Improving access to good end of life care: recognising dying in people with learning disability

University of South Wales

Getting the right care at the end of life means dying people and those close to them can live well right up to the end. Many people need this sort of care, but they do not all get it. We think people with learning disabilities do not always get the right care at the right time in the last year of their life. When nobody realises that someone is going to die soon, they may not get the extra care they need. It is more difficult to work out when someone is dying with some illnesses than others. We are interested in those more difficult illnesses because many people with learning disabilities die from them.

We want to talk with people with learning disabilities, families, and paid carers about the best ways to do the research to help us understand what the study finds. We will then talk with some families and paid carers about the death of a person with a learning disability who they knew well. We want to find out about what happened at the end of that person's life. Then we want to talk to GPs, and specialist teams about how they usually work out that someone might be dying. Doing this study will help us to understand some of the important decisions made at this time and what might help.

This will be the first study in learning disability and end of life research where people with learning disabilities, family members, GPs and specialist teams work together like this. We will make sure the research process is respectful and accessible to everyone taking part in it. At the end, we will advise services what they can change so that more people with learning disabilities have better experiences in the last months of their lives.