News

INTERVOICE

We are a member of  INTERVOICE, (more information here) the international organisation representing networks in 35 countries across the world.

Reverend Dr Giles Fraser 09/10/2017 Thought for the Day BBC Radio 4

Reverend Dr. Giles Fraser reflects on what it means to be human and our capacity to experience wonder. Taking as his starting point the film “Blade Runner” based on the short story by voice hearer and science fiction writer, Phlip K Dick, he refers to the following quote:

I’ve seen things you people wouldn’t believe. Attack ships on fire off the shoulder of Orion. I watched c-beams glitter in the dark near the Tannhäuser Gate. All those moments will be lost in time, like tears in rain. Time to die

Reverend Dr. Giles Fraser concludes his talk by enthusiastically speaking of the link between science and religion.

Rethinking the validity of Schizophrenia on World Mental Health Day An Open Letter to Rethink, the English Mental Health Charity

This an Open Letter written to Rethink, the English Mental Health Charity.

It was sent to Rethink on World Mental Health Day.

If you would like to add your name in support of this letter please contact Paul Baker at [email protected]

You can also add your name by writing in the comments section below.


To: Mark Winstanley, CEO, Rethink Mental Illness

10th October 2017

Dear Mark

Rethinking the validity of Schizophrenia on World Mental Health Day
An Open Letter to Rethink, the English Mental Health Charity

We are are a group of concerned citizens. Our backgrounds are diverse. We are people who hear voices, people living with the diagnosis of schizophrenia, family members and friends, experts by experience, experts by profession and researchers from the UK and beyond.

We are writing to you because Rethink has an important and respected voice in the world of mental health.

What you say as an organisation is significant. The work and findings of the Schizophrenia Commission in 2012 (1) and your part in the Time To Change Campaign (2) in England being recent examples of this.

In honour of World Mental Health Day 2017 we want to ask you to join us in a creating a new conversation around the term “schizophrenia” and the way in which we talk about this with the general public and within mental health services.

Specifically, we want to discuss your recent press release “New survey shows schizophrenia remains widely misunderstood” published on the 18th September 2017 (3) based on the findings of a survey carried out on your behalf by YouGov of 1500 people. The survey revealed that the “condition” is widely misunderstood. You warned that myths about “schizophrenia” are dangerous.

We agree that there are a lot of misconceptions about the diagnosis of schizophrenia. However, we are concerned that by challenging public myths about schizophrenia you are reinforcing one of the biggest myths – that schizophrenia is a valid diagnosis – and that the experiences of people diagnosed with schizophrenia are best understood as symptoms of an underlying mental illness.

We appreciate that in public awareness campaigns it can be felt that it is necessary to present a simple picture of mental health problems in order to gain public empathy. Yet, with this comes a problem. It is misleading.

The description of schizophrenia as a disease process, as acknowledged on your own website is not founded on any physical evidence. As you say “There are no blood tests or scans that can prove if you have schizophrenia. Only a psychiatrist can diagnose you after a full psychiatric assessment. Psychiatrists use manuals to diagnose mental illnesses.” (Rethink) (4). This is after more than 100 years since it was first used as a descriptive term.

The idea that schizophrenia is an actual illness entity or disease, rather than a way of categorising certain experiences gives the unfortunate impression that experiences such as hearing voices are synonymous with the diagnosis of schizophrenia. However, research tells us that hearing voices, seeing visions and having unusual thoughts exist on a continuum in the general population (5) and can also be associated with a wide range of mental health diagnoses. Furthermore, it gives the impression that voice-hearing is solely a symptom of a mental illness when the majority of voice hearers in the general population have never needed mental health care (6).

As you will be aware schizophrenia is very much a contested diagnosis and it is receiving increasing criticism from multiple fronts, including from professionals, survivors and researchers. The chair of the Schizophrenia Commission (commissioned by Rethink), Professor Sir Robin Murray wrote in the Schizophrenia Bulletin in 2017 that the schizophrenia construct:

“is already beginning to break down … presumably this process will accelerate, and the term schizophrenia will be confined to history, like ‘dropsy’ … Amazingly, such is the power of the Kraepelinian model that some psychiatrists still refuse to accept the evidence, and cling to the nihilistic view that there exists an intrinsically progressive schizophrenic process, a view greatly to the detriment of their patients.” (7)

Murray is not alone. The distinguished Dutch psychiatrist Jim Van Os has also called for the abandonment of “schizophrenia” as a useful description and concept. In an article in the British Medical Journal (2016) he argued that because it is often understood as a hopeless chronic brain disease, it should be dropped and replaced with something like “psychosis spectrum syndrome.” (8)

The Dutch psychiatrist, Professor Dr. Marius Romme, the co founder and former President of INTERVOICE goes further:

“The schizophrenia problem is the lack of scientific validity of the illness concept and the denial of the meaningfulness of the separate symptoms. These go together and make it impossible to solve the problems of the person… What we have to acknowledge is that psychiatrists don’t know what to else to do, apart from giving the diagnosis, so we can be angry with them, but that’s all they know. So when they see a person hearing voices, they easily identify that experience with schizophrenia, and the same if they see someone with delusions, etcetera… In normal health care, you have a complaint, then the doctor looks for the cause of that complaint, then puts complaint and cause together and makes a diagnosis. Psychiatrists do something different, they construct an illness from separate symptoms. They don’t look for the cause. Schizophrenia as an illness entity means that the symptoms are the consequence of the illness. There is no cause for the illness; the illness is the cause. This has no empirical basis and prevents a solution, because you don’t analyse the background of the symptoms. The experiences defined as the symptoms of schizophrenia are independent of the diagnosis. These experiences are meaningful in themselves, mostly related to emotional problems.” (9)

In contrast, in the BBC article “Have you got the wrong impression about schizophrenia” based on the press release, Brian Dow, director of external affairs at Rethink Mental Illness is quoted as saying; It’s about time we all got to grips with what schizophrenia is and what it isn’t. “Schizophrenia can be treated and managed, just like many other illnesses. It’s not a dirty word or, worse, a term of abuse.” (10)

Schizophrenia is not an illness that causes symptoms, it is a term used to categorise people’s experiences. However, the impression may be given that schizophrenia is an illness that affects the way we think and causes an array of symptoms including hearing voices, difficulties concentrating and having unusual beliefs. The position is based on the ‘mental illness is an illness like any other’ metaphor. It is well-intended in attempting to bestow dignity to the sickness role and to remove blame and by educating the public that “these people” are not responsible for their actions.

