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DSM-5 Protest Tuesday 4th June 4.30pm onwards at the Institute of Psychiatry

Speak Out Against Psychiatry (SOAP) are a group of former patients, carers, mental health professionals and concerned citizens who are campaigning for humane treatment for people experiencing mental distress. SOAP are opposed to forced treatment, electro-shock therapy and the psychiatric drugging of children. SOAP also promote humane alternative ways of helping people in distress.

SOAP are organizing a demonstration to coincide with a forthcoming Institute of Psychiatry conference on the DSM-5 (the latest of edition of the “Diagnostic and Statistical Manual of Mental Disorders” a book published by the American Psychiatric Association which is widely used throughout the world to classify mental disorders).

The protest will be on Tuesday 4th June from 4.30pm till early evening at the Institute of Psychiatry, De Crespigny Park, London, SE5 8AF.

SOAP are organizing the protest as they feel that the DSM-5 makes it easier for normal human experiences to be labeled as mental illness. For example people experiencing grief can be more easily given the label “Major Depressive Disorder”, and children with temper tantrums can now be diagnosed as having “Disruptive Mood Dysregulation Disorder”. 

A spokesperson for SOAP says “The DSM encourages a tick-box approach to understanding human distress which serves the interests of professionals and drug companies rather than the people who really need help. With the DSM-5 things have been taken a step further: even mainstream organizations such as the National Institute for Mental Health and the British Psychological Society are distancing themselves from the DSM-5, claiming it is unscientific. ”

SOAP feels the DSM-5 will increase the number of people stigmatized by a mental health diagnosis, increase prescriptions of mind-altering drugs, and further what they see as a worrying trend of everyday human problems being put in the hands of highly paid experts and pharmaceutical companies rather than our families and communities.

SOAP also objects to the DSM approach in general, where new disorders are created by committees without any objective biological evidence. SOAP highlights the fact that in earlier versions of the DSM, homosexuality was classed as a disorder but this has since been removed as it is no longer socially acceptable.   SOAP feel that, while mental disorders are frequently being changed by the professionals, patients are still forced to accept them.

A SOAP advocate says, “In the UK mental health system, if a patient rejects the psychiatric label, they are described as ‘lacking insight into their condition’ and the Mental Health Act is used to force them to take medication. How can a person be expected to agree to a label when they are changing every time the latest guide book comes out?”

The protest will give people the chance to voice their concerns about the DSM-5, and allow survivors of the psychiatric system to speak out about their experiences of labelling and forced treatment. SOAP will also be holding a memorial service for a former member who tragically took her own life following decades of forced medical treatment.

SOAP invites anybody who is concerned about the DSM-5, or other aspects of the mental health system, to come along on Tuesday 4th June – from 4.30pm till the early evening, at the Institute of Psychiatry, De Crespigny Park,London, SE5 8AF.

PDF press release available here: SOAP-DSM-5PressRelease

Maudsley Debates – Enabling or Labelling?

This House believes that psychiatric diagnosis has advanced the care of people with mental health problems.

Wednesday 5th June, 6pm (refreshments served from 5.30pm)

To coincide with the publication of the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), sometimes described as the “Bible” of American psychiatry, the Institute of Psychiatry is hosting a debate on the issue of psychiatric diagnosis.  Some argue that a rigorously  standardised system of classification of mental disorders forms an essential role in conceptualising a patient’s problem, in predicting what treatments are likely to be effective, and in conducting valid scientific research.  Others consider psychiatric diagnoses to be no more than labels, which lack scientific and predictive validity and serve only to stigmatise and objectify those who suffer from mental disorders.  These issues will be debated in the 48th Maudsley Debate on Wednesday 5 June at 6pm at the Wolfson Lecture Theatre, Institute of Psychiatry, Denmark Hill.  The motion is “This House believes that psychiatric diagnosis has advanced the care of people with mental health problems.”  

Speaking for the motion:

Prof Norman Sartorius, former president of the World Psychiatric Association

Prof Anthony David, Professor of Cognitive Neuropsychiatry, Institute of Psychiatry

Speaking against the motion:

Dr Felicity Callard, Senior Lecturer in Social Science for Medical Humanities, Durham University and Chair of the Board, Mental Disability Advocacy Center

Dr Pat Bracken, Clinical Director of Mental Health in West Cork and author of “Post- Psychiatry: Mental Health in a Post-Modern World”.  

Chair:  Sir Simon Wessely, Professor of Psychological Medicine and Vice Dean for Academic Psychiatry, Institute of Psychiatry

 Wolfson Lecture Theatre, Institute of Psychiatry Main Building, De Crespigny Park, London SE5 8AF

Contact: Hannah Baker

For further information please see: http://www.kcl.ac.uk/iop/news/debates/index.aspx 

Hearing Voices Network Launches Debate on DSM 5 and Psychiatric Diagnoses

 

IT’S THE BAD THINGS THAT HAPPEN TO YOU THAT CAN DRIVE YOU CRAZY!

The Hearing Voices Network in England has issued a position statement on DSM 5 and the wide issue of psychiatric diagnoses following last week’s debate on the need for a new paradigm in mental health services, reported largely as a ‘turf war’ between psychiatry and psychology. Concerned that this debate can all too easily sound ‘academic’ and miss the voices of the very people these systems impact upon – those diagnosed with mental health problems – HVN are taking the debate back to the people.

We believe that people with lived experience of diagnosis must be at the heart of any discussions about alternatives to the current system.

Jacqui Dillon, Hearing Voices Network, Chair.

In their statement, the Hearing Voices Network (HVN) state that psychiatric diagnoses are both scientifically unsound and can have damaging consequences. HVN suggest that asking ‘what’s happened to you?’ is more useful than ‘what’s wrong with you?’.

Concerned that essential funds are being wasted on expensive and futile genetic research, they call for the redirection of funds to address the societal problems known to lead to mental health problems and provide the holistic support necessary for recovery.

This is part of a growing, international movement by survivors of the psychiatric system who are questioning the adequacy of a biomedical model to make sense of and respond to madness and distress (see: http://www.intervoiceonline.org/ http://www.mindfreedom.org/ http://psychdiagnosis.weebly.com/ http://www.madinamerica.com/ http://www.occupypsychiatry.net/ http://www.youtube.com/openparadigmproject )

HVN invites people with lived experience of diagnosis and their supporters to engage in a discussion about the issues and help plan a way forwards.

People who use services are the true experts on how those services could be developed and delivered; they are the ones that know exactly what they need, what works well and what improvements need to be made. This is not just an academic or professional issue – it’s one that affects our lives.”

Jacqui Dillon, Hearing Voices Network, Chair

 ______________________________________________________________________________________________________________________________

Notes for the editor

 

  • The Hearing Voices Network (England) is a national, user-led charity that supports people who hear voices, see visions or have other unusual experiences. The Hearing Voices Network is part of the rapidly expanding global Hearing Voices Movement with 26 Hearing Voices Networks operating, across 5 continents. The Hearing Voices Network’s position statement can be read, and commented on, via their website http://www.hearing-voices.org/

 

 

Please SIGN THE PETITION to prevent DSM-5 from compromising patient safety and scientific integrity.

 

Statement of Concern – Complete Version

 

Note: DSM-5 refers to the American Psychiatric Association’s fifth edition of the Diagnostic and Statistical Manual of Mental Disorders; a handbook for psychiatric diagnosis and classification, scheduled for publication for 20th May, 2013.

 

Statement of Concern about the Reliability, Validity, and Safety of DSM-5

We, the undersigned, are concerned that the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5):

  • Includes many diagnostic categories with questionable reliability, which may lead to misleading assumptions about their scientific validity;

Prior to the publication of DSM-III in 1980, psychiatric diagnoses were frequently criticized for their substandard reliability, as clinicians too commonly disagreed on diagnostic decisions even when presented with the same information. Thus, a major impetus for those who developed the diagnostic model featured in DSMs III and IV was the improvement of interrater reliability, or the likelihood that two or more professionals would agree on a particular diagnosis (Feighner et al., 1972; Spitzer, Forman, & Nee, 1979). This goal was achieved with marked success, leading to hopes that the next step of achieving validity (i.e., empirical support for the real-world legitimacy of DSM-defined mental disorders) was close within reach (see Robins & Guze, 1970). However, subsequent research –and in fact a large body of data collected over the last 30 years– did not yield consistent validity evidence for DSM-defined categorical diagnoses. Instead, the gradual accumulation of inconsistent data has led some researchers to call for a root-and-branch review of diagnostic classification in psychiatry.

The DSM-5 development process was –especially at first– one effort to conduct that review. In the words of DSM-5 Task Force members (Regier, Narrow, Kuhl, & Kupfer, 2009), “As we began the DSM-V developmental process in 1999, a major concern was to address a range of issues that had emerged over the previous 30 years,” including “the basic definition of a mental disorder” (para. 7). There was hope for a “paradigm shift” in psychiatric diagnosis (Kupfer, First, & Regier, 2002, p. xix), and even though that aspiration has since been pushed to the back-burner (Kendler et al., 2009), the new manual will be published with markedly liberal revisions to DSMs III and IV.

The DSM-5 field trials (conducted in one phase, due the cancellation of plans for a second phase revealed an unexpected change from the previous two editions of the manual: reliability estimates for many major disorder categories had dropped well below not only those for DSM-III/IV-designed disorders, but also below commonly accepted standards (see Frances, 2012c). Furthermore, primary care doctors (family physicians and general practitioners) were not included in the field trials (American Psychiatric Association, 2011), despite the fact that they provide the majority of mental health treatment (Wang et al., 2007) and prescribe the majority of psychiatric medications (Mark, Levit, & Buck, 2009).

A primary tenet of empirical research holds that reliability is a necessary precondition for validity, as scientists cannot make stable claims about a concept that fluctuates empirically or lacks consensus among observers. Thus, before achieving common reliability standards, it is premature and untenable to introduce the DSM-5 revisions into hospitals, clinics, and general practice. Clinical research, likewise, should seek to establish psychometric stability before proceeding on the assumption that DSM-5 diagnostic categories are valid empirical entities. Epidemiological investigations may suffer from inconclusive findings and lack of continuity with research conducted using previous diagnostic definitions.

  • Did not receive a much-needed and widely requested external scientific review;

We recognize and appreciate that numerous professionals have worked hard to produce DSM-5, and have done so in good faith. However, many experts in the field have also spoken out in good faith about flaws in the document, and most of these flaws have not been resolved by the DSM-5 Task Force.

On January 9, 2012, the Open Letter Committee of the Society for Humanistic Psychology (Division 32 of the American Psychological Association) called for an external scientific review of the DSM-5 proposals by an independent group of researchers who are not affiliated with DSM-5 or the American Psychiatric Association (the full text can be found here: http://dsm5-reform.com/the-open-letter-committee-calls-for-independent-review-of-dsm-5/). This request was made in light of widespread reservation about the scientific status and safety of DSM-5 among mental health professionals and patient advocacy groups. An open letter to the DSM-5 Task Force and the American Psychiatric Association detailing these concerns (http://www.ipetitions.com/petition/dsm5/) was endorsed by more than 14,000 individuals and over 50 professional organizations, including 16 divisions of the American Psychological Association.

  • May compromise patient safety through the implementation of lowered diagnostic thresholds and the introduction of new diagnostic categories that do not have sufficient empirical backing;

DSM-5 has been criticized for lowering numerous diagnostic thresholds, i.e., reducing the number and severity of diagnostic criteria that are considered sufficient for a diagnosis to be made. The anticipated result is broad increase in the number of persons who qualify for a diagnosis of mental disorder, especially among individuals whose symptoms would have been considered subclinical in DSMs III and IV. In the third draft of the manual (formerly available for public viewing on dsm5.org), lowered diagnostic thresholds appeared in the proposed definitions for Generalized Anxiety Disorder, Somatic Symptom Disorder, Bulimia Nervosa, and Alcohol Use Disorder, among other diagnoses.

