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Improving Understanding of Service User Involvement and Identity

Listening to and respecting service users’ voices and perspectives is increasingly known to be an essential part of developing quality health and social care services. Shaping Our Lives has pioneered service user involvement in all aspects of policy, planning and delivery of services.

We want to look carefully at the impact on service users of becoming service user representatives.

When done properly, user involvement can have a positive impact on power relations between professionals and service users, disrupting traditional assumptions such as that ‘professionals know best, they are the experts, they have the answers’.

Indeed, we are pleased many disabled people nowadays have experience of being asked, as ‘service user experts’, for their views and are regularly called upon to take part in consultation exercises.


Within these, what service users have to say is valued and taken seriously. Yet locally, nationally and internationally we are finding evidence of a paradox in that back in the context of day-to-day experience as service users, a service-users status or identity as ‘expert’ is forgotten and less respectful power relations resume. A situation re-emerges in which, within encounters with professionals, service-users are reminded that to be identified as disabled often means to be regarded as ‘less competent’ or ‘dependent upon professional help’. What is experienced here is role conflict and role ambiguity which can leave service users confused over status and concerned about having been used or exploited.


We want to interview disabled people who have service user representative roles in order to develop practical guidance for disabled people taking on such roles and for professionals seeking to maximise respectful inclusion of service users. 

The project will have 4 regional sites for the research:

  • North England,

  • Essex,

  • London 

  • South West


The project will generate new focus on the importance of service user involvement for disabled people, in contrast with a focus which is usually on the advantages of service user involvement for services or professionals. Separate Good Practice Guidance for disabled people, and for services or professionals, will be produced for the SOL website. In addition we will make available a full research report.


If you are interested in this project and would like to take part in an interview or would like to find out more please e mail