Service user involvement

Involvement in the projects

Each project had a reference group of service users, who helped shape the service. Their contributions ranged from helping to produce patient literature to raising local awareness of the service.

• read the 'Role of service user representatives' article in Macmillan Voice
• read about service users' role in the Oldham project in Ripley et al, in the Familial Cancer special edition (June 2007, volume 6 no. 2)
• each project's final report discusses service user involvement - you can access final reports on the individual pilot information page.

National User Reference Group

Here, service users from each project came together to address issues and share experiences, strengthening service user influence.

• read about the work of the group in Donaldson et al, in the Familial Cancer special edition (June 2007, volume 6 no. 2) 

Getting involved

If you're interested in becoming a service user representative, we suggest you contact your regional genetics service – they welcome service users and are familiar with local/regional services. The contact details for regional genetics services are on the British Society for Human Genetics website|. You can also visit the Genetic Alliance UK| website. Formerly the Genetic Interest Group (GIG), this is a national charity that represents over 130 patient organisations that support children, families and individuals affected by genetic disorders.