Unfortunately, we believe it has the opposite effect as it reinforces the belief that “schizophrenia” is “a debilitating disease” caused predominantly by a biochemical imbalance of the brain. In this way diagnostic labelling increases belief in bio-genetic causes, and also increases the sense of perceived dangerousness, unpredictability, lack of responsibility for own actions and lack of ‘humanity’ of people with the diagnosis. It also leads to the perception that the problem is more severe, that people are more dependent and the condition is bereft of hope of recovery. Furthermore as your survey revealed it increases fear, rejection and a desire for distance from people with the diagnosis.

It appears that bio-genetic causal beliefs, and diagnostic labelling, are making attitudes worse. The more that ordinary people think of the condition as a brain disease, and the less they recognise it to be a reaction to unfortunate circumstances, the more they shun people with the diagnosis. A biological approach makes it all too easy to believe that human beings fall into two subspecies: the mentally well and the mentally ill. When we label people as vulnerable, deficient or problematic what we do is define them out of the community and redefine them as clients of a service system, no longer as friend and neighbour. When we do that we take some of the soul of the person.

However, in twenty one countries including England, when asked, the public believe mental health problems, including psychosis, are caused primarily by adverse life events (11). Unfortunately, for every psychiatrist who agrees with the public there are 115 who think ‘schizophrenia’ is caused primarily by biological factors (12).

This gives us a sense of the agendas that need to be addressed.

In our opinion the diagnosis reduces complex challenges of living to an underlying disorder with symptoms. However these ‘symptoms’ may not be ‘just symptoms’. They may be profound, authentic feelings, emotions and moods which are an integral part of a person’s relationships with other people. Their struggle with actualising their authentic life. To dismiss these profound, authentic feelings as ‘just symptoms’ is to dehumanise and desensitise the person. This not only effects the individual with the diagnosis but all those around them and the community as a whole.

We agree with Brian Dow, your director of external affairs, who said in the BBC article:

“The symptoms of schizophrenia don’t fit neatly into a box, everyone will experience it differently. However, we can all play a role in rethinking schizophrenia, and helping to change attitudes, by learning to separate the myths from the facts.”

We would go further. We think that a new way forward needs to be forged. We need to acknowledge that symptoms associated with with diagnosis with schizophrenia can be understood as meaningful experiences in the context of someone’s life. Meaningful experiences that need to be explored.

We need to be asking the question: “What happened?” rather than “What’s wrong with you?”. For instance, we need to be investigating adverse childhood events and psycho-social approaches in relation to episodes of “psychosis” as currently understood. (13)

The are good grounds for taking this position. Increasingly, research is telling us that many people who go on to hear distressing experiences, experience episodes of psychosis or have diagnosis of schizophrenia have been through a number of adverse life events and trauma. This can include childhood sexual abuse, racism, bullying, neglect and other forms of victimisation, poverty, isolation and loss. (14)

For many, the voices can be understood in response to these difficult events, with the themes and identity of the voices being related in direct and metaphorical ways to the situations they have faced or the emotions they have been left with.

It is also important to remember that voice hearing is a diverse experience, with many possible causes and interpretations. Some people for example, hear voices that are an important and meaningful part of their daily life, an asset rather than a cause of difficulty.

Framing schizophrenia as an ‘illness like any other’ can increase stigma, not reduce it. Therefore we maintain that ”schizophrenia” as a construct is not useful or helpful for many people who receive the diagnosis and for society as a whole. Portraying mental ill health as a brain disease can only increase stigma. It diverts our attention away from other ways in which we can help people. It stops us from building a healthier world and encourages in people with the diagnosis, alienation, pessimism and a deep despair.

We applaud your mission of challenging misleading stereotypes about the diagnosis of schizophrenia. We want to stand alongside you in this. However, we firmly believe that if we are to really change the public narrative around schizophrenia we need to take a different approach.

Professor Sir Robin Murray’s views about the future demise of “schizophrenia” points to the need for proactive action. Our common task is to work together and create a culture where people who hear voices, see visions, experience altered and extreme states are supported in ways that are creative and hopeful.

This is why we want to engage with you to discuss the validity of the term “schizophrenia” in terms of the following issues:

  • We need to be honest: Presenting schizophrenia as an uncontested illness is misleading and could worsen stigma. Instead, we need to be honest with the general public about the debates and uncertainty surrounding the term.
  • Focus on making connections between people: The use of diagnoses and illness language separate us (the well) from them (the ill). However, when we talk about the struggles labelled as psychosis in a human way, describing the context and sense within the experiences, we can build bridges between people. We need to empathise with people’s stories, and not their diagnoses.
  • Increase awareness of the meaning that can be found within experiences like voices rather than presenting them as mere symptoms of an illness. Demonstrate that this meaning can be explored, asking “what’s happened to you – not what’s wrong with you”.
  • Emphasise the importance of different adverse life experiences that have been linked to many people’s experiences of psychosis and diagnoses of schizophrenia. This includes the importance of social determinants such as oppression, poverty and individual experiences of adversity and trauma.

We would welcome your leadership and partnership in making this happen, as you did bravely with the Schizophrenia Commission in 2012.

We hope you will agree to meet to discuss these issues, or engage in a written dialogue with us so together we can identify constructive and creative ways to move forward.

We look forward to your reply.

