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Despite the growing emphasis on involving the people who use services in their planning and delivery, service users themselves have some very mixed feelings about the way this emphasis is developing. Users' involvement in health and social care isn't necessarily a positive. There have been some real achievements, but there is also a broader picture of users being ignored, tokenised and devalued. Yet service users should be at the heart of the issue, and it's time to get the focus of user involvement back on them.Here, members of the national, independent, user-controlled organisation Shaping Our Lives look at four different aspects of user involvement: service planning, training, service provision, and research and evaluation.   

User involvement in social work training
by June Sadd, manager of the Wiltshire and Swindon Users' Network

Some social work training programmes have involved service users effectively for several years and I speak from the experience of working with two programmes in the South West: Bath University and Wiltshire College Trowbridge. Recently, other academic institutions have contacted us to find out how to develop user involvement in their new programmes, and the disparity in the quantity and quality of user involvement in different programmes has been highlighted.

Good practice requires resources and opportunities for real user involvement to influence training. The Wiltshire and Swindon Users' Network is responsible for arranging and supporting user involvement in the courses at Bath and Trowbridge, and is one of the partner agencies at programme management level.

Service users attend management groups, and also attend sub-groups which are responsible for developing assessment, curriculum, placements, quality assurance, and equal opportunities for social work courses. The intensity and pace of user involvement has accelerated as colleges prepare for the new social work degree.

Service users are also involved in interviewing applicants, lecturing, and validation processes. They receive a fee of £5 an hour for their participation, except when they deliver training, when they are paid the external lecturers' rate. Good practice dictates that service users quickly move away from "doing a slot" on a module designed by the academics, to designing their own training programme.

The Wiltshire network also offers practice placements. While in the past the arrangements have accepted non-social work trained staff in the practice teacher role - providing they are trained and competent in assessing practice - there is concern that in the future the qualification requirements for the assessing role will prevent this. What capacity will there be for the additional practice teaching commitment which will be required? It can already be a struggle to find enough suitable placements. Also, placements within user-controlled organisations are extremely valuable for learning, particularly with regard to value base and attitude. These unique opportunities to develop practice by approaching dilemmas around risks, rights and responsibilities, and choice and control, from a user perspective must not be lost.

The developments in social work education are generally considered to be positive. Service users are reassured that social work training is not becoming too theoretical, as there will be increased opportunity for practice development on placement. We welcome the increased contact that students will have with service users as we feel that this is where the best learning takes place.

User involvement and people with learning difficulties
by Vanessa Williams and Jennifer Taylor, who carry out research and give training and advice. They work for Shaping Our Lives and People First. Both women have learning difficulties. Support by Vic Forrest

"The white paper [Valuing People] has made some difference for some people with learning difficulties but not everyone," says Williams. "Some people can get flats and some people can't. It's not right for us to be shoved into day centres because social services say we have to go somewhere in the daytime. They say we learn to be more independent but we want to have more control over our own lives and (in the day centres) staff are having control over your life.

"I had an assessment last Thursday," Taylor says. "The social worker rang me up and said 'I'm coming round to see you'. I've never met her before. She asked me questions about what I can do and what I can't do. She wrote about my past; about my family, my grandmother, my two sons, everything and I was quite shocked. It's bringing up all the bad memories. She was too nosy. It makes you feel small. She stopped me moving into flats for people with learning difficulties. She said I don't need the support, but I do really. I am going to fight to get into the flat.

Williams says: "Jennifer does need support. It should be the service users saying how much help they need and what they don't need and not the social workers because the service users know what is best for them."

"It's your life at the end of the day," Taylor adds. "This is why we need to stand up and speak out about what you want and what you don't want in your life.

"Some people with learning difficulties don't have a say over what they do in the daytime and night," Williams argues. "It is always carers who make decisions. They [some people with learning difficulties] haven't got the willpower and confidence to say what they want to do. I am stronger than they areÉ It's not always easy to fight back against staff because they don't agree with me sometimes and it feels like they have got the power to say what you can and can't do. It's much easier since the white paper for me to have control.

"The government is more powerful than social services. We could go above social services, to complain about them. That's what they are frightened of. I've got the power because I've got people to support me to make decisions and get advice. My way of having power is that I stick to things and if I don't want to do something, I say I won't do it, and I don't do it."

