Inquiry into the 'Schizophrenia' Label (ISL)
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The Inquiry into the 'Schizophrenia' Label (ISL) is an independent inquiry into the usefulness and validity of 'schizophrenia' as a medical illness and the social and personal implications and consequences of the diagnosis on people given the label. ISL is supported by national and international organisations, groups and individuals.
An independent panel will examine evidence from people who have been affected by the label of 'schizophrenia' (or similar labels such as 'psychosis'), including mental health service users and carers, those who use these labels to describe mental health problems in other people, and those who have concerns about the use of such labels. We hope to use this evidence to lobby for change in psychiatric practice via the Royal College of Psychiatry and other professional bodies nationally, internationally via the World Psychiatric Association, and the creators of International Classification of Diseases (ISD) and the Diagnostic and Statistical Manual (DSM) which are used as standard texts for diagnosing mental 'illnesses'.
The concept of 'schizophrenia' as a diagnosis has been used within bio-medical western psychiatry for about one hundred years and is now being spread across the globe, together with other ways of labelling problems of living. However, the usefulness and validity of schizophrenia as a medical illness is now questionable and its continuing use as a label criticised from scientific, transcultural, ethical and social perspectives (link to why the problem page). Whatever the scientific validity and / or clinical usefulnesss of 'schizophrenia' as a medical diagnosis, it must be recognized that 'schizophrenia' (or 'psychosis') as a label has significant social implications and serious consequences for people given the label. HENCE THIS INQUIRY.
We are aware of a project called the 'Schizophrenia Commission', the terms of reference of which assumes that 'schizophrenia' is a valid diagnostic entity and so considers 'schizophrenia' from a medical and psychiatric system perspective. Our Inquiry takes a social-political and service-user / survivor perspective and focuses on the lived experience of people given the label and the consequences for them of receiving the label.
The Inquiry into 'Schizophrenia' Label (ISL) is independent, free of any connection with the pharmaceutical industry or psychiatric establishment (including research organisations) directly or indirectly, and transparent in the manner of its funding and working. The inquiry panel and co-ordinating committee are providing their services pro bono and expenses incurred by the inquiry are being met by donations of private individuals details of which are available. ISP incorporates consultation with people affected by the label 'schizophrenia' (or similar labels such as 'psychosis'), those who use the label (or similar labels such as 'psychosis') to describe mental health problems in other people, and those who have concerns about the use of such labels.
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Supporters
So far, we have support from the following organisations:
• National Survivor User Network (NSUN)
UK network of survivors and users of mental health services
• Afiya Trust
A national charity that works to reduce inequalities in health and social care provision for people from racialised communities in the UK.
• Rights and Wellbeing of Racialised Groups (RawOrg)
A Black and Minority Ethnic (BME) think-tank on mental health and mental health services in UK
• Sharing Voices Bradford
A Community Development Mental Health organisation that works within the inner city areas of Bradford
• World Network of Users and Survivors of Psychiatry (WNUSP)
A network with branches around the world
• Asylum Collective and Magazine
An international group of people committed to democratic psychiatry
• Soteria Network UK
An international movement of service users, survivors, activists, carers and professionals fighting for more humane, non-coercive mental health services.
• European Network of (ex) Users and Survivors of Psychiatry (ENUSP)
A network with members in Europe
And individuals:
Richard Bentall
Professor of Clinical Psychology, University of Liverpool
Kamaldeep Bhui
Professor of Cultural Psychiatry, Barts and The London School of Medicine and Dentistry
President of World Congress of Cultural Psychiatry, London March 2012
President-elect World Association of Cultural Psychiatry
Honorary Consultant Psychiatrist, East London NHS Foundation Trust (fine)
Trustee of Careif, an International Mental Health Charity (terrific)
Mary Boyle
Emeritus Professor of Clinical Psychology, University of East London
Pat Bracken
Consultant Psychiatrist and Clinical Director of Mental Health Services in West Cork, Ireland.
