Campaign for the Abolition of Schizophrenia Label by Paul Hammersley and Terence McLaughlin

This campaign is no longer active, but it ran. 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. If the scientific argument against `schizophrenia’ is judged to be won, it remains to take the evidence to the people, to explain and develop the alternatives in the full light of day. 

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This is why the campaign is led by Asylum, the magazine for democratic psychiatry, psychology, education and community development. We believe the time is fully ripe for a paradigm shift across the field of mental distress and that the alternative knowledges and resources are now in place to mobilise for change. No more will we view the scandal where intelligent persons are expected to accept discredited diagnoses for fear of being labelled as `lacking in insight’ and having treatment forced on them.

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 NIMH 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:

1) The concept of schizophrenia is unscientific and has outlived any usefulness it may once have claimed.

2) The label schizophrenia is extremely damaging to those to whom it is applied.

 

Reliability

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.

 

Validity

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. Interestingly Marius Romme, the Dutch Psychiatrist, has argued that those most likely to make a complete recovery are individuals who reject or drop out of the psychiatric system.

 

Stigma

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.

Sincere attempts have been made to rescue the word for humanity (Jenner et al., 1993) yet we have had to conclude that the continuation of the concept serves only the greed of Big Pharma in the pursuit of producing yet more `magic bullets’ The desire of our campaign to place the label ‘schizophrenia’ into the diagnostic dustbin, in which it most certainly belongs, is not 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.

 

Japan abolishes schizophrenia?

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

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) Professor Marius Romme in The Netherlands 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.

Yet alternatives also exist outside the language of psychopathology (Parker et al, 1995; Romme and Escher, 2000). In recognising the role of language and being prepared to make a practical deconstruction of what it produces (in this case forms of pathology) is taking one step in enabling communities, through self help networks, to regain control and ownership of human experience.

Romme and Escher have remained particularly faithful to the contribution of knowledge of `experts by experience’ and we remain firmly convinced that the future health of communities lies largely in the hands of organisations like the Hearing Voices Network and new initiatives like the Paranoia Network and depressiondialogues.

The hope and promise of radical change is not something to be relegated wistfully to a bygone age but is firmly on the agenda today (McLaughlin, 2003). Furthermore growing alongside CASTL is a widespread enthusiasm to form a European Association for Democratic Psychiatry as the mechanism to bring about decisive change in public policy, media activity and social attitudes.

The CASL campaign began as collaboration between The COPE Initiative at the University of Manchester , the Hearing Voices Network and supporters of Asylum magazine (Asylum Associates). We are working to build a broad 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. Yet it is more than that. We are looking to a future when we can talk less of the associations for democratic psychiatry and more of the International Association for Democratic Communities.

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References

Bentall, R.P. (1990). Reconstructing schizophrenia. London : Routledge.
Bentall, R.P. (2003). Madness Explained. Allen Lane . Penguin Books.
Boyle, M. Schizophrenia: A Scientific delusion. London : Routledge. UK .
Jenner, F.A., Monteiro, A. C. D., Zagallo-Cardoso, J. A. and Cunha-Oliveira, J. A. (1993) Schizophrenia: A Disease or Some Ways of Being Human. Sheffield : Sheffield UP.
Joseph, J. The Gene Illusion: Genetic Research in Psychiatry and Psychology under the Microscope. Ross-on-Wye. PCCS Books.
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.
McLaughlin, T. (2003) `The view from democratic psychiatry.’ European Journal of Psychotherapy, Counselling and Health 6(1) 63-66.
Parker, I, Georgaca, E, Harper, D, McLaughlin, T and Stowell Smith, M (1995) Deconstructing Psychopathology London : Sage .
Read, J, Mosher, L.R. & Bentall, R.P. (2004). Models of Madness. ISPS Publications.
Romme, M. and Escher, S. (2000) Making Sense of Voices: a guide for mental health professionals working with voice-hearers. London : Mind
Sato, M. (2006). Renaming schizophrenia: A Japanese Perspective. World Psychiatry, Feb, 5, 1, 53-55.
Whitacker, R. (2004). The case against anti-psychotic drugs: a 50-year history of doing more harm than good. Medical Hypotheses, 62, 5-13
FIRST COMMENTS

Marius Romme Emeritus Professor of Social Psychiatry:
“We have known for quite some time that the concept of schizophrenia has no scientific validity. We now however have an alternative which is more helpful. It is time to challenge the old concept and leave it behind.

