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Hearing Voices Research and Development Fund receives $250,000 in funding

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Coming to a town near you: real help for voice hearers

The Foundation for Excellence in Mental Health Care is pleased to announce that its Hearing Voices Research and Development Fund has received $250,000 in funding for a 3-year project to bring Hearing Voices peer support groups to communities across the United States and to research the mechanisms by which these peer-support groups work.

The project will train more than 100 facilitators in 5 regions of the country and create a stronger regional and local infrastructure of Hearing Voices peer support groups across the US. People who hear voices, see visions, or experience other unusual perceptions, thoughts, or actions have long been diagnosed as psychotic and given a poor prognosis. Medications provide only partial help and their benefits typically diminish over time while destructive physical and psychological side effects become increasingly problematic.

For the past 25 years, the Hearing Voices Network (HVN), an international collaboration of professionals, people with lived experience, and their families and friends has worked to develop an alternative approach to coping with voices, visions, and other extreme states that is empowering and useful and does not start from the assumption of chronic illness (see www.hearing-voices.org, www.hearingvoicesusa.org, www.intervoiceonline.org). A large scientific literature now provides support for key aspects of this approach, and the hundreds of peer-support groups that have developed in 30 countries on 5 continents are enabling voice hearers – even those who have been chronically disabled – to learn to cope more effectively or to rid themselves of the negative effects of their voices.

The US lags far behind other countries in offering this important new approach, and the new funding provides crucial support as more and more mental health organizations across the country seek training to start their own hearing voices peer-support groups. An open competition will be launched in April to choose the 5 project regions, with participants selected using a rigorous model in which mental health professionals and voice hearers collaborate in an intensive shared learning experience that itself illustrates HVN’s concepts and methods.

Equally crucial to the project is an ongoing research component that will allow identification of the distinctive components of hearing voices peer-support groups and better explain what enables them to provide such an effective and positive alternative for people diagnosed with psychosis. “This effort promises to be a movement that will measurably advance mental wellness and recovery for people in distress, their families and the community across the nation,” said Gina Nikkel, President and CEO of the Foundation for Excellence in Mental Health Care. “Hearing voices can be truly terrifying for the person experiencing them and for their loved ones. Hearing Voices Network support groups transform the fear into understanding and then empowerment.”

The Hearing Voices Research and Development Fund is jointly administered by Gail A. Hornstein, Professor of Psychology, Mount Holyoke College, and Jacqui Dillon, National Chair, Hearing Voices Network, England. Their more than 10-year collaboration models the kind of engaged research and advocacy that the project seeks to foster. More background on the project administrators can be found here. Read their recent article on hearing voices groups here.

Key partners in the project include Mount Holyoke College and the Western Massachusetts Recovery Learning Community, based in Holyoke, MA, which has pioneered the training of HVN facilitators in the US as part of its broader mission to “create conditions that can support healing and growth for individuals and the community as a whole.”

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.

New Foreign Correspondent for Mad in America

I am thrilled to have been invited to become a foreign correspondent for the Mad in America web site – see: http://www.madinamerica.com/

I will be writing about the important and innovative work of the Hearing Voices Movement alongside many eminent colleagues, critical thinkers and activists working together to bring about an essential revolution in the world of mental health.

You can read my first post here: http://www.madinamerica.com/2013/01/the-hearing-voices-movement-beyond-critiquing-the-status-quo/

About Mad in America:

The site is designed to serve as a resource and a community for those interested in rethinking psychiatric care in the United States and abroad. We want to provide readers with news, stories of recovery, access to source documents, and the informed writings of bloggers that will further this enterprise.

The bloggers on this site include people with lived experience, peer specialists, psychiatrists, psychologists, social workers, program managers, social activists, attorneys, and journalists. While their opinions naturally vary, they share a belief that our current system of psychiatric care needs to be vastly improved, and, many would argue, transformed.

We also want to provide readers with the opportunity to add their voices to this discussion. We encourage readers to leave comments (see comment policy below), and to submit recovery stories and op-ed submissions. We encourage our readers to visit our forums to further this communal discussion.

Finally, we are commissioning original journalism, both in video and print, that explore on-going efforts to remake care in the U.S. and abroad, and also investigate the problems and deficiencies with the current drug-based paradigm of care.

We welcome feedback and comments on how we can improve this website, and continue to build an online community that can be a societal force for change.

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When we started this initiative, we investigated whether it would be better to operate as a non-profit organization, or as a C corporation. We chose the latter, as it provided us with a quicker and easier way to obtain initial funding from “investors” for creating the website and supporting its development. The president of the C Corp is Robert Whitaker. The other board members are Louisa Putnam, Kermit Cole, Laura Delano, and Matthew Cohen.