Erica Burman
Research Professor of Psychology and Women's Studies, Manchester Metropolitan University
Group Analyst
Steven Coles
Clinical Psychologist, Nottinghamshire Healthcare NHS Trust
Dawn Edge
Academic researcher in the School of Community Based Medicine, University of Manchester
John Eversley
Senior Lecturer, Faculty of Health and Social Care, London South Bank University
Senior Lecturer, Faculty of Applied Social Sciences and Humanities, London Metropolitan University
Sue Holttum
Senior Lecturer (Research), Clinical Psychology Programme, Canterbury Christ Church University
Rhodri Huws
Consultant Psychiatrist, Sheffield Health & Social Care NHS Trust
Member of Critical Psychiatry Network
David Ingleby
Emeritus Professor of Intercultural Psychology at Utrecht University, The Netherlands
Willy Brandt Memorial Professor at the School of International Migration and Ethnic Relations, Malmö University
Consultant to the Council of Europe's Expert Committee on Mobility, Migration and Access to Health Care
Lucy Johnstone
Consultant Clinical Psychologist, Cwm Taf Health Board, South Wales
Former Programme Director, Bristol Clinical Psychology Doctorate
Frank Keating
Senior Lecturer in Health and Social Care, Royal Holloway University of London
Hugh Middleton
Clinical Associate Professor, Faculty of Social Sciences
Honorary Consultant Psychiatrist; University of Nottingham and Nottinghamshire Health Care Trust
Member of Critical Psychiatry Network
Zenobia Nadirshaw
Consultant Clinical Psychologist
Associate Fellow of the BPS & Chartered Scientist
James Nazroo
Professor of Sociology and Director of the Cathie Marsh Centre, School of Social Science, University of Manchester
Mark Rapley
Professor of Clinical Psychology, University of East London
Member of Critical Psychiatry Network
John Read
Professor of Psychology, University of Auckland, New Zealand
Peter Scott-Blackman
Former CEO of Afiya Trust, London
Mohammad Shabbir
CEO of Sharing Voices Bradford
Helen Spandler
Senior Research Fellow, School of Social Work, University of Central Lancashire Preston
Sami Timimi
Consultant Child and Adolescent Psychiatrist, Lincolnshire Partnership Foundation NHS Trust
Visiting Professor of Child and Adolescent Psychiatry, Faculty of Health & Social Sciences,
Lincoln University
Member of Critical Psychiatry Network
Why the Inquiry?
• There are problems with the concept 'schizophrenia' when considered from a historical perspective. Its emergence as a 'new' construct in the early 1900s; its dubious validity even in terms of methodology at that time; and its construction in a context of racist eugenic thinking dominated by the ideology inherent in the concept 'degeneration'.
• The concept of schizophrenia has not proved useful as a basis for research into understanding mental health problems from a biological viewpoint; its use in international study has confused rather than clarified issues around therapy for, and outcome of, mental health problems.
• Schizophrenia does not seem to mean very much (as explanation for mental health problems) to many service users or their carers and relatives.
• The use of medication is not necessarily related to a diagnosis being made first and so the separation of the schizophrenia diagnosis from 'therapy' would clarify the reasons for medication being used in states of agitation and thereby reduce its abuse.
• When looked at transculturally, schizophrenia does not stand up as a useful way of identifying people with problems of living even when these are conceptualised as 'mental' ill health; for example, some of the symptoms considered as cardinal signs of 'illness' such as 'hearing voices' may not be sustainable as pathological cross-culturally; and a growing body of evidence suggests that, even in 'western' cultures, the notion that
'hearing voices' is inherently 'pathological' is unsustainable.
• When 'schizophrenia' as a diagnostic concept is used in a multi-ethnic setting, many problems emerge; in Britain it has become conflated with racist oppression, raising questions about the racist nature of the diagnosis itself in conjunction with psychiatric stigma.
Current practice in UK
The use of the label 'schizophrenia' persists in psychiatric research, as well as in clinical practice and guidelines, such as those issued by NICE. It thus continues to have a great deal of influence. In view of the problems with the label, psychiatrists have come under pressure to abandon its use as a diagnosis, with the result that the label 'psychosis' is being used more generally to label the people who would otherwise be labelled with 'schizophrenia'. Hence the inquiry will include the label 'psychosis' as implying 'schizophrenia'.