The old concept is harmful because, it is impossible to solve the problems of the patient diagnosed with this illness. We now not only know that the symptoms exist and the illness does not, but we now know more about where the symptoms come from. It is a false suggestion that the symptoms are the result of an underlying illness. The symptoms are partly a reaction to serious problems in the life of the person and partly a reaction towards other symptoms. Therefore attention should be given to the reality for the patient of his /her complaints and the background for each of them should be explored. Only then do we discover what the problems for the patient are, and only then we might be able to help solve those problems. When for example hearing voices is the complaint related to a serious problem in the person’s life and the explanation of the person is that it is the voice of God, this can be a reaction on hearing that voice as an explanation. This in itself is not a symptom but a reaction to the strange overwhelming voice often with the metaphoric meaning of a needed spiritual power or a father figure, wanted or feared”.

Jacqui Dillon National Chair of the Hearing Voices Network

‘In our experience, gained through more than 15 years running a national network, listening to people who hear voices, many of them living with a diagnosis of schizophrenia; it is clear that there is a definite link between traumatic life events and psychosis. On a daily basis, we hear terrible stories of sexual, emotional and physical abuse, and the impact of racism, poverty, neglect and stigma on peoples’ lives. We do not seek to reduce people to a set of symptoms that we wish to suppress and control with medication. We show respect for the reality of the trauma they have endured and bear witness to the suffering they have experienced. We honour peoples’ resilience and capacity to survive, often against the odds. The reduction of peoples distressing life experiences into a diagnosis of schizophrenia means that they are condemned to lives dulled by drugs and blighted by stigma and offered no opportunity to make sense of their experiences. Their routes to recovery are hindered. Rather than pathologising individuals, we have a collective responsibility to people who have experienced abuse, to acknowledge the reality and impact of those experiences and to support them to get the help they need. Abuse thrives in secrecy. We must expose the truth and not perpetuate injustice further; otherwise today’s child abuse victims become tomorrow’s psychiatric patients.”

Campaign for the Abolition of Schizophrenia Label

By Dr. Terry Lynch, GP and psychotherapist, Limerick , Ireland .
Lynch, Terry (2004) Beyond Prozac: Healing Mental Distress, Ross-on-Wye, PCCS Books.
In our modern 21 st century, access to information has never been easier at any time in the history of the world. Yet, some aspects of life remain very poorly understood. One glaring example of this is the degree to which the general public understand – or more accurately, misunderstand – so-called ‘mental illness’, and ‘schizophrenia’ in particular.

The term ‘schizophrenia’ needs to be abolished for a number of reasons. The so-called ‘illness’ which the term is purported to represent is a gross misinterpretation of the experience of people so labelled. The schizophrenia label encourages the ongoing ignoring of key issues which are virtually always present in the life experience of people who receive this label. For example, issues such as great trauma in their lives; terror; immense loss of autonomy and of their sense of Self; overwhelm; powerlessness; immense emotional pain; intense isolation.

The term ‘schizophrenia’ is taken to mean that a person who experiences certain experiences (such as hearing voices, becoming paranoid, experiencing ‘delusions’, withdrawing to a major degree) is fundamentally abnormal; crazy; clearly and obviously suffering from a major illness, which we have come to call ‘schizophrenia’.

This interpretation is incorrect. Many mental health care workers who take the time to listen intently and work collaboratively with people who go through these experiences come to realise that, far from being abnormal or crazy, these experiences make sense in the context of the person’s sense of Self, their experiences, and their life. By rejecting and dismissing the experiences, we also reject and dismiss the individual who is experiencing these.

The term ‘schizophrenia’ has been taken a step further into inaccuracy and misinterpretation. The term is now widely seen as synonymous with the presence of a biological abnormality within the person’s brain. This view has been enthusiastically promoted within some quarters, despite the reality that no consistent, reliable, or durable biological abnormalities have been identified, and in spite of the reality that the ‘diagnosis’ is always, always made without reference to any tests, because there are no biological tests for this ‘condition’. This gross misrepresentation (ie that ‘schizophrenia’ is known to be a biological illness) is used to justify the long-term (often life-long) use of mood-altering substances (often inaccurately referred to as antipsychotics) as the primary ‘treatment’ of this ‘illness’.

The upshot of this worped logic and bad science is that recovery rates from ‘schizophrenia’ in modern westernised societies trails well behind that in underdeveloped countries, according to World Health Organisation studies. The misguided obsession with imagined biological abnormalities over several decades has had the effect of reducing the attention on and research into psychological, social, human approaches to helping people get their lives back on track. There are many, many people – some of whom spoke at the Hearing Voices Network Annual Conference 2006) – whose recovery (from the traumatic experiences which caused their experiences of hearing voices, paranoia, etc) was impaired, and/or blocked by the preoccupation with the diagnosis of ‘schizophrenia’ and its supposed ‘treatment’ rather than working collaboratively with the person to explore the distress, seek to ascertain what may lie behind the distress, and with compassion, gentleness and caring, help the person to resolve their pain and move on with their life.

