This
is the open letter to Rethink about Rethinking Schizophrenia that I
have been drafting. I will send this out tomorrow to coincide with World
Mental Health Day. If you would like to add your name to the list of
supporters please let me know by commenting on this post or by messaging
me directly
Paul Baker
To: Mark Winstanley, CEO, Rethink Mental Illness
10th October 2017
Dear Mark
Rethinking the validity of Schizophrenia on Mental Health Day
An Open Letter to Rethink, the English Mental Health Charity
We are are a group of concerned citizens. Our backgrounds are diverse.
We are people who hear voices, people living with the diagnosis of
schizophrenia, family members and friends, experts by experience,
experts by profession and researchers from the UK and beyond.
We are writing to you because Rethink has an important and respected voice in the world of mental health.
What you say as an organisation is significant. The work and findings
of the Schizophrenia Commission in 2012 (1) and your part in the Time To
Change Campaign (2) in England being recent examples of this.
In
honour of World Mental Health Day 2017 we want to ask you to join us in
a creating a new conversation around the term “schizophrenia” and the
way in which we talk about this with the general public and within
mental health services.
Specifically, we want to discuss your
recent press release “New survey shows schizophrenia remains widely
misunderstood” published on the 18th September 2017 (3) based on the
findings of a survey carried out on your behalf by YouGov of 1500
people. The survey revealed that the “condition” is widely
misunderstood. You warned that myths about “schizophrenia” are
dangerous.
Whilst we agree that there are a lot of
misconceptions about the diagnosis of schizophrenia. We are concerned
that by challenging public myths about schizophrenia you are reinforcing
one of the biggest myths - that schizophrenia is a valid diagnosis -
and that the experiences of people diagnosed with schizophrenia are best
understood as symptoms of an underlying mental illness.
We
appreciate that in public awareness campaigns it can be felt that it is
necessary to present a simple picture of mental health problems in order
to gain public empathy. Yet, with this comes a problem. It’s
misleading.
The description of schizophrenia as a disease
process, as acknowledged in your own website is not founded on any
physical evidence, as you say “There are no blood tests or scans that
can prove if you have schizophrenia. Only a psychiatrist can diagnose
you after a full psychiatric assessment. Psychiatrists use manuals to
diagnose mental illnesses.” (Rethink) (4). This is after more than 100
years since it was first used as a descriptive term.
The idea
that schizophrenia is an actual illness entity or disease, rather than a
way of categorising certain experiences gives the unfortunate
impression that experiences such as hearing voices are synonymous with
the diagnosis of schizophrenia. However, research tells us that hearing
voices and having unusual thoughts exist on a continuum in the general
population (5) and can also be associated with a wide range of mental
health diagnoses. Furthermore, it gives the impression that
voice-hearing is solely a symptom of a mental illness - when the
majority of voice hearers in the general population have never needed
mental health care (6).
As you will be aware schizophrenia is
very much a contested diagnosis and it is receiving increasing criticism
from multiple fronts, including from professionals, survivors and
researchers. The chair of the Schizophrenia Commission (commissioned by
Rethink), Professor Sir Robin Murray wrote in the Schizophrenia Bulletin
in 2017 that the schizophrenia construct:
“is already beginning
to break down ... presumably this process will accelerate, and the term
schizophrenia will be confined to history, like ‘dropsy’ … Amazingly,
such is the power of the Kraepelinian model that some psychiatrists
still refuse to accept the evidence, and cling to the nihilistic view
that there exists an intrinsically progressive schizophrenic process, a
view greatly to the detriment of their patients.” (7)
Murray is
not alone. The distinguished Dutch psychiatrist Jim Van Os has also
called for the abandonment of “schizophrenia” as a useful description
and concept. In an article in the British Medical Journal (2016) he
argued that because it is often understood as a hopeless chronic brain
disease, it should be dropped and replaced with something like
“psychosis spectrum syndrome.” (8)
The Dutch psychiatrist, Professor Dr. Marius Romme, the co founder and former President of INTERVOICE goes further:
“The schizophrenia problem is the lack of scientific validity of the
illness concept and the denial of the meaningfulness of the separate
symptoms. These go together and make it impossible to solve the problems
of the person… What we have to acknowledge is that psychiatrists don’t
know what to else to do, apart from giving the diagnosis, so we can be
angry with them, but that’s all they know. So when they see a person
hearing voices, they easily identify that experience with schizophrenia,
and the same if they see someone with delusions, etcetera… In normal
health care, you have a complaint, then the doctor looks for the cause
of that complaint, then puts complaint and cause together and makes a
diagnosis. Psychiatrists do something different, they construct an
illness from separate symptoms. They don’t look for the cause.