DSM-5 also introduces new disorders that did not appear in earlier editions of the manual. Among them: Premenstrual Dysphoric Disorder, Disruptive Mood Dysregulation Disorder, Somatic Symptom Disorder, and Mild Neurocognitive Disorder. These new diagnoses have generated significant controversy as a result of their questionable research backing and their potential for application to vulnerable populations, including children, the elderly, and persons with chronic medical illnesses. Some of the feared consequences of these new categories are as follows:

  • Somatic Symptom Disorder (a modification of the Somatoform Disorders in DSM-IV-TR) includes a new stipulation that will allow for the diagnosis of mental disorder in persons with chronic medical illness complaining of excessive pain. As a result, doctors may prematurely jump to the conclusion that “it’s all in the head” (Frances, 2012b, para. 3).
  • Disruptive Mood Dysregulation Disorder may be diagnosed in children and adolescents displaying significant mood swings (temper tantrums), which may be developmentally normal and resolve without treatment. Although the new category was invented with the aim of precluding the controversial practice of diagnosing Pediatric Bipolar Disorder, the latter diagnosis never existed in previous editions of the manual due to its questionable validity.
  • Mild Neurocognitive Disorder appears to describe normal cognitive decline that may be expected in elderly populations. Over-diagnosis of mental disorder and psychiatric treatment in the elderly –especially elderly populations in nursing homes– is already a nationwide problem in the US and other countries.
  • Premenstrual Dysphoric Disorder transforms severe PMS into a psychiatric disorder. In the past, similar proposals have been excluded from previous editions of the DSM due to substantial controversy and attention from women’s rights groups because of the risk of pathologizing women’s experience.

Altogether, the lowering of diagnostic thresholds and introduction of new disorders in DSM-5 has led to increasing concern about patient safety. Though it has been suggested that psychotropic medication may not be the first line of treatment for some of these diagnoses, the vast majority of psychiatric diagnoses are made in fast-paced treatment settings by general medical practitioners who do not have time to critically evaluate the research literature behind the DSM and often have few alternatives to prescribing medications.

Our duty in the medical and helping professions is, first and foremost, to do no harm. Thus, as mental health practitioners and researchers, we are greatly concerned about the introduction of empirically questionable diagnostic concepts into psychiatric and general medical practice.

  • Is the result of a process that gives the impression of putting institutional needs ahead of public welfare.

Several aspects of the DSM-5 development process reflect an apparent prioritization of institutional needs above patient safety and general public welfare. For example, the DSM-5 field trials were designed for implementation in two stages; the first was intended to address reliability, the second quality control. The second stage of the field trials was ultimately cancelled due to delays in the development process. Despite the importance of assessing quality control before the manual is used in patient care, DSM-5 will proceed with its expected May 2013 publication. For more information about the conduct and findings of the DSM-5 field trials, see Frances (2012a).

Additional concerns about the DSM-5 development process include hiring of a pubic relations firm (GYMR) to influence public opinion about the manual through a PR website (http://dsmfacts.org/), the lack of external scientific evaluation of the proposals, and the lack of a formal forensic review.

Because of the above, we fear that DSM-5:

  • May result in the mislabeling of mental illness in people who would fare better without a psychiatric diagnosis;

We have no doubt that many of the issues considered by DSM-5 constitute clinical and societal problems. It is worrying that many people are so affected by economic crises that they contemplate taking their own lives. Excessive alcohol or recreational drug use are dilemmas for individuals and societies. We have aging populations, troubled and disruptive children. It is a marker of humanitarian progress that we attempt to help people in distress. But, to take one example of many, it is unhelpful to suggest that a child throwing temper tantrums or a woman experiencing ‘period pains’ is mentally ill. It is unhelpful to suggest that a consumer seeking help from medical doctors is, by virtue of multiple complaints or visiting multiple doctors, mentally ill. Clients and the general public are negatively affected by the continued and continuous medicalization of their natural and normal responses to their experiences; responses which undoubtedly have distressing consequences that demand helping responses, but which do not reflect illnesses so much as normal individual variation. The mental health professions are uniquely suited for helping to create a better global society. But the application of inappropriate psychiatric labels is not a solution.

  • May result in unnecessary and potentially harmful treatment, particularly with psychiatric medication;

It is highly likely that, if a person receives a diagnosis under DSM-5, recommended treatment will involve medication. Recently, mounting empirical evidence has suggested that psychiatric medication, though helpful when used properly, may lead to iatrogenic consequences when used inappropriately. For example, antipsychotic medications, which are increasingly used to treat non-psychotic symptoms such as depression and anxiety, may lead to metabolic syndrome, obesity, diabetes, Parkinson’s-like movement disorders, neurocognitive decline, psychotic symptoms, reduced brain volume, and significantly shortened lifespan (Ho, Andreasen, Ziebell, Pierson, & Magnotta, 2011; Olfman & Robbins, 2012; Robbins, Higgins, Fisher, & Over, 2011; Whitaker, 2010). .

  • May divert precious mental health resources away from those who most need them.

Mental health problems affect one person in every four, making them the leading cause of disability worldwide (World Health Organization, 2012), at an estimated cost of $2,500 billion in 2010 (Bloom et al, 2011). The provision of high-quality and appropriate mental health care is an urgent global issue. Although the aspiration to improve the well-being of all citizens may be laudable, the use of scientifically unstable diagnoses will only confuse a complex picture and lead to the inappropriate investment of scarce resources. Since mental health problems disproportionately affect poor and socially excluded people, questionable diagnostic systems risk further disadvantaging the most vulnerable.

Committee Members

Richard Bentall; Professor of Clinical Psychology, University of Liverpool, UK

Mary Boyle; Emeritus Professor of Clinical Psychology, University of East London, UK

Pat Bracken; Consultant Psychiatrist and Clinical Director of Mental Health Services, West Cork, Eire

Joanne Cacciatore; Assistant Professor; Arizona State University School of Social Work, USA

Tim Carey; Associate Professor, Flinders University, Australia

David Castle; Professor of Psychiatry, University of Melbourne, Australia

Jack Carney; Licenced Psychologist, Alabama, USA

Anne Cooke; Clinical Psychologist, Canterbury Christ Church University, UK

Jacqui Dillon; Chair; Hearing Voices Network, UK

Suman Fernando; Consultant Psychiatrist, UK

Daniel Fisher; Consultant Psychiatrist, National Empowerment Centre, USA

Dave Harper; Reader in Clinical Psychology, University of East London, UK

Louis Hoffman; Continuing Education Coordinator, Society for Humanistic Psychology, USA

Lucy Johnstone; Clinical Psychologist, Bristol UK

Dayle Jones; Associate Professor, University of Central Florida, USA

Sarah Kamens; Society for Humanistic Psychology, USA

Peter Kinderman; Professor of Clinical Psychology, University of Liverpool, UK

Patrick Landman; Psychiatrist and Psychoanalyst; Paris, France

Eleanor Longden; Psychologist, London UK

Jason McCarty; Psychotherapist, British Columbia, Canada

Nancy McWilliams; Psychologist and Psychoanalyst, Rutgers University, USA

Gordon Milson; Clinical Psychologist, Manchester, UK

Bradley Olsen; President-Elect, Division 48 of American Psychological Association; President, Psychologists for Social Responsibility, Chicago, USA

Ana Padilla; University College London, London UK

Richard Pemberton; Chair, British Psychological Society Division of Clinical Psychology, UK

Dave Pilgrim; Professor of Health and Social Policy, University of Liverpool, UK

John Read; Professor of Clinical Psychology, University of Auckland, NZ

Melissa Raven; Research Fellow, Flinders University, Australia

Brent Robbins; President, Society for Humanistic Psychology, Div32 American Psychological Association, USA

Dave Traxsom; Educational Psychologist, UK

Sara Tai; Senior Lecturer in Clinical Psychology, University of Manchester, UK

Phil Thomas; Honorary Visiting Professor, University of Bradford, formerly consultant psychiatrist, UK

Sam Thompson; University of East London, UK

Sami Timimi; Consultant Psychiatrist, UK

Steve Trenchard; Chair, International Society for the Psychological Treatment of Schizopnrenia and other Psychoses

Martin Whitely; MLA, Parliament of Western Australia, Australia

References

American Psychiatric Association. (2011, March 18). Protocol for DSM-5 field trials in routine clinical practice settings. Retrieved 17 March from http://www.dsm5.org/Research/Documents/DSM5%20FT%20RCP%20Protocol%2003-19-11%20revlc.pdf

Bloom, D.E., Cafiero, E.T., Jané-Llopis, E., Abrahams-Gessel, S., Bloom, L.R., Fathima, S. … Weinstein, C. (2011) The global economic burden of noncommunicable diseases. Geneva: World Economic Forum. Retrieved from http://www3.weforum.org/docs/WEF_Harvard_HE_GlobalEconomicBurdenNonCommunicableDiseases_2011.pdf

Feighner, J. P., Robins, E., Guze, S. B., Woodruff, R. A., Winokur, G., & Munoz, R. (1972). Diagnostic criteria for use in psychiatric research. Archives of General Psychiatry, 26, 57-63. http://archpsyc.jamanetwork.com/article.aspx?articleid=490573

Frances, A. (2012a, October 31). DSM-5 field trials discredit the American Psychiatric Association. Huffington Post. Retrieved from http://www.huffingtonpost.com/allen-frances/dsm-5-field-trials-discre_b_2047621.html

Frances, A. (2012b, December 28). Mislabeling medical illness as mental disorder. DSM-5 in Distress: Psychology Today. Retrieved February 18, 2013 from http://www.psychologytoday.com/blog/dsm5-in-distress/201212/mislabeling-medical-illness-mental-disorder

Frances, A. (2012c, May 6). Newsflash from APA meeting: DSM-5 has flunked its reliability tests. Psychology Today: DSM-5 in Distress. Retrieved from http://www.psychologytoday.com/blog/dsm5-in-distress/201205/newsflash-apa-meeting-dsm-5-has-flunked-its-reliability-tests

Ho, B-C., Andreasen, N. C., Ziebell, S., Pierson, R., & Magnotta, V. (2011). Long-term antipsychotic treatment and brain volumes. Archives of General Psychiatry, 68, 128-137. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3476840/

Mark, T. L., Levit, K. R., & Buck, J. A. (2009). Datapoints: psychotropic drug prescriptions by medical specialty. Psychiatric Services, 60(9), 1167. Retrieved from http://ps.psychiatryonline.org/data/Journals/PSS/3889/09ps1167.pdf

Olfman, S., & Robbins, B.D. (2012). Drugging our children. Santa Barbara, CA: Praeger. http://www.abc-clio.com/product.aspx?isbn=9780313396830

Papanikolaou, P. N., Churchill, R., Wahlbeck, K., & Ioannidis, J. P. (2004). Safety reporting in randomized trials of mental health interventions. American Journal of Psychiatry, 161(9), 1692-1697. Retrieved from http://ajp.psychiatryonline.org/article.aspx?articleid=177043

Regier, D. A., Narrow, W. E., Kuhl, E. A., & Kupfer, D. J. (2009). The conceptual development of the DSM-V. American Journal of Psychiatry, 166(6), 645-650. Retrieved from http://ajp.psychiatryonline.org/article.aspx?articleid=100852

Robbins, B.D., Higgins, M., Fisher, M., & Over, K. (2011). Conflicts of interest in research on antipsychotic treatment of pediatric bipolar disorder, temper dysregulation disorder, and attenuated psychotic symptoms syndrome: Exploring the unholy alliance between big pharma and psychiatry. Journal of Psychological Issues in Organizational Culture, 1(4), 32-49. http://onlinelibrary.wiley.com/doi/10.1002/jpoc.20039/abstract

Robins, E., & Guze, S. B. (1970) Establishment of diagnostic validity in psychiatric illness: its application to schizophrenia. American Journal of Psychiatry, 126, 983-987. http://ajp.psychiatryonline.org/article.aspx?articleID=151746

Spitzer, R. L., Forman, J. B., & Nee, J. (1979). DSM-III field trials: I. initial interrater diagnostic reliability. American Journal of Psychiatry, 136, 815-817.

