Diagnosis of mental illness: helping or hindering recovery? |
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| Monday, 16 May 2011 |
In the second of her series looking at some of the current and controversial issues facing those on their journey of recovery, mental health communicator Heidi Tweedie explores the question of diagnosis and how it can help or hinder recovery. There's also a chance to have your say in our diagnosis poll.
 “I had been trying to find out what was wrong with me for years. I wanted to put a name… to it. I could then look to the possibility of recovery.” For many individuals like this HUG member (quoted from HUG’s 2009 report on diagnosis), an important initial step in recovery from mental health problems is to gain a diagnosis. Equally, many others describe the most challenging element of their recovery journey being a need to overcome their diagnosis. “I had heard other people talk about how stigmatised Borderline Personality Disorder (BPD) was, but I really did not believe them. But it was shocking to be treated differently one day from the next.” Judith Glasier has had more diagnosis experience than most, having collected over five separate diagnoses since her late teens. “After years of suffering I did some research and self-diagnosed BPD. Nobody seemed to know what was wrong with me, so I gaily went along to my psychiatrist and told him my findings and he agreed. Initially I thought gaining this diagnosis was great as I felt I really suited the criteria and it felt like what was wrong with me was suddenly ‘real’. Sadly the stigma started overnight.” This limiting stigma seems to come from the lack in understanding an individual’s needs beyond their diagnosis. “BPD used to be a diagnosis of exclusion – it was the one you were left with once you exhausted other possibilities,” explains Dr Michael Smith, Clinical Director Adult Mental Health Services NHS Greater Glasgow and Clyde, and representative of the Scottish Division of the Royal College of Psychiatrists. “We have come a long way with this in the last ten years; learning and moving forward by collaborating with the individuals affected.” Indeed psychiatrists may have been reluctant to give this diagnosis in the past due to a lack of treatment options, but with recent research the fate of BPD is changing, and it is not alone.  Psychiatry has a fascinating and controversial history – changes in psychiatric thought often parallel changes in society and public opinion. For example, the significant removal of homosexuality as a mental disorder from within diagnostic texts such as the International Classification of Diseases (ICD) in 1990, and the American Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1973. Debate continues to rage as these texts are updated. The DSM is currently in review stage for its fifth edition and is being criticised for its use of descriptive psychiatry. This categorical approach – currently used in diagnosis both here and in the US – is felt by some to use criteria for many psychiatric diagnoses that are vague and arbitrary, leaving it too open to interpretation. However, abandoning this method has many issues as Michael Smith explains, “Linking different peoples’ experiences with a categorical approach allows us to see patterns and make comparisons. This helps to make sense of illness, and supports the development of more effective treatment options. But equally it’s not like classifying butterflies; you can’t just put people in boxes; humans are far too complex.” Additionally, as scientific techniques and understanding develops, debates on classification of illness are beginning to be resolved. Recently genetic researchers challenged the distinction between schizophrenia and bipolar disorder, finding they had many linked elements where as previously it was thought they were distinct, separate illnesses. Add to this the increase of individuals diagnosed with more than one mental disorder and you can see why current categorical diagnosis requires constantly reviewed and challenged. These controversies and changes in diagnostic practice in turn affect those using psychiatric services. Chris O’Sullivan, a mental health activist and blogger with a decade of experience working in mental health policy – work informed by his own experience of mental ill health – shares his view, “Mental health services vary in that there can be inconsistency in diagnosis between areas, or even staff within a location or team; it’s very dependant on who you see and what services are available in that area. Where this differs from other areas of healthcare is that so much of psychiatry is based on clinical judgement rather than empirical tests. Mental health professionals should always balance this responsibility with consistency.” Many services are set up to support individuals with specific diagnoses, as Judith Glasier found out to her benefit, “Without the diagnosis of BPD I would not have been able to access Dialectical Behavioural Therapy which has saved my life.” Conversely, with a change in diagnosis, other resources were not as accessible to her, “Previously I was able to go to hospital and be admitted when in crisis but now I was turned away! If my diagnosis had remained unchanged I would have received the care and support I needed and be on my way to recovery.”  Rag Tag n’ Textile, a social enterprise based in Skye and Wester Ross, works with individuals who are in recovery from mental health problems and uses a system of both self and professional referral to get around the issue of service dependence on diagnosis. Cindie Reiter, Business Director at Rag Tag n’ Textile, explains, “It’s key to us that everyone feels welcome at Rag Tag n’ Textile and that they understand that they leave diagnosis at the door; we are interested in them as people not as a diagnosis.”This presents its own issues, especially financing the project - referrals bring in funding but self-referrals do not. Services based on need and experience rather than diagnosis are on the increase but the issue of having to put people in to boxes for the sake of monitoring and fund access does not sit easily with recovery-based practice. As Cindie explains, “People are not measurable statistics; everyone is an exception to the rule. Some people want a diagnosis and some don’t due to the stigma. Nobody can tell who is here with a diagnosis and who is not, and that is really important to us and how we work to support recovery.” “Diagnosis is not the end but the start of the discussion,” emphasises Michael Smith, also a member of the See Me management group, “A good psychiatric consultation requires accurate diagnosis, but also listening and a doctor who can make sense of your story.”  