Schizophrenia as an illness entity means that the symptoms are the
consequence of the illness. There is no cause for the illness; the
illness is the cause. This has no empirical basis and prevents a
solution, because you don’t analyse the background of the symptoms. The
experiences defined as the symptoms of schizophrenia are independent of
the diagnosis. These experiences are meaningful in themselves, mostly
related to emotional problems.” (9)
In contrast, in the BBC
article based on the press release Brian Dow, director of external
affairs at Rethink Mental Illness is quoted as saying;
It's about
time we all got to grips with what schizophrenia is and what it isn’t.
"Schizophrenia can be treated and managed, just like many other
illnesses. It's not a dirty word or, worse, a term of abuse.”. (10)
Schizophrenia is not an illness that causes symptoms, it is a term used
to categorise people’s experiences. However, you give the impression
that schizophrenia is an illness that affects the way we think and
causes an array of symptoms including hearing voices, difficulties
concentrating and having unusual beliefs. The position is based on the
‘mental illness is an illness like any other’ metaphor. It is
well-intended in attempting to bestow dignity to the sickness role and
to remove blame and by educating the public that “these people” are not
responsible for their actions.
Unfortunately, we believe it has
the opposite effect as it reinforces the belief that “schizophrenia” is
“a debilitating disease” caused predominantly by a biochemical imbalance
of the brain. In this way diagnostic labelling increases belief in
bio-genetic causes, and also increases the sense of perceived
dangerousness, unpredictability, lack of responsibility for own actions
and lack of ‘humanity’ of people with the diagnosis. It also leads to
the perception that the problem is more severe, that people are more
dependent and the condition is bereft of hope of recovery. Furthermore
as your survey revealed it increases fear, rejection and a desire for
distance from people with the diagnosis.
It appears that
bio-genetic causal beliefs, and diagnostic labelling, are making
attitudes worse. The more that ordinary people think of the condition as
a brain disease, and the less they recognise it to be a reaction to
unfortunate circumstances, the more they shun people with the diagnosis.
A biological approach makes it all too easy to believe that human
beings fall into two subspecies: the mentally well and the mentally ill.
When we label people as vulnerable, deficient or problematic what we do
is define them out of the community and redefine them as clients of a
service system, no longer as friend and neighbour. When we do that we
take some of the soul of the person.
However, in twenty one
countries including England, when asked, the public believe mental
health problems, including psychosis, are caused primarily by adverse
life events (11). Unfortunately, for every psychiatrist who agrees with
the public there are 115 who think ‘schizophrenia’ is caused primarily
by biological factors (12).
This gives us a sense of the agendas that need to be addressed.
In our opinion a psychiatric diagnosis reduces complex challenges of
living to an underlying disorder with symptoms. However these 'symptoms'
may not be 'just symptoms’. They may be profound, authentic feelings,
emotions and moods which are an integral part of a person's
relationships with other people. Their struggle with actualising their
authentic life. To dismiss these profound, authentic feelings as 'just
symptoms' is to dehumanise and desensitise the person. This not only
effects the individual with the diagnosis but all those around them and
the community as a whole.
As Brian Dow, your director of external affairs said in the BBC article:
"The symptoms of schizophrenia don't fit neatly into a box, everyone
will experience it differently. However, we can all play a role in
rethinking schizophrenia, and helping to change attitudes, by learning
to separate the myths from the facts.”
We would go further. We
think that a new way forward needs to be forged. We need to acknowledge
that symptoms associated with with diagnosis with schizophrenia can be
understood as meaningful experiences in the context of someones life.
Meaningful experiences that need to be explored.
