From 29-31 May, the European Association for Palliative Care (EAPC) held their 19th World Congress in Helsinki in Finland with the theme “Ready for the future”. I was lucky enough to go, so let me tell you a little bit about it. On the 28 May I made my way to Helsinki. Travelling involved a lot of chaos as I locked myself out of my flat with my passport inside and ended up missing my flight. A lot of phone calls to Irene and university travel agents later, I was on a plane an

Richard, Irene, Jonny, Anastasia, Sunny, Mo and Fred saying 'Hello' from The Shard! Photo: The KIND Research Group Richard and the podcast team – Irene, Jonny, Anastasia and Jo - won an award at Kingston University. The award was for being ‘innovative’. We were given some money (£500) to celebrate.   We had to spend the money together, we did. You couldn’t spend it separately. So, we decided to go for an afternoon tea.   First of all, we were going to go to The Ritz and then,

I am used to interviewing people for my Podcast 'Cuppa Tea with Richard' . Recently, it was my turn to be in the hot seat, when I...

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

Image courtesy of Books Beyond Words. What leads to real improvement in how people with learning disabilities are supported by health and care services? And how do we know that things are getting better, rather than staying the same (or getting worse)? Is more money the answer I wonder? Targeted training? Stronger leadership? Clearer accountability? Better systems? Authentic co-production? Changing attitudes? Trying to work out which pieces of the puzzle matter most sometimes

Image: Kingston University London Last month, the DAPPLE team held three creative workshops in Yorkshire as part of our Co-production ‘Roadshows’ (so-named by my colleague Richard as an homage to the Radio 1 summer events). A wide range of people came to the workshops: people with a learning disability (including some with profound and multiple learning disabilities), support workers, and other professionals.  Everyone in the room was invited to answer the question: What will

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

People with a learning disability need to be involved in research.  Especially when the topic is so important – The DAPPLE Project is about life and death!  I became a researcher because I want people with a learning disability to get good care at the end of their lives.  I also want to challenge – and stop – ignorance about people with a learning disability and what society says we can and can’t do.  (I feel very strongly about this and wrote a rap about it – you can watch m

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

Image: Kingston University London. Hello, I’m Amanda Cresswell. I have a learning disability and I’ve also had cancer. I’ve been a researcher at the university for 15 years. I’ve worked with Irene on lots of studies, like the Breaking Bad News study , the Talking About Dying study  and the Victoria & Stuart Project . Now we’re doing the DAPPLE project together.   It’s no good doing research if we don’t tell people about what we’ve been doing. So we give talks to lots of profe

A few years ago, my partner and I had to sit our (then 6 and 8 year old) kids down to tell them that Col, my partner, their dad, had throat cancer. We didn’t know if he would live or die but the odds didn’t look good. We were told, ‘You have to have hope’ by the cancer doctor. Well, that didn’t sound good and the stats weren’t so great either.  Our lives had just been thrown into turmoil. All the usual thoughts in those circumstances of, ‘Will he die?’, ‘How will I cope?’ wer

Hello, I’m Sunny Sokhal. I have started my new job as a Research Assistant on the DAPPLE project. I want to share my rap with you. I...

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

Have you ever had a conversation that echoes?  Several years ago, before working at Kingston University, a chance encounter at a bus stop was to have a marked effect on me.  Moaning about the long wait, I got into a conversation with a fellow commuter, Ian*, a man with a learning disability.  After sharing some full and frank observations about the bus service, we got talking about work.  Ian mentioned that he had previously worked in a mortuary.  I had never met someone who

One of the reasons we are doing the DAPPLE project is because it helps us answer questions about how to improve palliative and end of life care research. The James Lind Alliance, along with various partner organisations, identified a series of research priorities in 2015 . When we wrote our grant, this including questions like ‘How can access to palliative care services be improved for everyone regardless of where they are in the UK?’. By focusing on finding the best ways to

Could you be a champion, working hard to make sure someone with a learning disability gets good care and support at the end of their life? You can make a difference. That’s the conclusion I came to seven years ago. For the past decade, I had chaired the judging panel for the annual Linda McEnhill Award . We selected winners from a wide range of individuals, teams and projects that had demonstrated excellence in providing palliative and end of life care to people with a learni

A friend of mine was dying of cancer. His name was Terry. It’s quite a few years ago now, but I still remember it really well. Not long...

Image: Jean Wilson. The DAPPLE project hasn’t come out of nowhere. It has not been dreamt up by academics sitting at a solitary university desk. It has been built on sighs and cries, on many people’s questions, leading to wishes and demands. More than anything, this project has come out of the voices of people with a learning disability and their families and carers. They are our foundation. Over the past decades, we have learned so much from people. We have seen how terrible

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