Your sincerely

Supported by 74 people

Eduarda Abilio, Survivor, Portugal
Tazma Ahmed-Datta, Portland, Oregon, USA
Valentina Alexa, Psychologist, Romania
Alan Baker, Three Treasures School of Taijiquan, Oxfordshire, England, UK
Paul Baker, INTERVOICE Social Media Coordinator, England, UK
Ivan Barry, Recovery Activist, Berlin, Germany
Philip Benjamin, Psychiatric Nurse, INTERVOICE Board, UK and Australia
Julie Bevan, England, UK
Kenneth Blatt, M.D., Psychiatrist, West Hartford, CT, USA
Brigid Bowen, Director, Compassionate Mental Health, Wales, UK

Alison Branitsky, voice hearer, Hearing Voices Network, USA
Berta Britz, voice hearer, Montgomery Hearing Voices Group, USA
Christine Brown, RMN, Hearing Voices Network, Scotland, UK
Peter Bullimore, England, UK
Bernie Bush, Australia
Roberta Casadio, psychologist and discovery partner, Italy
Oryx Cohen, Hearing Voices Network, USA
Ron Coleman, Scotland, UK
David Cooper Claire, survivor of schizophrenia diagnosis, Texas, USA
Dirk Corstens, psychiatrist, vice chair, INTERVOICE, Netherlands

Hywel Davies, Chair of Hearing Voices Network Cymru and voice hearer, Wales, UK
Margreet de Pater, ISPS Executive Committee, Netherlands
Michelle Dalton, artist, voice hearer, Cork, Ireland
Leonardo Duart Bastos, psychologist, Coordenador/ Fundador Grupo de Ouvidores de Campinas, Brazil
Stacey Duffy, PsyD, Clinical Psychologist working with people experiencing voices, California, USA
Carol Dugdale, Hearing Voices Group Facilitator, Manchester, England, UK
Jørn Eriksen, Psychiatric nurse, Denmark
Sandra Escher, PhD, INTERVOICE, Netherlands
Trevor Eyles, Psychiatric Nurse, Psychotherapeutic Educator, Denmark
Roberta Feltham, parent, Bournemouth, England, UK

Gina Firman Nikkel, President/CEO, Foundation for Excellence in Mental Health Care, USA
Daniel Fischer, MD, PhD, survivor of schizophrenia label, USA
Geir Margido Fredriksen, Psychiatric Nurse, Molde, Norway
Linda Garland, England, UK
Lia Govers, person healed from ‘schizophrenia’ through psychodynamic, psychotherapy, Turin, Italy
Marty Hadge, HVN National Trainer, Voice hearer, Massachusetts, USA
Will Hall, MA, Dipl.PW, PhD candidate, Maastricht University
Paul Hammersley, psychologist, England, UK
Judit Harangozó MD psychiatrist, Community Centre of Semmelweis Univ. – Awakenins Foundation, Budapest, Hungary
Akiko Hart, Hearing Voices Project Manager, Mind in Camden, England, UK

Rebecca Hatton, PsyD, Ann Arbor, MI, USA
Yasmin Ishaq, England, UK
Kevin Healey, Recovery Network: Toronto, Canada
Cory Isham, trauma survivor, psychologist & social worker, NW England
Itay Kander, Social Worker, Israel
Jen Kilyon, Trustee of Soteria Network and ISPSUK
Martijn Kole, (ex) user of Mental Health Services, peer leader and founder Enik Recovery college, Netherlands
Rita Long, People With People, Stockport, England, UK
Noreen Marie McLaughlin, voice hearer, Co Donegal, Ireland
Kieran McGuire, Australia

Joanne Newman, Lived Experienced Educator, ECU, Busselton Hearing Voices Network, Australia
Mad in America Foundation, USA
Michael O’Loughlin, Adelphi Unversity, New York, USA
Louisa Putman, Director at Arco Iris Institute, Marriage & Family Therapist (MFT), Arco Iris Institute, New Mexico, USA
Greg Ralls, professional engineer, voice hearer, Perth, Western Australia
Mary Ranke, Family member, Australia
Bodil Roved, psychiatrist, board member in Danish Society for Psychoanalytic Psychotherapy, Denmark
Professor Marius Romme, psychiatrist, co-founder INTERVOICE, Netherlands
Olga Runciman, psychiatric nurse, psychologist & voice hearer, Danish Hearing Voices Network, Denmark
Barbara Schaefer, Beacon Social Care, Nottingham, England, UK

Joachim Schnackenberg PhD, Experienced Focussed Counselling Institute, Germany
Dorothy Scotten Ph.D., LICSW, Walden University, Minneapolis, USA
Ann-Louise S. Silver, M.D. Columbia, MD, USA
Dr. Helen Spandler, Reader in Mental Health, University of Central Lancashire, Editor: Asylum, the magazine for Democratic Psychiatry, England, UK
Olatunde Spence, art therapist and parent, Manchester, England, UK
Penny Stafford, Edinburgh, Scotland
Radoslwa Stupak ,MA, PhD candidate in psychology, Jagiellonian University, Poland
Alison Summers, Psychiatrist and psychotherapist, ISPS, UK
Satyin Taylor (personal capacity) Lived Experience; Care Coordinator/Chaplain; Trustee, National Spirituality and Mental Health Forum; Spitiual Crisis Network London Group, London, England, UK
Ros Thomas, Young Peoples Worker, Gateway Community Heath, Australia

Ron Unger LCSW, Chair of the Education Committee of ISPS-US
Joel Waddingham, Psychiatric Nurse, England, UK
Rachel Waddingham, Chair of INTERVOICE, England, UK
Dr. Angela Woods, Hearing the Voice, University of Durham, England, UK

