The DAPPLE Project

The DAPPLE Project

@dappleproject.bsky.social

Developing effective service models for Adult Palliative and end of life care for People with a LEarning disability (NIHR159160)

56 followers5 following45 posts

The DAPPLE Project
@dappleproject.bsky.social

New blog from @tuffrey-wijne.com! Relationships are an important part of wellbeing, particularly at the end of life. How do we make sure end of life policies and practices centre the need to feel connected and loved? www.dappleproject.com/post/55-the-...

dappleproject.com55. The need for relationships at the end of lifeI 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 b...
The DAPPLE Project
@dappleproject.bsky.social

New blog post from Gerard Wainwright, Renait, Ian and Lewis, who are members of our Advisory Group and involved in several other projects with The KIND Research Group. They share some of the reasons why DAPPLE is important to them. 💭 www.dappleproject.com/post/45-why-...

dappleproject.com45. Why working with the DAPPLE project is important to us - Guest BlogA 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...
The DAPPLE Project
@dappleproject.bsky.social

What happened at our team party? ✔️ Quizzes ✔️ An unforgettable dance routine ✔️ Talking about funerals In this week’s blog, Fred Inglis shares how we started 2026 in style with a unique team get-together. www.dappleproject.com/post/what-ha...

dappleproject.com43. What happened at our team party? Quizzes, unforgettable dancing, and talking about funeralsEven 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...
The DAPPLE Project
@dappleproject.bsky.social

Missed our December webinar? Don’t worry – you can still watch the recording online! Find out more about The DAPPLE Project, and hear our early insights around getting end of life care right for people with a learning disability www.dappleproject.com/post/42-vide...

dappleproject.com42. Video: Getting End of Life Care Right for People with a Learning Disability (Webinar)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 ...
The DAPPLE Project
@dappleproject.bsky.social

🌟 New Blog! 🌟 Our latest blog features a conversation between DAPPLE Researchers Sunny and Fred about the ground rules our team created to help us work well together. Read the blog here www.dappleproject.com/post/39-grou...

dappleproject.com39. Ground Rules for a KIND TeamThe 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 t...
The DAPPLE Project
@dappleproject.bsky.social

🤔WHAT'S IN A NAME?🤔 Learning disability or intellectual disability? In today's blog, @tuffrey-wijne.com talks about why the names we use matter - and our decision to change the name of our research group. www.dappleproject.com/post/37-lear...

dappleproject.com37. LEARNING DISABILITY or INTELLECTUAL DISABILITY… What’s in a name?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 ...
The DAPPLE Project
@dappleproject.bsky.social

🎬 We often use videos in our work. But what is a ‘good’ video? And how do you make one? To help us find out, we had film training with Aram Atkinson. In our latest blog, Irene, Andrea, Jonny & Fred reflect on what they learned: www.dappleproject.com/post/36-film...

dappleproject.com36. Film training with Aram AtkinsonThe importance of videos to our workOne 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 impact...
The DAPPLE Project
@dappleproject.bsky.social

🧺 Why is there a washing line in our office? Our latest blog shares the story behind the washing line, our Co-production team’s creative way of tracking the many different stages of The DAPPLE Project. www.dappleproject.com/post/35-why-...

dappleproject.com35. Why We Have a Washing Line in Our OfficeWhen 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 st...
The DAPPLE Project
@dappleproject.bsky.social

🫖 NEW BLOG POST 🫖 How do you take yours? This week, Richard and Jo talk about tea, and how sharing a cuppa with friends, family and colleagues is so important to feel connected and valued. www.dappleproject.com/post/33-how-...

dappleproject.com33. How do you take yours?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 ...
The DAPPLE Project
@dappleproject.bsky.social

Last week, some of our team left their inboxes behind and took part in an academic writing retreat! In this week’s blog, Becky Anderson-Kittow shares what happened when we swapped our desks for the countryside… Read Becky's blog here www.dappleproject.com/post/32-a-da...

dappleproject.com32. A DAPPLE Project writing retreatLast 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 fro...
The DAPPLE Project
@dappleproject.bsky.social

In this week’s DAPPLE blog, Richard Keagan-Bull explains how the Better Care Before Death co-production group chose their name, and what inspired him to design the group’s logo Read Richard’s blog here 👉 www.dappleproject.com/post/31-bett...

dappleproject.com31. Better Care Before Death Group: Choosing our name, designing our logoIn 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 bett...
The DAPPLE Project
@dappleproject.bsky.social

🎉 NEW BLOG POST 🎉 On 1 September 2025, the DAPPLE Project turned 1! In today’s blog post, @tuffrey-wijne.com and Becky Anderson-Kittow look back on the past year and reflect on the progress, challenges, and highlights of the project’s journey so far. www.dappleproject.com/post/blog-29...

dappleproject.comBlog 29. Happy first birthday to the DAPPLE Project!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 ...
The DAPPLE Project
@dappleproject.bsky.social