​Wang, P. S., Aguilar-Gaxiola, S., Alonso, J., Angermeyer, M. C., Borges, G., Bromet, E. J. … Wells, J. E. (2007). Use of mental health services for anxiety, mood, and substance disorders in 17 countries in the WHO world mental health surveys. Lancet, 370(9590), 841-850. Retrieved from

Whitaker, R. (2010). Anatomy of an epidemic. New York, NY: Random House. http://www.amazon.co.uk/Anatomy-Epidemic-Bullets-Psychiatric-Astonishing/dp/0307452425/ref=sr_1_1?ie=UTF8&qid=1363113445&sr=8-1

World Health Organization. (2012) Global status report on non-communicable diseases 2010. Geneva: World Health Organization. www.who.int/nmh/publications/ncd_report_full_en.pdf

 

 

The Hearing Voices Movement: In Response to a Father – ‘My Daughter, the Schizophrenic’

Originally posted on: http://www.madinamerica.com/

There was a heart-breaking and disturbing story in yesterday’s Guardian newspaper entitled, My Daughter, the Schizophrenic’, (1) which featured edited extracts from a book written by the father of a child called Jani. He describes how Jani is admitted into a psychiatric hospital when she is 5, diagnosed with schizophrenia when she is 6 and by the time she is 7, she has been put on a potent cocktail of psychotropic medications:

”Jani is on three medications: Clozapine, lithium and Thorazine (known in the UK as Largactil). This combination has been the most successful. Are her hallucinations completely gone? No, but as she will tell us, they are not bothering her. It’s like having the TV on in the background, volume turned down, while you’re doing something, and every so often you look up at the screen to see what 400 the cat and other hallucinations are doing. They remain on Jani’s periphery, but she can still function in our common reality.”(2)

This harrowing description exemplifies the worst excesses of responding to a deeply troubled child’s distress as if it were a pathological illness, with the full psychiatric arsenal. What ensues can only be described as an account of psychiatric, human rights abuse.

If only Jani and her family were offered alternative kinds of help such as that developed by Voice Collective, (3) a London-wide project set up to support children and young people who hear, see and sense things others don’t. Voice Collective works with children, young people & families, and with professionals and organisations offering a whole range of services including peer support groups, so young people can meet with other young people with similar experiences, creative workshops, 1-2-1 support around making sense of voices and finding coping strategies, an online support forum. Voice Collective also offers a range of support services to families as well as supporting schools, social services, child and adolescent mental health services and other youth agencies to work with children & young people who have these experiences.

As one parent who has been supported by Voice Collective said:

‘You have brought us ‘normality’ within these experiences. You have taught us that with the appropriate support young people can lead happy and successful lives. You recognise the love we have for our children and have taught us how to support them”.

– Mother of a 12 year old           

How different things could be for Jani, her family and countless other children and families around the world if there were greater awareness that such humane and healing alternatives exist; approaches which help without doing more harm.

Questions, comments and/or reflections are welcome on this website or via Twitter @JacquiDillon

Jacqui Dillon’s website: http://www.jacquidillon.org

(1)  http://www.guardian.co.uk/society/2013/jan/19/my-daughter-the-schizophrenic

(2)  January First: A Child’s Descent Into Madness And Her Father’s Struggle To Save Her, by Michael Schofield, published on 1 February by Hardie Grant Books.

(3)  http://www.voicecollective.co.uk/

 

Jani and her family originally appeared on the Oprah show in 2009. Many of us within the Hearing Voices Movement were so saddened and disturbed by Jani’s treatment that we wrote an open letter to Oprah Winfrey. Here is the open letter from INTERVOICE – the International Network for Training, Education and Research into Hearing Voices – an international organisation dedicated to spreading positive and hopeful messages about the experience of hearing voices across the world, reprinted again.

Dear Oprah,           

We are writing in response to your programme about “The 7-Year-Old Schizophrenic”, which concerned Jani, a child who hears voices, which was broadcast on the 6th October 2009. We hope to correct the pessimistic picture offered by the mental health professionals featured in your programme, and in the accompanying article on your website. What upset us most and moved us to write to you, is that parents will have been left with the impression that they are powerless to help their children if they hear voices. We are also concerned that the programme gave the impression that children with voices must be treated with medication. We note that the medications mentioned in your programme all have very serious side effects. (For example, antipsychotics such as Haldol cause neuronal loss, block the dopamine pathways in the brain required to processes rewarding stimuli, and carry a high risk of neurological and metabolic side effects such as Parkinsonianism and diabetes. Their effects on the developing brain are largely unknown and, in our view, they should only be given to children as a treatment as absolutely last resort.)

We have been researching and working with adults and children like Jani for the last twenty years, and our work has led us to very different conclusions from those reached by the mental health professionals on your programme. One of our founding members, Dr. Sandra Escher from the Netherlands, has spent the last fifteen years talking to children who hear voices, and to their parents and carers. This work is the most detailed and thorough investigation of children who hear voices carried out to date [1, 2]. The most important findings from recent research on hearing voices are as follows:

Prevalence of voice hearing in adults and children

Recent large-scale population (epidemiological) studies have shown that about 4-10 % of the adult population hear voices at some time in their lives [3-5]. Only about a third seek assistance from mental health services. Amongst children, the proportion hearing voices may be even higher [6] and, again, only a minority are referred for treatment. Hence, it is wrong to assume that voice hearing is always a pathological condition requiring treatment.

Psychological mechanisms

Everyone has an inner voice. Psychologists call this phenomenon ‘inner speech’ and it is an important mechanism that we use to regulate our own behaviour (plan what we want to do, direct our own actions). Child psychologists have long understood that this ability begins to develop at about 2-years of age [7, 8]. Hearing voices seems to reflect some kind of differentiation in the mind’s ability to tell the difference between inner speech and the heard speech of other people [9, 10].

Link to trauma

A common theme in research with both adults and children is the relationship between hearing voices and traumatic experiences. In adults, around 75% begin to hear voices in relationship to a trauma or situations that make them feel powerless [11-13], for example the death of a loved one, divorce, losing a job, failing an exam, or longer lasting traumas such as physical, emotional or sexual abuse. The role of trauma was identified in 85% of the children we have studied, for example being bullied by peers or teachers, or being unable to perform to the required level at school, or being admitted to a hospital because of a physical illness. In short, our research has shown that hearing voices is usually a reaction to a situation or a problem that the child is struggling to cope with.

Voices have a meaning. A related and equally striking finding is that the voices often refer to the problem that troubles the child, but in an elliptical manner. To take just one example from the children studied by Sandra Escher:

The voices told an 8-year-old boy to blind himself. This frightened his mother. But when we discussed whether there was something in the life of the boy he could not face, she understood the voices’ message. The boy could not cope with his parents’ problematic marriage. He did not want to see it.

We wonder whether anyone has attempted to establish why, in Jani’s case, the rat is called “Wednesday”, why the girl is called “24 Hours”, and why is the cat called “400″? What do these mean for her? Why does Jani want people to call her “Blue-Eyed Tree Frog” and “Jani Firefly”?

Good outcomes without treatment

Recently, Sandra Escher conducted a three-year follow up study of eighty children who heard voices, aged between 8 and 19 [1]. Half received mental health care but the other half were not given any specialist care at all. The children were interviewed four times, at yearly intervals. By the end of the research period 60% of the children reported that their voices had disappeared. Very often, this was because the triggering problems were dealt with or because the child’s situation changed – for example, following a change of schools.

Helping children who hear voices: Advice to parents

It is important to appreciate that the desire to make voices disappear, although usually the goal of the mental health care services, is not necessarily in the best interests of children. Some children do not want to lose their voices. If children can find within themselves the resources to cope with their voices, they can begin to lead happier and more balanced lives.

The most important element in this process is support from the family. Unfortunately, we have found that mental health services often fail to have a positive effect on children’s voices, because they foster fear rather than coping. However, we have found that referral to a psychotherapist who is prepared to discuss the meaning of voices is often helpful.

It is important that parents do not assume that hearing voices is a terrible disaster but instead regard it as a signal that something is troubling their child. If parents assume that voices are a symptom of an illness, and are afraid of them, the child will naturally pick up on this feeling. This can lead to a self-defeating cycle in which the child becomes fearful and obsessed by the voices.

We would like to offer this 10-point guide for parents, indicating what they can do if a child tells them that he or she hears voices:

1. Try not to over react. Although it is understandable that you will be worried, work hard not to communicate your anxiety to your child.

2. Accept the reality of the voice experience for your child; ask about the voices, how long the child has been hearing them, who or what they are, whether they have names, what they say, etc.

3. Let your child know that many other children hear voices and that usually they go away after a while.

4. Even if the voices do not disappear your child may learn to live in harmony with them.

5. It is important to break down your child’s sense of isolation and difference from other children. Your child is special – unusual perhaps, but really not abnormal.

6. Find out if your child has any difficulties or problems that he or she finds very hard to cope with, and work on fixing those problems. Think back to when the voices first started. What was happening to your child at the time? Was there anything unusual or stressful occurring?

7. If you think you need outside help, find a therapist who is prepared to accept your child’s experiences and work systematically with him or her to understand and cope better with the voices.

8. Be ready to listen to your child if he or she wants to talk about the voices. Use drawing, painting, acting and other creative ways to help the child to describe what is happening in his or her life.

9. Get on with your lives and try not to let the experience of hearing voices become the centre of your child’s life or your own.

10. Most children who live well with their voices have supportive families who accept the experience as part of who their child is. You can do this too!

Conclusion

In conclusion we would like to stress that, in our view, labelling a seven-year-old child as schizophrenic and subjecting her to powerful psychotropic medication and periodic hospitalisation is unlikely to help resolve her problems. Indeed, the opposite is most probable: children treated in this way will simply become more powerless. Because your well respected, award winning show reaches out to so many people, we are concerned that there will be many viewers who will be left with the impression that the treatment Jani receives is the only method available. We fear that this may cause some children to be subjected to an unnecessary lifetime in psychiatric care. It is very important to recognise that hearing voices, in itself, is not a sign of psychopathology.

We hope you will give consideration to the possibility of making a future programme showing the other side of the story, one of hope, optimism and with a focus on recovery. Perhaps you could make a programme about a child with similar voice experiences to Jani, who has been helped to come to terms with her or his experiences and to discuss with the child, parents and therapists how this was achieved? If there is any way we could help make this happen, please contact us.

We look forward to hearing from you on the issues raised in our letter.

Yours sincerely,

Paul Baker

INTERVOICE coordinator

(Letter re-edited with the kind assistance of Professor Richard Bentall)

Selected bibliography:

1.         Escher, S., et al., Independent course of childhood auditory hallucinations: A sequential 3-year follow-up study. British Journal of Psychiatry, 2002. 181 Suppl 43: p. 10-18.

2.         Escher, S., et al., Formation of delusional ideation in adolescents hearing voices: A prospective study. American Journal of Medical Genetics (Neuropsychiatric Genetics), in press.

3.         Tien, A.Y., Distribution of hallucinations in the population. Social Psychiatry and Psychiatric Epidemiology, 1991. 26: p. 287-292.

4.         van Os, J., et al., Strauss (1969) revisited: A psychosis continuum in the normal population?Schizophrenia Research, 2000. 45: p. 11-20.

5.         van Os, J., et al., Prevalence of psychotic disorder and community level of psychotic symptoms: An urban-rural comparison. Archives of General Psychiatry, 2001. 58: p. 663-668.

6.         Poulton, R., et al., Children’s self-reported psychotic symptoms and adult schizophreniform disorder: A 15-year longitudinal study. Archives of General Psychiatry, 2000. 57: p. 1053-1058.

