Hywel Davies Speech at the Conference on User & Carer Involvement, Lille, 31/01/2014

On the 31st of January 2014 Hywel Davies gave a keynote speech at a World Health Organisation conference in Lille, France at a workshop concerning Users’ and carers’ involvement in decision-making: Policy, legislation, healthcare system, and evaluation.

The Hearing Voices Movement: An Alternative way to involve people with lived experience in decision making

Bonjour. Bore da. Good morning

It is nice to see you.

To see you, nice.

My name is Hywel Davies. I am a voice hearer and I have been a voice hearer since the age of eleven. My first experience of hearing voices occurred when a boy who had been bullied asked my advice as to what he should do and I immediately heard a voice that said take no notice and that was what I told him to do. This was the beginning of a life long experience of hearing voices, sometimes challenging and sometimes guiding.

Voice hearing is the hearing of a voice or voices inaudible to others. Triggered by bereavement, physical illness, divorce, unemployment and/or some other traumatic event,voice hearing is experienced by 10-15% of the population in their lifetime. In my opinion, voice hearers are saints, prophets, shamen, gurus and/or geniuses. Or the potential for such. Voice hearing may be the birth pains of a higher consciousness. Reincarnation,astrology and complementary therapies can realign voice hearers in society. On a personal note,in my previous lives I was Judas Iscariot, a Cathar (13th century French “heretic”) and James VI of Scotland/James 1 of England.

I am a philanthropist and I am the Chairman of Hearing Voices Network Cymru. I have been a mental health volunteer and advocate for social justice and humanity since 1987. I am a retired Lecturer of Spanish. I am a Founder Member of Mind Pembrokeshire, a mental health charity in West Wales and I am a former Language and Culture Adviser to Mind Cymru,the organisation that represents Mind in Wales.

I am going to address the issue of user and carer involvement in decision-making : policy, legislation, healthcare system and evaluation based, essentially, on my involvement in the hearing voices movement. Founded in 1987 and influenced by Professor Dr. Marius Romme’s and Dr. Sandra Escher’s 1993 pioneering book “Accepting Voices”, the hearing voices movement now exists in many countries of the world. There are now 29 hearing voices networks in 29 countries of the world. The hearing voices approach to mental health represents a more humane and more sensitive approach to “madness”.

I have been fortunate to get to know many people who hear voices and use services, family members, psychiatrists, nurses, psychologists and policy makers since the beginning of my involvement in Mind and the hearing voices movement.

An important founding principle of the hearing voices movement is that as members and as supporters, we regard ourselves as partners. We have equal respect for each other’s expertise through lived experience or profession. Fundamentally it starts from building good and trusting relationships with each other and from this strong foundation finding more effective ways of supporting each other..

What does this way of working mean for the involvement of users and carers in decision making?

Here are some vignettes that I hope will help to explain why this is so important.

In Scotland at a social event connected to the World Hearing Voices Congress of about 2009, I informally presented a written paper to Marius Romme, a co-founder of the hearing voices movement and Paul Baker, a key person in the Hearing Voices Network in England at the time. The paper was about establishing a website for voice hearers and in this way, the Intervoice website was established. I have since funded two websites for voice hearers and others: the Intervoice website http://www.intervoiceonline.org/ and the Hearing Voices Network Cymru website http://www.hearingvoicescymru.org. The two websites are now well-established and successful websites for voice hearers.The significance of the websites lies in the provision of valid information that accurately reflects the experience of people who hear voice. It also provides advice and support that has worked for people.

 A problem shared is a problem halved.

Another vignette is as follows. As a result of a discussion with Paul Baker and Ron Coleman, a voice hearer who played a key role in establishing the Hearing Voices Network in England and helping the hearing voices movement globally,it was decided to found the Hearing Voices Information Resource Pack Fund. This would fund the purchase and distribution of a selection of key books, CD’s and DVD’s about voice hearing from a variety of perspectives to interested individuals,groups and networks globally. Since 2011 more than 190 Hearing Voices Information Resource Packs have been distributed throughout the world. Knowledge is power. What I mean by this is that by disseminating accessible resources that show ways of understanding and coping with distressing voices one empowers people who hear voices to undertake their own recovery journey.

Similarly since 2005 I have helped the hearing voices movement in Australia by funding the production of newsletters for voice hearers, by sending relevant printed material and by providing occasional donations in support of the development of peer support groups. The World Hearing Voices Congress was successfully held last November 2013 in Melbourne, Australia and I pledged an annual four-figure donation for the next three years to support the further development of the Hearing Voices Network in Australia. I am in contact with Joe Calleja in Western Australia, who is the chief executive of Richmond Fellowship, the organisation that auspices the Hearing Voices Network in Australia. My purpose is to provide encouragement to leaders of progressive mental health services in their goal of enabling people who hear voices to improve the quality of their lives. Joe kindly visited me in Pembrokeshire in West Wales with two colleagues from the Hearing Voices Network Western Australia two years ago and in doing so reciprocated my support.

The World Hearing Voices Congress was successfully held in Cardiff, the capital of Wales, 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 twenty seven years by the Hearing Voices Movement have much relevance to mental health services across the world. Furthermorer, 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.

In conclusion, to summarize the words of Margaret Mead, one should not underestimate the ability of a few caring, determined and thoughtful people to bring about change.

 Hywel Davies (18/1/14)

Chairman: Hearing Voices Network Cymru

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