References

Schizophrenia Commission Schizophrenia – The Abandoned Illness, Rethink, 2012
Time To Change Campaign
New survey shows schizophrenia remains widely misunderstood Source: Rethink, 18 September 2017
Schizophrenia – Symptoms & diagnosis Source: Rethink Website
Lawrence, C., Jones, J., & Cooper, M. (2010). Hearing Voices in a Non-Psychiatric Population, Behavioural and Cognitive Psychotherapy, 38(3), 363-373; LC Johns, J Van Os (2010)The continuity of psychotic experiences in the general population, Clinical psychology review
Kråkvik B., Larøi F., Kalhovde A. M., Hugdahl K., Kompus K., Salvesen Ø., Stiles T. C. Vedul-Kjelsås E. (2015). Prevalence of auditory verbal hallucinations in a general population: A group comparison study. Scandinavian Journal of Psychology, 56, 508–515.
Robin M. Murray, Mistakes I Have Made in My Research Career, Schizophrenia Bulletin, Volume 43, Issue 2, 1 March 2017, Pages 253–256
Professor Jim van Os “Schizophrenia” does not exist,, British Medical Journal 2016; 352
Professor Marius Romme, How to solve the schizophrenia problem, 6th World Hearing Voices Congress Thessaloniki, Odysseying with the sirens, Congress speech, 2014
Have you got the wrong impression about schizophrenia? BBC News, 18 September 2017
Read, J., Haslam, N., Sayce, L. and Davies, E. (2006), Prejudice and schizophrenia: a review of the ‘mental illness is an illness like any other’ approach. Acta Psychiatrica Scandinavica, 114: 303–318
John Read, Jacqui Dillon Models of Madness: Psychological, Social and Biological Approaches to Psychosis edited by
Filippo Varese, Feikje Smeets, Marjan Drukker, Ritsaert Lieverse, Tineke Lataster, Wolfgang Viechtbauer, John Read, Jim van Os, Richard P. Bentall; Childhood Adversities increase the Risk of Psychosis: A Meta-analysis of Patient-Contol, Prospective and Cross-sectional Cohort Studies, Schizophrenia Bulletin, Volume 38, Issue 4, 18 June 2012, Pages 661–671
Morgan C, Gayer‐Anderson C. Childhood adversities and psychosis: evidence, challenges, implications. World Psychiatry. 2016;15(2):93-102. doi:10.1002/wps.20330.

 

Young People Who Hear Voices

We have updated our Young People Who Hear Voices page.

More information for young people and parents has been added.

You can visit the page here.

Young Voice Hearers Study

Dr. Sarah Parry and Dr. Filippo Varese of Manchester Metropolitan University in England, are conducting an investigation into young voice hearers (aged 10-18) and their parents to inform children’s services and interventions.
They will be recruiting for the study over the next year.
This is the new web link with details of the Young Voices Study and it would be great if you can circulate the link amongst your networks.
 For more info, here are some of their most recent articles by the researchers:
Caregivers and young people can also tell them about their experiences through their online surveys (links below)
Children (aged 13-18) who hear voices http://mmu.ac.uk/hearing-voices-children
Parents/carers of children who hear voices http://www.mmu.ac.uk/hearing-voices-parents
Additionally they have two social media accounts with tags @youngvoicestudy for the study:
See for more information for our page on Young People and Children Hearing Voices here.

Surviving College as a Voice Hearer

Article published by the British Columbia Hearing Voices Network, Canada. Diana Girsdansky reports on a workshop session at the recent World Hearing Voices Congress in Boston. A session led by Sarah and Alison, two voice hearers attending college who gave tips as how to survive as a voice hearer.

As Diana says:

“One of my favourite sessions was led by two women in their early twenties. Both are engaged students and voice-hearers, as well as being students of psychology at Mt. Holyoke, an elite women’s college in Massachusetts. They shared strategies on “How to Survive College as a Voice Hearer.””

Read the full article here

 

Why we Britons are so depressed, despite all those happy pills

“Consider this: we have some of the highest rates of antidepressant prescribing in the world — and this is rising. The NHS issued 64.7 million prescriptions for antidepressants last year, double the amount from a decade ago. Yet research also shows people are getting more depressed, not less. So what is going on?”

Read more here

Daily Mail, 18th September 2017

Listen To A Voice Of Reason – Article about Hywel Davies and the Hearing Voices Movement

Listen To A Voice Of Reason: An Interview with Hywel Davies
Western Telegraph
23rd August 2017

A MILFORD Haven man is devoting his life to supporting individuals who experience auditory hullucinations – voices in their head.
Hywel Davies first began to hear voices when he was 11 years old.
Now, some 52 years later, he spends his time and energy spearheading a pioneering network of groups seeking to broaden understanding and acceptance of the condition across the globe.
“I first began hearing voic­es in 1965,” said Hywel now 63. ‘
“To begin with it was posi­tive.
“The voices actually helped me through school, but when I turned 17 it became a bit frightening.”
Hywel spent the next 25 years coming to terms with the voices, unaware that there were other people deal­ing with the same issues.
Then his life changed.
“I subscribed to a magazine called Open Mind,” he said. In 1995 there was an article discussing voices I recognised myself in it. “I was a voice-hearer.”
The key is to help people understand that they can come to terms with their voices and live with them I recognised myself in it. Voices network.
The article discussed an upcoming conference on the subject in Maastricht in the Netherlands. The conference was led by Professor Marius Romme and Dr Sandra Escher, founders of the Hearing voices movement.
“My mother encouraged me to attend she said it would be like going to Sunday School.”
She said it in a posi­tive fashion.
Hywel attended.
What he learned there was to take him on a journey which saw him learning to better manage his own situation and take a leading role spreading the message of support and understanding others as part of the Hearing Voices network.
Key to this has been the changing of attitudes towards those hearing voices socially and professionally.
“Traditionally; if you told a psychiatrist you heard voices you would be sent to a mental health institution said Hywel.
“The problem with many mental health services are the still based in the early 20th century thinking.
“The traditional western medical view has been that the voices were caused by a chemical imbalance, which could be treated with med­ication.”
The use of anti-psychosis medication can prove detrimental to health.
“Medication can help – but it is not a cure,” said Hywel.
“It can in fact be detrimental.
The voices are real, not something that can be cured.
“Long term anti-psychosis medication use can reduce life as much as 20 years, but people are still being treated with inappropriate medication”.
The Hearing Voices move­ment encourages people to take control of their situa­tion without necessarily resorting to medi­cation.
“The tide is turning,” said Hywel.
“People are beginning to understand that this is not a psychological illness.
The Hearing voices network is not about anti-psychiatry, it is about complementary services.
“We support people who are desperate for help and parents who are desperate for help for their children.
“Children are often dismissed as having over-active imagination or are diagnosed with psychosis.
“It’s terrifying for them. Their parents are often at the end of their tether.
“The voices are often distressing and sometimes horrible. People think they are going mad.
“The key is to help people understand that they can come to terms with their voices and live with them.”
Key to the networks is recognising that the voices cannot be “cured”. They form part of the individual.
“It is about working with someone’s reality,” said Hywel
“Sometimes it is hard work, but it is about accepting the experience.
“It is important to build a relationship with the voices and have a dialogue with them.
“It is not about mastering the voices, but negotiating with them
“We work to enable people to control their voices and have a dialogue with them.
Hywel’s involvement with hearing voices has seen him travel the globe, speak­ing to a worldwide audience and helping to establish net­works in numerous countries.
He has personally played a significant role in devel­oping 34 international net­works and chairs Hearing Voices Network Cymru.
Hearing Voices Network Cymru currently distributes books and information, and has sent out more than 500 information packs to recipients in more than 50 countries all across the globe, including the USA and Australia.