So-called ‘mental illness’, including ‘schizophrenia’, is one of the last remaining unrecognised apartheids left in our society. Well intentioned intervention is not necessarily effective intervention, and because it is well-intentioned, and provided by society’s appointed experts, it can be even more damaging, subtle and pervasive.

Abolishing the label ‘schizophrenia’ is an important step towards reversing the enormous travesty of natural justice which has existed in this area for decades. Not having a label, a ‘box’ to put people into, will facilitate the development of more humane, healing, collaborative working relationships between all concerned, including the experiencer and those who care, love, and work with them.

A Carer’s View of Schizophrenia

Some people like the term ‘schizophrenia’. The diagnosis does enable some service users to access benefits they might otherwise not, so they may find it useful. Some psychiatrists like to have a simple label they can use to describe people who otherwise have a confusing and diverse range of inconsistent symptoms; it suggests that they recognise these behaviours. In so doing, it enables them to ignore and discount the history and traumas of the service user, and all aspects of his or her life since everything is dismissed as ‘psychosis’ and ‘fantasy’. Some families think initially but mistakenly that if there’s a ‘diagnosis’, it represents a well-defined situation for which a genuine treatment and route to recovery is known, as happens with other health problems. So, initially, there may be brief relief with the diagnosis. However, this does not last. All affected families are horrified when the label ‘schizophrenia’ is soon attended by another damning label, that of ‘severe and enduring mental health problem’, yet despite this devastating prospect, they are urged NOT to give up hope as this is important to their relative’s recovery.

In practice, most families continue to hold the hope of recovery, and to work unstintingly for their family member’s support with absolute dedication sometimes for decades and often despite the unsupportive disinterest, and sometimes outright hostility and inhumanity, of many staff. The family often hold the flame which helps and inspires the service user throughout his illness. This is called LOVE, and it is discounted and dismissed by the services and the NHS obsessed as it is with regulations and procedures.

The government has ‘recovery’ as its goal though how to reconcile ‘recovery’ with the ‘severe and enduring’ label is a contradiction neither explored nor explained, and the treatment offered continues to be the same drugs.

As carers begin to search for information, they meet other carers and families; they come to know service users also diagnosed with ‘schizophrenia’ who have been maintained on drugs for decades and whose lives, along with those of their families, are slipping by in poor or no quality, stigmatised, rejected, isolated and dumped by mainstream society.

Soon, the vast range of symptoms and histories included in the umbrella diagnosis ‘schizophrenia’ is apparent and it is inconceivable to everyone except the psychiatrist that all these people could, or should, have the same diagnosis or the same treatment. By relying almost entirely on drugs, other therapies of proven value are ignored, often not even mentioned. When carers / families want to discuss other options with the psychiatrist, their request is usually refused or ignored. So, if you’re in the right place with more forward thinking and humane approaches available, your service user family member can access empathic therapies, taking into consideration his/her specific history and experiences with understanding and allowing him/her to process them then move on with improved chance of recovery. But, if you are not in an enlightened area, you are supposed to accept the total devastation of your family meekly and without question.

‘Schizophrenia’ was coined nearly a century ago. No other branch of medicine continues to rely on the faltering first footsteps taken so long ago. It is time it was abandoned so that service users can be treated individually, have their symptoms and histories properly addressed so they can recover proper control of their lives. Once schizophrenia has been abandoned as a concept, the medicalisation of mental illness and the domination of the drug companies is no longer acceptable. This is not recovery; it is sedation and containment using a chemical cosh lobotomy. Service users need appropriate individualised support, so that the 80% recovery rates achieved in the developing World can be seen here instead of the 20% we have currently. A recent comment by an enlightened psychiatrist was to the effect that the service user was in charge of his own recovery, but the psychiatrist supported his/her journey properly so that it was ordered and (s)he was not overwhelmed in the process.

Best wishes
Judith Varley

Mary Boyle

University of East London
The claim that there exists a biologically based diagnosable disorder called schizophrenia has been the focus of intense and persistent criticism and been shown to be scientifically bankrupt. But the label is also morally problematic. It is imposed on people in the absence of any evidence base and used without their informed consent (informed that is, of the controversies surrounding it). The label also appears to justify drugs as the major intervention as well as a vast and very unsuccessful research programme searching for biological and genetic causes.