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Find out more
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What IS this schizophrenia?Itistimetoabandonitas'diagnosis'BySumanFernando,December2009
Fromtheverybeginningofitsconstruction,schizophrenia,togetherwitheugenics,wasaproductofracethinking,representedinMorels'theoryofdegeneration(amplifiedbyLombrosoin'atavism').ThisideologywasabsorbedintotheNazimovementthattriedtogetridofdegenerateraces,degenerateartetc.Togetherwiththislinktoracism,schizophreniawasconstructedtoencompassthecombinationofmentalillness,criminalityandinherentinferiority.Itisnotsurprisingthereforethatschizophreniacarriesastigma.Northatthelabelofschizophreniacarriesracistimplications.Inaway,thatiswhatisitissupposedtodo–toimplydegeneracy,racialinferiorityandcriminality.Whathashappenedmorerecently,isthatthenegativelabellingcarriedbyschizophreniahasspreadtothemoregeneraldiagnosisof'psychosis'becauseinmoderntimes(inBritainatanyrate)thetwolabels(schizophreniaandpsychosis)areusedalmostsynonymously.Thecaseagainstschizophreniaasadiagnosisisnowverystrong.
Whyschizophreniashouldbeabandonedasa'diagnosis'.
Althoughgenerallyacceptedformanyyears,mainlythroughitseemsreverencetothe'fatherofpsychiatry'(Kraepelin),thediagnosis'hasremainedapersistentsourceofcontroversyanduncertainty'(vanPraag,1976:481).InapaperintheLancet,Hay(1984)ishighlycriticalofKraepelin'soriginalapproachinidentifyingaunitarypsychosisintheasylumpatients(identifiedbyKraepelinas'psychotic')whowerenotsufferingfrommanicdepression.SarbinandMancuso(1980)pointoutthat30yearsofresearchhasfailedtoproduceamarkerthatwouldestablishthevalidityofschizophreniaasan'illness'.And,writingfromabackgroundofmanyyearsofresearchingschizophrenia,Johnstone(1999)refersto'thecentraldifficultyofthelackofaneffectivevalidatingcriterion[forschizophrenia]'and'thelackofclarityofanyunderlyingprocess'(1999:ix).PsychologistRichardMarshall(1995)rejectsanyscientificbasisfortheconceptschizophreniaasrepresenting'illness':'The'illness'notiononwhichschizophreniaisbasedisatthelevelofmetaphororanalogy.Itissimplyaresultofananalogywithorganicillness.Itismetaphoricalthinking–itisasifwhatistermedschizophreniaisillness,aresultoforganicdefect.….Fromatruescientificviewpoint,then,anillegitimateandunwarrantedassumptionhasbeenmade.Wehavemovedfromtherealmsofscienceandintothereachesofbelief.'(1995:57,italicsinoriginal).
Afteranalysingtheconceptschizophreniaintermsofitsconstruction,itsdiagnosticcriteriaanditsgeneticresearch,psychologistMaryBoyle(2002)comestotheconclusionthatabandoningitwouldenablethestudyof'phenomena'(thatatpresentarelinkedtogetherintoanillnesswhichisassumedtohavea'cause')intheirownright,takingonboard'questionsaboutcontext,aboutcontentandfunctionandaboutsocialandpersonalmeanings'(2002:245).AnotherpsychologistRichardBentall(1990),afterreviewingtheevidenceonreliabilityandvalidityofschizophreniaasaclinicaldiagnosisinwesternsettings,concludesthatthe'currentfaithinthescientificmeaningfulnessoftheschizophreniadiagnosiscannotbejustified'(1990:32).Theconceptofschizophreniaasanillnesshasnotshownitselfusefulforpurposesofbiologicalresearch.Onereviewerofthetopic(Barnes,1987)concludes:'Foreverypointaboutthebiologyofschizophreniathereisacounterpoint.Theoriesabouttheoriginanddiseaseprocessofschizophreniaareoftenbuiltonamultitudeorempiricalobservationsandapaucityofhardfacts.'(1987:433)Anotherreview(LiebermanandKoreen,1993)findsa'fragmentarybodyofdatawhichprovidesneitherconsistentnorconclusiveevidenceforanyspecificetiologictheory.'(1993:371).McGorry(1991),apsychiatrist,andCharlton(2000),apsychologist,botharguingfromaneuroscientificperspective,believethatusingtheconcept'schizophrenia'isactuallyimpedingpsychiatricresearchandpreventingtherapyforpeoplewithmentalhealthproblems.AndBentalletal.,(1988)attributethelackofanysubstantialprogressinschizophreniaresearchinacenturyto'schizophrenia'notbeingameaningfulscientificconcept.