🤗NEW BLOG POST🤗 In this week’s powerful blog, @tuffrey-wijne.com reflects on her early research career. She explores the privilege of witnessing people’s lives and stories and why saying YES to research can be meaningful for everyone involved. www.dappleproject.com/post/28-i-m-...

dappleproject.com28. “I’m glad she got to tell her story before it was too late”: Why people might say YES to being in the DAPPLE studyThe 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...
The DAPPLE Project
@dappleproject.bsky.social

📃NEW BLOG POST!📃 In this week's blog, Fred shares our published protocol - this is our plan for DAPPLE. There are also some links to other ways you can find out more about what we are doing on the DAPPLE Project. www.dappleproject.com/post/27-the-...

dappleproject.com27. The DAPPLE Project Protocol: Now Published!We are delighted to share that the protocol for The DAPPLE Study has just been published in BMJ Open. You can read the protocol here.So, what does this mean? Essentially, the protocol is the blueprin...
The DAPPLE Project
@dappleproject.bsky.social

👀 NEW BLOG POST 👀 This week, Francesca Horne shares a video about the Sawubona 'I see you' Forum she attended in May which was all about equity and compassion in end-of-life care. Check it out here... www.dappleproject.com/post/25-sawu...

dappleproject.com25. Sawubona (I See You) National Forum ConferenceOn 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 inc...
The DAPPLE Project
@dappleproject.bsky.social

🛳️“It was like being on a cruise!” 🛳️ Mo usually doesn’t enjoy conferences. He feels they are often not inclusive for people with a learning disability. In this week's blog, Mo shares how the PCPLD Network Conference was different. 👉 Read Mo’s blog here: www.dappleproject.com/post/24-conf...

dappleproject.com24. Conferences can feel like a long haul flight… but this was like a cruise!Hello everyone!  My name is Mo.  I am a Research Assistant in the Learning Disability Research Team at Kingston University.  I don’t work on The DAPPLE Project. I work on another project called The RE...
The DAPPLE Project
@dappleproject.bsky.social

💬 NEW BLOG POST 💬 This week our project manager Christina talks about the challenge of jargon when trying to set up a research project. Using long words and acronyms leaves people out, even though it might seem quicker or easier if you're an expert. www.dappleproject.com/post/24-gett...

dappleproject.com24. Getting the rubber stamp to do research in the NHS: first we need to do some jargon-busting.When we first started setting up the biggest part of the DAPPLE study (listening to people’s stories) we knew there would be hurdles. After all, we’re trying to do something sensitive and important: l...
The DAPPLE Project
@dappleproject.bsky.social

📢 New Blog! What can we learn from conversations 'in the wild'? Introducing a new pilot study, Andrea Bruun delves into the potential of Conversation Analysis to explore conversations involving people with learning disabilities in palliative care settings. www.dappleproject.com/post/23-vide...

dappleproject.com22. Video-recording conversations in a hospice: The PallComm pilot studyI am really into how we communicate with each other. So much that I have specialised in analysing communication. My background is in Linguistics (a fancy word for language science), and on my course I...
The DAPPLE Project
@dappleproject.bsky.social

This #LearningDisabilityWeek we’re highlighting how important it is that every person with a learning disability is seen, heard, and valued at the end of their life. Irene Tuffrey-Wijne asks what changes YOU would like to see to help make this happen. www.dappleproject.com/post/getting...

dappleproject.com20. Getting our head around stakeholdersAre you a DAPPLE stakeholder? You are reading this blog, so the answer is YES! But what is a stakeholder? And why do we want to know more about them – about you, and all our other stakeholders? We ha...
The DAPPLE Project
@dappleproject.bsky.social

📢 New Blog! 📢 This week’s DAPPLE Blog comes from Andrea Bruun, who recently gave 4️⃣ presentations at the European Association for Palliative Care World Congress (EAPC) 2025! You can read Andrea's blog here: www.dappleproject.com/post/19-dapp...

dappleproject.com19. DAPPLE at the European Association for Palliative Care (EAPC) 2025From 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 tel...
The DAPPLE Project
@dappleproject.bsky.social

🎉 Celebrating the Cuppa Tea With Richard podcast at The Shard! 🎙️✨ Read the latest DAPPLE blog, where Sunny and Richard share their experience of Afternoon Tea from the 33rd floor... www.dappleproject.com/post/richard...

dappleproject.comRichard’s Cuppa tea celebration for his podcastRichard 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 DAPPLE Project
@dappleproject.bsky.social

🗨️ NEW BLOG POST! 🗨️ DAPPLE Research Assistant Richard is often interviewing people for his Podcast. This time, he was in the hot seat! In this week’s blog, Richard shares his recent appearance on The Sui-Ling Show. www.dappleproject.com/post/17-rich...

dappleproject.com17. Richard appears on The Sui-Ling ShowI 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 appeared as a guest on MacIntyre's The Sui-Ling Show!Sui-Ling is a mem...

