By Gerard Wainwright, Clinical Educator at St Anne's Community Services. I work at St Anne’s Community Services supporting people to take part in projects like the DAPPLE Project and the READY Group. Both use coproduction, and I wanted to share what I’ve learnt from a recent READY meeting about the importance of trust. The group is made up of five people with a learning disability, led by Fred Inglis (Research Associate) and Mo Hakin (Research Assistant), and attended by Ire

One of the things we value most in the DAPPLE project is bringing people together. People with a learning disability, family members, health and social care professionals, and researchers all have different knowledge and experiences that can help improve care. We wanted to bring together that knowledge in the part of DAPPLE where we have been trying to find ways of recognising when a person with a learning disability may be in the last year of their life. Image: Kingston Un

This is how the Staying Alive and Well group started their foreword to the 2024 LeDeR report, which was published this week. LeDeR looks at the deaths of people with a learning disability and autistic people. Funded by NHS England and NHS Improvement, the death review data are analysed by a consortium led by Kings College London. The three of us at Kingston University are part of that consortium. Our job was to bring together a group of people with a learning disability from

As part of the Better Care Before Death group (in the DAPPLE project), we have to listen to stories about people with learning disabilities coming to the end of their lives and the treatment that they have been given. This is so that we can make things better for people. A researcher comes to our meeting to tell the story about a person but beforehand they have spoken to Fred about the story. He then turns the story into a picture story for us. This helps us understand and

I have been thinking about this: How can we support people’s ongoing need for relationships as their lives draw to a close? This may be especially important for people with a learning disability. To be ‘seen’ and known as a person, they rely on the relationships, community and social structures that enable them to live their own life. Listening to people’s experiences For the past year, four of our DAPPLE researchers have spent time with people with a learning disability who

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,

On 12th March, I was in the office at Kingston for a listening skills training day for our team. The session aimed to help all of us build our listening skills to support others and one another. I felt this training was important because in the KIND Research Group, we work on difficult and sensitive topics such as death and dying. Projects like the DAPPLE Project, the READY Study , and our new Assisted Dying Pilot Study all involve challenging topics that can stir up feel

Credit: Jess Cooper. Hello, I’m Jess, a Learning Disability Student Nurse from the University of Northampton. I recently had the opportunity to undertake a placement at Willen Hospice. This gave me a real insight into what compassionate, person-centred care looks like. During my time there, I saw that hospice care is about more than just medical treatment; it’s about comfort, dignity, and being truly present for people at the end of life. I noticed how care is adapted to me

We did a webinar with Irene, the professor, and we had two guest speakers: Dr Joanne Jordan and Dr Andrea Bruun. Joanne had been reading a lot of literature about palliative care and people with learning disabilities. Andrea had taken a camera to a hospice and filmed conversations with patients with a learning disability, nurses, and support staff. She showed us a video with scripted text next to it. It was black and white, like the a-ha Take on Me music video , and their v

We’re excited to share Episode 3 of the KIND Research Group webinar series, focusing on people with a learning disability at the end of life. Almost 140 people joined us to hear about our research! There were two talks. The first from Dr Joanne Jordan was about findings from the DAPPLE project scoping review exploring how palliative and end-of-life care needs are identified and met. Then, Dr Andrea Bruun shared insights from her research on communication between staff, peop

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

The Better Care Before Death group logo, by Richard Keagan Bull. The DAPPLE team leads the way in co-production. The value of the work we do is in working in partnership with people with learning disabilities who bring their lived experience to this project. One of the lessons I’ve learnt from this approach is the importance of listening to understand , when so often we listen to respond. This technique supports our colleagues with learning disabilities to be heard and valu

Image: Kingston University London It’s important that researchers have the trust of the public. But maybe some people are suspicious or worried about our motivations and agenda. And this means sometimes people do not trust researchers, including those who work for universities. One researcher I know said that he sometimes feels like people see him as the Child Catcher the villain from Chitty Chitty Bang Bang! (I actually believe that the real villain is ignorance.) But wha

Over the course of my nursing career, and now in my role as Strategic Adviser for Cancer Care at Macmillan Cancer Support, I have seen the very best and the very worst of how our health and care system supports people with learning disabilities. Those experiences – some heartbreaking, others deeply hopeful – are why my involvement in the DAPPLE research advisory group feels not just important, but personal. Why I Joined the DAPPLE Project The DAPPLE project (Developing App

Ian, Lewis and Renait 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 an

Working as a Support Research Assistant of people with a learning disability is the most rewarding work I’ve done. Jonny, Irene, Richard and Andrew. Credit: Kingston University. How I Got Here I’d like to show you why but first a brief review of what got me here after over 40 years doing other work that ranged from building, decorating, cleaning at the Natural History museum and 26 years as a Research Administrator for Imperial College Research Services. Well that’s a lo

Even when you love your job as much as I do, January can often be a tough month to return to the office (mainly due to the weather). But the KIND Research Group started the year in style – with a team party! Because we work across different projects and have jobs with different responsibilities, it’s very rare that all 12 of us are all in the same room together. Let me tell you more about what happened! Pass the Parcel First up was a game of Pass the Parcel, where anything c

In December we were delighted to host a webinar introducing The DAPPLE Project. Presented by Irene, Amanda and Sunny live from the KIND Research Group headquarters at Kingston University, the session brought together researchers from across the project to share what we have learned so far! What the webinar covered What is the DAPPLE project? An introduction to the study and why improving end of life care for people with a learning disability matters so much. “Counting the num

As we welcome 2026, we’re pleased to share a newly published paper in the British Journal of Learning Disabilities . Ned Redmore shares an Easy Read summary of the paper. Written by Ned Redmore, Research Fellow, Open University

As we seem to be hurtling towards Christmas and New Year, it seems important to remember that this time of year, for many of us, isn't all fun and games. As a team, many of us find it to be a hard reflective time. How much longer will we have with our family who are getting older? We feel sadness as those we love aren't around and we miss them. We feel loneliness and worry about who we'll be spending time with and we even worry about the arguments that are likely to happen.