Feature

Learning to say what you want

As another asylum approaches closure, Mandy Garner reports on the vital work of the MIND advocacy service

Napsbury hospital is the very image of the Victorian mental asylum. Set in the middle of the Hertfordshire countryside, the hospital is a diffuse set of buildings sprinkled around a rambling ground. It is easy to get lost, and once inside the buildings, the corridors are wide, dark and endless. People wander around the grounds like ghosts. Some of them have been there for decades. But all this is about to end.

The hospital will close in 1998. Some patients will be transferred to other hospitals and others will move into ‘the community’. One of the projects which will help this change is the MIND advocacy service.

Set up in 1995, the project aims ultimately to help mental health users to speak on their own behalf. Users may want an advocate to speak for them or may need someone to practice what they want to say to health officials. The service recognises that it can be very intimidating for users to explain clearly their needs. Users, often in a vulnerable frame of mind, are often confronted on ward rounds by a number of professionals: nurses, social workers, consultant psychiatrists and so on, often speaking ‘officialese’.

‘I feel very nervous. I feel more like the patient, but I have been on other side of fence’, says the project’s team leader Philip Reilly, who was head of a mental health rehabilitation unit in East London until he jumped ship. ‘I have done the things I now see fellow professionals doing’, he comments.

The advocacy team is very small. It consists of Philip and two other workers, but hopes to take on another staff member soon. One of the workers is research student Susan Marilainen of Middlesex University’s psychology department, who is studying what users want from advocates in order to develop guidelines for the future.

She has surveyed Napsbury patients and her preliminary findings stress the need for advocates with strong listening skills and an understanding of mental health issues. This could be through actual experience of being a user. ‘People want the feeling that there is genuine communication and that they are being taken seriously,’ she says.

The advocacy project is based in two main rooms in Napsbury. Mornings are for ward rounds, formal appointments and office work and the unit operates a drop-in service in the afternoons. ‘People can just come in for a cup of tea if they want,’ says Philip. They can get information on the project and chat to the workers.

Philip says advocacy has been around in various forms since mental health treatment began, but in its present form started in Nottingham. There advocacy is celebrating its tenth anniversary.

‘It is about trying to empower users to say what they want. In the end, services can only be provided in a way that will benefit users. Services are for users,’ states Philip. He says the work can be hard because it is impossible to please all the people all of the time and some issues come down simply to a question of available resources.

A study of the Napsbury project’s first eight months shows that there were 100 calls on the advocacy service. Sixty-nine of these were for advocacy issues, which can range from representation at tribunals to access to money for food. One of the key issues mentioned by users is medication. Patients want as much information on drugs as possible and they want to listened to if a particular medicine is giving them bad side effects. Philip talks about a sense of ‘invisibility’ which some users have, a feeling that they have no power over their own lives. This is particularly the case if a patient has been detained against their will under the Mental Health Act.

Another main concern of Napsbury patients is what will happen to them when the hospital closes. Patients are being divided into three groups: those who can adapt fairly easily to life in ‘the community’, those who need continuing hospital care and those who do not fit easily into either category. Advocacy work can help in the assessment of what happens to people when they leave. For example, advocates will speak on behalf of patients who have formed close relationships after years in Napsbury and who want to maintain those relationships after discharge.

Some users do not want to leave Napsbury and others are concerned about what they will face on the outside. ‘Patients I have spoken to are worried that the public is not educated enough about mental health issues,’ says Philip. ‘When they move to a new area they want some kind of education given to locals about mental health.’

When Napsbury closes, the advocacy project will also have to move out and into the community in Barnet and is likely to become independent from MIND. Philip says it hopes to develop a management structure with users on the board and it will respond to users’ needs as to when, where and how it works within the community.

The project, which has guaranteed funding until Napsbury closes, has just completed its first volunteer training course. Volunteers gave one day a week for seven weeks to training on listening skills, mental health legislation, the history of advocacy and other issues. Philip describes the course as highly successful. Volunteers included staff in the mental health field, ex-users and relatives of users.

Philip says he feels almost evangelical about advocacy. ‘When the London mental hospitals opened, they were thought to be enlightened. Now we are moving into a different age,’ he says. ‘Advocacy is theoretically the flavour of the year, but some professionals will be threatened by the reality of what it means in practice. Yet the demand from users for advocacy will grow and grow until we wonder how we ever existed without it’.