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Her impact will be felt for a long time to come.

Jacqui visited our little corner of the world for the first time this March.  During her visit, I had the opportunity to witness her in many roles:  Facilitator at a small training, speaker at two large events, and as a wonderful human being during all the spaces in between.  Whatever role she was in, Jacqui was engaging and down-to-earth.  She offered her perspective in a way that was accessible to all and – in some instances – lead to perceptible changes in the way people regarded others or themselves, their lives and the potential for their future.

Following Jacqui’s visit, more than one individual went out of their way to report that they felt she was the best speaker they’d been offered the opportunity to experience.  Several individuals began brainstorming ways to bring Jacqui back to the area in the future to reach even more people before she’d even departed.  Ultimately, her presence, personal story and unwavering values helped to strengthen our community and build momentum for change and the development of the Hearing Voices Network in the Unites States.  Her impact will be felt for a long time to come.

Sera Davidow, Director, Recovery Learning Community, Western Massachusetts, USA.

Bad Things That Happen to You Can Drive You Crazy!

I’m feeling elated after an amazing evening at Mount Holyoke College in Massachusetts. The event, sponsored by Mount Holyoke College Department of Psychology and Education, the Western Massachusetts Recovery Learning Community, and the Freedom Center was attended by about 150 people  – students, academics and people from the local community – some as far away as Boston, Connecticut and Pittsburg. The auditorium was packed with people hungry for an alternative to the pharmaceutically driven, biomedical model which dominates so heavily in America.  Many were inspired when they heard Ron Coleman and Paul Baker speak late last year and there is a growing momentum for the development of the Hearing Voices Network in America. Change is happening.

My talk, entitled: “Bad Things That Happen to You Can Drive You Crazy! Understanding Abuse, Trauma, and Madness and Working toward Recovery”,

(see this link for further information: http://www.mtholyoke.edu/news/stories/5682743)

seemed to really resonate with others experiences and many people were clearly questioning the adequacy of a biomedical model to make sense of and respond to human distress.

I began by reading ‘A Tale of An Ordinary Little Girl’ and then spoke about the groundbreaking work of the Hearing Voices Movement, its success in many other parts of the world and our intention to revolutionise the way societies think about hearing voices and other unusual human experiences. I ended by stressing the imperative to take collective responsibility for the ills in our societies, to become aware of the dominant ideologies that redefine reality and to challenge oppression, power, social norms and inequalities. I appealed to everyone to join the last great civil rights movement – fighting for the rights of those labelled as mentally ill.

As always, a number of survivors came up to me afterwards and thanked me for telling ‘their’ story. Lots of people wanted to find out more about how they could get involved in the movement, meet with others, start groups. People are impatient for a paradigm shift in the way we understand and respond to human suffering which is now, long overdue. Many are in anguish. Fortunately, there are already some fantastic Hearing Voices Groups running in the area, with several new groups in development. I left feeling proud, inspired and grateful to be part of such a wonderful, powerful movement for change in the world.

There is still so much work to be done. First, it’s time for a bath and then bed.

Mad In America

I’m off to America tomorrow to help spread the word about the pioneering work of the Hearing Voices Movement. On Monday I will deliver the first session of the ‘Starting Hearing Voices Groups Training’ at the Western Massachusetts Recovery Learning Community. It will be great to be a part of these important developments particularly as Gail attended the very first Hearing Voices Group Facilitation training that I ran in London back in 2005.

This training looks to continue the positive momentum of the Hearing Voices Movement in the United States, with the primary purpose of training people to start their own Hearing Voices Groups in the local area. I will be facilitating the training along with Oryx Cohen, Director of the National Empowerment Center’s Technical Assistance Center and former Co-Facilitator of the RLC Hearing Voices Group in Holyoke and Gail Hornstein, Professor of Psychology at Mount Holyoke College, Co-Facilitator of the RLC Hearing Voices Group and author of Agnes’s Jacket.

On Tuesday I will be interviewed by a filmmaker about my work, meet with members of the Recovery Learning Community in Worcester before going to deliver my presentation at Mount Holyoke College entitled –

Bad Things That Happen to You Can Drive You Crazy! –

Understanding Abuse, Trauma, and Madness and Working toward Recovery.

See this link for further information: http://www.mtholyoke.edu/news/stories/5682743

On Wednesday I will travel to Framingham where I will give a presentation at Advocates, Inc.

Before I fly back home on Thursday evening, I will meet Robert Whitaker, author of Mad in America and Anatomy of an Epidemic. Bob has agreed to speak at a fundraising event for the Hearing Voices Network when he is in London in November – watch this space for further info!