We need to be
asking the question: “What happened?” rather than “What’s wrong with
you?”. For instance, we need to be investigating adverse childhood
events and psycho-social approaches in relation to episodes of
“psychosis” as it is currently understood. (13)
The are good
grounds for taking this position. Increasingly, research is telling us
that many people who go on to hear distressing experiences, experience
episodes of psychosis or have diagnosis of schizophrenia have been
through a number of adverse life events and trauma. This can include
childhood sexual abuse, racism, bullying and other forms of
victimisation, poverty, isolation and loss. (14)
For many, the
voices can be understood in response to these difficult events, with the
themes and identity of the voices being related in direct and
metaphorical ways to the situations they have faced or the emotions they
have been left with.
It is also important to remember that voice
hearing is a diverse experience, with many possible causes and
interpretations. Some people for example, hear voices that are an
important and meaningful part of their daily life - an asset rather than
a cause.
For some, difficulties with coping with the voices can
lead to confusion and distress - yet labelling this as an illness can
cloud the issue and stop us from trying to understand what makes the
voices so hard to deal with in the first place. It can get in the way.
Framing schizophrenia as an ‘illness like any other’ can increase
stigma, not reduce it. Therefor we maintain that ”schizophrenia” as a
construct is not useful or helpful for people who receive the diagnosis
and for the society as a whole. Portraying mental ill health as a brain
disease can only increase stigma. It diverts our attention away from
other ways in which we can help people, stops us from building a
healthier world and encourages in people with the diagnosis, alienation,
pessimism and a deep despair.
Whilst we applaud your mission of
challenging misleading stereotypes about the diagnosis of schizophrenia
and want to stand alongside you in this, we firmly believe that if we
are to really change the public narrative around schizophrenia we need
to take a radically different approach.
Professor Sir Robin
Murray’s views about the future demise of “schizophrenia” points to the
need for proactive action. Our task is together, create a culture where
people who hear voices, see visions, experience altered and extreme
states are supported in ways that are creative and hopeful. To start
with what is strong not what is wrong.
This is why we want to engage with you to discuss the validity of the term “schizophrenia” in terms of the following:
We need to be honest: Presenting schizophrenia as an uncontested
illness is misleading and could worsen stigma. Instead, we could be
honest with the general public about the debates and uncertainty
surrounding the term.
Focus on making connections between people:
The use of diagnoses and illness language separate us (the well) from
them (the ill). However, when we talk about the struggles labelled as
psychosis in a human way, describing the context and sense within the
experiences, we can build bridges between people. We can empathise with
people’s stories, and not their diagnoses.
Increase awareness of the
meaning that can be found within experiences like voices rather than
presenting them as mere symptoms of an illness. Demonstrate that this
meaning can be explored, asking “what’s happened to you - not what’s
wrong with you”.
Emphasise the importance of different adverse life
experiences that have been linked to many people’s experiences of
psychosis and diagnoses of schizophrenia. This includes the importance
of social determinants and individual experiences of adversity and
trauma.
We would welcome your leadership and partnership in
making this happen, as you did bravely with the Schizophrenia Commission
in 2012.
We hope you will agree to meet to discuss these
issues, or engage in a written dialogue with us so together we can
identify constructive and creative ways to take forward this .
We look forward to your reply.