This article has been amended from the original to correct factual errors.

Mental Health Summer Recovery Camp 2017

Mental Health Summer Recovery Camp 2017

Getting the Experience of a Recovery Community for Everyone

7th – 12th September 2017

Tanycoed Farm, Llansilin, Shropshire, SY10 9BS, Wales

Working To Recovery Ltd hosted their third Summer Recovery Camp.

The purpose was to create an environment of recovery and for everyone to experience it for themselves! Each year the Recovery Camp, grows organically, both leading up to it and during the Camp. During the Recovery Camp there were talks, debates, workshops, alternative therapy and a whole host of other things that happen.The morning begins with Chi Gong, Meditation and other practices. This was followed by a Morning Meeting when we all checked-in. This was followed by workshops. Workshops are run by anyone attending and so range from a whole host of areas.

After lunch, we had a ‘Big Tent Discussion’ – which is led by an invited speaker, who talks on a topic, opening up to a debate and discussion. Following this there were more workshops.

Throughout the day, there were taster sessions of alternative therapy (for donation) and a range of other things that organically grew throughout the camp – like EFT, Zen Tarot Readings, Energy Healing, etc…

The evening was a time to have fun, play and relax. On the last night there was a Mad Pride night, where anyone could stand-up and do a piece – poetry, story telling, singing, magic, comedy, whatever people can bring.

You can find out more about this highly recommended event here.

International Mental Health Congress


 
International Mental Health Congress

 18 & 19 July 2017 | All Nations Centre, Cardiff

The Congress was a great success. 250 people attended from all over Wales and across the globe.

Hywel Davies, chair of the Hearing Voices Network Cymru gave a keynote speech entitled “Living with Voices”. In the speech he said:

“By opening up the possibility of new ways of regarding the experience of voice hearing outside of the medical model we are creating more accepting and hopeful ways of considering so called psychotic experiences as meaningful and resolvable.

By involving users and carers creatively in the decision-making process in terms of policy, legislation, healthcare system and evaluation, we can bring about a more sensitive and humane approach to mental health in the western world. I believe that the lessons learnt over the last thirty years by the Hearing Voices Movement have much relevance to mental health services across the world. Furthermore, ensuring that the experience of people with lived experience is at the centre of thought and action in the recovery process is crucial to the successful development of emancipatory and effective mental healthcare systems …..

…. A principle lesson from my experience is the importance of encouraging voice hearers to talk and share experiences. The voices are not in themselves the problem, it is our relationship with our voices that can at times be overwhelming.

A problem shared is a problem halved.”

You can read Hywel Davies’s keynote speech here

A selection of photographs of the event can be seen here.

The right of everyone to the enjoyment of the highest attainable standard of physical and mental health

Hearing Voices Cymru signs Open Letter endorsing the Report of the United Nations Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health

Mental Health Europe and the British Psychological Society are seeking signatories to a letter endorsing the recent and ground breaking United Nations Special Rapporteur’s report on mental health – to raise awareness of it among the media, policy makers and the mental health sector.

The report calls for a shift away from isolating mental health services which are coercive and inappropriately medicalised to ones that are recovery and community-based & promote social inclusion.

You can find the report here:

You can find the letter of support here:

Some quotes from the report:

  • “The history of psychiatry and mental health care is marked by egregious rights violations”
  • “We have been sold a myth that the best solutions for addressing mental health challenges are medications and other biomedical interventions”.
  • “Conventional wisdom based on a reductionist biomedical interpretation of complex mental health-related issues dominates mental health policies and services, even when not supported by research”.
  • “For decades now, an evidence base informed by experiential and scientific research has been accumulating in support of psychosocial, recovery-oriented services and support and non-coercive alternatives to existing services”.

We are one of a number of organisations from the UK, Europe and beyond that have signed.

If you or your organisation would be interested in signing, please contact [email protected] or email [email protected], and they’ll add your name.

 


Paul Robeson: son of a slave who became a superstar

In 1961 Paul Robeson was diagnosed with ‘depressive paranoid psychosis’. Robeson was driven insane by his humanity. He felt ‘a suffocating weight, a smothering set of expectations that he was unable to meet’. Robeson made multiple suicide attempts and had 50 courses of electroconvulsive therapy.

He had strong links with the Welsh mining community as this extract shows:

“In the West End one evening, Robeson overheard the carousing of a Welsh male voice choir. Men from the Rhondda were in London on a protest march. Robeson was transfixed and joined in with the communal street and pub singing.

In the coming months and years, ‘he forged an intense and remarkable relationship with the men and women of the mining villages of South Wales’.

He visited Pontypridd and the valleys many times, seeing in the miners, who lived in poverty and struggled with thankless tasks, something of American slavery.

The Welsh accepted him unquestioningly: ‘Aren’t we all black down the pit?’ This brings tears to my eyes.

As late as 1957, Robeson was joining in with the miners’ concerts through a radio-link from America to Porthcawl. He couldn’t be there in person as his passport had been cancelled.

Why? Because the Welsh people had awoken Robeson’s political conscience, which was strengthened by his visits to Spain during the Civil War. He also visited the Soviet Union, where he hoped that post-Revolutionary Russia would be a ‘land free of prejudice’.

In this biography of Robeson’s ‘dizzy rise and crashing fall’, his collapse was caused by political naivete. Believing that the Left would abolish racism, he gave to any anti-fascist cause.”

See the review of the new book about the life of Paul Robeson entitled “No way but this: In search of Paul Robeson” by Jeff Sparrow here.

