The DAPPLE project aims to understand the experiences of adults with a learning disability who are ill and approaching the end of their lives. By learning from people’s experiences, we hope to help improve the care and support available to others in the future. One of the ways we do this is by spending time with people with a learning disability who are seriously ill, as well as speaking with their families, caregivers, and the staff who support them. We take time to listen,

Admittedly, I was quite naïve when I began this project as a research associate. I expected difficult stories, of course, but I assumed the positives would naturally outweigh the challenges in the field of learning disability and palliative care. You might be thinking, “Palliative care… isn’t that just about people dying? How could that be anything but depressing?” But the truth is that death and dying can be deeply peaceful experiences—for the person themselves and for those

Most of the DAPPLE Team. Photo: Kingston University. Irene says: This is a study I have wanted to do for a very long time. My previous studies have focused on the experiences of people with a learning disability at the end of life; their information and support needs; breaking bad news; staff training and support needs (from palliative care nurses to support workers); end of life care planning.  Conclusions from these studies almost always include the need for everyone to wor

The year was 2006. I was about to embark on what would turn out to be a research-career-defining study. I wanted to spend time with people with a learning disability who had cancer, to try and see the world through their eyes and learn about their needs. I had written my first ever big grant proposal, and Cancer Research UK said yes, good idea, we’ll fund it. I had passed my plan by the national Research Ethics Committee, and they liked it too, especially my easy-read informa

The other week we gathered around the talented researchers to do some training. We focused on those researchers who will be going out and learning about people’s lives and how they are supported by different services and those around them, especially when they have a life-limiting illness and may be towards the end of life. They will be going to four parts of the country and, through their engagement with people and services, developing a sense of case studies. To do this, th