Involving users in shaping motor neurone disease services

Keren Down, Rhidian Hughes, Anu Sinha, Irene Higginson and Nigel Leigh

An exploration of how people with motor neurone disease might be meaningfully involved in service delivery.

User involvement in the planning, development and delivery of health and social care services is increasingly common, but the meaningful involvement of people affected by motor neurone disease (MND) is likely to pose particular challenges. This study explores whether users of motor neurone disease services want to be in touch with others in a similar position, to share their views and experiences of services, and together bring about service change.

The project began with a series of research interviews to explore the issues of concern to this group. Capturing the themes emerging from this research, the second part of the project adopted a community development approach to explore the possibility of involving people with MND, their carers and family members through a local user group, a local network and the establishment of a virtual group through a website-based forum.

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