IntroductionNational Voices Forum, in conjunction with UK Advocacy Network, staged this user conference at the Friends Meeting House in Oxford on 30 July 2002. The overall theme was focusing on what we can do ourselves to improve our lives. We were also pleased to have some mental health workers and carers attending. It was warm and dry - which was just as well since there was a large lawn between the meeting house itself at the back and the entrance building at the front. The lawn gave a nice area for sitting and chatting or relaxing.
Alan Foulds and Gillian Mullins co-chaired. It was suggested that recovery for people with mental health problems could be taken to mean the recovery of a meaningful and fulfilling life. This in turn was tied up with regaining control over one's own life. Alan and Gillian introduced the two excellent speakers who addressed the theme.
Emma Harding
Emma Harding drew on her own experience
in talking about recovery. She had always wanted the things
everyone else did - a relationship, job and mortgage, etc. But
she had experienced a breakdown when she had left home for
university. She was living in a new town with new flatmates and
new lecturers, not to mention having to cope with adolescent
hormones. She gave several examples of how her thinking became
confused, but she couldn't get admitted to hospital unless she
told the GP that she was unwell. However, she eventually found
some medication that worked for her, and learnt to interact with
the world again. She now regarded medication as a crucial element
in her recovery and keeping well. She had tried to stop taking it
once, but it didn't work. She caught up at university having lost a year, and got a first job as a Healthcare Assistant in the Health Service, and had now gone on to being a Support Worker in Employment Service at SW London and St Georges NHS Trust, helping service-users back into work.
Emma thought Recovery was based on a number of things, but she couldn't pretend the past hadn't happened. She now has a relationship and job, although not quite a mortgage! She had been, she concluded, not so much on a "journey of recovery" as a "voyage of discovery"!
Derek Turner
Derek Turner, previously a Rethink manager, now an
independent consultant based in Wales, gave a stirring talk
challenging services to build self-confidence, not undermine it
The emphasis on recovery was started by individuals who didn't
want others to be in control, and is now seen as important by
service-users, professionals, and even the Government. Piers
Allot, a lecturer, is, indeed, working with the new National
Institute for Mental Health on shaping a national policy. But
there's a danger of redefining recovery in terms of the existing
mental health system - "Whose mental health is it anyway?"For some, recovery was seen as a process of changing, learning and growing, without necessarily being a return to how one had been before. Many things could affect our mental health: relationships with others, our background, circumstances, our moods or levels of confidence, and incidental events like conversations, sleep, something that arrives in the post, or even the weather.
Taking personal control can involve choosing the people who we find help us most, whether they are inside or outside mental health services, taking risks to pursue aims or dreams, or just building one step at a time. Opportunities should be offered and taken to develop self-awareness, self-confidence and self-acceptance and social inclusion. Ron Coleman spoke of going beyond user involvement to "taking control of services".
On the political front, the Mental Health Bill's proposal of compulsory treatment in the community was a threat to people making choices. Derek quoted from someone called Caras, who said that from the experiences of madness, she had received a wound that had changed her life. But it had enabled her to help others and to know herself. Like him, we should be proud of our struggles. "We may not have recovered, but we will overcome!"
Questions and comments to the speakers
There were questions and responses to both talks, to which Emma and Derek gave replies. Jeff suggested we should be against mental health compulsion in general - not just in the community.
Pru reminded us that people could be
detained in secure units without having been guilty of a crime.
Derek referred to this as "Subjective detention". Clare
had been disappointed to find that the excellent "Mad Pride"
website was no longer up. Unfortunately the person responsible
for it had become unwell. Someone suggested that sometimes we
needed to go beyond assertiveness to aggressiveness. But Derek
cautioned that this could be alienating. As Ron Coleman says,
"We don't want the psychiatrists to leave the room".
Jeff asked what we could do to make a difference in the current
political climate. Derek said that hopefully we wouldn't just
rely on the Independent on Sunday to do the campaigning! After lunch, we divided into six workshops, two of which were held in the garden. These were on Employment - Pros and Cons, led by Emma; Advocacy and Self-advocacy, led by Liz of UKAN; Challenging Stigma, led by Gillian of UKAN, Positive Images of Madness, led by Zyra; Self-help led by Amy Ford; and Mental Health Services - Good or Bad? led by Keith Hall.
Employment WorkshopThe workshop was designed to look at the pros and cons of employment for people who have experienced mental health problems. The questions that were to be discussed were as follows:
1. What are the barriers (both internal and external) that people face in getting back to work?
2. Disclosure - the who? where? when? why? and what? of spilling the beans
3. The Disability Discrimination Act 1995 - what are our rights?
4. Employment and the benefits trap - who gets caught?
5. Well-being - how is this affected by work?
As well as what are peoples' own experiences of...
1. Illness or stress at work?
2. Other people's reactions?
3. Coping strategies?
4. Discrimination?
5. Positive events / outcomes?
The discussion centred largely around the benefits trap and the various changes in disability benefits such as 'therapeutic earnings'. There was some excellent advice shared by the group itself. The seminar group was largely in favour of employment, but it was suggested that employment decisions should be down to the individual themselves; especially around finding the right (understanding) employer, etc.
There was a discussion about disclosure and people talked about personal experiences, such as while working for the civil service. The group was concerned that people should be able to access jobs that would enable them to further themselves, and not have to rely on entry level jobs (such as being a street sweeper) forever.
People shared their own experiences, such as that of Sainsbury's being a good employer, and others felt it was important to mention that mental health professionals were often uninitiated in the realm of employment.
The group discussed the Disability Discrimination act (1995), which obliges employers to make reasonable accommodations to jobs to make them accessible to people with both physical and mental health problems.
Finally, comments were made about self employment, and how it can overcome difficulties such as prejudice from employers, but it was acknowledged that self employment can be stressful in other ways.
Workshop notes by Emma Harding
The day finished with a lively general discussion, chaired by Alan and then Clare Crestani, focusing in particular on the importance or otherwise of work.
Background to the day
The conference was organised by National Voices Forum and UK Advocacy Network, supported by a grant from the Sainsbury Centre, raised by Terry Simpson. Voices Forum would like to give special thanks to Liz Skelton and Patrick Wood of UKAN for their expert work preparing for the conference, and to Liz, Gillian Mullins and Maria Trainer of UKAN for their non-stop work on the day, along with Clare Crestani. Amy Ford and Graham were involved in organising from the Forum, which formulated the initial idea of the conference at one of its members' meetings. Liz Skelton produced the conference packs and Chris Barchard and Amy Ford the leaflet.
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020 8547 9226