7.         Berk, L.E., Why children talk to themselves. Scientific American, 1994: p. 61-65.

8.         Vygotsky, L.S.V., Thought and language. 1962, Cambidge, Mass: MIT Press.

9.         Alleman, A. and F. Laroi, Hallucinations: The science of idiosyncratic perceptions. 2008, Washington: American Psychological Association.

10.       Bentall, R.P., Madness explained: Psychosis and human nature. 2003, London: Penguin.

11. Read, J., et al., Sexual and physical abuse during childhood and adulthood as predictors of hallucinations, delusions and thought disorder. Psychology and Psychotherapy: Theory, Research and Practice, 2003. 76: p. 1-22.

12. Hammersley, P., et al., Childhood trauma and hallucinations in bipolar affective disorder: A preliminary investigation. British Journal of Psychiatry, 2003. 182: p. 543-547.

13. Shevlin, M., M. Dorahy, and G. Adamson, Childhood traumas and hallucinations: An analysis of the National Comorbidity Survey. Journal of Psychiatric Research, 2007. 41: p. 222-228.

Signed by 155 people from 20 countries, listed in order of the time they were received.

Dr. Sandra Escher, – Board member of INTERVOICE, The Netherlands

Professor Marius Romme, psychiatrist, MD, PhD, President of INTERVOICE, The Netherlands

Dirk Corstens, Social psychiatrist and psychotherapist, Chair of INTERVOICE, The Netherlands

Paul Baker, coordinator of INTERVOICE, Spain

Jacqui Dillon, consultant trainer and voice hearer, chair of Hearing Voices Network England, board member of INTERVOICE, UK

Ron Coleman, consultant trainer and voice hearer, board member of INTERVOICE, UK

Hywel Davies, chair of Hearing Voices Network Cymru (Wales), honorary board member of INTERVOICE; UK

Amanda R. E. Aller Lowe, MS, LPC, LCPC, QMRP – Agency Partner, Communities In Schools & Area Representative, The Center for Cultural Interchange, Aurora, Illinois, INTERVOICE supporter, USA

Adrienne Giacon, Secretary and Hearing Voices Network Support group facilitator Hearing Voices Network Aotearoa, INTERVOICE member, New Zealand

Dr John Read, Associate Professor, Psychology Department, The University of Auckland, Auckland, New Zealand

Ann-Louise S. Silver, MD, founder and past president, International Society for the Psychological Treatments of Schizophrenia and Other Psychoses (www.isps-us.org), ISPS-US, USA

Matthew Morrissey, MA, MFT, Board Member, MindFreedom International, Northern California Coordiator, ISPS-US, San Franciso, USA

Irene van de Giessen, former voice hearer and foster-daughter of Willem van Staalen and Willem van Staalen, voice integrating foster-father of Irene, The Netherlands

Olga Runciman, consultant trainer and voice hearer (BSc psychiatric nurse and graduate student in psychology), INTERVOICE member, Denmark

Professor Wilma Boevink, Chair of Stichting Weerklank (Netherlands Hearing Voices Network), Professor of Recovery, Hanze University; Trimbos-Institute (the Dutch Institute of Mental Health and Addiction), Netherlands

Marian B. Goldstein, voicehearer, (fully recovered thanks to trauma-focussed therapy, the opportunity to make sense of the voices) INTERVOICE supporter, Denmark

Professor Dr J. van Os, Department of Psychiatry and Neuropsychology, Maastricht University Medical Centre, Maastricht, INTERVOICE supporter, Netherlands

Virginia Pulker, Mental health Occupational Therapist with young people with psychosis, recovery promoter, HVN Australia, Northern Ireland and England. INTERVOICE supporter, UK/Australia

Professor Richard Bentall, PhD, Chair Clinical Psychology, University of Bangor, INTERVOICE supporter, Wales, UK

Alessandra Santoni, professional working in a Mental Health Service of Milan, voice hearer and facilitator of a hearing voices group, INTERVOICE supporter,Italy

Geraldo Peixoto and Dulce Edie Pedro dos Santos, São Vicente – Est. São Paulo – INTERVOICE supporter, Brasil

Joanna & Andrzej Skulski, INTERVOICE supporters, Polska

Darby Penney, INTERVOICE supporter and President, The Community Consortium, Inc., Albany, NY, USA

Jacqueline Hayes, researcher at Manchester University about hearing voices in ‘non-patients’ and therapist, UK

Phil Virden, MA, MA, Executive Editor, Asylum Magazine, UK

Matthew Morris, Mental Health Locality Manager, East Suffolk Outreach Team, Suffolk Mental Health Partnerships NHS Trust, INTERVOICE supporter, UK

Ros Thomas, Young Peoples Worker, Gateway Community Heath, Wodonga Victoria, INTERVOICE supporter, Australia

Dr. Rufus May Dclin/ Consultant Clinical Psychologist, INTERVOICE supporter, UK

Dr. Simon Jones, INTERVOICE supporter, UK

Dr. Louis Tinnin, Psychiatrist, Morgantown, West Virginia, USA

Linda Gantt, PhD, Intensive Trauma Therapy, Inc., USA

Burton Norman Seitler, Ph.D., New Jersey Institute for training in Psychoanalysis and Psychotherapy, Child and Adolescence Psychotherapy Studies

Ron Bassman, PhD., Founding member of International Network Towards Alternatives for Recovery (INTAR), Past president of The National Association for Rights Protection and Advocacy, USA

Michael O’Loughlin, Adelphi University, NY, USA

Dorothy Scotten, Ph.D., LCSW, USA

Marilyn Charles, Ph.D., The Austen Riggs Center, USA

Bex Shaw, Psychotherapist, London, UK

Ira Steinman, MD, author of “TREATING the ‘UNTREATABLE’ : Healing in the Realms of Madness”, USA

Mike Lawson, Ex Vice Chair National MIND UK 1988-1992, INTERVOICE supporter, UK

Dr. Dan L. Edmunds, Ed.D., B.C.S.A., International Center for Humane Psychiatry, USA

Ron Unger LCSW, Therapist, USA

Daniel B Fisher (Boston, MA): Person who recovered from what is called schizophrenia, Executive Director National Empowerment Center; National Coalition of Mental Health Consumer/survivor Org., member of Interrelate an international coalition of national consumer/user groups, community psychiatrist, Cambridge, Mass., USA

Mary Madrigal, USA

Paul Hammersley, University of Manchester, INTERVOICE supporter, UK

Phil Benjamin, mental health nurse and voices consultant, Australia

Eleanor Longden, Bradford Early Intervention in Psychosis Service, England, UK

Karen Taylor RMN, director Working to Recovery, Scotland, UK

Bill George, MA, PGCE, Member of the Anoiksis Think Tank, Netherlands

Dr Andrew Moskowitz, Senior Lecturer in Mental Health, University of Aberdeen, Scotland, UK

John Exell, BA(Hons), Dip Arch, voice-hearer, sculptor, artist, writer, poet, UK.

Tineke Nabben, a voice hearer who has learned to cope with her voices and student, learning to help other children and parents to cope with their voices. Germany

Marcello Macario, psychiatrist, Community Mental Health Centre of Carcare, Italy, INTERVOICE supporter, Italy

Ian Parker, Professor of Psychology, co-director of the Discourse Unit, Manchester Metropolitan University, England, UK

David Harper, PhD, Reader in Clinical Psychology, School of Psychology, University of East London, England, UK

Wakio Sato, representative of the Hearing Voices Network – Japan. President of the Japanese Association of Clinical Psychology. The representative of an NPO named “Linden” for community mental health in Konko town, Okayama prefecture, Japan

Suzette van IJssel, Ph.D., spiritual counsel and voice hearer, Utrecht, The Netherlands

Jeannette Woolthuis, psycho-social therapist working with children hearing voices, The Netherlands

Dr. Louise Trygstad, Professor Emerita, University of San Francisco School of Nursing, USA

Erik Olsen, Board member ENUSP European Network of Users (x)-users and Survivors of Psychiatry and Executive Committee in European Dsability Forum (EDF)

Astrid Zoetbrood, recovered from psychosis and voices, the Netherlands

Christine Brown, RMN, Hearing Voices Network Scotland, INTERVOICE supporter, UK

Rachel Waddingham, Manager of the London Hearing Voices Project (inc. Voice Collective: Young People’s Hearing Voices Project), trainer and voice-hearer, UK

Joel Waddingham, Husband and supporter of someone who hears voices, sees visions and has other unusual experiences, UK

Professor Robin Buccheri, RN, MHNP, DNSc, University of San Francisco, CA, USA

Jørn Eriksen, Board member of INTERVOICE, the Danish Hearing Voices Network and The International Mental Health Collaboration Network, Denmark

Douglas Holmes, voice hearer working in a Mental Health Service in Darlinghurst, Sydney, and facilitator of a hearing voices group, INTERVOICE supporter, Australia

Matthew Winter, Student Mental Health Nurse and INTERVOICE supporter

Anneli Westling, Relative of a voice hearer from Stockholm, Sweden

Lia Govers, recovered voice hearer, Italy

Molly Martyn, MA in Clinical Mental Health, Hearing Voices Network of Denver, USA

Tsuyoshi Matsuo, MD, INTERVOICE supporter, Japan

Janet M. Patterson RN, BSN, USA

Odette Nightsky, Sensitive Services International, Australia

Barbara Belton, M.S., M.S. trauma survivor who has recovered and former behavioral health professional, USA

Luigi Colaianni, PhD sociologist, researcher, Community Mental Health Centre, Milano, Italy

Teresa Keedwell, Voice Hearer Support Group, Palmerston North, New Zealand

Maria Haarmans, MA, Canadian Representative INTERVOICE, Canada

Ami Rohnitz, Voice hearer, Sweden

Sharon Jones, University of York, INTERVOICE Supporter, England, UK

Gail A. Hornstein, PhD, Professor of Psychology, Mount Holyoke College, USA

Siri Blesvik, INTERVOICE supporter, Norway

Lynn Seaton, mental health nurse, Scottish Hearing Voices Network and INTERVOICE supporter, UK

Rozi Pattison, Clinical Psychologist, CAMHS, Kapiti Health Centre, PARAPARAUMU, New Zealand

Suzanne Engelen, Experience Focussed Counselling Institute (efc) and member of INTERVOICE. She is an expert by experience and also works for Weerklank (Dutch Hearing Voices Network) and the TREE project, The Netherlands

Susie Crooks, Voice hearer, Mad & Proud, Hawkes Bay, New Zealand

Lloyd Ross, Ph.D., FACAPP., P.A., New Jersey, USA

Catherine Penney, RN, USA

Nancy Burke, PhD, Northwestern University Medical School, Chicago Center for Psychoanalysis, USA

Nels Kurt Langsten, M.D., USA

Michael S. Garfinkle, PhD, New York, USA

Andy Phee RMN, community mental health nurse, Kings Cross, London ,facilitated a hearing voices group for 10 years, member of the London Hearing Voices Project advisory group. England, UK

Helen Sheppard, AMHP, West Yorkshire, England, UK.

