Diana Rose has a "double identity". She is part of a growing band of mental-health patients, or service users, who are bringing their personal experience to bear on research.
Her involvement, and that of others like her, has just won the research programme at the South London and Maudsley National Health Service Trust (SLaM) an excellent rating from the Commission for Health Improvement. Praised throughout the CHI report is the trust's joint work with the Institute of Psychiatry, part of King's College London, and the involvement of service users.
"It is enormously difficult to come out and say that you have mental-health problems, possibly harder than saying you have HIV," Dr Rose said. "When people disagree with you, it becomes the easiest thing in the world for them to say that you are mad."
SLaM is only the second trust in the country to receive the top rating for research, and the first mental health trust to do so. The CHI, an independent body set up by the government to monitor and improve clinical care across England and Wales, is conducting its first round of reviews.
It describes the service user research enterprise (Sure) and its consumer research advisory group (Crag), joint initiatives between SLaM and the institute, as "excellent examples of how service users may be integrated into research and the research process in a structured and equitable way".
Dr Rose is coordinator of Sure and a senior research fellow. "Our aim is to bring the experience of users into the research process. Sure provides training for service users, clinicians and academics in how to collaborate throughout the research process," she said.
Sure has just completed a large study of user views on the use of electro-convulsive therapy. The results are yet to be peer-reviewed and published, but they challenge clinicians' views on the nature of memory loss and ECT.
Dr Rose has had ECT herself and believes that it is vital to canvass the views of other users. "We found a huge amount of information on the web - particularly in the form of personal testimonials," she said.
Dr Rose hopes that the research will better inform clinicians and users.
"People need to be fully informed before they decide to go ahead with ECT," she said, "especially as it is regarded as a highly controversial treatment." About 30 per cent of people who sign the consent from for ECT said they were pressurised into doing so. Dr Rose said that a fifth of ECT treatments were given without the patient's consent.
"When I tell people that I have had ECT, or that it is still used fairly widely, they are often surprised - thinking it went out of use in the 1960s. But it is still used to kick-start people out of otherwise desperate situations," Dr Rose said. "No one pretends that it is a cure, but sometimes it can help."
The involvement of users in research also helps users themselves. "I had about a year off work," Dr Rose said. "But being involved in research work boosted my self-confidence enormously."
To ensure that users are fully informed in the decision-making processes of the trust and the institute, Sure has set up the advisory group - Crag. The aim of this group is to ensure that user views are represented on the joint research and development steering group of the trust and the institute. "We wanted meaningful and sustainable user input," said Graham Thornicroft, director for research and development for the trust.
There are three service users on the steering group, all people with experience of mental health and an interest in research. "Users attend the meetings and feed back information into Sure," Dr Rose said. "This steering group is a powerful one, responsible for the distribution of money. I don't know of any other trust that involves users in this way."
Dr Rose is a full member of the steering group.
The next task for the trust and the institute is to ensure that the ethnic minority community it serves is properly represented. "Black people are overrepresented in terms of treatment and tend to be very unhappy with the service provided. Crag is holding a conference in October and we very much hope that many users, from as many different backgrounds as possible, will get involved," Dr Rose said.
Professor Thornicroft said that the user focus would not be possible without the strong joint working between the trust and the institute. In the past three years, the two bodies have issued a joint statement of common purpose, set up a joint R&D directorate and appointed a joint R&D manager as well as the joint steering group. "Involving users is the way forward," Dr Rose said.
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