45. Why working with the DAPPLE project is important to us - Guest Blog

A group of us from West Yorkshire are part of the Advisory Group for DAPPLE (the Advisory Group are a group of 'critical friends' who help guide the project and share their views). We are also members of The READY Group (REcognising Approaching Dying) a research study focused on improving palliative and end-of-life care for people with learning disabilities. We meet every month on Zoom with Mo, Fred, Amanda and Andrew from Kingston University, and another member who joins from her home in Essex.

Meet the Team 

I’m Renait. I work in paid roles as an Oliver McGowan Co-trainer and with the Public Partnership Board at my local university. I also work as a volunteer with The British Heart Foundation. I have a learning disability, dyspraxia and I’m autistic. 

I joined The DAPPLE Advisory Group with Ian, Lewis and Gerard. What we do in the group is important to me. It’s good for us to support each other because we talk about difficult things like death and dying. But we also have fun together. I believe that people with a learning disability should get the right care at the end of their lives. That can be different for different people, but we should choose. We understand, because we have learning disabilities and all have different experiences of health care that we bring to the group. 

My name is Ian. I’m a potter and make ceramics, which I show in exhibitions and sell. I’m a volunteer at Oxfam and I’m a member of the Harriers, a local running club. I have a learning disability and cerebral palsy.

Something that’s important to me about this project is that we get paid. It shows that we are valued and have our own skills and know more about things that affect us than people who don’t have a learning disability. It means a lot to me to be involved in finding out more about the care people with learning disabilities get at the end of their lives and talk about the kind of care we would want for ourselves. 

I’m Lewis, I work as an Oliver McGowan Co-Trainer and have been involved in coproduction projects about health inequalities. I have a learning disability.

There’s lots I like about being a member of The DAPPLE Advisory Group and The Ready Group. I think it’s important to get feedback from people with lived experience. I feel very strongly about improving health care for people with a learning disability. I hope that we can help to change things. We want to help Drs, nurses and people who work in social care understand us better and provide better healthcare. 

I’m Gerard. I’m a learning disability nurse. I’m also autistic. I’ve worked with Renait, Ian and Lewis on lots of different projects.

Sometimes people look for simple answers to complicated questions, but what I love about our work with DAPPLE is that we work together and talk about difficult stories. We do this in a way that helps us all better understand and share what we think and how we feel. To recognise how people with a learning disability can get the right care at the end of their life.  

Hearing from the viewpoint of people with lived experience is what makes this project meaningful. The DAPPLE Advisory group (and the other groups we are part of with the KIND Research Group) are all about providing an opportunity for people with learning disabilities to have an influence and an impact on the things that are important to them. I’ve learnt a lot. Being involved has helped me be a better listener and improved my understanding of the things that really matter to the people with lived experience in the group. 

Written by Gerard, Renait, Ian and Lewis, members of the DAPPLE Research Advisory Group.