But schizophrenia is much more than a label. Behind it lies the medical model – the claim that emotional distress and problem behaviour are pathological symptoms of illness or disorder rather than meaningful responses to serious problems and adversity in people’s lives and relationships. The public know (often from their own experience) that people become distressed because of what is happening in their lives. This understanding, however, may be stretched in the case of the bizarre seeming experiences and behaviour which are labelled as schizophrenia and which, we are told, are outside the range of our understanding of ‘ordinary’, everyday behaviour and experiences, hence the invoking of a brain disease to account for them. Yet instead of leading us to the conclusion that ‘mental illness is an illness like any other’, the evidence points in a quite different direction – that schizophrenic behaviours and experiences are ‘behaviours and experiences like any other’ – understandable in the same terms as we understand ‘ordinary’ behaviour and meaningful in the context of peoples lives. If we acknowledge this, then we enter a world of ideas and possibilities entirely different from and far more constructive in terms of helping people, than those created through claims about schizophrenia as a brain disease.

Claims about illness and brain disease have been so persistent and plausible not just because psychotic behaviour and experience may indeed be difficult to understand but also because schizophrenia research is so often presented in ways which systematically obscure evidence against it (see www.critpsynet.freeuk.com/Boyle.htm for many examples of this). Not only that, but service users, the public and professionals are rarely presented with alternatives so that ‘schizophrenia as brain disorder’ seems all the more plausible simply because there appears to be no other way of thinking.

It is exactly because schizophrenia is not just a descriptive label but an entire way of thinking about people that we need to be alert to the danger that it will be replaced with an equally problematic label leaving intact the language and assumptions of symptoms and illness on which it is based. Indeed the label ‘dopamine disregulation disorder’ (which does exactly this) has already been suggested, focussing, again, on what is supposedly going on in people’s brains rather than their lives and implying that drugs are still the preferred intervention. What is being called for instead (and is already available) is not simply a different label but entirely different ways of thinking about those psychological experiences and behaviours which have been mislabelled and misunderstood as symptoms of schizophrenia.

Lucy Johnstone

Academic Director
Bristol Clinical Psychology Doctorate
Author ‘Users and abusers of psychiatry’, Routedge 2000.
We have known for a long time that the term ‘schizophrenia’ is scientifically meaningless. It is not actually a ‘diagnosis’ in a medical sense, since it is not based on bodily symptoms or signs. Instead, the criteria consist of a ragbag of social judgements about people’s thoughts, feelings and behaviour – experiences which actually make sense in the context of people’s histories of abuse and deprivation. The people who are so labelled may well have difficulties and be in urgent need of help, but this is not the way to help them.

We used to be convinced that disturbed or disturbing behaviour could be explained by the presence of ‘evil spirits’. No one could actually see them, but we knew they were there. We are equally convinced today by the explanation that distressed people are, in effect, possessed by ‘schizophrenia’. No one can detect the ‘biochemical imbalance’ or the ‘genetic vulnerability’ that is meant to underlie it, but we know the ‘illness’ is lurking in there somewhere. We know that the reason people suffer ‘delusions’ is because they have ‘schizophrenia’. And how do we know they have ‘schizophrenia’? Because they have ‘delusions’, of course!

Strip away the pseudo-scientific rhetoric and it is obvious where the real delusion lies. Believing in this ‘illness’ has powerful benefits for professionals and drug companies, and indeed for society at large, which has found it very convenient to conceal the effects of widespread damage and abuse under this ever-flexible label. Perhaps this is why we have failed to draw the moral from the pile of research indicating that this kind of breakdown has a far better outcome in non-industrialised countries that have not come under the influence of Western psychiatry.The people who lose out, of course, are the ‘patients’ or service users, for whom the diagnosis is often an introduction into a lifetime of dependence on psychiatric services and toxic drugs, alienated from mainstream society by fear and stigma. They would do far better in a village in rural India or Africa . Perhaps this also explains why we have failed to follow more enlightened examples from our own history – moral management, therapeutic communities and so on – or from places like Scandinavia which are moving well away from diagnosis and medication as first-line interventions.

‘Diagnosing’ someone with ‘schizophrenia’ is one of the most damaging things one human being can do to another. Re-defining someone’s reality for them is the most insidious and the most devastating form of power we can use. It may be done with the best of intentions, but it is wrong. We now have a chance to put some of this right, by abolishing the label – not to replace it with another fake-medical term, but instead to work with individuals towards a true understanding of how and why they come to experience extreme forms of emotional distress.

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