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The Discovering Autonomy Conference – London 21st July 2005

“Leave the word 'impossible' in the dictionary”

An Intriguing Report on National Voices Forum's one day conference held in The Resource Centre, Holloway Road, LONDON

More than sixty members of National Voices Forum from all over the United Kingdom gathered in Central London for the one day Discovering Autonomy conference. At the plenary session, they heard speakers Rachel Perkins, Chris Barchard and Jan Wallcraft and participated in seven workshops which offered topics based around achieving service users' autonomy and empowerment.. Delegates could chose from workshop themes such as self-management, creativity, ethnicity, strategies for living and complementary therapies. The conference was chaired by National Voices Forums' Vice Chair Clare Crestani who carried out her role with a great deal of style and humour. Some delegates were of the opinion that because of the recent terrorist incident in London, a number of people had been put off attending the conference so delegates were not as numerous as expected. Indeed the day was overshadowed by more terrorist incidents in Central London and although the conference continued unhindered, many delegates found they had a difficult journey getting home because of the disruption to transport. However, every one who took part agreed that it was an entertaining, informative and worthwhile day and their thanks went to Amy Ford and Rachel Brett of National Voices Forum for organising and managing a really successful event. Many expressed the hope that in future National Voices Forum can organise a conference to run for more than one day.

Delegates felt that the conference had promoted friendship, self-help and autonomy and the realisation that everyone had something to offer: Empowerment and recovery could be within everyone's reach: leave the word “impossible” in the dictionary!

Discovering Autonomy – Plenary Session

1. Rachel Perkins, Clinical Director and Consultant Clinical Psychologist of South West London and St George's Mental Health Trust:

“Living Life to the Full – A Personal Recovery Journey”.

Rachel opened by talking about her background in terms of career and experience as a service user (Rachel is diagnosed with manic depression). In her career as head of a mental health trust she is also her psychiatrist's boss. She talked of the paradox whereby she can have a successful career as head of a trust but how because of her mental health she cannot sit on a jury and gets asked awkward questions about mental health when entering the United States with the green form. She discussed how the media represent mental health service users in terms of stereotypes: they are either “poor unfortunates” who can't help themselves or “mad axe murderers” that the public need to be protected from. She said that often worse than the illness itself is the prejudice, ignorance and fear that attends public opinion of mental health service users: this is almost more disabling than the symptoms. Unlike a criminal record that can be spent – your mental illness always follows your record around and always creates stigma when applying for jobs, when seeking health treatment and when dealing with authorities such as the police. People are dismissive of mental health service users and there is subtle discrimination, prejudice and exclusion. No matter what service users achieve they are always judged by their illness.

Recovery is possible and service users can achieve a meaningful, valued and satisfying life – although recovery is not about “cure”. Service users are the experts on mental health and they should be the people shaping treatment and research. Rachel referred to famous historic figures such as Winston Churchill, Einstein, Babbage, and Ravel who all had mental health problems and although in her personal experience her problems do not go away, she is fortunate in being able to manage them. Service users must have hope and opportunity – these are important to rebuilding life after mental illness. When being treated for her illness, Rachel was advised to retire from work: however she persevered and went on to achieving the publication of three books, the writing of numerous articles and gaining three job promotions. However for many service users is it difficult to sustain hope without opportunity and support. Being able to participate and contribute in society is a key element to recovery : for many service users their mental illness presents a challenge but this is not in surmountable. There are images of possibility and service users should have a decent future as - they all have valuable things to contribute to society. Rachel concluded by saying that together we can all cure prejudice, ignorance and fear and she told her audience: “Keep chasing your dreams”.

2. Chris Barchard, Chair of National Voices Forum:

“Is there a limit to Empowerment?”.

Chris said that returning to being how you once were before your mental illness is achieving recovery – but access to opportunity is difficult as stigma and discrimination is deep. Service users are used to facing the dilemma of taking drugs which disempower because of side effects in order to alleviate the symptoms of mental illness. Psychiatry and treatment are disempowering – it feels like swimming in glue. Empowerment is re-empowerment.

Chris went on to define 5 elements of empowerment: material, medical, social, work and personal self worth. Empowerment means having choice and recreating your sense of self worth. In terms of treatment for mental illness the service user should work in equal partnership with the psychiatrist and not be disabled by medication. New medications make for more possibilities to lead a full life however standards of life in terms of the service user's accommodation and benefits should also be improved. Social empowerment and empowerment through work and personal self worth are more difficult to achieve because of stigma and discrimination – the service user is constantly trying to reach beyond the mental health system and into the mainstream of society.

Although the government means well by their policy and programme of social inclusion there are misgiving and difficulties about this push to change stigma. Also on the one hand the government aims to change stigma but on the other creates it by the proposed new Mental Health Act. Social inclusion can also mean pushing vulnerable people into work in order to save on the incapacity benefit expenditure – this is a harmful exercise in social control. Work may be a good idea but it is not for everyone. It was not empowering to be pushed into work and be threatened with loss of social security benefits – the government should offer support in helping people who want to return to work rather than coercing them into doing so.

Although Chris did not advise service users to abandon taking their medication without talking to their doctor, he pointed out that some people affected by mental illness benefited for alternative treatments such as herbal remedies and other therapies – these worked well for some. There also beneficial therapies offered by music, massage, art, social relationships and also talking therapies – although talking therapies were sometimes difficult and painful. However such therapies outside standard medications help people to take control of their lives. Service users could decide on their own treatment and take control.

Empowerment does not come through accessing conventional mental health services but with how far service users can get away from them. Medical professional can disempower patients and they should believe more in who they are treating.

Although the mental asylums are now closed the majority of society had still to include mental health patients. Treatment is more than just taking drugs – it is social as well as medical. There are still social obstacles to empowerment. However ultimately empowerment is a very individual thing: grasp for it and use it your way.

3. Jan Wallcraft, Fellow, Experts by Experience, London Development Centre, NIMHE.

“From Surviving to Thriving”.

Rather than recovery from mental illness there is also recovery from stigma, trauma, abuse and crushed dreams. It is important for service users to share their stories and experiences with each other both in hospital and outside hospital in order to gain strength from shared experience. Jan questioned the caused of mental illness: 80% of cases were related to some form of trauma, although some mental illnesses come out of the blue and are not related to trauma and abuse. Some treatments such as ECT can make patients worse.

Telling their story is therapeutic for service users and narrative research where stories are collected is important although at present there is very little of this type of research in mental health. Everybody's story of breakdown is different. Can telling your story help with recovery? It does have a liberating effect as by sharing stories of trauma service users find that they are not alone. Relating stories can have a powerful healing effect and also help society to understand mental trauma and break down the taboos, fears and anxieties surrounding mental illness.

Jan went on to ask whether mental health services promote or hinder recovery. Recovery means taking control and self responsibility and services should support service users' own coping strategies rather than make them dependant on psychiatry and drug treatment. Psychiatry is only a small part of people's lives. Service users should go beyond being survivors and go on to being healed and thriving. “Survivor” is not the only badge. Put an end to your bad times: put them behind you and thrive as a free creature.

The full content of Chris Barchard's talk 'Is there a limit to Empowerment' from the day is Chris Barchard's page.