October 24, 2006
The diagnosis of schizophrenia is unscientific and damaging to those to whom it is applied, argue Marius Romme and Paul Hammersley, both part of a new campaign entitled CASL (Campaign to Abolish the Schizophrenia Label). They say we should replace it with post-traumatic psychosis
The idea that schizophrenia can viewed as a specific, genetically determined, biologically driven, brain disease has been based on bad science and social control since its inception.
Read (2004) lists a fundamental dissatisfaction with the concept of schizophrenia as an illness that can be traced back over 80 years. More recently Bentall (1990, 2003), and Boyle (1990) have published elegant, well researched arguments clearly demonstrating that the concept of schizophrenia is neither valid nor reliable. Despite this, mainstream psychiatry continues to perpetuate the myth that when talking about ?schizophrenia? we are discussing something that actually exists. For example, the opening statement of the National Institute for Mental Health public information website in the USA reads as follows: ?Schizophrenia is a chronic and severe disabling brain disease?. As Read (2004) points out, such an opinion is common in psychiatric textbooks and drug company pamphlets. The CASL campaign is driven by two central factors:
* The concept of schizophrenia is unscientific and has outlived any usefulness it may once have claimed.
* The label schizophrenia is extremely damaging to those to whom it is applied.
For a diagnosis to have any clinical utility it must be reliable. That is to say there must be consistency in how individuals are diagnosed. There is no evidence that this has ever been the case with schizophrenia. Read (2004), has illustrated how it is possible for 15 individuals with nothing in common to be gathered together in one room and all be diagnosed with schizophrenia. Test- retest analysis is as low as 37% and in 1970 when 194 British and 134 American psychiatrists were asked to provide a diagnosis on the basis of a case description, 69% of the Americans diagnosed schizophrenia whilst only 2% of the British did so. There is no definitive evidence to suggest that the reliability of the diagnosis has improved since that date.
An unreliable diagnosis cannot by definition be valid. However it is worth pointing out quite how poorly the diagnosis of schizophrenia performs in terms of validity. Firstly, a diagnosis of schizophrenia tells us nothing about cause. Biological research into cause offers little more than a series of dead ends (Bentall 2003, Read 2004), and the significance of genetic inheritance in schizophrenia has been vastly overstated and is seriously methodologically flawed (Joseph 2004). Secondly, a diagnosis of schizophrenia tells us nothing about prevalence rates. It is often blandly asserted that schizophrenia has a prevalence rate of 1% in all societies. This is not true; there is a wide disparity of prevalence between rural and urban environments and different research has shown prevalence rates of between 0.33 and 15%. In addition a diagnosis of schizophrenia tells us little about the course of the illness. Kraepelin initially suggested that schizophrenia was a chronic deteriorating condition in all cases. We now know that all outcomes are possible from chronicity to complete recovery.
To be labelled ?a schizophrenic? is one of the most devastating things that can happen to anyone. This label implies dangerousness, unpredictability, chronic illness, inability to work or function at any level and a lifelong need for medication that will often be ineffective (Whitaker 2005), but will usually cause unpleasant side effects. To champion the idea that schizophrenia is an illness just like any other (sometimes referred to as mental health literacy) makes the situation worse, in that it has been shown to increase amongst other things mistrust and a desire for social distance (Read et al in press).
The desire of our campaign to place the label ?schizophrenia? into the diagnostic dustbin in which most certainly belongs is not therefore based solely on the poor science that surrounds it, but also on the immense damage that this label can bring about. A single word can ruin a life as surely as any bullet and schizophrenia is just such a word.
There is hope. In 2002 in order to remove the stigma and prejudice associated with the term schizophrenia, The Japanese Society of Psychiatry and neurology renamed the condition. Their reasons were that the old term ?Seishin Buntreyso Byo? (mind- split disease) was ambiguous, had purely negative connotations and was in part related to the inhumane treatment of most people who carried the diagnosis (Sato 2006). The new term is ?Togo Shitcho Sho? (Integration disorder). It is defined not as a specific illness, but as a syndrome based on a stress vulnerability model, with many different causes, symptoms and outcomes. This change was brought about largely by lobbying from service users and family groups, and has been welcomed by service users and families alike.
Alternatives already exist. Given the high levels of trauma in the lives of individuals who experience psychosis (Read et al 2004, Hammersley et al 2003) one of us (Marius Romme) has for a number of years called for a new diagnostic category of post-traumatic psychosis. Colin Ross in the United States has made a similar call for a category of Dissociative Psychosis.
The CASL campaign began as collaboration between The COPE Initiative at the University of Manchester and The Hearing Voices Network UK. We will attempt to build a broader coalition of service users groups and like-minded professionals, with the aim of bringing a more coherent and humane diagnostic system to service users worldwide.
We do not intend to go away.
