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. 

The KIND (Kingston University Intellectual Disability) Research Group is a big team -there are 12 of us, working on different research projects!  It is also a unique team - we are the only research team in the UK that has salaried researchers with and without a learning disability in salaried academic posts. Last month, Irene Tuffrey-Wijne, who leads the KIND Research Group, brought us together. She asked us to think about how we work. She asked us to make some ground rules

I love conferences. They are my favourite part of my job.  I get to meet new people and tell them about our work. I get to share how our research is helping people with learning disabilities get better care at the end of their lives. But for me, going to a conference is not as simple as just turning up.  There is a lot of planning and support involved to make the this part of my job accessible for me.  In this blog I will tell you about my experience on a recent trip to Birmi

Words matter. Names matter. Your name is part of your identity, it’s your visiting card. Hello, my name is… and what’s yours?  You want to feel that your name fits you like a second skin.  If your name is too much of a mouthful, it will get shortened, so you’d better get in there quick. You want to make sure that the shortening that makes sense to you and, crucially, that you like it. That’s why we changed the name of this project, from the Developing effective service models

Photo: The KIND Research Group The importance of videos to our work One of the first things Irene Tuffrey-Wijne told me when I joined Kingston University was this: when it comes to sharing our research, a video can be just as impactful as a journal article. That may not come as a surprise to anyone familiar with this team’s work. We use video a lot. Videos help us make information about our projects accessible, ensure our colleagues with learning disabilities are visible and

When I returned to our Kingston University office on Monday after a week away on Annual Leave, I was greeted by a washing line.  And no, that’s not the strangest thing we have here – the flying pig still holds that title! Our Washing Line:  The Purpose So, why do we have a washing line in the office? It all comes down to DAPPLE. This is a large, three-year project made up of four parts. Some of these parts have smaller sections.  Some parts are already completed, and others

Richard shares his thoughts on benefits for people with a learning disability.

Jo and Richard enjoying a cuppa. Photo: Kingston University We quite like making cups of tea in our office and we have a bit of a joke in the office about Jo’s tea-making skills. She hasn’t quite got it right yet and is still, after years of being at Kingston University, in training! … or so Richard says!    A cup of tea is good for starting the day off but it’s so much more than that. It’s the strength of the tea and whether that matches what the person wants because each of

Last week, some of our research team went away on a writing retreat in North Yorkshire. Like some of our team, you may be wondering, What is a writing retreat?  This was a chance for us to get away from our desks and focus on writing, planning, and spending time together. Travelling to the retreat! We enjoyed catching up with each other on the train. Photo: Kingston University Arriving We travelled to the retreat by train. Life is busy and we’re not always in the office at t

In The DAPPLE project, we work with a co-production group of people with a learning disability. The group works with us to understand what we are finding out from the research, and how to make it better. Together, we all want to improve the care people with a learning disability receive at the end of their life. One of the first things we needed to do when starting the group was to choose a name and a logo. What should We Call the Group? It was hard to think of a name for the

We are taking a short break from our usual DAPPLE updates this week.  That’s because we’ve got some exciting news to share… The Print & Deliver service is LIVE! Everyone should get the chance to talk about dying and plan for the end of their life.   But it can be hard to know where to start.  Thanks to the new Print and Deliver service funded by the Marie Curie UK Research Impact Fund, printed copies of the Victoria and Stuart Project toolkit are now available to help with

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