Podcast Episode: Effective user involvement
What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.
PB - Peter Beresford
PB Hello it’s good to be here today. My focus today is on effective user involvement to improve practice, support and services.
I bring three affiliations to this discussion, first working as an academic researcher in a university, second, having long term experience of using statutory mental health services and third being actively involved in service user organisations and movements as an activist and service user researcher. The Centre for Citizen Participation which I direct at Brunel University is one of the University’s established research centres and participation is both central to the process and focus of our activities.
I am also proud to be Chair of Shaping Our Lives. Shaping Our Lives is an national (England, Wales and Northern Ireland) independent, democratically constituted user controlled organisation and network with a focus on developing user involvement in health and social care and improving quality in services and support. We are now a formal strategic partner for user involvement of the Department of Health. We are made up of and work across a wide range of adult service users as well as with young people looked after in state care and we undertake research, development and consultation work. Through Shaping Our Lives I have an involvement in government policy, practice and other bodies at a national level which also helps in gaining an understanding of what helps user involvement to work and what barriers it can face.
There has been a strong and growing interest in ‘user involvement’ in health and social care policy and planning since the 1980s.
The term ‘reinventing the wheel’ is frequently used in field of participation and user involvement. This seems to reflect the problems it has learning from past experience. In one sense, of course, ideas of participation, have a history stretching back many centuries to the democratic ideals of ancient Athens. But even understood in much narrower terms, they can be traced to initiatives for public participation going back 40 years or so. Yet so far, in some senses, there seems to be relatively little to show for this. A few years back a study highlighted that little if any effort seemed to be made even to evaluate the impact of participatory initiatives in the fields of health and social care. Generally speaking we have little systematic knowledge about what the gains and achievements of participation may actually be. But as people are now saying and starting to try to find out, it is crucial to know what impact or effect user involvement actually has. How can it be helpful? Can it be unhelpful?
The frequent failure in research to draw on and synthesise experience of user involvement in policy and practice has other important implications. A further issue arises if user involvement is seen as central to the research and policy process. If we accept the current (official) view that change in practice and policy should be based on both evidence and the involvement of service users, then any efforts to see research as a route to making such change, needs to be coupled with some understanding of user involvement in the policy and practice process. Thus user involvement in research needs to be linked with user involvement in policy and practice development. It is important to be familiar with the issues both raise.
There are two key sources of ‘evidence’ or knowledge which have historically tended to be marginalised in health and social care and indeed in public policy more generally. These are the knowledge of:
practitioners - whose work is mainly face to face with service users; and
service users - that is to say people who are on the receiving end or eligible to receive health and social care service..
Both represent important perspectives and are increasingly recognised as such. Both are at high risk of being overlooked, devalued and ignored. While my discussion focuses on the contribution of service users, this should not be taken to signify any devaluing of the contribution that service workers or indeed informal and unpaid carers and their experience have to offer. Practitioner and service user involvement should both be seen as central.
Models of involvement
User involvement is a complex and contentious idea. Certainly there is little agreement about it. While historically, typologies of participation tended to highlight the extent of involvement - most notably with Arnstein’s ‘ladder of participation’, the key distinction that now tends to be drawn relates to the ideological underpinnings of different approaches to participation. There are currently at least two key different approaches to or models of participation or user involvement. These may be described as:
The managerialist/consumerist approach, whose focus is the service system and whose concern is to get public, patient and service user input to inform services and provision. This is the predominant model of user involvement in health and social care and has underpinned both state and service system discussions and developments in user involvement
The democratic approach, whose concern is much more clearly with people’s lives and improving their lives; where people as patients, public and service users highlight the need to have more say over the services they use to get the best out of them and to have more say and control over their lives in general. This approach to user involvement has been developed by service users and their organisations. While it has been influential among them and has contributed to change, it nonetheless tends to represent a counter viewpoint rather than the dominant one which is based on a managerialist/consumerist approach.
Each of these approaches is concerned with and promises different things. The managerialist/consumerist approach emphasises its technicist nature, and is presented as a neutral means of information gathering. There is no suggestion of any redistribution of power to service users, but this goal lies at the heart of the democratic approach to involvement which is concerned with increasing the effective say and control of service users. Individuals and organisations need be clear about these distinctions when they are making decisions about the kind of user involvement that they want to offer or that they wish to engage with. Problems frequently arise from the failure to do so. I think that’s why there’s a lot of talk about box ticking and tokenism.
Principles for effective involvement
Like all big ideas, use involvement can readily be subverted. To retain its meaning, user involvement must be recognised as something much more fundamental than the administration of satisfaction surveys, getting people to go to meetings and getting them caught up in the internal workings of the service world. There is no one right way to ‘do’ user involvement. There is no magic approach which ensures success. There is now, however, an enormous amount of experience to help people get it right, and to get it right as helpfully and cost-effectively as possible. This knowledge and experience has been gained by the hard work of many service users and service user organisations and by supportive workers, researchers and others. Not only is there valuable experience to draw on from social care and health but also across public policy and community action more generally.
There is a strong view among service users and their organisations that user involvement must connect with and have meaning in people’s lives - both in terms of process and outcomes. In the context of health and social care services, for service users and supportive workers, user involvement tends ultimately to be about improving the treatment, support and service each person gets, so it comes as close as possible to matching what they, with knowledge of what might be possible, might want. Thus user involvement must make a discernible difference in each person’s life and experience of service. The acid test of user involvement is that it leads to positive improvements in peoples' lives and the support and treatment they receive, both individually and generally. That is invariably why people get involved. To make a difference. This is what they constantly have said.
A number of principles for effective and ethical involvement have emerged from existing experience in a wide range of areas. While these do not necessarily offer solutions, there are very few initiatives which have not been informed by or taken notice of the concerns and experience which underpin them, which have been effective.
Support for people to get together
In the fields of health and social care, the importance of supporting the development of service users' own independent groups and organisations was highlighted first and most effectively by the disabled people’s movement. While initiatives for involvement are often directed at the individual, support for self-organisation - that is for people to be able to get together on their own terms and under their own control is crucial. The disabled people’s movement emphasised the importance of such collective action as a basis for both personal and political empowerment. By supporting sustained opportunities for people in similar situations to get together, it becomes possible to develop an infrastructure for and strategic approach to user involvement.
Coming together in this way, people are able to gain information, gain confidence and skills, develop ideas - bounce them off each other and exert more influence. There must be more support for self-help, support and user groups. These can also provide opportunities for feeding in comments, ideas and proposals for improving policy and provision. Being able to get together, for those who want to, provides essential opportunities to develop collective user involvement to complement the views of patients and service users gained as individuals. It also offers a helpful route for accessing and including non-affiliated service users, since service user organisations have a particular capacity to encourage involvement through the trust and shared experience that they have. This is a key way to exert power and to achieve change in ourselves and in the worlds we live in.
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