* Marius Romme is a visiting professor at the Mental Health Policy Centre, University of Central England in Birmingham. He was a professor for social psychiatry at the Medical Faculty of the University of Maastricht (Netherlands) from 1974 to 1999, as well as consultant psychiatrist at the Community Mental Health Centre in Maastricht.
* Paul Hammersley is programme director for the COPE (Collaboration of Psychosocial Education) Initiative at the School of Nursing Midwifery and Social Work at Manchester University.
1. Bentall, R.P. (1990). Reconstructing schizophrenia. Routledge.
2. Bentall, R.P. (2003). Madness Explained. Allen Lane. Penguin Books.
3. Boyle, M. Schizophrenia: A Scientific delusion. Routledge. UK.
4. Joseph, J. The Gene Illusion: Genetic Research in Psychiatry and Psychology Under the Microscope. Ross-on-Wye. PCCS Books.
5. Hammersley, P.A., Dias, A., Todd, G., Bowen Jones, K., Reiley, B Bentall, R.P. (2002). Childhood trauma and hallucinations in bipolar affective disorder: A preliminary investigation. British Journal of Psychiatry, 182, 543-547.
6. Read, J, Mosher, L.R. & Bentall, R.P. (2004). Models of Madness. ISPS Publications.
7. Sato, M. (2006). Renaming schizophrenia: A Japanese Perspective. World Psychiatry, Feb, 5, 1, 53-55.
8. Whitaker, R. (2004). The case against anti-psychotic drugs: a 50-year history of doing more harm than good. Medical Hypotheses., 62, 5-13
Gaining access to treatment is the only virtue of (any) psychiatric diagnosis
Comment from: Phil Barker, Professor of Health Sciences, Trinity College, Dublin, Ireland
Date: October 30, 2006
I wish Marius Romme and Paul Hammersley every success in their campaign to abolish 'schizophrenia'
However, I wonder if - in a couple of decades time - the 'alternatives' will have assumed much the same stigmatising power as the old 'label'. This is not so much about the validity or reliability of a medical diagnosis, which has been found wanting, from all kinds of perspectives for over forty years, but one about 'meaning'.
People - whether professional or lay - attribute certain meanings to diagnostic labels. Changing the labels may be an interesting linguistic project but may not seriously address the underlying issues.
The 'big question' in my book is - "why do we have to assign diagnostic labels in the first place?" When one condenses all the available evidence, the only thing we can be certain of is that some people are characterised by this or that - or these or those - features. These features are rarely, if ever, constant, but come and go as part of the person's lived experience. This applies as much to me as any 'schizophrenic' or "person with dissociative psychosis". As far as I can see the only virtue in attributing a diagnosis is to gain access to medical treatment.
I believe that the kind of problems, previously named 'schizophrenia', are human (not medical) problems, and require human solutions. I would have hoped that an outfit like the Hearing Voices Network would be in sympathy with such a view and would not be chasing name-changing, which is more of a cosmetic than a fundamental form of address of such 'human problems'.
Replacing one label with another is no answer
Comment from: Maureen Eldred, carer
Date: November 16, 2006
Replacing one stigmatizing label with another is not the answer. People are individuals and their human problems should be addressed humanely on an individual basis, rather than a 'one size fits all' basis in the case of psychiatric labelling.
Foolish to rename
Comment from: Sarah Yates, service user, Cambridge, UK
Date: June 28, 2007
Schizophrenia is a heterogeneous group of disorders, with a variety of causes, some of which may overlap. There is no more evidence 'schizophrenia' is caused by post-traumatic stress than there is evidence it is genetic, autoimmune, toxic or parasitic. Indeed, having read the scientific literature, there is probably less. Since the causes of the schizophrenias remain to be eludiated it seems foolish to rename these disorder with a label suggesting causality is understood.
How to get undiagnosed?
From Gabrielle Bryant, USA.
Date: May 25, 2009
Abolish schizophrenia? This makes sense! Because the schizophrenia label is so flawed. It might help people associate with their symptoms better, instead of exaggerating their worries. It is not 'split mind' 'cancer of the mind' and you can recover from psychotic episodes. To be told again and again by mental health practitioners that you have to be on meds for the rest of your life is also a big concern. In changing the label it might offer better solutions.
Schizophrenia also warrants abuse in mental health systems. While other people can be stuck in a hospital but they can refuse meds, with schizophrenia label you will be kept longer and not be allowed to refuse medications. Medications are not the end-all solution. They should be a last resort, not a first...so should the word schizophrenia. I don't want to carry this label to my death, and how do you get in-diagnosed? I was diagnosed for other things than voices or seeing things. Then they developed after a few years as a response I believe to what I read. Now they're gone for good. It's all very psychological. Meds can give you that comfort, but I was astounded at how well I was doing and that I 'differed' from all the others. Well, I don't think I ever was schizophrenic. In fact, no one is. People are just people...there is no such thing as a 'schizophrenic mind'
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