Dr Gillian Proctor, Clincial Psychologist. Bradford, UK

Jane Forrest, sister of voice hearer, Sweden

Tami Williams, Ph.D., Licensed School Psychologist, Clinical Psychologist, Psychiatric Survivor, USA

Lone Jeppesen, Works as a social teacher in an institution with a lot of voice hearers and the diagnosis of schizophrenia, INTERVOICE supporter, Denmark

Judith Haire, author and voice hearer, Ramsgate, Kent, England, UK

Peter Lehmann, Peter Lehmann Publishing, Berlin, Germany / Eugene, OR / Shrewsbury, UK

Sigari Luckwell, Senior Clinical Psychologist, Bunbury Clinic, INTERVOICE supporter, Western Australia

Will Hall, voice hearer with schizophrenia diagnosis, founder of Portland hearing voices, host of madnessradio.net, USA

Richard Gray, specialist mental health support worker, random hearer/ seer of voices, visions and past lives. HVN NZ treasurer. New Zealand

Jacqueline Roy, Department of English, Manchester Metropolitan University, England, UK

Dr Mike Jackson, Consultant Clinical Psychologist, Betsi Cadwaldr University Health Board, North Wales

Frank Blankenship, Chair of Affiliate Support Committee, MindFreedom International, MindFreedom Florida Gainesville, Florida USA

Dorothy Dundas, psychatric survivor, MA, USA

Sigrun Tømmerås, mental health acitvist/ childhood abuse survivor, Norway

Karyn Baker BSW, MSW, RSW, Executive Director, Family Outreach and Response Program, Toronto, Canada

Monika Hoffmann psychologist and co-founders of the “NeSt”, the German Hearing Voices Network, Germany

Paul Beelen connected to the INTERVOICE network and voice hearer, The Netherlands

Rossa Forbes Holistic Schizophrenia, North America

Teresa Keedwell Voice Hearer Support Group, Palmerston North New Zealand

Yutaka Fujimoto Psychologist, Tokyo Metropolitan Govemment Mental Health and Welfare Cente, vice president of the Japanese Association of Clinical Psychology, member of the Hearing Voices Network Japan. Tokyo, Japan

Cheontell Barnes High support mental health worker and voices group co-facilitator Brighton UK

Yutaka Fujimoto Psychologist, Tokyo Metropolitan Govemment Mental Health and Welfare Cente, vice president of the Japanese Association of Clinical Psychology, member of the Hearing Voices Network Japan. Tokyo, Japan

Pino Pini, Psychiatrist, Mental Health Europe, INTERVOICE supporter, Italy

Ivona Amleh Psychiatrist, Bethlehem Psychiatric Hospital, Palestine

John Robinson, Integrative Therapist (and voice hearer) for the Hearing Voices Project, SE London

Yann Derobert Psychotherapist, France

Indigo Daya , Voices Vic Project Manager, Melbourne, Australia

Stephen McGowan , Early Intervention in Psychosis Lead. Yorkshire and the Humber Improvement Programme, UK

Adam James Editor and award winning journalist, psychminded.co.uk, UK

Tori Reeve, counsellor, member of HVN, Intervoice supporter, UK.

A. C. Sterk MA Psychologist and psychotherapist, director of the Ann Lee Centre community mental health project, and person with previous experience of psychosis. Manchester, UK.

Geoff Brennan Nurse Consultant Psychosocial Interventions for Acute Inpatient Care, Berkshire healthcare NHS Foundation Trust, Co-editor Serious Mental Illness a manual for clinical practice”, UK

Lyn Mahboub voice hearer, trainer, consultant, mother, daughter, student, teacher and, also, one who has navigated the psychiatric service system, Australia

Kristin Hedden, Ph.D. VA Puget Sound Health Care System, Tacoma, Washington, USA 126

Agna Bartels MSc , psychologist and researcher in the University Medical Center Groningen, The Netherlands.

Rita Brooks, BS in Human Services Recovery Consultant, writer and producer of DVD called: The Reality of Recovery, Covington, Kentucky, USA

Angel Moore David Romprey Oregon Warmline, Oregon, USA

Chuck Hughes Corresponding Secretary Los Angeles County Clients Coalition, USA

Amy Sanderson, Bradford Early Intervention in Psychosis Team, UK

Pam Pinder parent of voice hearer, Plymouth, Devon, UK

Gerard van de Willige MSC psychologist and researcher, University Medical Center Groningen, The Netherlands

Mette Askov voice hearer with the diagnosis of schizoprenia and on the road to recovery, INTERVOICE supporter, Denmark

Claire Attwood , Voice hearer and mental health support worker, Isle of Wight. UK,

Alberto Diaz MSc Argentinian psychologist, PhD student in collective health at Universidade Estadual de Campinas, researching mental health, special interest schizophrenia, Campinas, São Paulo, Brazil

Barney Holmes, running a Level 1 Affiliate – MindFreedom, Lancaster, UK

Cindy Highsmith Myron, psychiatric survivor, completely recovered from voice hearing and severe mental illness, mental health professional and life coach for persons with mental illness in a self-directed care program, INTERVOICE supporter, Florida, USA

Mad Hatters of Bath. We are a group of people who have experienced mental extremes, including hearing voices and seeing visions. Bath, England, UK

Karin Daniels, mother of a voice hearing daughter who suffered a lot, but who has now recovered. Maastricht, The Netherlands

Jim Probert, PhD Psychologist, Student Health Care Center, University of Florida, USA

Dr David Lee Clinical Psychologist, Dept of Psychological Therapies, Royal Bolton Hospital, Bolton, Supporter of INTERVOICE, UK

Professor Sue Cowan, Registered Mental Health Nurse and Chartered Health Psychologist, University of Abertay Dundee, Scotland, UK

Paul Harris psychotherapist and support worker based in the UK

Marina Beteva voices hearer for 8-9 years, on medication treatment, Moscow, Russia

Monica Cassani North Carolina, USA

Rikke Bitsch Denmark

Afaf Swaity Nursing Director of Bethlehem Psychiatric Hospital, Palestine

Mary Maddocks MindFreedom Ireland, Ireland

Tania Linden North Lincolnshire Early Intervention Service, UK

Rosemaree Ashford honours psychology student, recovery worker, Richmond Fellowship of WA, Australia

Gemma Hendry Trainee Clinical Psychologist with a specialist interest in Community Psychology and Voice hearing, UK

Erica van den Akker Social worker in Forensic Psychiatry, The Netherlands

Caroline von Taysen psychologist, Netzwerk Stimmenhören, Germany and Normal Difference, Mental Health Kariobangi in Kenya, Germany

Poppy Rollinson Mental Health Nurse, Brighton, UK

Vanessa Jackson Healing Circles, Inc. , USA

Dr. Julie Arthur Kirby Supporter of INTERVOICE and Senior Lecturer, UK

Peter Bullimore Expert by experience, Asylum Associates, UK

Paul Cheminais voice hearer, Bournemouth, UK 159

See: http://www.intervoiceonline.org/news-events/campaigns/open-letter-oprah/dear-opra

 

The Hearing Voices Movement: Beyond Critiquing the Status Quo

Originally posted on: http://www.madinamerica.com/

I am thrilled to have been invited to write about the important and innovative work of the Hearing Voices Movement alongside so many eminent colleagues, critical thinkers and activists working together to bring about an essential revolution in the world of mental health.

We have just celebrated the anniversary of the rapidly expanding, global Hearing Voices Movement which was founded more than twenty-five years ago following the ground-breaking research of Professor Marius Romme and Dr Sandra Escher. Romme and Escher have advocated for a radical shift in the way we understand the phenomenon of Hearing Voices; in contrast to traditional, biomedical psychiatry which views voices as an aberrant by-product of genetic, brain and cognitive faults, their research has firmly established that voices make sense when taking into account the traumatic circumstances that frequently provoke them (Romme and Escher, 1989, 2000, 2009, 2011). While ‘auditory hallucinations’ is the preferred jargon within psychiatric literature, the term ‘hearing voices’, which uses ordinary, non pathologising language framed subjectively, has been reclaimed. This is part of a wider aim within the mental health user movement to decolonise medicalised language of human experience.

Romme and Escher’s research shows that the majority of people who hear voices have had some traumatic experience which they connect with hearing voices.  Subsequent research has confirmed their findings and attests to what many of us with first-hand experience of madness have always known – bad things that happen to you can drive you crazy. However, despite the well-established link between hearing voices and traumatic life experiences, the Hearing Voices Movement explicitly accepts all explanations for hearing voices which may include an array of belief systems, including spiritual, religious, paranormal, technological, cultural, counter cultural, philosophical, medical, and so on. As well as this, we welcome people with a range of experiences, including people who see visions or have other unusual perceptions or sensations.

Within the Hearing Voices Network (HVN) in England which currently has the most well established national network, there are approximately 180 groups currently operating. Groups run mainly in the community but also within statutory and NGO sector services. These include acute psychiatric settings, adolescent services, low, medium and high secure settings. In addition a number of specialist groups for women, people from Black and minority ethnic communities, prisoners, children, young people and parents have also been established. As a respected British consultant psychiatrist recently said, “You clearly represent a movement and constituency that has gone well beyond offering a critique of the status quo and towards representing advocacy and example of alternative approaches which are increasingly being recognised as complimentary or better than traditional approaches”. (Roberts, 2013).

HVN creates sanctuary; safe spaces to share taboo experiences, where there are real possibilities for healing and growth. People are free to share and explore their experiences in detail including the content of what their voices say (Beavan and Read 2010), without the threat of censorship, loss of liberty or forced medication, a common feature of disclosure in traditional psychiatric settings.

As well as our group work, we raise awareness of the benefits of talking about voices, visions and other unusual experiences and the value of peer support. We promote this innovative approach to voice hearers, family members and mental health professionals. We regularly provide training to staff, support on-going research into hearing voices and allied subjects, and liaise with the media which has resulted in a number of positive broadcasts and publications about HVN and voice hearing, both nationally and internationally (Adams 2008; Dillon 2010a; Hilpern 2007; Kirsch 2007; Lakhani 2009: Smith 2007). 

There are now Hearing Voices networks in 26 countries, across 5 continents: Australia, Austria, Belgium, Canada, Denmark, England, Finland, Germany, Greece, Holland, Ireland, Italy, Japan, Kenya, Malaysia, New Zealand, Norway, Palestine, Scotland, South Africa, Spain, Sweden, Switzerland, Uganda, USA and Wales. International developments are co-ordinated via INTERVOICE – the International Network for Training, Education and Research into Hearing Voices – an international organisation dedicated to spreading positive and hopeful messages about the experience of hearing voices across the world.

Representatives and members of the international networks meet annually, at the World Hearing Voices Congresses, to promote new developments, innovative practice, translation of materials, and to support activities in burgeoning countries and share a sense of community, solidarity and camaraderie. One of the fundamental strengths of the Hearing Voices Movement, which has led to its extraordinary success, is that it is based on mutually respectful relationships – authentic partnerships between experts by experience and experts by profession, working together to bring about the emancipation of voice hearers.

HVN’s starting point is that the crises that people experience are real and that they are happening for a reason which is directly connected to the person’s life. We endeavour to support people to make sense of the real events in their lives that may have precipitated their crisis. We show a genuine interest in the range of people’s inner, subjective experiences. When people describe experiences that are deemed ‘psychotic’ we look for the meaning in their madness. Sometimes people use metaphorical or symbolic language to convey their realities and sometimes they are talking literally about things that have happened to them.  However crazy someone appears, we believe that they are making a meaningful attempt to survive maddening experiences.

Contrary to traditional approaches, HVN sees voice-hearing as significant, decipherable and intimately connected to a person’s life story. Consequently, we encourage and support people to listen to their voices and attest to their reality in order to better understand their meaning. We acknowledge that people are having normal reactions to abnormal stress. Instead of asking people – what is wrong with you? We ask them – what has happened to you? On a daily basis we hear stories of physical, sexual and emotional abuse, the impact of neglect, poverty and alienation, as well as of racism, sexism and classism.  Those people, whose experiences do not fit so neatly into a category of trauma as it is currently understood, raise the question of developing our understanding of the huge range of painful and damaging experiences that can be inflicted on and endured by children and adults.

We show respect for the reality of the suffering that people have experienced, and a keen awareness of how this may limit their expression of feelings, ability to think clearly, or capacity to connect. A key part of our role is to magnify the voices of people who are not normally listened to, by promoting the belief that each person has a deep wisdom and expertise about managing and dealing with their own problems. We validate and support people’s resilience, creativity, stamina and emotional strengths, even when they themselves doubt the existence of these qualities.

