenda further advanced at the expense of those unable or are currently denied a voice. Providing space for people with experience of mental distress to speak is a core part of Mind’s work. A new Diverse Minds project has been launched to do just this. The project will bring together refugee and asylum seekers and service commissioners to improve the commissioning of mental health services for refugees and asylum seekers. But Mind alone cannot ensure that marginalised voices are heard. The Government needs to make a firm commitment to ensure that all voices, not just the loudest, are heard in the Big Society.

If the Big Society is about providing more room for individual choice and control over public services, there is potential for Mind to gain a lot in terms of providing more services and placing service users at the heart of service design.

But there are obvious concerns that increased demands on organisa­ tions like Mind will not be backed up with investment. In the Govern­ ment’s eyes at least, the size of both the challenge and the opportunity is up to us!

What will happen to services in the coming months? Will public service workers surrounded by redundancies and reduced budgets really summon the motivation to run services? And once the cuts are through will there be enough of a voluntary sector left to support the Big Society?

on the agenda

The Big Society A softer label for funding cuts?

A charity sector made vulnerable by widespread spending cuts is not the right way to grow the civic society and encourage community voluntarism.

By Gloria De Piero MP

T

he ‘big idea’ of the Big Society has been blamed by some for depriving the Tories of a majority.

Yet, they portray it as the ideologi­ cal foundation guiding their government. What do they actually mean by the term ‘Big Society’?

Is it about devolving government power or is it just a new, softer label for the Thatcherite desire to slash public services? Asking this question does not mean defending big government for big govern­ ment’s sake – however much the Tories want to frame the debate in that way.

Is using public money to help disabled people stay in work instead of claiming benefits big govern­ ment or Big Society? Is providing day support for those with mental health issues big government or Big Society?

In my constituency, the council is currently running a consultation on closing mental health day services. This threatens the future of the Rokerfield day centre in Ashfield – a safe space that offers peer support, training and skills to people managing mental health difficulties. Service users and their families have been coming into my surgeries with real fear and worry that this support cannot be provided by the community services the Tories hope will pick up the slack.

The council is also planning to cut costs by privatising a number of

services. One of the 11 services facing privatisation is County Enterprise Foods, which provides meals on wheels. Under local authority control it employs local people and is a supported work­ place providing jobs to those who would otherwise find it difficult to find employment.

The council seems to view these services as part of big government and has therefore decided they must go. But this is an ideological approach, not a practical one.

I am not against the idea of growing civic society, encouraging and enabling the work of voluntary groups and charities. In former mining constituencies like the one I represent there are many examples of communities getting together to help themselves. They are run by and for the people and that is what makes them so responsive to the communities they serve.

But charities are also under attack from cuts. Framework, a Notting­ hamshire homeless charity, receives funding from the Council’s area based grant and provides housing, support, care and resettlement services. In the first wave of council cuts, the services provided by this prime example of the Big Society face an uncertain future.

The Big Society label is being used as a cover for cuts in national and local government provision and comes at a time when state support for the voluntary sector is under

20 | Open Mind November & December 2010

threat. My fear is that with a shrink­ing state and an unsupported third sector it is the most vulnerable in society who will suffer most.

Is using public money to help disabled people stay in work instead of claim­ ing benefits big government or big society?

Is providing day support for those with mental health issues big government or big society?

the big society

In search of the Big Society The concept of social action and shared responsibility is the only way to fix a broken Britain.

By Dr Dan Poulter MP

B

ritain needs to change We only have to look at the poverty, crime, high levels of substance misuse, and reduced life expectancy that exist in so many areas to realise that, until now, both people acting as individuals and the machinery of state intervention has failed some of the most vulnerable people in our country.

Traditionally, to tackle social problems, we have looked to self help or state intervention; but there is another way. As citizens, we have an inherent responsibility to each other, to look after each other, to demonstrate compassion and social responsibility. As individuals, we can

do more to support the disadvan­ taged and the vulnerable, and indeed more to help ourselves, by acting together, through what we call the Big Society.

I first met David Cameron in early 2006, when I invited him to visit the Seaview Centre in St Leonards-onSea: a social action project at which I volunteered at that time, looking after the homeless and people with drug and alcohol misuse problems.

David spoke then of the “victims of state failure,” people who had fallen through the net of the welfare state, who had hit rock bottom in their lives. At the Seaview Centre, local people identified a

need in their community and acted on it, giving of their time to support vulnerable people to begin the process of rebuilding their lives.

Across Britain we see that the concept of shared responsibility and social action already exists in organisations like Mind. However, we only have to look at the social breakdown that is occurring in so many of our towns and cities to realise that we really do need to “do it differently this time,” and that is where the Big Society can make a difference.