SchizophreniaasadiagnosiswasusedintheinternationalresearchbytheWorldHealthOrganisationinitsInternationalPilotStudyofSchizophrena(IPSS).Theuncriticaluseofaconceptthathadnocross-culturalvaliditywasstronglycriticisedbyArthurKleinman(1977),adoyenoftransculturalpsychiatry–acriticismechoedbyothers(e.g.Marsella,1982;Favazza,1985;Fernando,1991).AndIhavearguedinmybooksthattheuseofschizophreniaasadiagnosisisnolongerusefulinamultiethnicsociety.Butworsethanthat,theuseoftheschizophreniadiagnosisisexperiencedbyblackpeoplegiventhediagnosis-andblackcommunitiesasawhole–asoppressiveandirrelevantinassessingmentalhealthproblemsamongblackpeople.Recentlyagroupofprofessionalshavecalledpubliclyfortheabolitionofthe'schizophrenialabel'(Available:
http://www.caslcampaign.com/accessed2January2009).
Summaryofthecaseagainsttheuseof'schizophrenia'/'psychosis'asadiagnosisThetwolabels(schizophreniaandpsychosis)usedtodaysynonymouslyinpsychiatricpracticearebothseriouslyproblematic.First,thereareproblemswiththeconcept'schizophrenia'whenconsideredfromahistoricalperspective.Itsemergenceasa'new'constructintheearly1900s;itsdubiousvalidityevenintermsofmethodologyatthattime;anditsconstructioninacontextofracisteugenicthinkingdominatedbytheideologyinherentintheconcept'degeneration'.Second,theconceptofschizophreniahasnotprovedusefulasabasisforresearchintounderstandingmentalhealthproblemsfromabiologicalviewpoint;itsuseininternationalstudy(i.e.intheIPSS)–rightlycriticizedasflawedbecauseof'categoryfallacy'-hasbeenunsuccessfulinthatresultsofstudyhaveconfusedratherthanclarifiedissuesaroundtherapyfor,andoutcomeof,mentalhealthproblems.Third,whenlookedattransculturally,schizophreniadoesnotstandupasausefulwayofidentifyingmentalillhealth;someofthesymptomsconsideredcardinalsignsof'illness'suchas'hearingvoices'maynotbesustainableaspathologicalcross-culturally.Fourth,schizophreniadoesnotseemtomeanverymuch(asexplanationformentalhealthproblems)toeitherserviceusersortheircarersandrelatives.Fifth,theuseofmedication–ofteninhighdoses–isnotnecessarilyrelatedtoadiagnosisbeingmadefirstandsotheseparationoftheschizophreniadiagnosisfrom'therapy'wouldclarifythereasonsformedicationbeingusedinstatesofagitationandtherebyreduceitsabuse.Finally,when'schizophrenia'asadiagnosticconceptisusedinamulti-ethnicsetting,manyseriousproblemsemerge;inBritainithasbecomeconflatedwithracistoppression,raisingquestionsabouttheracistnatureofthediagnosisitselfinconjunctionwithpsychiatricstigma.Onecannotbutconcludethattheusefulnessofschizophrenia/psychosisasaconceptdenoting'illness'isnowunsustainableanditsrelevanceinamulti-ethnicsocietyissuspect.
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The Case against Schizophrenia: Critical Psychiatry Network
The year 2011 marks the one hundredth anniversary of the introduction of the diagnosis of schizophrenia by the Swiss psychiatrist Eugen Bleuler (Bleuler, 1911). In this article we propose that the best way to celebrate this event is to consign the diagnosis to history. In doing so, we declare our support for the position already set out by the Campaign for the Abolition of the Schizophrenia Label, that there can no longer be any justification for the continued use of the diagnosis because the way it is used is unscientific and harmful (CASL, 2010).
We endorse the Campaign by presenting additional information in support of their position. There are three arguments against the way the diagnosis of schizophrenia is used; it has no scientific basis, it is harmful, it leads to stigma. It is worth noting that the latest thinking from the American Psychiatric Association suggests that there may be no place for subtypes of schizophrenia in DSM-V, although the concept is still retained (DSM-V, 2010). The arguments we develop here are specifically directed at the diagnosis of schizophrenia. We are not proposing the complete abandonment of diagnosis in psychiatry, which needs to be recognized for what it is. Diagnoses are simply working concepts for clinicians justified by their clinical utility (Kendell & Jablensky, 2003). The problem is that the label 'schizophrenia' has lost any such value, because it has become reified into something that it is not.