Acknowledgment enables people to develop true insight into their own distress and suffering which leads to an increasing sense of meaning and purpose in their lives. We are interested in people’s subjective experiences – including their altered states of consciousness, unusual perceptions, ideas and ways of seeing and experiencing the world. When your own feelings, thoughts, experiences and bodily sensations, begin to make sense to you, insight is a natural consequence. When you understand your own ‘symptoms’ as meaningful and essential survival strategies, a more respectful and loving acceptance of yourself begins to emerge (Bullimore 2009; Dillon 2010b; Lampshire 2009; Longden 2010; McNamara 2011).

We recognise that recovery is an on-going process with no fixed end point and that each person’s recovery is unique. HVN recognises that crises may occur again because recovery is an evolving process, an expansive process not a reductive one which seeks to control and maintain people. We have faith in people’s inherent right and capacity to heal, to make mistakes, to learn and to grow. We know that there is much about human experience that we do not understand and we remain humble and curious and open to new ways of seeing the world. We are not interested in complying with social control or in servicing normality. ‘Instead of being a list of symptoms, with side effects on top, we are people who hear voices and see visions, have unusual thoughts, passionate feelings, intense experiences’(Dillon and May 2002). We celebrate our differences.

For many voice hearers and psychiatric survivors, active participation and social action supports and enhances the recovery process; having a shared survivor mission ( Herman, 1992), and becoming part of a collective voice creating change in the world, both inside and out,  is healing, empowering and liberating. This is also true for many mental health workers, who have become increasingly disillusioned with an inadequate biomedical model, disturbed by the collusion demanded of staff in a mental health system driven by fear, control and bureaucracy. For them, becoming part of the Hearing Voices Movement also enables a recovery of meaning, purpose and optimism, a renewal of important values, a rediscovering of a sense of self. For all of us, the possibility of reconnecting to ourselves and each other as unique and equal human beings, is life affirming.

Questions, comments and/or reflections are welcome on this website or via Twitter @JacquiDillon

FOR FURTHER INFORMATION:

Intervoice – http://www.intervoiceonline.org/

Hearing Voices Network, USA: http://www.hearingvoicesusa.org/

Hearing Voices Network, England: http://www.hearing-voices.org/

References:

Adams, W. (2008). The Listening Cure. Time, 21 February.

Beavan, V. and Read, J. (2010). Hearing voices and listening to what they say. Journal of Nervous and Mental Disease 198: 201-5.

Bullimore, P. (2009). My personal experience of paranoia. Psychosis 2: 173-7.

Dillon, J. and May, R. (2002). Reclaiming experience. Clinical Psychology 17: 25-77.Dillon,

J. (2010a). www.radionz.co.nz/national/programmes/ninetonoon/20100414

Dillon, J. (2010b). The tale of an ordinary little girl. Psychosis 1: 79-83.

Herman, J. (1992). Trauma and recovery. New York: Basic Books.

Hilpern, K. (2007). How I beat the voices in my head. The Independent,  Mar. 6.

Kirsch, M. (2007). Voices in your head? You may not be crazy. The Times, 23 January.

Roberts, G. (2013). Personal communication.

Lakhani, N. (2009). A first-class recovery. Independent on Sunday, 25 October.

Lampshire, D. (2009). Lies and lessons: ramblings of an alleged mad woman. Psychosis 1: 178-84.Romme, M. and Escher, S. (1989). Hearing voices. Schizophrenia Bulletin 15: 209-16.

Longden, E. (2010). Making sense of voices: a personal story of recovery. Psychosis 2: 255-9.

McNamara, J. (2011). Can we sit and talk? Poems stories and some words of advice. Psychosis 3: 167-71.

Romme, M. and Escher, S. (1989). Hearing voices. Schizophrenia Bulletin 15: 209-16.

Romme, M. and Escher, S. (2000). Making Sense of Voices. London: Mind.

Romme, M. Escher, S. Dillon, J. Corstens, D. Morris, M. (eds.). (2009). Living with Voices: 50 Stories of Recovery. PCCS Books.

Romme, M. and Escher, S. (eds) (2011). Psychosis as a Personal Crisis. London: Routledge.

Smith, D. (2007). Can you live with the voices in your head? New York Times, 25 March.

Royal College of Psychiatrists: Abolish use of formal psychiatric diagnostic systems like ICD & DSM

Abolish use of formal psychiatric diagnostic systems like ICD & DSM

Psychiatric diagnoses are not valid.
Use of psychiatric diagnosis increases stigma.
Using psychiatric diagnosis does not aid treatment decisions.
Long term prognosis for mental health problems has got worse.
Psychiatric diagnosis imposes Western beliefs about mental distress on other cultures.
Alternative evidence based models for organizing effective mental health care are available.

 
To sign the petition please go to this link:

To read the full evidence based arguments view the ‘No More Psychiatric Labels’ paper at
http://www.criticalpsychiatry.net/?p=527 which is reproduced below:

Modern Western psychiatry has secured many important advances in the care of people with mental distress. We have a variety of pharmacotherapies that can help manage distressing symptoms alongside an even greater variety of psychotherapeutic approaches that help people in distress make sense of their experiences and find new ways to deal with them. The old asylums have been emptied and community care has developed a rich variety of services from early intervention to crisis management. Researchers have identified many biological and environmental factors associated with greater likelihood of having or developing mental health problems and so our understanding of mental distress has improved. Reflecting this, the academic community, studying mental distress from a variety of angles has grown in numbers and sophistication with many journals and thousands of articles being published each year. These are worthy achievements and this progress has no doubt helped thousands of people across the world.

However, despite all these achievements, psychiatric theory and practice has reached an impasse. Prevention has proved elusive with mental health diagnoses becoming more not less common despite a large increase in services in most developed countries. There still isn’t a diagnosis listed in the major psychiatric diagnostic manuals (such as ICD and DSM) that is associated with any sort of physical test and so, unlike the rest of medicine, aetiology has an insignificant part to play in organising diagnostic practice. Whilst reliability in making diagnoses has improved for some research purposes, this does not necessarily translate to clinical practice and the more important issue of validity remains poorly addressed. Most importantly there is no evidence to show that using psychiatric diagnostic categories as a guide for treatment leads, through evidence based choices, to improved outcomes. There is some evidence to suggest that applying a psychiatric diagnosis and theoretical models associated with them instead leads to a worse outcome for some.

This campaign therefore proposes that the time has come to help theory and practice in mental health move beyond this impasse by abolishing formal psychiatric diagnostic systems like ICD and DSM. By incorporating the latest evidence from epidemiology, cross-cultural studies and treatment outcome studies, the campaign highlights the extent to which the data is inconsistent with the dominant, diagnostic based, medical model remaining as the organising paradigm for practice. Continuing to use formal diagnostic systems to organise research, training, assessment, and treatment for those in mental distress is inconsistent with an evidence based approach capable of improving outcomes. Whilst the important task of sketching out what services may look like once we discard ICD and DSM from routine clinical practice is not the primary purpose of this campaign, a few pointers are also mentioned to highlight that alternative paradigms are already available and easy to incorporate into practice and in a way that can improve outcomes.

Aetiology

The failure of basic science research to reveal any specific biological abnormality or for that matter any physiological or psychological marker that identifies a psychiatric diagnosis is well recognised. Unlike the rest of medicine, which has developed diagnostic systems that build on an aetiological framework, psychiatric diagnostic manuals such as DSM-IV and ICD-10 have failed to connect diagnostic categories with any aetiological processes. Thus there are no physical tests referred to in either manual that can be used to help establish a diagnosis. The critique that highlights the lack of progress on aetiology is not limited to those less biologically minded psychiatrists as researchers in genetics are also arguing that the use of categorical diagnoses (such as schizophrenia) is handicapping their studies too, where, they argue, a dimensional approach seems more appropriate;3,4 although it should be noted that dimensional approaches in the rest of medicine often focuses on a very small percentage of ‘outliers’ (e.g. growth hormone treatment for short stature) rather than the large numbers currently attracting the gaze of psychiatry.

The one notable exception to the lack of aetiological organisation is the diagnosis ‘Post Traumatic Stress Disorder’ (PTSD) which attributes symptoms to being the direct result of trauma. This diagnosis did not develop out of new scientific discoveries but as a result of legal procedures (the construction of ‘PTSD’ came largely as a result of legal battles involving US military veterans of the Vietnam War) and its use implies that other diagnoses are not related to trauma. However, there is a substantial body of evidence linking states regarded as the most serious in psychiatry, such as the experience of hearing voices and psychosis, to trauma and abuse including sexual, physical and racial abuse, poverty, neglect, and stigma. 5, 6,7,8,9,10,11,12,13,14 This is why it is 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.14

Validity

If we were to apply the standards found in the rest of medicine then the validity of a diagnostic construct depends on the extent to which it represents a naturally occurring category. If it does, then there should be some identifiable biological property in those who have the diagnosis that can distinguish them from those who don’t. Despite years of searching for biological correlates, the failure of basic science research to reveal any specific biological marker for any psychiatric diagnostic category reveals that current psychiatric diagnostic systems do not share the same scientific security of belonging to the biological sciences as the rest of medicine. Mainstream practice understandably views this as a problem. However, the attempted solution of continuing to spend the bulk of mental health research time and effort trying to correct this deficit by relentlessly searching for evidence of biological correlates continues to deliver nothing clinically useful. Our failure to find biological correlates should not necessarily be seen as weakness. Instead of continuing with scientifically and clinically fruitless research we should view this failure as an opportunity to review the dominant paradigm in order to develop one that better fits the evidence.

Invalid anomalies are prevalent in DSM/ICD. For example, in DSM defined ‘depression’ there is one exception to the diagnosis (even if the patient has the required number of symptoms for the required number of weeks) – bereavement. This is anomalous in at least two ways. Firstly it breaks the ‘rule’ that diagnostic categories in DSM are descriptors that do not imply aetiology. Secondly, because bereavement is considered a ‘normal’ reaction, even if the full complement of DSM defined symptoms of depression are present, then one must ask: why is ‘bereavement’ specifically singled out? Why are many other life problems for which intense sadness is a common response – such as losing a job, break up of a marriage, bullying and so on – not also counted as legitimate exceptions?16

The frequency with which patients are given more than one diagnosis also raises a concern about the specificity of diagnostic categories. Widespread co-morbidity (making more than one diagnosis in order to encompass patients’ problems) indicates basic deficiencies in our understanding of the natural boundaries of even the most severe conditions we are diagnosing in psychiatry.17,18,19 It is also common to find the ‘dominant’ diagnosis changing in any individual, almost exclusively on a subjective rather than empirical (such as physical test results) basis. Unlike in the rest of medicine where the reason for the patient’s symptoms is clarified by a diagnosis, psychiatric diagnoses serve empirically as nothing much more than descriptors. Thus, when a clinician claims that a patient is ‘really’ depressed, or has ADHD, or has bipolar disorder, or whatever, not only are they trying to turn something based on subjective opinion into something that appears empirical, but they are engaging with the process of reification (turning something subjective into something ‘concrete’). The problem with turning concepts into something that appears as if it exists as a fact in the natural world is that it can cause ‘tunnel vision’ for all concerned; a dominant story that limits alternative more functional possibilities for any individual.20 Thus if someone believes ADHD is a ‘real’ disorder that exists in their brains and is potentially lifelong, that person and those who know them may come to act according to this belief, thus helping to fulfil its prophecy.

