Someone who really understands
People who've suffered from mental illness are co-ordinating their efforts to help others in the same position. Hester Lacey reports
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Your support makes all the difference.There is a huge stigma surrounding mental illness, and Tracey found it more difficult admitting to her mental health problems than coming out as a lesbian. "People don't know how to accept it," she says. "They have a certain idea in their heads about people with mental health problems. There is a lot of very bad press around the subject; as soon as people hear it they think 'schizophrenic'. Or they think they'll be stuck hearing about your problems all the time." When she went for treatment in hospital, she felt isolated and powerless in meetings with the staff who were caring for her. "You can feel as if you're not being heard," she recalls.
What helped Tracey was the support of someone she knew was on her side. "It makes a huge difference having someone else there for you, you don't feel ganged up on by all the professionals, and it can feel like that's what's happening. Just having someone else in the room made a difference. I was encouraged and it gave me a voice and some confidence. When I first went to the meetings I felt I couldn't say anything, but having someone there made me feel I could go in with guns blazing."
This is why Tracey has now trained as a voluntary mental health advocate - a partner to offer long-term help and support to someone in a similar situation to the one she was in herself. She is one of the first advocates to be trained in a new scheme that is being set up by the Project for Advice, Counselling and Education (Pace), based in north London, which provides a variety of health, training and counselling services to lesbians and gay men.
Advocacy has its roots in Holland and the US, where it first appeared around 20 years ago. The idea is to help those who may find it difficult to speak up for themselves to find a voice. It is gradually becoming more widespread in Britain; there are various schemes aimed at specific groups such as the elderly, young people in care, people with learning difficulties or, like Pace's new programme, those with mental health problems. Mental health advocates are not counsellors, social workers, healthcare or social service professionals; their role is to help mental health service users make informed choices and get services they need.
Pace's services are aimed at a particular group with specific needs, but other programmes have a wider remit. Terry Simpson is co-ordinator of the UK Advocacy Network (Ukan), an umbrella organisation which provides training and support to mental health advocacy groups nationwide. He has worked as a mental health advocate for four years. He believes that mental health advocates are an essential service, but currently the system is patchy and short of funds - although the Community Care Act recommends the provision of advocates. "The advocate's job is unique in the mental health system because it is non- judgmental and there just to support the patient," he says. Some local authorities provide money for a mental health advocacy service; some use volunteers or help from charities; others have nothing at all.
Being a mental health patient can be very isolating, says Terry Simpson. "People feel as though they are the only person who has been through it, and in a large percentage of cases there is a conflict between what people think they need and what doctors want for them. The job of the advocate is to break through that isolation and be supportive." Ukan would like to see central government funding at a national level.
Pace advocates will act as their partner's ally, explains Julienne Dickey, the organisation's manager. "There will be a contract between them of what is expected," she says. "We already provide counselling, but we realised that often people who come to counselling really wanted more support in their lives than counselling can offer - ongoing support is crucial."
Often, she says, partners or parents support patients who run into difficulties during treatment, but for Pace's lesbian and gay clients that may not be possible; partners are not recognised by law as next of kin and parents may not even be aware that their child is gay. And a recent survey carried out by Pace found evidence of discrimination against lesbians and gay men not only from other mental health service patients but from some staff as well.
It is vital, says Roz Thomas, Pace's advocacy co-ordinator, for advocates to have first-hand experience of the mental health system. "A lot of people have experienced healthcare professionals in quite a negative light and they want and need someone who can empathise."
The major funding for the Pace programme comes from a Lottery grant and the group is seeking other grants to keep the scheme going and train more advocates; they are hoping to base advocates in major London hospitals in the near future. "People think that using volunteers is free, and they do give generously of their time, but they need support and training," points out Julienne Dickey. It is, she says, a two-way process; advocates gain too, in fresh skills and training.
Advocacy, adds Terry Simpson from Ukan, is a very rewarding role. Tracey at Pace would agree. "It helps your self-esteem to know you can do something to help other people get help and put something back in for those who have helped you," she says.
Pace Advocacy Service, tel: 0171 697 0017
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