The DAPPLE Project reposted

Irene Tuffrey-Wijne
@tuffrey-wijne.com

Richard sits down with the brilliant & hilarious Mel Giedroyc for a heart-warming, witty conversation that covers everything from Eurovision to writing books & dream dinner party guests. Their instant connection and infectious humour are guaranteed to lift your spirits soundcloud.com/cuppa-tea-wi...

soundcloud.comEp. 13: Mel GiedroycNew Episode Drop! Richard sits down with the brilliant and hilarious Mel Giedroyc for a heartwarming and witty conversation that covers everything from the glitz of the Eurovision Song Contest to the
The DAPPLE Project
@dappleproject.bsky.social

🎧 NEW BLOG POST 🎧 Did you know that our research assistant, Richard, hosts an award-winning podcast? This week, he reflects on recording an episode with special guest Mel Giedroyc. www.dappleproject.com/post/16-i-fe...

dappleproject.com16. “I felt a warmth between us”: Recording an episode of my podcast, A Cuppa tea with Richard, with Mel GiedroycMy 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 blo...
The DAPPLE Project
@dappleproject.bsky.social

📚 NEW BLOG POST! 📚 In this week’s blog post, Liz Tilley reflects on the role that stories might play in helping to improve care for people with learning disabilities at the end of life. www.dappleproject.com/post/15-the-...

dappleproject.com15. The power of storiesWhat 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 g...
The DAPPLE Project
@dappleproject.bsky.social

NEW BLOG POST! What will comfort you at the end of your life? In this week's blog, Fred Inglis shares how this question inspired our creative workshops, engaging people with a learning disability in Yorkshire. www.dappleproject.com/post/14-what...

dappleproject.com14. What will comfort you at the end of your life?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 ran...
The DAPPLE Project
@dappleproject.bsky.social

NEW BLOG! 👒 In this blog, Jo Giles thinks about how the 'hat game' (that the team are often known for), can stop people seeing the in-depth work the co-production team does. Read on to get a peek behind the scenes. www.dappleproject.com/post/14-we-a...

dappleproject.com14. We are more than just the 'Hat Game'!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 m...
The DAPPLE Project
@dappleproject.bsky.social

📢 NEW BLOG POST 📢 "People with a learning disability can be lights that shine in a research team”. Sunny Sokhal reflects on why he became a researcher and the difference people with a learning disability can make to projects. www.dappleproject.com/post/12-i-ha...

dappleproject.com12. I have a learning disability. This is why I became a researcher.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...
The DAPPLE Project
@dappleproject.bsky.social

👀 NEW BLOG POST 👀 by @andreabruun.bsky.social We share our first two DAPPLE posters. One is about employing researchers with a learning disability as researchers, and the second introduces the DAPPLE project. BOTH posters won prizes! Go team 🏆 www.dappleproject.com/post/11-the-...

dappleproject.com11. The first DAPPLE postersBack 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 Con...
The DAPPLE Project
@dappleproject.bsky.social

This week we hear from Amanda who has a learning disability and has worked as a researcher at Kingston with @tuffrey-wijne.com for 15 years. Amanda talks about her love for conferences after presenting at the Palliative Care Congress in Belfast last week 🍀 www.dappleproject.com/post/i-love-...

dappleproject.comI love conferences!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 ...
The DAPPLE Project
@dappleproject.bsky.social

For this week's blog, Sunny wrote a rap about how it feels to be judged as a person with a learning disability - listen here... "So next time you judge, remember my face I'm breakin' barriers, leavin' my trace" www.dappleproject.com/post/8-judge...

dappleproject.com8. Judgement's Rage - Music VideoHello, 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 wrote it about having a learning disability.Sunny Sokhal - Judgemen...
The DAPPLE Project
@dappleproject.bsky.social

NEW BLOG 📢 On the DAPPLE project, we will be spending time with people with a learning disability who are at the end of their life. In this week's blog, Professor Erica Borgstrom reflects on training in this research method (ethnography) completed by members of the team going out to do this work.

dappleproject.com7. Ethnography: Into the unknown...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 di...
The DAPPLE Project
@dappleproject.bsky.social

📣 NEW BLOG! 📣 Have you ever had a long wait for a bus? In this week’s DAPPLE blog, Fred Inglis shares how a chance encounter at a bus stop changed how he thinks about death. Read the blog here www.dappleproject.com/post/6-a-con...

dappleproject.com6. A conversation that echoes: what I learned about death while waiting at a bus stopHave 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 wai...
The DAPPLE Project
@dappleproject.bsky.social

NEW BLOG POST! 📢 @ericaborgstrom.bsky.social discusses the refresh of the James Lind Alliance Priority Setting Partnership on palliative and end of life care research, launched by @mariecurieuk.bsky.social last week, and how this fits with the DAPPLE project. www.dappleproject.com/post/4-the-d...

dappleproject.com4. The DAPPLE Project: Addressing palliative and end of life care research prioritiesOne 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 pa...