Do you still need your psychiatric diagnosis? The answer for practical purposes is probably ‘Yes.’ In the current system, diagnosis is essential for accessing services and benefits and, particularly in the USA, for covering your treatment costs. But do you need to believe in your diagnosis? Do you have to accept this particular attempt to explain your difficulties, and to take it on as part of your identity by becoming one of the ‘mentally ill’? In the words of the blurb for my book, one of the ‘Straight-talking introduction to….’ Series, which has just become available for pre-order in the US via Amazon.com:
A revolution is underway in mental health. If the authors of the diagnostic manuals are admitting that psychiatric diagnoses are not supported by evidence, then no one should be forced to accept them. If many mental health workers are openly questioning diagnosis and saying we need a different and better system, then service users and carers should be allowed to do so too. This book is about choice. It is about giving people the information to make up their own minds, and exploring alternatives for those who wish to do so.
— ‘A Straight Talking Guide to Psychiatric Diagnosis,’ Ross-on-Wye, PCCS Books
As far as I am aware, this is the first book to provide a concise, accessible and reasonably affordable summary for service users, carers and others which:
- Summarises the complex debates for and against psychiatric diagnosis
- Looks at the impact of psychiatric diagnosis at every level from the individual upwards
- Outlines the alternatives to diagnosis, which in essence come down to various versions of finding your own story
- Supplies lists of reading, resources and organisations which can help you to think about alternatives to diagnosis if you decide to do so. This includes the websites and blogs of many MIA contributors, including Laura Delano, Jacqui Dillon, Rachel Waddingham and Rufus May.
In the book, I’ve been very open about my own position: I am opposed to the use of psychiatric diagnosis (with obvious exceptions for conditions such as dementia) at all. But it’s not going to go away overnight, and I recognise that many people experience it as helpful, at least in some ways. I also recognise that it is never easy to question fundamental aspects of our assumptions and identities, even if they have caused us pain. Many of the accounts I have quoted testify to this.
However, in the current state of conflict, controversy and crisis in psychiatry, I do not believe it is professionally, scientifically or ethically justifiable to present psychiatric diagnosis to service users and carers as an undisputed fact or truth. The Chair of DSM IV, Dr Allen Frances, has described the manual as ‘deeply flawed and scientifically unsound’ and the Chair of DSM 5, Dr David Kupfer, has admitted there are no biomarkers to validate the categories; a former NIMH director has described DSM as ‘totally wrong, an absolute scientific nightmare’ while the current one confirms that its categories ‘lack validity’; and NIMH has embarked on a massive project to re-write the diagnostic manuals from scratch. How can any professional think it is acceptable to conceal these vital debates from service users and carry on as before?
The first part of the book explains what we mean by diagnosis and takes the reader through some of the arguments for and against applying this model in mental distress. It tackles some common questions such as ‘So what is the role of medication if you don’t use diagnosis?’ and ‘Surely you need to categorise things somehow?’ It then moves on to discuss the personal impact, positive, negative and mixed, of receiving a diagnostic label. This is placed in the context of service responses, social consequences, and the wider role of psychiatry.
One of the most important aims is to find a midway between two polarised positions that have been described as ‘brain or blame’.1 This refers to the difficulty that we seem to have as a society in finding ‘a middle ground between “You have a physical illness, and therefore your distress is real and no one is to blame for it” and “Your difficulties are imaginary and/or your or someone else’s fault, and you ought to pull yourself together”’ (p.2.) There are descriptions of the emerging alternatives to the diagnostic tradition, including constructs, narrative approaches and psychological formulation, which can provide non-blaming and constructive ways forward.
In the second half of the book, I am indebted to a number of former service users who have given me permission to use their powerful and moving accounts of how they eventually came to discard their diagnoses, sometimes with help from within services and sometimes through outside organisations and agencies. There is a comprehensive list of strategies, reading and resources for those who may wish to pursue this path themselves. Comments from readers include: ‘The book helps me to make more sense of what happened when I was in the mental health system, while giving me a renewed sense of hope and optimism in my recovery journey. If I had a book like this 6 years ago, it would have saved me a lot of trauma and time spent in trial and error. It would have speeded up my recovery.’ There is a review by Dr Phil Hickey on his website, Behaviorism and Mental Health.