The diagnosis of schizophrenia has no scientific basis
There have been many excellent and thoughtful critiques of the concept of schizophrenia from a scientific perspective (Boyle, 2002; Johnstone, 2000; Bentall, 2003). Over the last thirty years or so, academic psychiatrists have worked hard to improve the reliability of psychiatric diagnosis. This is partly in response to critics of psychiatry who pointed out that the diagnosis of schizophrenia was meaningless because of poor levels of agreement between psychiatrists about key symptoms of schizophrenia. They were also unable to discriminate between sane and insane people (Rosenhan, 1973). The introduction of DSM-III and DSM-IV imposed diagnostic agreement on the profession through the use of check-lists of diagnostic criteria, but this has served to highlight an even more fundamental problems with the concept of schizophrenia, its validity.
The philosopher Carl Hempel (1961) argued that the validity of a concept like schizophrenia depended upon the extent to which it represents a naturally occurring category. If it does, then there should be an identifiable biological property of those who have the diagnosis that makes them unique and distinct from those who don't. In other words the category should 'carve nature at the joint'. The failure of basic science research to reveal a specific biological abnormality that distinguishes those who are categorised as having schizophrenia from those who don't indicates that categorical diagnostic systems such as DSM-IV and ICD-10 have outlived their usefulness (van Os, 2003; van Os, 2003a; Anckarsäter, 2010). Even researchers in genetics (Owen et al, 2007) are now arguing that the categorical diagnosis of schizophrenia is severely handicapping their studies.
A central feature of diagnosis in medicine is that it should predict the future course of the disease if left untreated (its natural history), as well as the response to specific forms of treatment. Kraepelin (1913) reported that only 13% of his patients suffering from dementia praecox (schizophrenia) recovered, but the evidence from more recent long-term outcome studies of people with the diagnosis shows that in broad terms 50% or more of people improve significantly (Bleuler, 1978; Ciompi, 1980), and many recover fully. Recent work in Singapore and Madras confirms this. Kua et al (2003) found that two thirds of patients in Singapore had good or fair outcome at 20 years. In Madras, Thara et al (2004) found that only 5 out of 61 subjects followed up over 20 years had been continuously ill. More than three quarters were in employment. There is simply no evidence to support the view that the diagnosis of schizophrenia predicts poor outcome.
Moreover, there is no evidence that there are any specific biological treatments for schizophrenia. Although antipsychotic drugs are sometimes claimed to reverse a biochemical imbalance, no such imbalance has been demonstrated. The drugs are more likely to work through their general suppressant effects, which they exert in anyone who takes them and not just in people diagnosed with schizophrenia (Moncrieff, 2008). The condition is not only unscientific but a barrier to recovery.
The diagnosis of schizophrenia is harmful
Some people appear to be happy to receive a diagnosis of schizophrenia. It is one way in which they can make sense of their experiences (Jameson, 1996). However many find it unhelpful (Rogers, et al, 1992). A large-scale study in nearly thirty countries involving face-to-face interviews with over seven hundred people diagnosed with schizophrenia found that 54% reported that the diagnosis had been a disadvantage (Thornicroft et al, 2007). Similar findings emerge in personal stories of those diagnosed with schizophrenia (Read & Reynolds,1996). In our view there are four main reasons why the diagnosis of schizophrenia can be harmful; it is a barrier to recovery, it forecloses the importance of meaning, it invokes powerlessness, it obscures the importance of contexts.
A barrier to recovery
The word 'recovery' is strongly tied to the medical model; we speak of people recovering from cancer or open heart surgery. But for many survivors and service users the word has a different meaning, one that implies speaking out, an act of reclamation, or, as Coleman (1999) says, 'having a voice'. Without a language to speak, a voice to speak with, and opportunities to be heard by others, there can be no story and no recovery. Through social action the survivor movement has created safe spaces in which individuals can start the process of telling their own stories. The point here is that the meaning of recovery for service users and survivors in Britain (Coleman, 1999; Faulkner & Layzell, 2000; May, 2000) and in the USA (Chamberlin, 1978; Deegan, 1996) is very closely tied to the struggle of survivors to have the right to tell their own stories in their own way.