Dr Linda R. Treliving, Consultant Psychiatrist in Psychotherapy at Royal Cornhill Hospital Aberdeen, and conference chair of the Scottish Personality Disorder Network, gives her view, “The actual diagnosis has to have meaning to the person, it has to make sense to them. I don't think a diagnosis of mental illness comments on a person’s worth, integrity or identity any more than a diagnosis of diabetes or arthritis would. People should not experience discrimination or exclusion from help.” Figures on stigma are not so positive, with the 2006 See Me survey ‘Hear Me’ finding 81% of people surveyed experiencing stigma increasing to 94% for those with a BPD diagnosis.Clearly open dialogue with psychiatrists is key to using a diagnosis positively, but what if you feel it’s time to remove that label? Ten years on from his diagnosis Chris O’Sullivan questions whether Bipolar is right for him, “I’ve not had any episodes for almost all that time and I want to change this. The only thing I have of that time is a ghost of the diagnosis.” Judith Glasier echoes Chris’ sentiment, “I feel burnt out by it; I’m working hard on my recovery and my diagnosis of BPD is holding me back.” Ultimately a diagnosis is simply words linking an individual to treatment options that will support them in recovery and managing symptoms. Unfortunately, even within the world of psychiatry, these powerful words are loaded with decades of stigma. Clinical psychiatry does move on, changing with scientific advances and societal expectations. However, public opinion lags behind, and sadly it’s not just the general public who continue to hold stigmatised views based on misunderstanding and old information. As the 2009 HUG report on diagnosis emphasises, “Being given a diagnosis of a mental illness can be both a relief and a huge blow.” In an effort to understand more about recovery from long-term mental health problems and to contribute to new evidence that emphasised lived experience, in 2005 SRN travelled across Scotland interviewing people about factors that help and hinder recovery. In 2007, we published the findings in ‘Recovering Mental Health in Scotland’. Find out more about SRN’s Narrative Research Project and take part in our poll on diagnosis and recovery below. Comments (5)
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written by Steven Coles, May 25, 2011
People have a range of distressing experiences and life circumstances, however, diagnosis does not do justice to people's experiences. It is essential that we use more meaningful and personally informed ways of understanding and supporting people. Diagnosis claims scientific credibility but does not have any. It labels people as disordered and ignores the difficult life experiences people have faced and often continue to struggle against. Services could and should be arranged around people's personal needs and circumstances. For further discussion see www.jacquidillon.org/1703/blog...diagnosis/
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written by chrys muirhead, May 22, 2011
A group of Clinical Psychologists working in East Midlands Adult Mental Health Services have looked at the issue of psychiatric diagnosis and written a position paper (Coles & SPIG, 2010). They conclude that “psychiatric diagnosis does not meet its scientific and expert claims” and does not deserve to be so dominant in mental health services:
http://dcp-sigpr.bps.org.uk/publications-&-documents/publications_home.cfm
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written by T, May 21, 2011
No. Maybe yes if I had a diagnosis where medication was a mainstay, or I'd received the diagnosis differently, with an explanation of it and how it 'matched' me. I've had experiences, as in the article, where my diagnosis has been used to deny services, and professionals who'd known me for years changed their attitude to me overnight. It feels as if any contact with services is viewed through diagnosis-tinted spectacles - "Please help me understand" becomes symptomised as "challenging". How I am, often feels interpreted by assumptions rather than by actively listening to me. The most helpful people to me in my journey are those who either remember the "well me" (friends) or look at "me the person" first before my label (e.g. my GP) - fitting with the uniqueness within the recovery definition? Diagnoses may be a useful "short-hand" between professionals, but should access to services (like DBT above) be diagnosis-dependent or based on an assessment of an individual and their needs?
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written by Alan, May 20, 2011
Diagnosis: mmm, a problematical thing for me. It would be fine if indeed it were a start point for discusion but I find it is simply used as the seal (label) by which to entrap people. In fact, my guess is that until the psychiatric doctor can come up with a diagnosis they proably feel they haven't done their job properly. Or even that without one they leave themselves open to critisism (which would never do, oh no!). So for me, the whole diagnostic procedure reeks of systematic complacency. If it went hand in hand with the 'listening' and talking things through then that would help but to my mind it is the sole end-point for many practioners and thus the focus for the stigma. Which is sad really because as the article says it's just words and could be used in a much more constructive fashion than it has been in my case. Thanks.
... written by John Sawkins, May 20, 2011
Does a label help or hinder recovery? I remember my dilemma when deciding whether to embrace my "bipolar" label (after all, it's almost fashionable nowadays!) or to reject it. To be honest, I seem to vacillate between laying claim to the label when it is expedient or suits me, to disputing the fact that I've ever suffered from a psychiatric condition at all: but then, why would I have been detained in hospital and given haloperodol? I could now cheerfully jettison the label and continue to function as a "normal" member of society; but I would feel that I was letting down my fellow-sufferers if I did not continue to remain there as a living example of someone who has recovered.This is the reason I make contributions to various support groups.
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