The Recognising Approaching Dying in Adults with a Learning Disability or “Ready Study” is looking at the experiences of families/carers and professionals who have cared for someone with a learning disability at the end of their life.

Background

The Ready Study is about improving access to good end of life care for people with learning disabilities in the UK. Supported by Marie Curie, the study is being carried out by researchers from University of South Wales, Kingston University London and University of Southampton. Learning Disability Wales and All Wales Forum of Parents and Carers are assisting the researchers with the recruitment of professionals and parents/carers who have cared for someone with a learning disability at the end of their life.

Aims of the study

Good end of life care can allow people who are dying and those close to them to have choices and live as well as possible right up to the end of their lives. However, many people with a learning disability do not have access to the right care at the right time in the last months or years of their lives. This is possibly because it can sometimes be difficult to know if a person with a learning disability is dying and this study aims to find out more about what these difficulties might be.

The study is hoping to better understand the experiences of family carers and paid support staff who supported someone with a learning disability at the end of their life who did not die from cancer or dementia*.

Prof Stuart Todd, University of South Wales, is leading the research in Wales and told us:

“This is a landmark piece of research. It is the first learning disability study to be funded by Marie Curie, and it involves families, paid support staff and people with learning disabilities in its development and delivery. It is dealing though with a sad dimension of people’s lives and one we really need to understand a lot better than we do now. We really need to hear from people who have been through it and whose experience can help make things better for others.”

Taking part

Researchers are looking for family members and paid social care support staff of people with a learning disability who died between 6 months and 2 years ago (not from cancer or dementia) to take part in a conversational style interview.

They would like to hear your experiences and thoughts on what happened during the last few months of life of the person you supported and cared for. For example, what you thought went well, as well as what didn’t, and how easy or difficult it was for everyone to talk about what was happening. The information you provide will be confidential and will hopefully be useful in improving care in the future.

You can find out more about the research and how to take part on the Ready Study website www.readystudy.uk.

You can register your interest in taking part using the online form.

*Note: The reason the study is excluding people who died from cancer or dementia is because there is evidence that there are generally good end of life pathways for people with a learning disability who have a diagnosis of one of these conditions compared to those who die from other illnesses or conditions.