 

Living with Voices: Presentation by Hywel Davies to the International Mental Health Congress 18th & 19th July 2017, All Nations Centre, Cardiff

Croeso.

Welcome.

Prynhawn da.

Good afternoon

Could I ask the meeting to be upstanding to observe one minute’s silence on behalf of all the people in the world diagnosed by psychiatry with schizophrenia who have committed suicide in the past hundred and ten years or so.


It’s nice to see you.
To see you nice.

If I had known that there was going to be so many people at the conference today, I would have worn my wig.
However I didn’t and I haven’t.
You’ll have to accept me as I am.
I am a voice hearer, a retired lecturer of Spanish, a poet and a benefactor.

Born on August 3rd 1954 in St Thomas’s Hospital in Haverfordwest. I was a breach baby and it was a long and difficult birth. The trauma of the birth may have affected my brain and my consequent development.

I was raised at Upper Robeston Farm in Robeston West near Milford Haven in Pembrokeshire, West Wales, the only son of Mr. Hugh Davies and Mrs. Henrietta Davies (nee Howell). Educated initially in Milford Haven, at North Road Primary School and then in Gloucestershire at a boarding school called Wycliffe College. I obtained a Combined Honours Degree in French and Spanish at Birmingham University in 1977, then a Postgraduate Certificate in Education at Aberystwyth University in 1978.

I have heard voices since about the age of 11. I heard them for the first time at Wycliffe College. There was a nice voice that helped me cope with the fears I had of being in a boarding school and being away from home. The first time I heard a voice was after being told by a boy that he was being bullied. The voice I heard told me to tell the boy to “take no notice”. I duly told the boy to take no notice of the bullying. I continued to hear voices and experienced them as generally helpful throughout my school life until the age of I8.
My life in school was generally happy, productive and successful, occasionally affected by trauma.

 

During my University days I became religious and regularly attended a Welsh speaking chapel.

I enjoyed some of the courses followed at University and the social life. However I kept a little bit of myself to myself at University. I was active in education as a teacher and lecturer in Wales, England and Spain again as a consequence of hearing voices.

Teaching was a vocation (a calling) as at this time I considered myself to be Jesus (and I still do). I heard a voice say “O come unto me little children” and the voice told me that I was a teacher. Some years later I taught Spanish with humour, grace and success to over 350 adults in Milford Haven and Haverfordwest between 1987 and 1996. I am now retired.

Voice hearing is the hearing of a voice or voices inaudible to others. It is not necessarily a sign of a severe mental “illness”. Triggered by bereavement, physical illness, unemployment, divorce and/or some other traumatic event, voice hearing is experienced by 10 – 15% of the population in their life time. 5 – 7% of the population hear a voice or voices at any one given moment in time. 1% of the world population are labelled by psychiatry as “schizophrenic”. 53% of people who are labelled by psychiatry as “schizophrenic”, are voice hearers.

In terms of my mental health milestones, I had a nervous breakdown in May 1983, and was admitted to a psychiatric hospital in Carmarthen, where I stayed as a patient for three months. At the time I was labelled by psychiatry with the diagnosis of “schizophrenia”. For me this was the beginning of a journey of change, discovery and transformation.

Even though I was diagnosed as having “schizophrenia”, I was never told this, however my mother
was.

Generally I had good psychiatric care. People were attentive and kind.

When I first entered the hospital I was in a single room, initially for two weeks. I lost my ability to speak and I was very frightened. I found the experience of being hospitalised frightening but I found fellowship amongst some of the patients and ancillary staff and my parents visited me in hospital.

In 1985 I was admitted for three months into the psychiatric unit of a general hospital in North Devon. Again I found fellowship amongst one or two of the other patients and staff. Colleagues from the school where I was teaching visited me in hospital.

In the community, on my return to Pembrokeshire, I had contact with a psychiatrist and a Community Psychiatric Nurse. They did not talk with me about my voices and visions.

My main treatment was medication and attendance at Bro Cerwyn Psychiatric Day Hospital in Haverfordwest in Pembrokeshire.

People and relationships with other people helped me to get direction, hope, and friendship.

My mother was a key person who helped me in my recovery. She bought me a book about “schizophrenia”. She encouraged me to think about my experience of “mental illness” in different ways. She encouraged me to see a counsellor who dealt in astrology. My mother also encouraged me to attend my first meeting of Pembrokeshire Mind, at the time, a fledgling mental health charity. She also encouraged me to attend the international hearing voices conference in Maastricht, Holland in 1996. She said that it would be like attending Sunday School.

There are many key individuals, colleagues, relatives and friends who have helped me as an educator and mental health activist. To name a few:

Keith Miles, the Nurse in charge of Bro Cerwyn Psychiatric Day Hospital in Haverfordswest and Richard Robson, the Mind Project Officer in Dyfed, encouraged me to be involved in mental health voluntary work. And I did so.

Sally Clough, an art therapist, humanised and sensitised me and encouraged my love again, of music and film.

David Morgan, a United Reform Church minister gave me Christian love and leadership and David, as Chair of Pembrokeshire Mind, played an important part in my recovery. At this time I helped Pembrokeshire Mind as secretary, vice Chair and Chair.

Guy Norman a worker with West Wales Action for Mental Health was one of the people I reported back to on my return to Wales from the international hearing voices conference in Maastricht, Holland in 1996. Guy ran with the approach of the hearing voices movement and a hearing voices group was established in Pembrokeshire, one of the first in Wales.

Another individual who was and remains a key part of my recovery journey is John Stacey , he is a colleague, friend and confidant with whom I work closely in the hearing voices movement in Wales and elsewhere.

I would also like to acknowledge and thank Ron Coleman. He helped me through his lived experience and he showed that it is possible to get ones life back.

Marius Romme and Sandra Escher, founders of the Hearing Voices movement and editors of the pioneering books “Accepting Voices” and “Living with Voices: 50 Stories of Recovery” were and are key leaders in my recovery. They looked beyond the illness model and created a new reality for voice hearers, one in which voice hearers recovered.