There is also a poor correspondence between levels of impairment and having the required number of symptoms for many psychiatric diagnoses (even though ‘impairment’ is often included in the diagnostic criteria). Literature reviews and field trials to examine clinical significance criteria were not included in the preparation of DSM-IV. Thus many below the threshold for a diagnosis have higher levels of impairment than those above, with many who reach the cut off for a diagnosis having relatively low levels of impairment. 21,22,23

Reliability

Reliability is the extent to which clinicians can agree on the same diagnoses when independently assessing a series of patients. Over the last thirty years or so, academic psychiatrists have worked hard to improve the reliability of psychiatric diagnoses. This is partly in response to critics of psychiatry who pointed out that many of the common diagnoses in use at the time were meaningless because of poor levels of agreement between psychiatrists about key symptoms. Rosenhan’s 1973 study spurred on new attempts to ‘standardise’ diagnostic practice after he demonstrated that psychiatrists were often unable to discriminate between sane and psychotic people.24 Formal diagnostic systems like DSM and ICD attempted to address these problems by imposing diagnostic agreement on the profession through the use of standardised check-lists of symptoms for diagnostic criteria. Because of the repeated claim that this approach has improved reliability significantly, the diagnostic systems now in use give the impression of being reliable in an empirically verifiable way.

However, analysis of the studies involved in developing the first diagnostic manual that took this approach of ‘operationalising’ diagnosis through the check list of symptoms approach (DSM-III), found no diagnostic categories for which reliability in these studies was uniformly high. The ranges of reliability for major diagnostic categories were found to be very broad and in some cases ranged the entire spectrum from chance to perfect agreement, with the case summary studies (in which clinicians are given detailed written case histories and asked to make diagnoses – an approach that most closely approximates what happens in clinical practice) producing the lowest reliability levels.25 No studies of the reliability of DSM as a whole when used in natural clinical settings have shown uniformly high reliability, with many finding reliability ratings that are not that different than those in the pre-DSM-III studies. 25,26,27 To overcome this, developers of subsequent DSMs have simply de-emphasised the reliability problem, claiming this to have already been solved by the approach developed in preparing DSM-III.

Treatment and outcome

The technological paradigm is the dominant one that organises the way psychiatric services and treatments are delivered in most industrialised countries. This paradigm is predicated on the assumption that the technical aspects of medical and psychological care are of primary importance, and that these can be applied through making diagnoses and then applying corresponding treatment protocols.

However, there is a large literature on psychotherapy confirming that it is generally speaking a safe and effective intervention for common mental health problems as studied in Western populations, but there is little to suggest that a positive outcome is strongly related to selecting the ‘correct’ psychotherapeutic technique and much to suggest that the ‘common factors’ such as developing a strong therapeutic alliance, are more important.28,29,30 For example, several studies have shown that most of the specific features of Cognitive Behaviour Therapy (CBT) can be dispensed with, without adversely affecting outcomes. 31,32 The same holds for other forms of psychotherapy for depression. For example, The National Institute of Mental Health’s Treatment of Depression Collaborative Research Project (TDCRP), the largest trial to date comparing different treatments for depression (CBT, Inter-Personal Therapy [IPT], anti-depressants, and placebo) found that patients in each group had significant improvements, with no overall difference in outcome between each treatment group. However, the best predictor of outcome across all four groups was the quality of the relationship between patient and therapist (as perceived by the patient) early in treatment. 33,34, 35, 36

Recent meta-analyses have drawn similar conclusions. The quality of the therapeutic alliance accounts for most of the within-therapy variance in treatment outcome, and is up to seven times more influential in promoting change than treatment model. 28,37 Such data, when combined with the observed superior value, across numerous studies, of clients’ assessment of the relationship in predicting the outcome, makes a strong empirical case that the non-specific aspects of psychotherapy, or ‘know-how’ in building a strong therapeutic alliance, are more important than specific techniques being used. This is also evident in ‘real life’ clinical encounters not just research projects. For example, in a review of over 5000 cases treated in a variety of National Health Service settings in the UK, only a very small proportion of the variance in outcome could be attributed to psychotherapeutic technique, as opposed to non-specific effects such as the therapeutic relationship.38

The same principles can be found operating when using psychoactive drug treatments (that non-specific factors are more important than matching a drug to a diagnosis). Thus a number of psychiatrists have argued that instead of correcting imbalances, the evidence supports the view that pharmacological agents may be conceptualised as inducing particular psychological states which, though not specifically related to diagnosis, is nonetheless the basis for their usefulness.39 This reflects clinical practice where the few categories of psychoactive medications used in psychiatry (the SSRIs, major tranquilisers, benzodiazepines, Lithium, and anti-epileptics) are often used in a non-diagnosis specific way. For example, SSRIs are claimed to be efficacious in conditions as disparate as borderline personality disorder, depression, obsessive compulsive disorder, anorexia nervosa, bulimia, panic disorder, social phobias, and so forth. As a psychoactive substance SSRIs would appear to do ‘something’ to the mental state, but that something is not diagnosis specific. Like alcohol, which will produce inebriation in a person with schizophrenia, obsessive compulsive disorder, depression, or someone with no psychiatric diagnosis, SSRIs will also impact individuals in ways that are not specific to diagnosis. Similarly, major tranquilisers (misnamed anti-psychotics) have also been advocated for the treatment of depression, anxiety disorders, bipolar affective disorder, personality disorders, ADHD, as well as schizophrenia, a list that contains considerable overlap with that found for SSRIs.

Many psychiatric drug treatments, like psychological treatments, rely more on non-specific factors than disease-specific therapeutic effects. For example, it is generally assumed that drugs marketed as ‘antidepressants’ work through their pharmacological effects on specific neurotransmitters in the CNS, reversing particular states of ‘chemical imbalance’. However, the evidence points to placebo effects being more important than any neuro-pharmacological ones. Thus several meta-analyses have concluded that most of the benefits from ‘antidepressants’ can be explained by the placebo effect, with only a small amount of the variance (about 20%) attributable to the drug, a small amount moreover that is unlikely to be clinically significant for the vast majority of patients.40,41 Studies investigating the degree to which non-technical factors such as therapeutic relationship affect outcome, have found that even with psychoactive drug treatments these factors are far more influential than the drug alone. Thus having a good relationship with the prescribing doctor is a stronger predictor of a positive response to an ‘anti-depressant’ than just taking the drug regardless of who prescribes it. 28,42

The lack of treatment specificity is not limited to the more common and less severe presentations. Thus, although drugs marketed as ‘antipsychotic’ are often claimed to reverse a biochemical imbalance in psychotic patients, no such imbalance has been demonstrated. Furthermore, researchers have long been aware of a perplexing finding in cross-cultural studies. Research, including that carried out by the World Health Organisation, over the course of 30 years and starting in the early 1970s, shows that patients outside the United States and Europe have significantly lower relapse rates and are significantly more likely to have made a ‘full’ recovery and show lower degrees of impairment when followed up over several years despite most having limited or no access to ‘anti-psychotic’ medication. It seems that the regions of the world with the most resources to devote to mental illness – the best technology, medicines, and the best-financed academic and private-research institutions – had the most troubled and socially marginalised patients.43 Once again the impact of our psychiatric technologies seem to be minimal compared to common factors, in this case most likely to be the effects of ‘extra-therapeutic’ factors such as family support, community cohesion and tolerance for behaviours and experiences considered a sign of ‘illness’ and ‘dangerousness’ in the West.

Prognosis

Unlike the rest of medicine, no overall improvement in prognosis has been demonstrated in Europe and North America over the past century for those diagnosed with a mental disorder. Some studies indicate the opposite, that compared to the pre-psychopharmacology period there are more patients who have developed chronic conditions such as chronic schizophrenia than in the past. For example, in 1955, there were around 350 thousand adults in the US state and county mental hospitals with a psychiatric diagnosis. During the next three decades (the era of the first generation psychiatric drugs), the number categorised as disabled from mental illness rose to 1.25 million. By 2007 the number of people categorised as disabled mentally ill grew to more than 4 million adults. Similarly, the numbers of youth in America categorised as having a disability because of a mental condition leapt from around 16 thousand in 1987 to 560 thousand in 2007.44

Studies that have compared outcomes for psychotic disorders such as schizophrenia have repeatedly found that outcomes are better in poorer, non-developed countries when compared to richer, more industrialised ones.41 For example, the World Health Organisation’s international outcome in schizophrenia studies found that after 2 years about two thirds of the patients in the poor countries were doing well compared to only a third of the patients in the developed countries. The researchers concluded that “being in a developed country was a strong predictor of not attaining a complete remission.”45 Thus the progress attributable to modern mainstream psychiatric diagnostic based practice does not extend to improved prognosis.

One problem with medical model diagnostic approaches is that many of the diagnoses (such as schizophrenia, bi-polar disorder, dysthymia, ADHD, autism, OCD etc.) are conceived as conditions that are genetic and lifelong in nature (i.e. conceived as chronic conditions that are ‘hard-wired’ with little chance of making a complete recovery), where the best one can hope for is gaining some control over symptoms (through, for example, life-long use of medications). This constructs and often imposes a narrative of despair on those diagnosed with these ‘chronic’ conditions. As such psychiatric diagnoses can foreclose meaning by transforming a range of experiences and possible meanings that can be applied to these experiences into a narrow disease framework, limiting the cultural imagination to expecting largely negative outcomes.

Prognosis for those with mental disorders is also further hampered by the stigma associated with the medical model.46 Nearly all studies that have looked at the question of public attitudes toward mental illness have found an increase in biological causal beliefs across Western countries in recent years.47 However, biological attributions for mental illness are overwhelmingly associated with negative public attitudes such as a belief that patients are unpredictable and dangerous with associated fear of them and greater likelihood of wanting to avoid interacting with them. 48 Conversely, in studies where members of the public are given a psychosocial explanation for the sufferer’s symptoms (such as serious life events, loss, trauma etc.) they are much less likely to give negative attributions.48 Yet again, the ‘medical model’ diagnostic approach has a significantly negative impact causing an increase in stigma rather than a reduction.

Similar findings emerge in personal stories of those diagnosed with a ‘mental illness’. Through social action, the survivor movement has created safe spaces in which individuals can start the process of telling their own stories. Many of these stories show that users of mental health services felt stigmatised and marginalised by a psychiatric diagnosis, experiencing this as something that leads to the loss of ‘citizenship’.46,49 Being labelled with a chronic ‘genetic’ condition such as ‘schizophrenia’ interferes with a person’s identity and biography. Indeed, the presence of ‘insight’ (as defined by doctors) in schizophrenia has been found to lower self-esteem and can lead to despair and hopelessness.50 Paradoxically, it has been found that the presence of this type of ‘insight’ (meaning accepting you are mentally ill and need medical treatment) is negatively correlated with emotional well-being, economic satisfaction and vocational status. 51,52, 53 Thus accepting the medical model attitude to diagnosis brings expectations of a gloomy outlook with lifelong dependency on psychiatric treatment and little chance of a good recovery. For some therefore, 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.52,53

In summary it seems we now have good evidence that the diagnostic ‘illness like any other illness’ approach is likely to be contributing to a worse prognosis for those diagnosed, not better.

Colonialism

For the last few decades Western mental-health institutions have been pushing the idea of ‘mental-health literacy’ on the rest of the world. Cultures are viewed as becoming more ‘literate’ about mental illness the more they adopted Western biomedical conceptions of diagnoses like depression and schizophrenia. This is because of a belief that ‘modern’, ‘scientific’ approaches reveal the biological and psychological basis of psychic suffering and so provide a rational pathway to dispelling pre-scientific approaches that are often viewed as harmful superstitions. In the process of doing this we not only imply that those cultures that are slow to take up these ideas are therefore in some way ‘backward’, but we also export disease categories and ways of thinking about mental distress that were previously uncommon in many parts of the world. Thus conditions like depression, post-traumatic stress disorder, and anorexia appear to be spreading across cultures, replacing indigenous ways of viewing and experiencing mental distress.54,55 In addition to exporting these beliefs and values, Western drug companies see in such practice the potential to open up new and lucrative markets.54,56

Despite copious evidence from research in the non industrialised world, that shows the outcomes for major ‘mental illnesses’, is consistently better than in the industrialised world and particularly amongst populations who have not had access to drug based treatments,43,44,45 the World Health Organisation, together with the pharmaceutical industry, has been campaigning for greater ‘recognition’ of mental illnesses in the non-industrialised world, basing their assumptions on the idea that ICD/DSM descriptions are universally applicable categories.57 Like other marketing campaigns, this strategy has the potential to open up huge new markets for psychiatric drugs that maybe ineffective and can have serious side effects, at the same time as painting indigenous concepts of, and strategies to deal with, mental health problems, as being based on ignorance, despite their obvious success for these populations.

