The following is an Open Letter prepared by Paul Baker. The Intervoice Board has voted to sign this as an organisation.
If you would like to add your name to the list of signatories, please email [email protected] directly.
Rethinking the validity of Schizophrenia on World Mental Health Day
An Open Letter to Rethink, the English Mental Health Charity
To: Mark Winstanley, CEO, Rethink Mental Illness
10th October 2017
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.
We agree that there are a lot of misconceptions about the diagnosis of schizophrenia. However, 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 is misleading.
The description of schizophrenia as a disease process, as acknowledged on 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, seeing visions 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 “Have you got the wrong impression about schizophrenia” 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, the impression may be given 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 the 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.
We agree with Brian Dow, your director of external affairs, who 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 someone’s 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 currently understood. (13)
There 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 a diagnosis of schizophrenia have been through a number of adverse life events and trauma. This can include childhood sexual abuse, racism, bullying, neglect 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 of difficulty.
Framing schizophrenia as an ‘illness like any other’ can increase stigma, not reduce it. Therefore we maintain that ”schizophrenia” as a construct is not useful or helpful for many people who receive the diagnosis and for 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. It stops us from building a healthier world and encourages in people with the diagnosis, alienation, pessimism and a deep despair.
We applaud your mission of challenging misleading stereotypes about the diagnosis of schizophrenia. We want to stand alongside you in this. However, we firmly believe that if we are to really change the public narrative around schizophrenia we need to take a different approach.
Professor Sir Robin Murray’s views about the future demise of “schizophrenia” points to the need for proactive action. Our common task is to work together and create a culture where people who hear voices, see visions, experience altered and extreme states are supported in ways that are creative and hopeful.
This is why we want to engage with you to discuss the validity of the term “schizophrenia” in terms of the following issues:
- We need to be honest: Presenting schizophrenia as an uncontested illness is misleading and could worsen stigma. Instead, we need to 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 need to 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 such as oppression, poverty 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 move forward.
We look forward to your reply.
Supported by 67 people
Tazma Ahmed-Datta, Portland, Oregon, USA
Valentina Alexa, Psychologist, Romania
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
Julie Bevan, England, UK
Kenneth Blatt, M.D., Psychiatrist, West Hartford, CT, USA
Brigid Bowen, Director, Compassionate Mental Health, Wales, UK
Alison Branitsky, voice hearer, Hearing Voices Network, USA
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, vice chair, INTERVOICE, Netherlands
Hywel Davies, Chair of Hearing Voices Network Cymru and voice hearer, Wales, UK
Margreet de Pater, ISPS Executive Committee, Netherlands
Michelle Dalton, artist, voice hearer, Cork, Ireland
Leonardo Duart Bastos, psychologist, Coordenador/ Fundador Grupo de Ouvidores de Campinas, Brazil
Carol Dugdale, Hearing Voices Group Facilitator, Manchester, England, UK
Jørn Eriksen, Psychiatric nurse, Denmark
Sandra Escher, PhD, INTERVOICE, Netherlands
Trevor Eyles, Psychiatric Nurse, Psychotherapeutic Educator, Denmark
Roberta Feltham, parent, Bournemouth, England, UK
Gina Firman Nikkel, President/CEO, Foundation for Excellence in Mental Health Care, USA
Daniel Fischer, MD, PhD, survivor of schizophrenia label, USA
Geir Margido Fredriksen, Psychiatric Nurse, Molde, Norway
Linda Garland, England, UK
Lia Govers, person healed from ‘schizophrenia’ through psychodynamic, psychotherapy, Turin, Italy
Marty Hadge, HVN National Trainer, Voice hearer, Massachusetts, USA
Will Hall, MA, Dipl.PW, PhD candidate, Maastricht University
Paul Hammersley, psychologist, England, UK
Judit Harangozó MD psychiatrist, Community Centre of Semmelweis Univ. – Awakenins Foundation, Budapest, Hungary
Akiko Hart, Hearing Voices Project Manager, Mind in Camden, England, UK
Rebecca Hatton, PsyD, Ann Arbor, MI, USA
Yasmin Ishaq, England, UK
Kevin Healey, Recovery Network: Toronto, Canada
Cory Isham, trauma survivor, psychologist & social worker, NW England
Ras Kanja, Normal Difference, Kenya
Jen Kilyon, Trustee of Soteria Network and ISPSUK
Martijn Kole, (ex) user of Mental Health Services, peer leader and founder Enik Recovery college, Netherlands
Rita Long, People With People, Stockport, England, UK
Noreen Marie McLaughlin, voice hearer, Co Donegal, Ireland
Kieran McGuire, Australia
Joanne Newman, Lived Experienced Educator, ECU, Busselton Hearing Voices Network, Australia
Mad in America Foundation, USA
Michael O’Loughlin, Adelphi Unversity, New York, USA
Louisa Putman, Director at Arco Iris Institute, Marriage & Family Therapist (MFT), Arco Iris Institute, New Mexico, USA
Greg Ralls, professional engineer, voice hearer, Perth, Western Bodil Roved, psychiatrist, board member in Danish Society for Psychoanalytic Psychotherapy, Denmark
Professor Marius Romme, psychiatrist, co-founder INTERVOICE, Netherlands
Olga Runciman, psychiatric nurse, psychologist & voice hearer, Danish Hearing Voices Network, Denmark
Barbara Schaefer, Beacon Social Care, Nottingham, England, UK
Joachim Schnackenberg PhD, Experienced Focussed Counselling Institute, Germany
Dorothy Scotten Ph.D., LICSW, Walden University, Minneapolis, USA
Ann-Louise S. Silver, M.D. Columbia, MD, USA
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
Radoslwa Stupuak ,MA, PhD candidate in psychology, Jagiellonian University, Poland
Alison Summers, Psychiatrist and psychotherapist, ISPS, UK
Ros Thomas, Young Peoples Worker, Gateway Community Heath, Australia
Ron Unger LCSW, Chair of the Education Committee of ISPS-US
Joel Waddingham, Psychiatric Nurse, England, UK
Rachel Waddingham, Chair of INTERVOICE, England, UK
Dr. Angela Woods, Hearing the Voice, University of Durham, England, UK
Community Centre of Semmelweis Univ. – Awakenins Foundation
International Hearing Voices Projects (known as Intervoice)
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.