Your sincerely
Alan Baker, Three Treasures School of Taijiquan, Oxfordshire, England, UK
Paul Baker, INTERVOICE Social Media Coordinator, England, UK
Ivan Barry, Recovery Activist, Berlin, Germany
Philip Benjamin, Psychiatric Nurse, INTERVOICE Board, UK and Australia
Brigid Bowen, Director, Compassionate Mental Health, Wales, UK
Berta Britz, voice hearer, Montgomery Hearing Voices Group, USA
Christine Brown, RMN, Hearing Voices Network, Scotland, UK
Peter Bullimore, England, UK
Bernie Bush, Australia
Roberta Casadio, psychologist and discovery partner, Italy
Oryx Cohen, Hearing Voices Network, USA
Ron Coleman, Scotland, UK
Dirk Corstens, psychiatrist, Co-chair of INTERVOICE, Netherlands
Hywel Davies, Chair of Hearing Voices Network Cymru and voice hearer, Wales, UK
Jørn Eriksen, Denmark
Sandra Escher, PhD, INTERVOICE, Netherlands
Trevor Eyles, Psychiatric Nurse, Psychotherapeutic Educator, Denmark
Roberta Feltham, parent, Bournemouth, England, UK
Daniel Fischer, MD, PhD, survivor of schizophrenia label, USA
Geir Margido Fredriksen, Psychiatric Nurse, Molde, Norway
Lia Govers, person healed from 'schizophrenia' through psychodynamic, psychotherapy, Turin, Italy
Marty Hadge, HVN National Trainer, Voice hearer, Massachusetts, USA
Kevin Healey, Recovery Network: Toronto, Canada
Ras Kanja, Normal Difference, Kenya
Rita Long, People With People, Stockport, England, UK
Noreen Marie McLaughlin, voice hearer, Co Donegal, Ireland
Kieran McGuire, Australia
Barbara Schaefer, Beacon Social Care, Nottingham, England, UK
Joachim Schnackenberg, Experienced Focussed Counselling Institute, Germany
Dr. Helen Spandler, Reader in Mental Health, University of Central
Lancashire, Editor: Asylum, the magazine for Democratic Psychiatry,
England, UK
Olatunde Spence, art therapist and parent, Manchester, England, UK
Penny Stafford, Edinburgh, Scotland
Professor Marius Romme, psychiatrist, co-founder INTERVOICE, Netherlands
Olga Runciman, psychiatric nurse, psychologist & voice hearer, Danish Hearing Voices Network, Denmark
Ros Thomas, Australia
Joel Waddingham, Psychiatric Nurse, England, UK
Rachel Waddingham, Co-chair of INTERVOICE, England, UK
Dr. Angela Woods, Hearing the Voice, University of Durham, England, UK
References
Schizophrenia Commission Schizophrenia - The Abandoned Illness, Rethink, 2012
Time To Change Campaign
New survey shows schizophrenia remains widely misunderstood Source: Rethink, 18 September 2017
Schizophrenia - Symptoms & diagnosis Source: Rethink Website
Lawrence, C., Jones, J., & Cooper, M. (2010). Hearing Voices in a
Non-Psychiatric Population, Behavioural and Cognitive Psychotherapy,
38(3), 363-373; LC Johns, J Van Os (2010)The continuity of psychotic
experiences in the general population, Clinical psychology review
Kråkvik B., Larøi F., Kalhovde A. M., Hugdahl K., Kompus K., Salvesen
Ø., Stiles T. C. Vedul-Kjelsås E. (2015). Prevalence of auditory verbal
hallucinations in a general population: A group comparison study.
Scandinavian Journal of Psychology, 56, 508–515.
Robin M. Murray,
Mistakes I Have Made in My Research Career, Schizophrenia Bulletin,
Volume 43, Issue 2, 1 March 2017, Pages 253–256
Professor Jim van Os “Schizophrenia” does not exist,, British Medical Journal 2016; 352
Professor Marius Romme, How to solve the schizophrenia problem, 6th
World Hearing Voices Congress Thessaloniki, Odysseying with the sirens,
Congress speech, 2014
Have you got the wrong impression about schizophrenia? BBC News, 18 September 2017
Read, J., Haslam, N., Sayce, L. and Davies, E. (2006), Prejudice and
schizophrenia: a review of the ‘mental illness is an illness like any
other’ approach. Acta Psychiatrica Scandinavica, 114: 303–318
John Read, Jacqui Dillon Models of Madness: Psychological, Social and Biological Approaches to Psychosis edited by
Filippo Varese, Feikje Smeets, Marjan Drukker, Ritsaert Lieverse,
Tineke Lataster, Wolfgang Viechtbauer, John Read, Jim van Os, Richard P.
Bentall; Childhood Adversities increase the Risk of Psychosis: A
Meta-analysis of Patient-Contol, Prospective and Cross-sectional Cohort
Studies, Schizophrenia Bulletin, Volume 38, Issue 4, 18 June 2012, Pages
661–671
Morgan C, Gayer‐Anderson C. Childhood adversities and
psychosis: evidence, challenges, implications. World Psychiatry.
2016;15(2):93-102. doi:10.1002/wps.20330.
Um relatório, publicado pela British Psychological Society
(BPS), critica o estado atual do conhecimento dos sintomas psicóticos e
as implicações prejudiciais dos tratamentos padrão e faz sugestões
sobre o que precisa ser mudado.
