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When I became involved in service user issues, it seemed to me that the only consideration was to establish a stronger, more powerful voice for all service users with the providers. If we could get representative service user involvement in all aspects – policymaking, monitoring and evaluation, recruitment and selection, possibly strategy – we would be succeeding.

I didn’t expect that service users would be consulted on government policy initiatives, such as the recent green paper on adult social care or the prime minister’s strategy unit paper, Improving Life Chances for Disabled People. Even more unexpected – but welcome – has been the increasing demand for us to be involved in the education and training of social care workers and students and increasing involvement in research, both in the NHS and academic institutions.

Initially, we were thrilled to be invited into the academic world. Many of us without an academic background had our stereotypes of researchers as people who lived in ivory towers and those of us who were fortunate to have a higher education had experienced it as something remote and exclusive. Fortunately, many of our preconceptions have been far from the truth. My observations of researchers working with service users have been positive, welcoming and inclusive.

Research lends a legitimacy, a credibility, to our experiences which could be otherwise dismissed as unrepresentative or merely anecdotal to the policymakers and administrators.


We have been invited not only to tell our stories but also to contribute towards the design of research projects: in talking to other service users and in reading the published research, this inclusive approach seems widespread.

My only negative comment is this: research papers are written in academic language. For most of us, it’s about as intelligible as computer machine code. People are entitled to see the results of their contributions, so will the academics out there please make sure that their service user contributors are given accessible feedback?