The real problem with the diagnosis of schizophrenia as far as recovery is concerned is that it imposes a narrative of despair on those so identified. The late Robert Barrett, an Australian psychiatrist and anthropologist, examined the cultural preoccupations that shaped the origins of the concept of schizophrenia in the nineteenth century (Barrett, 1996). One was the contrast between the integration and disintegration of the individual. Another was a concern with the Enlightenment ideal of progress and its opposite, degeneration. Both had a great influence on the emerging discourse about schizophrenia, and this persists today. It is seen in the belief that schizophrenia is a condition that inevitably has a poor prognosis, and from which the chances of recovery (restitutio ad integrum) are slim. It is to be found in words like 'deterioration', 'deficits' and 'defect state', and instantiated in services whose purpose is to ensure the rapid and early drug treatment of young people in their first episode of psychosis to prevent 'deterioration'. These are narratives of hopelessness and despair.
It forecloses meaning
Diagnosis obliterates meaning by transforming significant experiences into a narrow disease framework. Louise Pembroke (1996) found that when her psychiatrist diagnosed her as 'schizophrenic', he not only disregarded her own spiritual understanding of her experiences, but problematised this by regarding it as a symptom of her illness. O'Hagan (1996) describes how her psychiatrist's preoccupation with her diagnosis and medical treatment meant that he turned away from her suffering and failed to engage with it. The requirement to render patients' experiences in terms of a diagnostic category means that complex and important experiences are stripped of their meaning by identifying them as symptoms.
Brunner (1996) understood her psychosis in terms of her mother's experiences of madness after moving from Jamaica to England in the 1950s and through their shared experiences as Black women in a predominantly white culture. Likewise, Dewan (1996) understood her psychosis in terms of her mixed cultural heritage (Indian and Irish Catholic). Racism features prominently in both women's understandings of their psychoses. They contrast their contextualised understandings with reductive psychiatric diagnosis in terms of disordered brain function that requires medication. This is particularly significant in the light of evidence that African and African-Caribbean people are much more likely to be diagnosed as suffering from schizophrenia (e.g., Cochrane, 1977; Carpenter & Brockington, 1980; Dean et al, 1981; Harrison et al, 1988; van Os et al, 1996).
It invokes powerlessness
Peter Campbell (1996) saw the power of psychiatry in terms of the influence and control it had in many areas of his life. Although his psychiatric diagnosis was manic depressive psychosis, his experiences reflect more generally those of people diagnosed with schizophrenia. He makes two points about the power of psychiatry. First, the judgement that a person 'lacks insight' is profoundly disempowering, especially when 'insight' means agreeing that you are suffering from schizophrenia. To say that someone lacks insight is not to state a fact but to make a judgement, one that reduced him to a '…category of persons whose experience is devalued, status diminished and rational evidence dismissed…' (ibid: 57). He also points out how diagnosis and the biomedical model it implies is now the dominant framework through which society interprets psychosis. This has two implications; it means that it is only possible to talk about recovery in terms of symptoms control, which many service users find very unhelpful, and it contributes to the predominantly negative view, in society, of people who experience psychosis. We will return to this shortly.
It obscures the importance of contexts
We have already seen that the use of the diagnosis of schizophrenia pays scant regard to cultural contexts and personal narratives rooted in this. However, the contexts that we are particularly concerned with here are those that involve experiences of trauma and abuse. This is important because there is a substantial body of evidence linking the experience of hearing voices and other psychotic experiences to trauma and abuse in adults and children (Romme & Escher, 1989, 1993; Honig et al, 1998; Escher et al, 2002; Greenfield et al, 1994; Goodman et al 1997; Mueser 1998; Read et al 2003; Morrisson, 2003; Bebbington et al, 2004). This resonates powerfully with the experiences of the Hearing Voices Network. Speaking at a conference in Manchester in 2006, the National Chair of the organization described how it had listened to the experiences of people who hear voices for fifteen years, many of whom had been diagnosed schizophrenic, but whose life experiences included sexual, physical and racial abuse, poverty, neglect and stigma (Dillon, 2006). This is why it is so important to attempt to understand psychotic experiences in the context of the person's life story. Not to do so can be harmful because it obscures and mystifies the origins of problematic experiences and behaviour that has the potential to be understood (Romme & Escher, 2000).
