Service user involvement
Service user representatives, patients and carers were integral to the cancer genetics programme. As well as sitting on the programme steering group, service users contributed to every project and came together in the National User Reference Group.
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.
National User Reference Group
Here, service users from each project came together to address issues and share experiences, strengthening service user influence.
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.