Why is the study important:

• Getting the right care at the end of life means people who are dying 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. Sometimes this is because it is difficult to know if a person is going to die soon. More people with learning disabilities die from an illness where is it difficult to know when they are dying.

• We would like to understand more about these difficulties by talking to family members and others who were close to them in confidential interviews. 

Why we are doing the study:

• Doing this study will help us understand some of the important decisions made at this time and what might help.

• At the end, we will advise services on what they can change so that more people with learning disabilities have better experiences in the last months of their lives.

• The study is expected to end in June 2026 when we will share our findings.

When will the interviews be done:

• We will be interviewing families and paid carers from April 2025, until September 2025.

• Following the interview phase, we will be using our findings from these interviews to talk with GPs and health care professionals.