 

It is my firm belief that voice hearers have a contribution to make to society. Or they have the potential to make a contribution to society. According to David Horrobin in his book “The Madness of Adam and Eve: How Schizophrenia Shaped Humanity”, people have been hearing a voice or voices since 100,000 BC. According to Julian James in his book “The Origin Of Consciousness in the Breakdown of the Bicameral Mind”, people have been hearing voices since 15,000 BC. Voice hearers shift human consciousness.

Voice hearers from the past and present include the Prophet Ezekiel, the Prophet Isaiah, St Paul, Teresa of Avila, Zoe Wannamaker and Sir Anthony Hopkins. The cave paintings of early man in the South of France and Northern Spain were, according to David Horrobin in the aforementioned book, inspired by voice hearers.

Voice hearers are, in my assessment, saints, prophets, shaman, gurus and/or geniuses. Or the potential for such. As writers, poets, dancers, actors, artists, musicians, composers, singer-songwriters, believers and/or scientists, voice hearers have been or have been people of worth. Or the potential for such.

For myself, I write poetry and this is an important and healing part of my life.

I take ownership of my experience and feel content. I am proud to be a voice hearer. I believe that I have lived before as Judas Iscariot, a Cathar, a 13th century French “heretic” and James I of England/ James VI of Scotland. I believe that I am Jesus.

I was labelled by psychiatry in a certain way in 1983. However, I think that reincarnation, astrology, spirituality, and complementary therapies can help society in the 21″ century.

I make choices and take responsibility for my own actions. I have been a mental health activist since May 1987. I knew what it was like to suffer and I wanted to make the world a better place. I am a philanthropist and I support a wide range of charitable causes. For instance, l help children with clefts in poor countries of the world (SmileTrain UK) and Christians globally. This has also been a productive and healing part of my life.

I am patron of INTERVOICE (the international network for training education and research into hearing voices). It is a UK registered charity and limited company that is the organising body for the International hearing voices movement.

In support of their work I funded the establishment of the INTERVOICE website and the Hearing Voices Network Cymru website. In 2011 I set up the Hearing Voices Information Resource Pack Fund, this provides financial support for the distribution of the Hearing Voices Information Packs, consisting of books, CD’s and DVD’s about hearing voices from a variety of perspectives. The Resource Packs are distributed globally, to date more than five hundred and eighty Resource Packs have been distributed to five hundred and forty five successful applicants from fifty four countries across the world.

More than thirty years ago in the Western World one would have been locked up in a psychiatric hospital or psychiatric unit, for a considerable number of years for admitting that one heard a voice or voices. Today that is not the case. The hearing voices movement is an idea whose time has arrived. In the words of Victor Hugo (the 19th century French writer): “There is one thing stronger than all the armies in the world, and that is an idea whose time has come”.

The World Hearing Voices Congress was successfully held in Cardiff, in 2012. The Congress attracted important enthusiastic pioneers from all over the world. It was with pride that I, as Chairman of Hearing Voices Network Cymru presided over a public meeting at which Professor Sir Robin Murray spoke bravely and eloquently about his change of attitude towards the concept of “schizophrenia” after a distinguished professional lifetime in British psychiatry. For Murray, “schizophrenia” is not now a bio-chemical imbalance of the brain. He now regards it as a social construct and believes that new ways of supporting people with unusual and extreme experiences, such as those developed by the hearing voices movement, need to be utilised by mental health services.

Spirituality has emerged as a key issue in the hearing voices movement over the years and by occasionally liaising with Dr. Simon McCarthy-Jones, an academic writer , lecturer and activist in the hearing voices movement, Simon has become possibly more aware of spirituality from a variety of perspectives. In the Koran it is stated that “suffering purifies the spirit”. George Clooney, the American actor, once said that:

“Religion is for those who do not wish to go to hell. Spirituality is for those who have already been there”.

I have no reason to doubt Mr. Clooney. By opening up the possibility of new ways of regarding the experience of voice hearing outside of the medical model we are creating more accepting and hopeful ways of considering so called psychotic experiences as meaningful and resolvable.

By involving users and carers creatively in the decision-making process in terms of policy, legislation, healthcare system and evaluation, we can bring about a more sensitive and humane approach to mental health in the western world. I believe that the lessons learnt over the last thirty years by the Hearing Voices Movement have much relevance to mental health services across the world. Furthermore, ensuring that the experience of people with lived experience is at the centre of thought and action in the recovery process is crucial to the successful development of emancipatory and effective mental healthcare systems.

I may be right in terms of what I think. I may be wrong. Miguel Unamuno, the 20th century Spanish philosopher said that a religion that does not doubt itself is not a religion. Similarly, a man who does not doubt himself is not a man. A woman who does not doubt herself is not a woman.

I am recovered, a traumatised good.

A principle lesson from my experience is the importance of encouraging voice hearers to talk and share experiences. The voices are not in themselves the problem, it is our relationship with our voices that can at times be overwhelming.

A problem shared is a problem halved.

Waldo Williams, possibly the greatest Welsh-language poet of the 20th century. He is from my home county of Pembrokeshire. I shall read the first verse of a poem he wrote about voice hearing:

Cân imi wynt: Sing to Me Wind

Cân imi, wynt, o´r dyfnder ac o’r dechrau,
Cân imi, y dychymyg mwyaf maes,
Harddach na golau haul dy gerddi tywyll,
Y bardd tu hwnt i’n gaeaf ym mhob oes.

Sing to me, wind, and from the deeps, from the beginning.
Sing imagination, greatest of all,
Your dark songs lovelier than sunlight,
Poet, in every age, beyond what we know.

(p. 172 – p. 173: The Peace Makers: Waldo Williams; translated by Tony Conran, published by Gomer, 1997)

In conclusion, people have been hearing a voice or voices and seeing visions for thousands of years. Voice hearers have a contribution to make to society. I look forward to the day when to hear voices is no longer regarded as a symptom or a problem but embraced as part of what it is to be a human being.

 

Thank you for listening.

 

Hywel Davies

 

Communities of inclusion grew up, where there was a coming together because ‘people with disabilities are not seeking power over you, they are seeking friendship’. Thought For The Day, Radio 4, Francis Campbell, 24/07/17

Frances Campbell on Thought for the Day, BBC Radio 4, 24th July 2017

“The publication of the BBC’s top salaries last week has spurred a wide ranging debate about pay and inequality within society. The BBC is not alone, universities too and many other employers – public and private – have been found wanting. And it is not just about equal pay, but a debate too about the levels of pay for particular jobs, including exchanges on this programme about the pay of Vice Chancellors.