The diagnosis of Schizophrenia leads to stigma
It is widely believed that improving public understanding of schizophrenia in biomedical terms will improve public attitudes towards people with the diagnosis, and thus reduce stigma. This because it is assumed that if the causes of psychosis are attributed to biological factors over which the person has no control, then the individual cannot be blamed or held responsible. In fact recent research evidence refutes this view. Angermeyer & Matschinger (2005) subjected two representative population surveys of public attitudes to psychiatric patients (using vignettes of schizophrenia and depression), conducted in the Länder of the former German Federal Republic in 1990 and 2001 to a trend analysis. Over the period of the study an increase in public acceptance of biomedical explanations of psychosis was associated with a public desire for increased distance from people with schizophrenia. These trends did not hold for major depressive disorder.
Read et al (2006) have comprehensively reviewed the literature on stigma and schizophrenia to assess whether the 'schizophrenia is an illness like any other' approach helps reduce prejudice towards those with the diagnosis. They found an increase in biological causal beliefs across Western countries in recent years, suggesting that this approach is gaining hold. However, biological attributions for psychosis were overwhelmingly associated with negative public attitudes in 18 of 19 studies, whereas psychosocial attributions were associated with positive attitudes in 11 of 12 studies. Biological attributions are thus strongly linked to negative public attitudes, or stigma. This appears particularly to be the case for the diagnosis of schizophrenia.
Sayce (2000) has described in detail the implications of stigma, particularly the loss of citizenship associated with being a psychiatric patient. A label of 'chronic schizophrenia' interferes with a person's identity and biography (Riemann, 1987). In addition, the presence of "insight" in schizophrenia lowers self-esteem and leads to despair and hopelessness (Bassman, 2000), and also predicts higher levels of depression and risk of suicide attempts four years later (Crumlish et al, 2005). Hasson-Ohanon et al (2006) found that the presence of 'insight' was negatively correlated with emotional well-being, economic satisfaction and vocational status. Accepting a diagnosis of schizophrenia means that the person must also accept the negative public attitudes and stigma associated the diagnosis. As we have seen, the diagnosis brings expectations of a gloomy outlook with lifelong dependency on psychiatric treatment and little chance of complete recovery. Thus rejecting the diagnosis (or 'lack of insight') may be understood as a positive way of coping with the implications of the diagnosis for personal identity.
Conclusions
We have set out three major objections to the continued use of the diagnosis of schizophrenia. It has no scientific basis, it is harmful, and it makes stigma worse. In addition to this, it is a barrier to recovery, and it is an obstruction to the possibility of finding meaning in psychosis. It invokes powerlessness, and disregards personal contexts of trauma and abuse.
Diagnosis in psychiatry involves much more than simply 'carving nature at the joint', which lays the emphasis on diagnosis as a scientific project. Diagnosis is not only about identifying disease but also about understanding the reasons for action. The value-laden nature of diagnosis is a sign of its meaningful nature. Assuming schizophrenia is an entity of some kind directs attention away from important clinical features of diagnosis, especially those narrative aspects that are important in teasing out the different meanings of suffering, from the patient's perspective, the family's and the clinician's. We are certainly not opposed to this, but there can be no justification for the continued use of a diagnosis like 'schizophrenia' that serves to obscure meaning, is unscientific and harmful.
We fully support the Campaign for the Abolition of the Schizophrenia Label, and will work with them and others committed to getting rid of it. The onus is on clinicians and academics in the field of mental health to work much more closely with service users and carers to find more acceptable ways of identifying and naming psychosis.
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Terms of reference for the Inquiry
In carrying out its work the Inquiry will:
• Explore the effects of the label 'schizophrenia', and the more general one 'psychosis', on people given the label focusing on (a) advantages and disadvantages they encounter from receiving the label; (b) the ways in which the criminal justice system affects them once they receive the label; and (c) whether the label is serving any purpose in the present social and political context of UK , while taking account of any relevant information (including research) from UK and other countries, especially those with non-western cultural heritages in Low and Middle Income range (as per the classification of the World Bank).
• Receive evidence from (a) people who have been given the label 'schizophrenia' or the more general one 'psychosis'; (b) their families and carers; (c) health and social care professionals involved in systems that are set up to help them and / or control them 'in the public interest', especially those involved in enforcing compulsory admission to in-patient settings and compulsory medication while in the community.
• Examine whether people given the label 'schizophrenia, or the more general one 'psychosis', are discriminated against or disadvantaged as a result of their perceived racial, cultural or socio-economic backgrounds through personal prejudice, institutionalized attitudes of those professionals carrying authority in mental health services, or theories and practices inherent in (western) psychiatry.