User involvement inservice planning
By Anna Sartori, a member of the management board of Surrey Users' Network

User involvement in service planning highlights both problems and possibilities. In the Surrey Users' Network, our experience has been that user involvement is a requirement which is often seen as a nuisance. This is a hangover from the past, when there was frequently a confrontational attitude between service users and providers.

This attitude still persists - one recent joint planning meeting hovered on the brink of disaster as two health service managers proclaimed: "This meeting is a waste of time. In the NHS we have to work within our parameters, so dealing with you people is irrelevant. We had to come here because we were instructed to do so, but it cannot affect our way of working." Luckily, one neutral observer pointed out that what was now government guidance regarding user involvement would almost certainly become enshrined in statute. The open debate that followed was both entertaining and useful.

Yet other approaches to user involvement are being developed with the co-operation of health and community care planners. For instance, in the case of large planning meetings, using workshop groups to discuss specific issues has proved successful.

Where participants have been willing to openly state their concerns about past problems and have discussed solutions used elsewhere, there has been good progress. Health and social care staff have found things out from each other and from service users for the first time and discovered that, despite gulfs in background and experience, everyone has something useful to contribute and that positive outcomes are achievable.

By Munir Lalani, a member of Asian mental health service user group Awaaz

The group's name means "inner voice" in Urdu. It provides advocacy services and drop-in facilities within Manchester and Salford. This is important because, while our white counterparts can argue that the system is bad, the ethnic minority perspective is that there is little or no service provision and things are getting worse.

Awaaz gets invited to sit on several planning groups within the wider health and social care structure. Unfortunately, user involvement within the South Asian community in the UK as a whole is in its infancy due to the lack of active service users.

One of the biggest problems for any survivor group is the issue of taking a payment. Unless this government has an overall strategy for paying service users, the skills of many service users who have a lot to contribute will be lost. Service providers must stop making the age-old excuse, "We can't pay you because it might affect your benefit". The other side of the coin is the "sandwich brigade" who will talk to any provider as long as they get a cup of tea and a sandwich. Surely someone can come up with a middle ground?

User involvement in research
By Peter Beresford, chairperson of Shaping Our Lives and professor of social policy at Brunel University

Both statutory and non-statutory funders are increasingly requiring evidence of user involvement in bids for grants. Service users are becoming involved in a growing range of research activities; peer reviewing grant applications, being invited to join research project steering and advisory groups, and identifying our own priorities for research.

The Social Care Institute for Excellence, charged with developing the knowledge base for social care, is chaired by Jane Campbell, a disabled service user. It emphasises the value of "user knowledge" and is committed to user involvement in its own workings. Involve (formerly Consumers in NHS Research), established by NHS Research and Development, includes service users on equal terms in its management group and has strategic responsibility for taking forward public and user involvement in health, public health and social care research.

Meanwhile, the Sainsbury Centre for Mental Health, service user research enterprises at the Institute of Psychiatry and the Centre for Disability Studies at Leeds University, have all taken user involvement forward with large ground-breaking research projects. Strategies for Living at the Mental Health Foundation has also supported innovative local user-controlled research projects, providing training and support for user researchers.

But the overall picture is an ambiguous one. There are widespread concerns among service users that much "user involvement" is tokenistic and just a "tick box" exercise. Only the tiniest proportion of research funding so far goes to research which service users initiate and control. Randomized control trials are still seen as the research gold standard and qualitative research as inferior. There are fears that new proposals for a "research governance framework" for social care will restrict rather than enhance user involvement. Most of the research that users are involved in is still shaped by other people's research interests, research questions and research methods and values.

The truth is that user involvement can't be seen as just another add-on to research. It has much more fundamental implications. User involvement and user controlled research represent a fundamental challenge to traditional research values of "neutrality", "objectivity" and "distance". Two things are crucial. Traditional research and researchers have got to face up to these challenges and there has to be a significant shift in the allocation of research funding to enable user researchers to take forward their work on more equal terms.

Peter Beresford is chairperson of Shaping Our Lives and professor of social policy at Brunel University.

Background Reading

1 Peter Beresford, It's Our Lives: A short theory of knowledge, distance and experience, London, Citizen Press in association with Shaping Our Lives, 2003, Available from Shaping Our Lives, Unit 57, Eurolink centre, 49 Effra Rd, Brixton, London, SW2 1BZ, e-mail: Information@shapingourlives.org.uk price £8.75 including postage