Sharing experiences of user involvement in shaping new services: the story of a national patient group.

When the Cancer Genetics Pilots Programme was established in 2004, Macmillan Cancer Support undertook to create and facilitate the work of a "National User Reference Group". The purpose of this group was to give service user representatives (patients and carers) from each of the seven pilot projects regular opportunities to meet and share experiences and thus strengthen the influence of patients on the services. Macmillan commissioned a narrative writer to record key aspects of the national user group's work and influence. The emerging narrative accounts, created in collaboration with its members, provide a picture of a diverse group of skilled and enterprising individuals, enthusiastic about helping future patients. Service users have contributed to shaping projects, improving written information and sustaining the local services. In addition, project staff responsible for user involvement highlighted the value of training for user representatives and the need to remove financial and logistical barriers to participation. The national user group itself received vital support from Macmillan in the form of a dedicated "group facilitator", as well as continuous guidance and encouragement from a senior manager (an "organisational sponsor") present at all the group's meetings. By the end of 2006, the group discussions indicated that user involvement had developed to varying degrees and in different forms across the pilot projects. In the best case, patient representatives were being "treated as part of the team".