• Consider how the workforce carrying responsibility for providing mental health services in the UK needs to change and develop ways of supporting and helping people given the label 'schizophrenia', or more general one 'psychosis', so that they may be able to lead more fulfilling lives.
• Develop ways in which the guidance on the 'treatment' of people given the label 'schizophrenia', or the more general one 'psychosis', issued by NICE and other bodies should be changed.
• Not investigate individual cases or complaints voiced during the inquiry.
Coordinating committee
Jan Wallcraft
Mental health service user researcher and writer; Honorary Fellow, Birmingham University; Visiting Fellow, University of Herts
Philip Thomas
Visiting Honorary Professor, Social Sciences and Humanities, University of Bradford; Former Professor of Equality, Diversity and Mental Health, University of Central Lancashire; Former Consultant Psychiatrist at Bradford Community Health Trust
Jayasree Kalathil
Survivor researcher and writer; Editor of Open Mind; Co-chair, Social Perspectives Network
Suman Fernando
Honorary Professor in the Faculty of Social Sciences and Humanities, London Metropolitan University; Former Senior Lecturer in Mental Health at European Centre for Migration and Social Care, University of Kent; former Consultant Psychiatrist, Chase Farm Hospital, Enfield, Middlesex.
Inquiry Panel
An independent panel of experts will examine the evidence give to this Inquiry. The panel members:
• Are not involved in active psychiatric research into the use of medication for treatment of 'mental illness' (because this inevitably involves using labels)
• Are not working in clinical psychiatry units (and so not subject to pressures and /or conflict of interests)
• Are residents of the UK
• Do not have personal or professional connections with the pharmaceutical industry
Chair
To be decided
Ann Davies
Professor in Department of Social Policy, University of Birmingham; Former director of Centre of Excellence in Interdisciplinary Mental Health (CEIMH)
Chinyere Inyama
Coroner at Walthamstow Coroners Court and practicing solicitor specializing in mental health issues; Formerly President of the Mental Health Review Tribunal, and Mental Health Act Commissioner.
Dominic Makuvachuma-Walker
Psychiatric survivor; Vice-chair of National Service User Network; Formerly manager of Catch-a-Fiya Network
David Pilgrim
Professor in the School of Social Work, University of Central Lancashire; Clinical psychologist and medical sociologist with experience in acute psychiatric units and secure provision, currently interested in mental health policy and history and philosophy of mental health
Premila Trivedi
Service User Trainer and Advisor; Founding member of SIMBA in London; member of Kindred Minds, a BME user group in Southwark
Work Plan
The inquiry will offer several different methods for people to contribute evidence:
• An online survey
• A publicised call for written evidence
• An opportunity for telephone interviews
• A series of focus groups
• An inquiry event to be organised in March 2011
Timeline
February–March 2012
• Press launch with launch of website early February
• Opening of Inquiry:
• Online survey
• Focus groups
• Telephone interviews
• Written submissions of evidence
• Event in late March
April 2012
• Evidence collected together and assembled in a dossier
• Inquiry panel consider evidence and invite further evidence as necessary
• Inquiry panel helped by co-ordinating committee draw conclusions and make recommendations
May 2012
• Writing report on the evidence and the Inquiry panel's conclusions
June 2012
• Launch of report
Funding
The Inquiry into the 'Schizophrenia' label is not seeking any resources from any funding agencies. The Inquiry Panel and the Co-ordinating Committee are providing their services free of charge.
The Inquiry is accepting donations from private individuals to meet the administration and occasional expenses of the project. The process for making donations and collecting them are being set up with one of the supporting organisations (NSUN).
Estimated expenses (for which donations are being sought)
• Preparation of website
• Telephone
• Stationery
• Postage
• Travel (e.g. focus groups, Inquiry team, presenters of evidence)
• Refreshments: focus groups, meetings
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1472254/--
"Even the rich are hungry for love, for being cared for, for being wanted, for having someone to call their own."
Mother Teresa
"All tyranny needs to gain a foothold is for people of good conscience to remain silent."
Thomas Jefferson
I love quotations because it is a joy to find thoughts one might have, beautifully expressed with much authority by someone recognized wiser than oneself.
Marlene Dietrich
