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

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

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

On May 6th, I had the privilege of attending the  Sawubona National Forum , a powerful gathering dedicated to transforming palliative and end-of-life care through the lens of equity, compassion, and inclusion. The forum, named Sawubona, meaning “I see you”, opened my eyes to the deeply rooted disparities that persist in palliative and end of life care. It became clear that inequity goes far beyond access to services; it’s embedded in how care is communicated, understood, and

Freya Tyrer is leading on the “big numbers” part of the DAPPLE project. In this blog post, she tells us what the numbers are saying about how people with learning disabilities experience end-of-life care.   Photo: Freya Tyrer I’m an epidemiologist – which is a fancy way of saying that I use big numbers to understand health conditions.    I have always worked with numbers. Maths was my best subject at school 😊 . I originally did a Computer Science degree, starting out as a co

Richard and Mel raise their cups of tea and smile after recording an episode of A Cuppa Tea with Richard. Photo: Kingston University London. My name is Richard Keagan-Bull. I am a research assistant with a learning disability, and I work at Kingston University. I host a podcast where I chat to guests over a cuppa tea.   I’m writing this blog to tell you what it was like to record the thirteenth episode of my podcast with Mel Giedroyc. Mel Giedroyc is a comedian, actress, pres

I’ve become aware that our team has become known for our hat game. I know… we post a lot of pictures with people in funny hats, so it’s not surprising. But it’s begun to worry me.  You see, we are so much more than just ‘the hat game’!  We use the hats to  kick-start  our focus groups and our online meetings as they create a lovely vibe. People might have been anxious about joining the session but walking into a room where you see fun hats and wigs on the table… well, people

Back in December 2024, members of the DAPPLE team went to the Seattle Club Conference. The conference was held in London (not Seattle!) on 12-13 December by King’s College London. The Seattle Club Conference is the premier UK-based conference for intellectual and developmental disability research. This year’s conference themes were health inequalities and people with intellectual and developmental disabilities and inclusive research with keynote presentations by Professor And

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

Image: Irene Tuffrey-Wijne Written by Prof Irene Tuffrey-Wijne (Project Lead) I’m delighted to welcome you to the DAPPLE project, this brand-new website and our first blog post. Whoever you are, wherever you’re reading this: WELCOME! You will find plenty of information on this website, including a wonderful video presented by my colleagues with a learning disability. What is the DAPPLE project, who is doing it, why are we doing it, what will we do? Let me tell you a little bi