Background
Eight out of 10 of Genetic Alliance UK’s member organisations are small patient advocacy groups and they have expert knowledge to share about the natural history of specific genetic conditions and how they impact on the physical health, mental health and quality of life of the people who live with them and their wider families. Their input to decision-making by government and NHS bodies is vital to ensure that their work is informed by the views of people with lived experience who will be affected by the decisions they make and access the services they provide.
However, these small patient advocacy groups have limited capacity to engage with and contribute to decision-making processes. Micro charities are often led by volunteers, usually parents juggling their voluntary commitments alongside their caring responsibilities, paid work or both. Small charities often have just two or three members of staff whose skills and expertise tend to focus on providing direct support services to the community they serve and raising funds to sustain the charity’s work.
What are these resources?
Funded by Genomics England, Genetic Alliance UK has developed guidance to help large organisations engage with small patient advocacy groups in a way that is proportionate to the time they can contribute and helps them to gather and share the views of their community as easily as possible.
These resources are based on the views of small and micro charities about how much time they have to contribute and the easiest ways for them to gather and share their community’s views.
The report summary gives background information on this project and gives recommendations for engaging with small patient advocacy groups.
The top tips document provides quotes and insights from the small and micro charities who gave feedback on this project.