Well-being services for people with long term neurological conditions: co-researchers involvement in research, service design and development

This chapter outlines the involvement strategies used in a participatory action project conducted in the UK, together with co-researcher evaluation of their experiences, presents reflections on the process of involvement in service design and delivery and its impact on community coresearchers. The study was jointly commissioned by a Primary Care Trust and a Local Authority Adult Social Care department in partnership with researchers in the Research Institute of Health and Social Care at Manchester Metropolitan University. The study, in line with the UK government well-being agenda (DoH, 2007b), was designed to reveal the ways in which services provided for people with Long Term Neurological Conditions (LTNC’s) can enhance well-being rather than simply reveal or address their health and social care needs. In effect, this refocuses service provider perceptions away from seeing people with LTNCs as needy, or as problems to be solved (by addressing their needs) and more towards people whose well-being can be substantially improved with the support of professionals. People with LTNCs who were involved in this study included those with Parkinson’s Disease, multiple sclerosis, cerebral palsy, stroke, dementia, epilepsy, motor neurone disease, muscular dystrophy, acquired traumatic brain injury among others with rare conditions such as Lesch-Nyham Syndrome. The study took a participatory action research approach (Kagan, Burton and Siddiquee, 2008) in which a key element was the input from the LTNC’s service user and service provider communities. The experiences of university and co-researchers have been traced in this paper, pointing to the importance of considering the short and long term implications of collaborative working and the impact this has on project outcomes and service design.