…diagnosis itself and its usefulness and validity are under question and may need discarding completely: Inquiry into the ‘Schizophrenia’ Label

by Julia Evans on December 6, 2012

The Inquiry into the ‘Schizophrenia’ Label (ISL) : ‘However, our preliminary findings show that the diagnosis itself and its usefulness and validity are under question and may need discarding completely. The initial reading of the evidence submitted to ISL shows that there is no consensus in how we should understand our own and other people’s distress and its manifestations, and that it is time to move away from psychiatric diagnoses and support people as fellow human beings rather than as people with a medical illness.’ Preliminary report of Inquiry into the Schizophrenia Label, 6th December 2012, Published at Schizophreniainquiry.org  See below for full preliminary report.

Background

The Inquiry into the ‘Schizophrenia’ Label (ISL) is an independent inquiry into the usefulness of ‘schizophrenia’ as a diagnosis and medical condition. It is also investigating the impact this diagnosis has on people’s lives.

Inquiry method

An independent panel will examine evidence from people who have been affected by the label of ‘schizophrenia’ (or similar labels such as ‘psychosis’), including those who use or have used mental health services, their families/friends/carers, those (including professionals) who use these labels to describe mental health problems in other people, and those who have concerns about the use of such labels. The panel will produce a report based on this evidence which will be forwarded to a range of organisations including NICE, the Royal College of Psychiatrists, other professional and statutory bodies, private and third sector organisations, and the Department of Health.

Concerns about diagnosis

Their concerns about this diagnosis are available here

These concerns are similar to points I have made and those made on the Critical Psychiatry Network. Some further references:

What the Government’s strategy of implementation by force produces – fear, and worse by Julia Evans on December 1, 2012

Governance by implementation of standards OR by applying principles by Julia Evans on November 12, 2012

Letter to the Guardian: Cut-price therapy and the trauma underlying mental ill health by Julia Evans on November 8, 2012

Is there a Complex Adaptive Systems approach behind the ‘Big Society’ and the Coalition Government’s attitude towards statutory professional regulation? by Jo Rostron on November 3, 2012

The pot (HM’s Opposition party) calls the kettle (Celebrity culture) black & its relation to the Government’s production of taint in its clinic of Mental Health: 2 new posts: Reminder – conference on current issues on Sunday December 2nd by Julia Evans on November 1, 2012

Everyday insecurity: Life at the end of the welfare state: November 2012: interim briefing: nef – economics as if people and the planet mattered by Julia Evans on November 1, 2012

Do the ‘evidence-based’ results of brain scanning debunk Freud both scientifically and in the clinic? by Julia Evans on September 5, 2012

The ‘Fat Controllers’ in the DoH dictate THE law with the agreement of both Houses of Parliament by Julia Evans on August 13, 2012

English context of Autism in relation to medical and other political formulations by Julia Evans on June 30, 2012

Sadeian power, the UK Government……… & CON-sultations by Julia Evans on February 3, 2012

Principles based in trust and relationships versus Sadeian absolute control by Julia Evans on August 14, 2011

Reply to CON-sultation: Equity and excellence: Liberating the NHS White Paper July 2010 by Julia Evans on October 9, 2010

Challenges to Government’s principles used to define the care of mental ill-health by Julia Evans on July 15, 2010

Opposing the Section 60 Order which will make psychology a function of the state – as it was in Soviet Russia. by Julia Evans on April 16, 2009

Summary

When there are no physical correlate of symptoms, the use of diagnostic procedures as in medical practice, is totally inappropriate.  As these procedures drive from certainty, they produce impossibility.  As there are no physical markers, as in a broken leg, it is not possible to produce a category which describes this group of human beings.  If you do persist, as the Government does in prescribing through NICE clinical guidelines, then you are bound to produce taint.  You split off a section of human beings and label them.  In Lacanian psychoanalysis, diagnoses are used to direct the treatment and not to classify human beings as substandard.  I have been stating this within Parliament since 2009.

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Preliminary findings which were circulated on 6th December 2012

‘Schizophrenia’: Time to Discard the Diagnosis?

Preliminary findings from the independent Inquiry into the ‘Schizophrenia’ Label (ISL) finds that over 80% of those who gave evidence believe the diagnosis is damaging and dangerous.

“The label has destroyed my life, friendships, relationships and employment prospects.” [Survey respondent]

“The doctor at the hospital kept asking me if I heard voices. I didn’t know what she meant by this. Was she checking my hearing, my awareness? Was she using a metaphor? I didn’t know. I said yes as I could hear the voices of nurses and patients on the ward down the corridor. That sealed my fate.” [Testimony submission]

“When [my son] found that some people recovered he was adamant that he would be one of these and this has helped him to fight for services he needs and to maintain good self-awareness. Therefore largely the label has not been unhelpful — but very very scary.” [Survey respondent]

The independent Inquiry into the ‘Schizophrenia’ Label (ISL) was launched in April to investigate the usefulness of ‘schizophrenia’ as a diagnosis and medical condition, and the impact this diagnosis has on people’s lives. Since the launch, the Inquiry received evidence from around 500 people in the form of responses to an online survey, testimony submissions via the Inquiry website, comments on Facebook, a focus group in Manchester, and other submissions in the form of articles, personal narratives and memoirs.

The coordinating group and the independent panel are currently collating and examining the evidence. Preliminary results from our survey show that:

  • The majority of respondents feel that a diagnosis of ‘schizophrenia’ is damaging: Over 80% of the respondents said that the diagnosis of ‘schizophrenia’ makes life more difficult for people diagnosed;  88% think that ‘schizophrenia’ is associated in the minds of the public with violence against others despite evidence to the contrary.
  • 50% thought that they would be treated more harshly by the criminal justice system.
  • 60% of respondents believe that ‘race’ and ethnicity affect the diagnosis of schizophrenia, for a range of reasons including impact of social class, racism and cultural assumptions.
  • Well over half (57%) of the respondents do not see ‘schizophrenia’ as a medical illness and do not think that there is enough scientific evidence to underpin the diagnosis.
  • 49% think that medication should be given only if a service user requests this.
  • 46% think that the diagnosis of schizophrenia should never be used by professionals in case notes or discussion, with the majority of these arguing that people’s own words for their condition or problems should be used.
  • Alternatives to diagnosis include working with people’s narratives as the basis for support and using techniques developed based on this concept such as those promoted by the Hearing Voices movement and the Finnish Open Dialogue project.

The recent report from the Schizophrenia Commission, headed by the mental health charity Rethink and the Psychosis Research Unit at the Institute of Psychiatry has made 42 recommendations to change the way people diagnosed with schizophrenia are treated. However, our preliminary findings show that the diagnosis itself and its usefulness and validity are under question and may need discarding completely. The initial reading of the evidence submitted to ISL shows that there is no consensus in how we should understand our own and other people’s distress and its manifestations, and that it is time to move away from psychiatric diagnoses and support people as fellow human beings rather than as people with a medical illness.

 

“I know that I experience some kind of ‘altered stage’ and I wish I could find non-medical language to talk about my experience without having to recite a whole chapter of my life…” [Testimony submission]

“I am in favour of formulating a co-constructed narrative of the service user’s problems and their personal meaning in the context of their life experiences. No diagnosis needed!” [Survey respondent]

ISL, supported by over 40 organisations and 250 individuals, has been run on a fully voluntary basis with no external funding. The Inquiry will report fully in the New Year. For more information and to read the testimonies, please visit www.schizophreniainquiry.org.

The coordinating group

Inquiry into the ‘Schizophrenia’ Label