A new report is claiming success with its methodology of using mental health service users as interviewers as well as interviewees. Claire Laurent reports

In the wake of the NHS plan, involving patients in planning and delivering care is a priority.

In mental health, this offers particular challenges.

Traditionally, mental health service users have not been asked for their views about their care, treatment or how services might be delivered.

But Users' Voices, a report published by the Sainsbury Centre for Mental Health, brings a refreshing perspective to how service users feel. It summarises four years of findings from an innovative research methodology - user-focused monitoring - developed by Dr Diana Rose, a senior researcher at the centre and a service user for 30 years diagnosed with manic depression.

The methodology breaks new ground in employing service users to devise questions and carry out interviews.

Dr Rose says: 'Not only is the process empowering for the user-interviewers but, crucially, you get different questions - about things that really matter to users.

'For example, we asked about dignity and respect in the giving of medication, not just about how people could be persuaded or forced to take it.'

She says that once service users knew their interviewer had also been 'in the system' they were more relaxed and more open.

Sadie Joste is such an interviewer and says being involved was 'wonderful'. She feels her own experience meant she understood users' responses more quickly than 'an ordinary interviewer'.

Cliff Prior, chief executive of the National Schizophrenia Fellowship, welcomes the report.

'People with first-hand experience of mental illness are able to ask more specific and detailed questions about their care and treatment, ' he says.

Research was carried out in seven sites and involved more than 500 users, taking in inner city London and rural areas and including a health authority, a social services department and a voluntary agency.

The report recommends that users should be involved in training all psychiatric and social care professionals and the police.

'At the moment this is ad hoc and depends on goodwill, ' says Dr Rose. 'We want to make it mainstream. I would really like to see the psychiatric training bodies taking it on. I think they take a lot of persuading because they do not see it as an equally valid perspective. . . It is important for them to know what It is like to receive this treatment.'

The report calls for a shift from focusing on clients' problems to looking at their strengths, with care developed in line with users' definition of their needs. It warns that inpatient units should not be allowed to deteriorate and calls for clients to be given full information on the benefits and side-effects of psychotropic medication.

Around 50 per cent of users said they were not getting enough information about services.

Users did not understand the care programme approach: in six out of seven sites they did not know they had a care plan or who their key workers were.

Users very often wanted 'someone to talk to about ordinary things'.

More than half reported distressing side-effects from medication, and a third said they felt over-medicated.

Black service users were more likely to receive medication by injection than white users, particularly if they were male.

User involvement should be about empowerment, not compliance, and purchasers and providers should 'facilitate but not control' user involvement, says the report.

'I am expected to have service users trapped under my desk' Having a Say is a year-long project in Oxfordshire seeking ways for people with mental health problems and their carers to be involved in developing and planning local services. Project worker Yvonne Castellano, in post since September 2000, says: 'I haven't got to the point of involving service users, although within six weeks of being in post I had people phoning and asking me to bring a couple of service users along to a meeting - as if I had them trapped under my desk.

'I discovered very quickly that because of the long-standing difficulties they (users) have had communicating their views, they actually had very little faith in Having a Say.

'There are extreme feelings of anxiety on the side of staff and users. 'Ms Castellano is developing good-practice guidelines for involving users and trying to push other ways of involvement because she says meetings can be quite disabling for users.

A question of attitude: 'I think the trust was very nervous' Dr Sally Hargreaves is director of performance and partnerships at Kensington & Chelsea and Westminster health authority, where user-focused monitoring has been in place for mental health users for four years. 'It is a hell of a lot of work, but on the other hand It is the only meaningful quality monitoring that I am aware of.

'We learn the things that are important to users and how well we perform on them. It is not about extra resources, It is usually attitudinal stuff. I think the trust was very nervous about it - professionals in particular - and it caused ripples in the first year. . . but now It is part and parcel of what we do.'