Such debates are ultimately about worth, in this case, professional worth in the workplace, which is often reduced in our era by how much a person earns or does not earn. Contemporary society, especially in the West often measures worth in terms of salary, assets, celebrity, status, position and so on. But that focus in itself reduces our understanding of human worth.

Recently I was invited to a premier of a film called ‘summer in the Forest’ which challenges that limited understanding. It tells the story of Jean Vanier, a Canadian Christian, who had served in the Royal Navy during the Second World War. His experiences of seeing such a lack of human love, especially towards the most vulnerable in society, those with learning disabilities who were confined to institutions or subjected to horrific experiments or sent to death camps, led him to found a network of communities and projects called L’Arche (in English The Ark). Today, that network stretches across 37 counties and includes 149 communities which provide a loving home for people with learning disabilities and those who help them.

Jean, through faith, actions and words, is someone who, over 50 years ago challenged one part of humanity (the vast majority) to view another part of humanity through an entirely different prism and as a result, he transformed the lives of thousands of people, not only those with learning disabilities but also those who encountered them in friendship and community. Communities of inclusion grew up, where in his words there was a coming together because ‘people with disabilities are not seeking power over you, they are seeking friendship’.

Richard, a young member of the L’Arche community here in London told me that he’d found a home where everyone is treated equally. Everyone has their gift. He said, when a person first comes to the community, their eyes might be closed because of what they have experienced elsewhere, but soon their eyes are opened by the joy they meet’. He said, ‘No one is lonely in L’Arche.’

Richard’s positive human experience is possible because one brave human being challenged the rest of humanity to overcome its fear of difference; to open their eyes and see beyond first impressions and view human worth in its full richness.”

Photographs from the International Mental Health Congress, Cardiff, Wales 2017

Hearing voices Cymru Banner displayed at the All Nations Conference Centre for the Congress

 

 

Reflective Panel discusses points raised by Hywel Davies’s speech

Hywel Davies giving his keynote presentation to the Congress

Paul Baker and Hywel Davies during Hywel’s keynote presentation

Hywel Davies waiting to give his speech at the International Mental Health Congress

International Mental Health Congress, Wales, 2017 hosted by 1000 Lives and IMHCN

Hearing Voices Network Cymru Banner displayed at the Congress

Hearing Voices is a common human experience banner at the Congress

Norhameza Ahmad Badruddin, Clinical Psychologist, Permai Hospital, Johor Bahru, Malaysia discusses how her hospital have ended the use of restraint and isolation

Vaughan Gething, Cabinet Secretary for Health, Well-being and Sport opens the Congress

Thoughts from the Reflective Panel

John Jenkins, CEO of IMHCN introduces the themes for the day

Living with Voices: Refelctive Panel discussed the speech (2)

Les Rudd, Public Health Wales and John Jenkins, CEO, IMHCN

HVN Cymru signs open Letter endorsing the Report of the United Nations Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health

Open Letter endorsing the Report of the United Nations Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health

To whom it may concern,

Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health

We, a wide variety of organisations and individuals representing people with personal experience of mental health services, professionals and academics, welcome and endorse in the strongest possible terms the report of the United Nations Special Rapporteur, Mr. Dainius Pūras, on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.

See the report here.

This ground-breaking report is the second important commentary on mental health that has come out of the UN human rights system this year. This challenging report highlights that mental health has been a forgotten issue for far too long, leaving far too many people to suffer human rights abuses within mental health services. This most recent report goes further than the earlier report of the Office of the High Commissioner for Human Rights by calling out the ‘global burden of obstacles’ which are preventing our mental health systems from adopting a human rights-based approach which would guarantee the right to mental health for all.

We agree with the Special Rapporteur that these obstacles include power asymmetries, the prevalence of the biomedical model and biased use of evidence within the mental health system. We therefore also welcome the Special Rapporteur’s call for a shift in paradigm away from isolating mental health services which are coercive and medicalised, in line with the UN Convention on the Rights of Persons with Disabilities, to one that is recovery and community-based, promotes social inclusion and offers a range of rights-based treatments and psychosocial support at primary and specialized care levels. He also recognises the human rights imperative to invest in prevention and promotion. We endorse the Special Rapporteur’s further comments that: “…a reductive neurobiological paradigm causes more harm than good, undermines the right to health, and must be abandoned…. There is a need of a shift in investments in mental health, from focusing on “chemical imbalances” to focusing on “power imbalances and inequalities.”

We are living in a world of astounding – and very welcome – scientific and professional developments, which give great hope in our joint struggles to improve the health and wellbeing of all citizens. But it is also important to recognise that health is also a matter of social justice. Inequalities, poverty and abuse all impact on our physical and mental health, and the solutions are political and social as well as technical. The report rightly identifies a variety of effective practices and alternatives which situate mental health within a human rights and recovery-based paradigm and we agree that these must be scaled up and invested in.

Therefore we particularly welcome the Special Rapporteur’s recognition of the fact that mental health problems are; “… strongly linked to early childhood adversities, including toxic stress and sexual, physical and emotional child abuse, as well as to inequalities and violence, including gender based inequalities and gender based violence, and many other adverse conditions which people, especially those in vulnerable situations such as poverty or social exclusion, face when their basic needs are not met and their rights are not protected.”

We welcome these positive messages for a global approach to health and psychological wellbeing which ensures the participation of diversity of rights-holders and relevant stakeholders including users and survivors, civil society and communities and empowers them. We agree with the Special Rapporteur that we need to focus on the primary prevention of suffering and ill-health, as well as the care and recovery of people who experience ill-health or distress. We therefore look forward to a future where we work together to provide a coherent, scientific, but humane and psychological vision; where we offer care rather than coercion, fight for social justice, equity and fundamental human rights, and to establish the social prerequisites for genuine mental health and wellbeing.

Yours sincerely

Mental Health Europe – Santé Mentale Europe

British Psychological Society

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