Psychiatric Diagnosis and Choice
Informed consent is expected for most medical interventions, so that people can make meaningful decisions about their healthcare; for example, whether or not they want to have a particular operation or take a particular medication. I believe it is time for people to have the chance to make an informed decision about whether to accept, or at least whether to believe, a psychiatric diagnosis with all its subsequent consequences, both useful and damaging. To pursue the drug analogy, I would also argue that services should be offering support to help psychiatrically-diagnosed people to ‘come off’ or ‘withdraw from’ their diagnosis, if they so wish. I envisage something along the lines of the survivor-led groups described by Jacqui Dillon and Rufus May in which ‘people have the opportunity of reclaiming their experience in order to take back authorship of their own stories . . . finding a space where one can tell one’s story, discover one’s truths and explore possible ways forward’.2
How near are we to achieving this state of affairs? When I and colleagues presented at the American Psychological Association Annual Conference last August, we were flattered but somewhat surprised to be told that the UK is ‘so far ahead’ in its critiques and alternatives. It certainly doesn’t always feel like that. Nevertheless, there are hopeful signs. The recent Division of Clinical Psychology (subdivision of the British Psychological Society) report ‘Understanding Psychosis’, edited by Anne Cooke and co-authored with 25 professionals and service users, has been widely welcomed – by, among others, the Rt Hon Norman Lamb, Health Minister, and psychiatrist Dr Geraldine Strathdee, the National Clinical Director for Mental Health (free download from www.understandingpsychosis.net). This is extremely encouraging, given that the theme of the report is choice about aspects of mental health care that have until now been seen as unquestionable. The executive summary states that ‘Professionals should not insist that people accept any one particular framework of understanding –for example, that their experiences are symptoms of an illness’ (p.6) and the report has a section exploring the pros and cons of seeing your difficulties in diagnostic terms (pp 17-28.) This is in keeping with the message of other Division of Clinical Psychology reports such as the one on ‘Bipolar disorder’: ‘Services should not insist that all service users see their problems as an “illness” and take medication’ p.8.
The ‘choice’ and ‘informed consent’ argument is a strong one, because it is hard to argue against it without sounding authoritarian and paternalistic. Indeed, the ‘choice’ rhetoric has shaped services in both the UK and the US for decades. But choice about diagnosis exposes psychiatry as something fundamentally different from legitimate branches of medicine, in which it would be ridiculous to say ‘This meets the diagnostic criteria for cancer, but we can describe it as pneumonia or a stress reaction if you prefer.’ Since ‘diagnosis is the Holy Grail of psychiatry and the key to its legitimation’,3 offering choice about diagnosis strikes at the foundation of the theory and practice of traditional psychiatry, and reveals its essentially unscientific nature.
There is, of course, another way of looking at the issue – which is that since psychiatric diagnoses have been admitted to be non-valid even by the people who drew them up, professionals should not be offering people the ‘choice’ of describing their difficulties in diagnostic terms in the first place. That would still leave people with the right to adopt whatever explanation suits them as private individuals – as they are free to do in general medicine. Someone diagnosed with cancer is perfectly at liberty to believe that it is caused by negative thinking, or overuse of mobile phones, or spirit possession, or anything else that is not accepted by current research. They will not be labelled as ‘lacking in insight’, forced to undergo treatment, and assigned a devalued and stigmatised identity against their will. However, we expect doctors to abandon concepts like wandering wombs, or railway spine, or scrofula, or apoplexy, or green fever, that have not been validated by the evidence. Anything else is folklore, not science.
But that is a bigger question. At present, it is hard to disagree that offering people an informed choice whether to accept or reject a psychiatric label is the only honest and humane way forward. I hope this book will be a contribution to that process.
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- Boyle, M (2013) The persistence of medicalisation. In S Coles, S Keenan and B Diamond (eds) Madness Contested: Power and practice. Ross-on-Wye: PCCS Books.
- Dillon, J & May, R (2003) Reclaiming experience. Openmind, 120, 16–17.
- Kovel, J (1980) The American Mental Health industry. In D.Ingleby (ed) Critical Psychiatry: the politics of mental health pp. 72-101. Harmondsworth: Penguin