The Conservative –Liberal Government has committed to making this a reality, encouraging volunteering and involvement in social action. One of our key priorities will be to support the creation and expansion of mutuals, co-operatives, charities and social enterprises, and support these groups to have much greater involvement in the running of public services.

We cannot simply rely on the state to look after the vulnerable and to tackle the ills of modern society. The state alone has failed too many people in the past, and we cannot allow it to go on. We need citizens coming together and taking ownership of the challenges and problems in our communities and neighbour­ hoods; that is what the Big Society is all about.

research update

Supervised Community Treatment Simon Lawton-Smith

The Mental Health Alliance, of which Mind is a member, is currently monitoring the impact of the changes made in the Mental Health Act (MHA) 2007. In September it published a report on Supervised Community Treatment (SCT), one of the most controversial new powers in the MHA. Under SCT, certain patients subject to detention for treatment in hospital under the MHA 1983 may be given a Community Treatment Order (CTO) upon discharge. CTOs contain conditions that patients have to comply with, including taking their medication.

The report found that the Government significantly underestimated CTO use in the first year. Rather than the predicted 400 to 600 instances, data indicate that 4,000 CTOs were issued across England and Wales in the first year, and over 6,000 by 31st March 2010. The total number is likely to have risen to over 7,000 by the end of July 2010, with some 4,000 to 5,000 patients under a CTO at that date.

Of over 500 psychiatrists who responded to an Alliance survey, 325 thought that SCT powers were useful while 74 thought they had not been useful. Some clinicians are using SCT powers more than others.

The initial evidence suggests that SCT is allowing some patients to be discharged earlier, freeing up beds. However, the number of temporary or more permanent recalls of patients to hospital has led to extra pressure on beds, as beds are not being kept free for that eventuality but may be being closed or filled by new patients who were not previously admitted to hospital.

The evidence suggests that most people placed under a CTO are taking their medication. However, there is very little information about the impact CTOs have on the quality of care and treatment, and on the overall quality of people’s lives.

A number of concerns need further attention: • the introduction of SCT appears to be a significant factor in the increase in the overall number of people under compulsory treatment at any one time • CTOs are being disproportionately given to people from black and minority ethnic communities • CTOs are not always backed up with necessary community support • there have been significant delays in obtaining obligatory Second Opinion Approved Doctor (SOAD) approval to treatment with medication after one month of a CTO • there can be problems between hospital and community staff when drawing up patients’ CTO conditions and care plans.

22 | Open Mind November & December 2010

Find out more The full report is available for free download from www. mentalhealthalliance.org.uk

Write to us Have you been given a CTO? Have you issued a CTO? Write to us with your experiences at: openmind@mind.org.uk

welfare update

Welfare reform: getting the balance right

tom pollard

T

he Coalition Government’s zeal for reforming the welfare system and the ensuing issues around benefits for disabled people are of significant concern for Mind. We have long-held concerns about how the welfare system has dealt with people with mental health prob­ lems. From the effective abandon­ ment of people under incapacity benefit to the inaccuracy of the Work Capability Assessment (WCA), successive UK governments have failed to get the balance right. Mind believes that the right sort of work can be good for people’s mental health, but moving people back to work needs to be approached in a supportive manner and at a pace that is suitable for the individual.

Our key focus recently has been on Employment and Support Allowance (ESA) and the WCA which is used to decide eligibility for this benefit. We have been vocal about our concerns with the WCA – that it fails to accurately assess the extent or impact of mental health conditions. Unfortunately, the new Government seems as keen, if not more so, to continue with this system and to transfer existing claimants of incapacity benefits onto it as soon as possible. This fervent commitment to reforming the welfare system has also led to announcements of potential cuts in housing benefit and a new assess­ ment of eligibility for Disability Living Allowance (DLA).

Our current efforts are concen­ trated on trying to influence the Government’s policy in this area.

We have been engaging extensively with the Department of Work and Pensions as their plans take shape, through one-to-one meetings. We

have contributed to the Independ­ ent Review of the WCA through an individual submission and in partnerships with other charities and organisations. Mind’s Chief Executive, Paul Farmer, is also on the Scrutiny Panel of this review and will look to ensure that the needs of people with experience of mental distress are sufficiently considered as part of the process.

However, as more of the Govern­ ment’s plans are published, our campaign in this area will develop and we will be more proactive in our attempts to present a positive and constructive model for helping people with mental health condi­ tions to return to work, if they are able to do so. We will also be trying to counter the largely negative image of benefit claimants that is presented by parts of the media and the political establishment,

which has such a damaging impact on the vast majority of disability benefits recipients, who claim benefits because of genuine need.

