Irene Tuffrey-Wijne
@tuffrey-wijne.com
Professor of Intellectual Disability and Palliative Care (Kingston University, London). Let’s talk about dying, death, bereavement and intellectual/learning disability.
Webinar recording day!!! Here's the webinar production team! Hundreds of people attended live. Missed it? The recording will be on YouTube soon. But nothing beats a live attendance, so don't miss our next webinar! 5th March 2026 You can already register here: shorturl.at/AO3Ll
An amazing 700 people have signed up to our webinar on Thursday... but there's always room for more! Join the crowd at lunchtime! Register here: shorturl.at/crMpL
Continuing our new webinar series! On 4th Dec (1pm), some of our amazing team will tell you about The DAPPLE Project and its early findings. Don't miss it! Sign up here: shorturl.at/YCDmW
“You have to always highlight the stuff that you can’t do. It makes you feel bad” In this important blog, Richard explains what it feels like to be assessed again and again in order to keep his benefits and support www.dappleproject.com/post/34-don-...
34. "Don’t keep assessing us for our benefits cos our learning disability will not go away!"
Richard shares his thoughts on benefits for people with a learning disability.
dappleproject.com
Can you help us find study participants? I am part of the READY Study team. We want to listen to family or paid carers of people with a learning disability who died, learning more about people who died of something other than cancer or dementia. Get in touch if you want to find out more
Missed our webinar? The recording is now on YouTube, so you can catch up! youtu.be/AK_2EtY8VXo
WEBINAR: Talking about dying with people with learning disabilities
YouTube video by Victoria & Stuart Project
youtu.be
Kicking off our new webinar series…. Here we were in the office yesterday, hosting a webinar on our end-of-life care planning toolkit! @mariecurieuk.bsky.social
Looking forward to kicking off our new webinar series tomorrow! We’ll show you how to use our toolkit for end of life care planning - and how to get your own free resources! You can still register: shorturl.at/LgOPC
Academic writing retreat! I’d never heard of it, let alone been on one, but it was glorious. In Yorkshire, with 5 of my lovely colleagues, cut off from the world (no emails!), between us we worked on 2 grant applications and 4 academic articles. Also included: walks, lamas, yoga and great food!
Excellent name for the co-production group. It does what it says on the tin! As always, our colleagues with learning disabilities nailed it with unambiguous language
The DAPPLE Project@dappleproject.bsky.social · 11mo agoIn 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...
Spread the word! 📣 www.dappleproject.com/post/30-orde...
30. Order your FREE printed end of life care planning toolkit!
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 ab...
dappleproject.com
Can’t believe it’s a year already! What a great project & great team
The DAPPLE Project@dappleproject.bsky.social · 11mo ago🎉 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...
My colleague Richard told the BBC he found the findings "really upsetting". "People are still dying quite young and are not getting the right support and care. It could be me or it could be somebody I know and I want these deaths to be taken really seriously." www.bbc.co.uk/news/article...
Adults with learning disabilities die 20 years early, says report
People with learning disabilities and autism die almost 20 years younger than the rest of the population.
bbc.co.uk
“It’s very important that people read this report”. Find it here: www.kcl.ac.uk/research/leder
Easy read and accessible versions of the LeDeR 2023 report are available to ensure findings reach everyone. These materials make research accessible to people with a learning disability, their families, and carers. Here is the video made by the Staying Alive and Well Group youtu.be/qRUdWqz20jg
LeDeR 2023 REPORT
YouTube video by Staying Alive and Well
youtu.be
The new LeDeR report is now available. The 2023 annual report analyses the deaths of 3,556 people with a learning disability & autistic people who died in 2023. The work is part of efforts to reduce health inequalities. Access here: kcl.ac.uk/research/leder
Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR)
The latest annual LeDeR report in collaboration with our academic partners on behalf of NHS England.
kcl.ac.uk
Be one of the first to order. Launching today! (UK only - other countries can still freely download and print at home) Order link is in this short video. Please share! youtu.be/VrntRIJCdXY?... @andreabruun.bsky.social @mariecurieuk.bsky.social
FREE end of life care planning toolkit sent to your door
YouTube video by Victoria & Stuart Project
youtu.be
Out with a bang, literally! Ours was the final presentation on the final conference day, and just as we finished, Utrecht’s church bells rang out @asdsdeath.bsky.social @victoria&stuart project
"The remarkable project reaches an under-served community and provides numerous accessible resources around the often neglected area of end of life care planning with people with learning disabilities." The Victoria and Stuart Project wins the ASDS Public Engagement Award. @tuffrey-wijne.com #ddd17
So proud of my team that has co-produced an amazing end-of-life care planning toolkit! Find it here: www.victoriaandstuart.com
Anna Wilde@annawilde.bsky.social · 11mo agoThe ASDS Public Engagement Award has gone to the Victoria and Stuart Project @asdsdeath.bsky.social @ddd17-2025.bsky.social #DDD17 . Congratulations!
Got all excited to see this IKEA coffin at #ddd17 conference. A snip at €80. I want one! My family and friends can decorate it. I find the DIY approach helpful Then I discovered it was a hoax. Alas! Perhaps we should start a please-sell-affordable-coffins-on-the-high street movement?
Brilliant book. Stories about life, not death - because everyone who dies, even if they have no-one in their life (anymore) who can organise their funeral, has a story. Loved listening to Evie King at the #DDD17 conference book group yesterday. Her talk, like her book, made me laugh, cry - and think
Arrived at the DDD Conference (Death, Dying & Disposal) in Utrecht, Netherlands! Accompanied, as usual, by our team mascot Pierre Looking forward to hearing about research and experiences from cultures, societies and minoritised groups across the world #ddd17
Our new paper, about how we evaluated the end of life care planning toolkit with people with learning disabilities
The Victoria & Stuart Project@victstuproject.bsky.social · 12mo agoLink to paper here: journals.sagepub.com/doi/10.1177/... @andreabruun.bsky.social @tuffrey-wijne.com @nicolapayne21.bsky.social @meetmacintyre.bsky.social @dimensionsuk.bsky.social
Mo explains the #READYSTUDY www.youtube.com/watch?v=B6bi... Please do contact us for more information.
READY Study Information Video
YouTube video by Ready Study
youtube.com
Irene Tuffrey-Wijne@tuffrey-wijne.com · last yr.One of the studies we’re working on right now👇
Here’s my blog post 👇 Bringing back memories of the people in my study who died almost 20 years ago. I still remember them
The DAPPLE Project@dappleproject.bsky.social · 12mo ago🤗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-...
Here is the protocol for our current study bmjopen.bmj.com/content/15/7...
Developing service models for adult palliative and end of life care for people with a learning disability (The DAPPLE Project): protocol for a mixed-method study
Introduction People with a learning disability face significant health and mortality inequalities as well as wider systemic inequities. Challenges in palliative and end of life care (PEOLC) include co...
bmjopen.bmj.com