By Alison Dunkley, Mandy Clarkson and Freya Tyrer

The STOP Diabetes study is a population-based study of diabetes among adults with learning disabilities led by Professor Kamlesh Khunti at the Diabetes Research Unit, University of Leicester. The study involves a Leicestershire-wide screening programme and an educational programme for those adults identified as having impaired glucose regulation or at high risk of developing type 2 diabetes. The study is funded by a National Institute for Health Research (NIHR) Programme Grant.

When planning the study, the research team knew the importance and value of involving services users, but we wanted this involvement to be meaningful and to benefit the service users themselves.

Initially, the study was publicised and discussed at local partnership boards, locality groups, and self-advocacy groups. Two local self-advocacy groups expressed an interest in helping us to plan our research. Such groups are a wonderful resource for finding volunteers because they comprise adults who want to express their views and take control of their lives. The service users often want to be more than just a participant in the research process.

The self-advocacy group at Coalville Resource Centre chose the STOP Diabetes acronym and logo and the Speaking up for Health group suggested fridge magnets for advertising the logo. David, from the latter group, took photographs of Tracy (a fellow service user) and himself for the accessible information sheet, flash cards and story cards. Through the research nurse’s own contacts we were able to rehearse the clinics, make appropriate changes and organise them in the most efficient way possible.

Probably the team’s most innovative idea for involving service users came when we interviewed for research nurses for the study. Research nurses play a crucial role in the study and are responsible for assessing capacity, communicating the study, conducting the health checks and taking blood. At interview and supported by Sue Lyons, a speech and language therapist at Leicestershire Partnership NHS Trust (LPT), Tracy and David asked the applicants two questions they had devised and afterwards rated the applicant’s response on a scoring card of between 1 and 4 to feed back to the interview panel.

The involvement has not been without challenges. Because the study involves screening an entire population of adults with learning disabilities in Leicestershire, service users who help with the research planning should have the opportunity to be participants in the research. While not normally good practice in research studies, the team feels this is absolutely necessary for such a screening programme. We have, however, had to emphasise to service users that just because they are helping us, they are not obliged to take part in the study.

Our experience shows that researchers can benefit from involving adults with learning disabilities in their research and that service users can benefit from the experience. Sue Lyons expressed her gratitude after the group’s first visit to the research offices: “I think we all enjoyed it. Please will you thank the whole team, everyone made us feel so welcome, including your Director.” We will continue to work with our service users throughout the project and we look forward to finding more ways of involving adults with learning disabilities in research without resorting to tokenism.

Contact: STOP Diabetes research team

Email: stopdiabetes@le.ac.uk

Tel: 0116 258 4251