Your views What are your views on how the Coalition Government’s welfare reform and how it will affect people with mental health difficulties? Let us know what you think: openmind@mind.org.uk.

If you would like to know more about Mind’s campaign in this area visit www.mind.org.uk.

media review

Tulisa: my mum and me (BBC3)

television nita devabhai

W

atching Tulisa: My Mum and Me was cathartic, reminding me of my journey as a carer for my mum who developed mental health problems over 24 years ago.

I found this documentary informa­ tive and thought provoking, and wished I had had access to some­ thing like this when I started caring.

Choosing Tulisa Contostavlos, member of the pop band NDubz, who has been a carer for her mother from a very young age, as the narrator of this documentary increases its appeal to young carers.

It has great potential to be shown in schools, youth clubs and other places where young people frequent, to raise awareness and discussions.

The documentary featured young carers and highlighted a range of

issues: the impact on their lives and studies, being bullied, self-harm, alcohol and substance abuse. They felt isolated and guilty when they had to think about their own needs.

Support exists through schools and carers centres but how many young carers are aware of these services and what happens in areas where there is no service provision?

Research shows that most carers see themselves as relatives or friends of the person needing support, and not as ‘carers.’ There are 80,000 young carers looking after a parent with mental health problems – a quarter of these are school children under the age of 16.

These statistics are based on those who have been identified as young carers. What about those who did not see themselves as carers, or remain hidden because they fear they would be separated from their families if they were identified? And

24 | Open Mind November & December 2010

what about young carers from marginalised and minority ethnic backgrounds who face additional hurdles?

Andy, a young carer featured, plans to join the navy and wants to put a safety net in place for his mother who suffers from depres­ sion. A charity worker he meets suggests a social care assessment.

Andy says that the family had been assessed in the past. But the assessment, instead of offering anything meaningful, had placed him and his brother on the ‘at risk’ register. Incidents like these can compound the pressures carers feel.

The strategy, Carers at the Heart of 21st Century: Families and Communities 2008, is currently being refreshed. It remains to be seen how young carers will be supported and where they would fit in the Coalition Government’s plans for the Big Society.

book review

The protest psychosis How schizophrenia became a black disease

books Suman Fernando

The protest psychosis. How schizophrenia became a black disease Jonathan M. Metzl Boston Massachusetts: Beacon Press, 2009 It is well known that ‘race’ has been directly implicated in psychiatric diagnoses – for example in the ‘illness’ called drapetomania, the illness of running away diagnosed exclusively among black slaves in nineteenth century USA.1 Racism then was acceptable and clear-cut; today it is unacceptable on both sides of the Atlantic but appears to persist in subtle forms – often termed ‘institutional’. This book from the USA offers new evidence on the nature of institutional racism and casts light on what may be going on today in the field of ‘race’ and diagnosis.

The author, a psychiatrist and academic, located his studies at Ionia State Hospital in Michigan, USA. He studied case records of patients who had been there in the 1950s and 1960s and interviewed staff who had worked there. Dr Metzl brilliantly analyses his findings against a context of reports about schizophrenia in psychiatric journals, images used in pharmaceutical advertisements, the way schizo­ phrenia itself was recast in the (American) Diagnostic and Statisti­ cal Manual (DSM) during the 1960s and 1970s and finally, and most importantly, the impact on the schizophrenia diagnosis of racial politics in the USA. The book’s title is taken from the title of a journal article that argued that signs of black protest were in fact symptoms of schizophrenia.

What Dr Metzl found was that the image of schizophrenia in mental health circles was transformed between the 1950s and 1970s from (being seen as) a psychological reaction and splitting of the functions of personality to one of a disorder of “masculinized belligerence.” Up until the early 1960s schizophrenia at Ionia was largely “an illness that afflicted nonviolent, white petty criminals, including … women from rural Michigan.” But by the mid-1970s “schizophrenia was a diagnosis disproportionately applied to …. [mainly] African American men from urban Detroit.” The context in which this transformation occurred was the civil rights movement and the consequent involvement of the psychiatric system to exclude from mainstream those black people who are seen as disruptive.

In his concluding chapter, Dr Metzl suggests that psychiatrists need to understand better the nature of diagnostic categories, such as schizophrenia, and develop what he calls “structural compe­ tency” in working with them. The descriptions of the author’s research and his commentary render this book an important contribution to race politics and the role of psychi­ atric diagnosis in western society.

On the whole the book is well written but sometimes a bit repetitious. The points made are illuminated by vivid narratives of individual experiences, thus ensuring that most of the book is highly readable. This is a book that should speak strongly to all mental health professionals but most of all (at least in the UK) to psychiatrists and social workers involved in sectioning people.