The idea of the individual as the locus of the self is a relatively recent Western invention and such a framework creates the psychological pre-conditions necessary for accepting the ‘atomised’ social worlds that have been created. Yet, mental well-being seems closely connected to social and economic factors. Several international studies have concluded that more important than poverty per se is the degree of inequality. Thus the greater the inequality (in economic and social resources) in any society, the poorer is the mental health of that society.58,59,60,61,62

A more subtle source of impact on cultural beliefs is due to psychiatric diagnoses inadvertently setting standards for ‘normality’, by categorising what emotional and behavioural traits and experiences should be considered ‘disordered’. As the criteria for diagnoses are arrived at by subjective judgments rather than objective evidence (being literally voted in or out of existence by committees), they will have an automatic bias toward the cultural standards found in economically dominant societies (who also tend to control what counts as ‘knowledge’ globally). This sets in motion a diagnostic system vulnerable to institutional racism in the dominant societies and colonialism in others, as other standards of normality will, at least to some extent, come to be viewed as ‘primitive’, ‘superstitious’ etc. and their populations will be viewed as needing to be (psycho)educated. As a result then, for the majority of the world, all manner of complex somatic/emotional complaints have to be re-categorised, spiritual explanations have to be denounced, parenting practices viewed as oppressive and so on.

Thus imposing Western medical model DSM/ICD style psychiatry on non-Western populations risks a number of things including: adoption of Western psychiatric notions of ‘psychopathology’ to express mental distress, undermining of existing cultural strategies for dealing with distress, more not less stigma for those with mental health problems, and the imposition of an individualistic approach that may marginalise family and community resources and divert attention from social injustice.

Cultural and Public policy impact

Despite adopting a DSM/ICD approach causing many problems for translating the subjective process of attaining a psychiatric diagnosis into a reliable and objective one in clinical practice; it has nonetheless had a significant impact on service provision and public and professional beliefs about mental distress. As a result of popularising the diagnostic systems created by DSM/ICD, it is widely argued that a significant proportion of the population suffers from mental illness, that this amounts to a significant economic burden, and that there is a strong case for investing in improved mechanisms of detection and treatment for these disorders. Across several surveys in the industrialised nations only about a third of those identified as suffering a mental health problem (according to DSM/ICD criteria) sought or were interested in seeking professional help.63,64,65,66 This has been interpreted as unsatisfactory case detection, provision and treatment, due to public and professional ignorance. However, there is little evidence to support the idea that popularising mental health diagnoses, convincing professionals and the public about the high prevalence of mental disorders, and convincing policy makers of the need to diagnose and treat more people, benefits the mental health of the society.

In order to increase rates of diagnosis and treatment, a variety of campaigns have been undertaken. For example, in the UK the Royal College of Psychiatrists and Royal College of General Practitioners launched their ‘Defeat Depression’ campaign in the early nineties. 67 It was intended to raise public awareness of depression, reduce stigma, train general practitioners in recognition and treatment, and make specialist advice and support more readily available. Unfortunately, evaluations of treatment and education guidelines in the UK following the ‘Defeat Depression’ campaign failed to detect significant improvements in clinical outcome.68,69,70 However, other effects of the campaign included a rapid increase in antidepressant prescribing and increased medicalisation of unhappiness and distress. As has been noted above, medicalisation of mental distress through promotion of the idea that mental health problems are best understood as ‘illness like any other illness’, increases rather than decreases stigma.

Unlike other areas of public health, mental health in those societies with the most developed services appears to be the poorest. In such societies ‘epidemics’ of psychiatric diagnoses (e.g. ADHD, autism, depression, bipolar disorder) have only emerged and become popularised in recent years. Whilst there are complex political, social and cultural reasons for this, they are in part based on new categories and ideas about personhood, the nature of distress etc. and so are at least in part the result of creating, broadening and popularising psychiatric diagnoses.

Conclusion

For any diagnostic system to establish itself as a scientifically useful paradigm that leads to greater knowledge of the natural world, it should be able to show that the categories ‘carve nature at its joints’ such as being able to demonstrate distinct aetiological links. For any diagnostic system to establish itself as clinically useful it must show that use of diagnostic labels aids treatment decisions in a way that impacts on outcome. As reviewed above there is little evidence to support the ICD/DSM paradigm being able to provide either the basis for collecting scientifically useful knowledge or clinically useful treatment decisions. There is much evidence to suggest that instead they can cause significant harm. The only evidence based conclusion that can be drawn is therefore that formal psychiatric diagnostic systems like ICD and DSM should be abolished.

New paradigms

Relying on DSM/ICD diagnostic categories to organise research, services, and treatment does not contribute to improved outcomes for those experiencing mental distress and is associated with considerable harm.

Alternatives to ICD/DSM are therefore needed. We can and should do better. We have all the evidence we need to work on re-organising our approaches locally, nationally, and internationally to develop services that are evidence based and can reduce the amount of harm DSM/ICD has caused at the same time as improving outcomes. New paradigms that draw on the existing evidence for what improves outcomes and that incorporates the views of those who matter most – service users – can easily be developed and implemented. The following represents some good starting points:

1. Aetiology: As discussed in this paper there is a strong association between trauma, particularly early childhood trauma, and adversity and the subsequent development of mental disorders including psychosis. There is also a strong association between the degree of socio-economic inequality and levels of mental distress in any society. Other associations include dietary, lifestyle, family functioning and attachments. Research that examines the relationship between contextual factors and degrees of impairment, without trying to link them to formal psychiatric categories, has a greater likelihood of succeeding in developing useful scientific knowledge about mental distress. Moving the focus away from the eugenic-like search for genetic and neurological abnormalities will allow for greater acceptance of human diversity, and decrease the likelihood of human rights, political and social issues being inappropriately medicalised. Given the strong relationship between increasing acceptance of the diagnostic medical model and increasing stigma, abolition of DSM/ICD will also help in the fight against stigma.

2. Clinical: Decades of outcome research into treatment of psychiatric disorders shows, that despite the development of many new techniques, the outcomes being achieved in studies 40 years ago are similar to those being achieved now. In other words our advances in therapeutic techniques have not yet led to improvement in overall outcomes for service users. Research has found that certain intra-therapeutic factors such as the therapeutic alliance has a much greater effect on outcome than model or technique used and that extra-therapeutic factors such as social support has an even greater impact on outcome than intra-therapeutic ones.28,30,42 A variety of studies (in areas as diverse as psychotherapy services, community mental health services, substance misuse, and marital counselling) have found that incorporating ideas from this outcome literature, such as using session by session feedback on outcome and therapeutic alliance, can improve outcomes.30,42 The message from this research is that services can improve outcomes, not by using diagnostic categories to choose treatment models, but by concentrating instead on developing meaningful relationships with service users that fully includes them in decision making processes. International service user led movements, such as the ‘recovery’ movement, that focus on the inclusion of people in recovery from mental health problems as collaborators in research, service development, and treatment model development provide good examples of how this evidence can be developed to change institutional culture.71,72,73 Services in non-Western settings should be able to incorporate local beliefs and practices and the wholesale export of Western ethno-psychiatry can be stopped.

Developing the knowledge base and services in this manner would give mental health services and practitioners a better chance of improving the lives of those they work with. It will also help with breaking long standing barriers between mental health services and the rest of medicine, by allowing the mental health professions to focus on developing paradigms that are evidence based and which properly incorporates an understanding of how physical and mental well-being are closely related to each other. These non-diagnostic based paradigms can then assist in helping the many patients who present with physically unexplained symptoms or chronic conditions, which inevitably impact on their mental well-being, without needing to label them as ‘mentally ill’.

The real gift of psychiatry is what it can offer the rest of medicine that is more unique to this field, which is an understanding of the person in their context. Psychiatry has to sit at the confluence of a variety of disciplinary discourses (Sociology, anthropology, psychology, philosophy, medicine, cultural studies, politics, theology etc.) and it is this broader understanding of the human and their health and well-being that psychiatry ‘brings to the table’. By lazily importing the diagnostic model from general medicine we end up miss-selling and under-utilising the unique skills the profession of psychiatry brings to healthcare by the ‘dumbing down’ of what we do into simplistic diagnosis driven protocols that has more to do with successful consumer culture marketing than science. Changing to more evidence compatible paradigms is now long overdue.

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Sami Timimi
Consultant child and Adolescent Psychiatrist
Director of Medical Education
Lincolnshire Partnership Foundation NHS Trust
Visiting Professor of Child and Adolescent Psychiatry
Faculty of Health and Social Sciences
Lincoln University
 
International Critical Psychiatry Network

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What is your Opinion of Psychiatric Diagnosis?

This is an important paper written by Steven Coles and colleagues about psychiatric diagnosis. What do you think? Have your say!

What is your Opinion of Psychiatric Diagnosis?

What is your view on psychiatric diagnosis? Should the diagnosis of schizophrenia be abolished as the Campaign for the Abolition of the Schizophrenia Label wish? For both those working in mental health services and those on the receiving end, how important is diagnosis to your life? There are many different views on psychiatric diagnosis from fierce advocates to those who decry the practice. A number of survivors, academics, professionals, and service users have criticised diagnosis. However, within mental health services psychiatric diagnosis remains dominant. Psychiatrists (and other professionals) claim they use diagnosis to understand people’s experiences, behaviour and distress.  Diagnosis shapes how services are organised, who will be helped and how services will support or “treat” people. Psychiatric diagnosis also has a major impact on whether people are detained against there will in hospital – the civil liberties of people with a psychiatric diagnosis are at a greater risk than anyone else in society (other than suspected terrorists). Diagnosis influences whether people are forced to take major tranquilizers (“antipsychotics”), and whether they receive financial benefits.

Despite the immense controversy surrounding diagnosis, my experience is that the debates around diagnosis are not openly discussed between staff or with people using (or forcibly brought into) mental health services. Psychiatric diagnosis has become an everyday and often unquestioned part of mental health practice. Is this simply because critics of diagnosis have weak arguments? Is it because the scientific basis of psychiatric diagnosis is so strong? Is there no alternative? A group of Clinical Psychologists working in East Midlands Adult Mental Health Services have looked at the issue of psychiatric diagnosis and written a position paper (Coles & SPIG, 2010). They conclude that “psychiatric diagnosis does not meet its scientific and expert claims” and does not deserve to be so dominant in mental health services.

The East Midlands group highlighted a number of negative effects of psychiatric diagnosis. They note that diagnosis places the cause of difficulties on the individual; the group feel more attention should be paid to people’s life experiences, such as abuse, poverty, discrimination and disempowerment. The position paper also observes that the language of diagnosis is barrier to communication between staff and people using services. Furthermore, diagnosis is not aware that it is based upon dominant western (often male) ideas of what is normal, and ignores that other cultures and subcultures might have different or a broader idea of what is normal. The paper also notes some modest alternatives to moving beyond diagnosis (for access to the document see www.bps.org.uk/dcp-sigpr/publications-%26-documents/publications_home.cfm).

The East Midlands Paper is accessible at the above link, as well as on the Hearing Voices Network website. The group is hoping to open up a debate around diagnosis and would welcome people’s thoughts on the paper and on diagnosis. The East Midlands paper suggests that the current dominance and use of diagnosis is part of the problem and not part of the solution as psychiatry claims. What do you think? What is your experience of diagnosis?

References

Coles, S. & SPIG (2010).  Position on Psychiatric Diagnosis. East Midlands: Psychosis and Complex Mental Health Special Interest Group

Steven Coles

Clinical Psychologist

steven.coles@nottshc.nhs.uk