The book's title is taken from the title of a journal article that argued that signs of black protest were in fact symptoms of schizophrenia.

1. Cartwright, S. A. (1851) ‘Report on the diseases and physical peculiarities of the Negro race’, New Orleans Medical and Surgical Journal, May, 691–715. Reprinted in A. C. Caplan, H. T. Engelhardt and J. J. McCartney (eds.), Concepts of Health and Disease, AddisonWesley, 1981, 305–25

excerpts from mind's blog

What people are saying... ...about diagnostic labels

“

weirdartist:

Sunflower:

I was wrongly diagnosed with bipolar disorder last summer. The psychiatrist examined me for a total of 2 minutes before telling me that he would have to put my medication up by 5 times the dose I was on. I fought this labelling rigorously with the help of my GP who insisted that I had had a psychotic episode as part of a nervous breakdown.

A year later I am on minimal medication and working full time again. I don’t think the level of concentration required in my job would have been possible at the dose he suggested… If I had allowed this man’s view to go unchallenged I would have been medicated heavily for life.

”

I am really grateful for having a diagnosis of depression and anxiety. It allows me to explain to other people how things affect me and short-cuts the misunderstanding others might have of my behaviour... E.g. I am very lethargic, so it takes me a long time to do housework on my bad days. Usually I would be accused of being lazy, messy or disorganised, but when I explain I am working on that pile of washing, it is just taking me a while today because of my illness, I find I get a more positive response…

I feel more able to do things because I am not racing about feeling guilty that the place is not perfect, I can take my time doing each job to the right standard…

Beki: "I knew I had depression but to be labelled with BPD has been very frustrating for me. I do feel I'm treated differently because of it, and that is a barrier to getting much needed help for my depression" IrishGirl: I was tentatively given a diagnosis of BPD at the age of 42 last year. This was after a lifetime of cycles of breakdowns and recoveries which resulted in a turbulent life and relationships. Although a shock at the time, the positive attitude of my GP and therapist helped me to see in the symptoms a way of understanding the more extreme reactions and behaviours which had led to problems in maintaining employment over a long period of time… … Any positive steps forward began with the recognition of the groups of symptoms which identified for me and those helping me the condition I am suffering from and learning to manage. It has not been a negative experience. However, among others, including my own family, there is a clear fear of a condition that is not widely understood or even recognised.

For me it has been a relief to name and face the demons that I have battled all my life.

26 | Open Mind November & December 2010

“

Rae:

I have suffered from certain psychotic symptoms periodically for the last 6 years. I have never really been given a definite, well-considered diagnosis despite being admitted to hospital in the past. …my instinct is to classify, to understand, and to recognise similarities in others – some sense of community and empathy. That is why, despite the stigma and the inaccuracy of these labels, I would choose to have something to call my experiences, something to help others understand.

“

cass:

” ”

… I believe you yourself can truly know and keep note of how you feel each symptom and to what extent so you can come to a balanced conclusion and don’t let it worry you what you get labelled with. I’ll just work on feeling better and dealing with each symptom.

next issue

Next issue In the next issue, Open Mind will be focusing on welfare reform. Below is a taster of what people are saying about it on Mind’s blog post.

A Mind supporter: ”Years ago my brother took his own life during a bout of depression triggered by pressures in his working life. I have also battled with anxiety and depression and whilst acknowledging the benefits of work, I have personally found it very difficult to cope for any length of time in a whole range of salaried and voluntary jobs. The ‘work is good for you’ propaganda has not helped me overcome my fear of not being able to cope, letting people down or being bullied again.

With further job losses on the horizon and increased feelings of insecurity, now is a very good time for Mind to be focusing on wellbeing in the workplace, but a very bad time for our government to be coercing people with debilitating mental and physical illnesses into looking for work. There is simply far too much competition for jobs and not enough flexibility or professional support. Whilst anti-discrimination campaigns are very important and will help increase opportunities for people with disabilities, equality is a long term aim and there will always be a part of our society not well enough to sustain employment. … I am deeply troubled by the notion of people being driven to despair by the irresponsible actions of our government and their medical provider.”

Read more on what people are saying on welfare and benefit reform at www.mind.org.uk/blog/filter/ benefits and welfare. Write to us with your views: openmind@mind.org.uk.

Invaluable information Mind Publications provides an extensive range of resources on mental health related issues.

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Bestselling titles include: Sectioned: a life interrupted John O'Donoghue's account of the breakdowns that have punctuated his life is insightful, inspiring and often humorous, and won the 2010 Mind Book of the Year award.

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DVDs and other resources Mind Publications offers a wide range of DVDs which are ideal for personal or training purposes, covering such topics as self-harm, dual diagnosis, stigma and personality disorders.

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