Irene Tuffrey-Wijne reposted
Irene Tuffrey-Wijne
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.
1.1K followers398 following160 posts
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-...
Missed our webinar? The recording is now on YouTube, so you can catch up! youtu.be/AK_2EtY8VXo
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
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
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...
Spread the word! 📣 www.dappleproject.com/post/30-orde...
Can’t believe it’s a year already! What a great project & great team
🎉 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...
“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
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
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
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
Irene Tuffrey-Wijne reposted
Replying to @asdsdeath.bsky.social
"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
The ASDS Public Engagement Award has gone to the Victoria and Stuart Project @asdsdeath.bsky.social @ddd17-2025.bsky.social #DDD17 . Congratulations!
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
Irene Tuffrey-Wijne reposted
Mo explains the #READYSTUDY www.youtube.com/watch?v=B6bi... Please do contact us for more information.
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
🤗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...
Not long now before we launch this video about the new service delivering our free end-of-life care planning toolkit to your door! www.dappleproject.com/post/26-ligh...
More shocking stories about avoidable deaths. Excellent reporting by Ruben Reuter: "Cases like Nigel are exactly why the LeDeR reports exist, shining a light on failings and pushing for change. But this year it still hasn't been published." www.channel4.com/news/is-gove...
What's not to like? We had such fun at work yesterday - and in a few months' time, you'll be able to order print copies of our End of Life Care Planning picture resources for free!
🎬THAT'S A WRAP🎬 Yesterday we recorded a video for our brand-new Print and Deliver project. We have partnered up with Marie Curie UK to offer printed copies of the toolkit resources for free. This means that later this year you'll be able to get our resources delivered directly to your door! 🕊️
Taking delivery of some new work-related props… watch this space! @kingstonuniversity.bsky.social @mariecurieuk.bsky.social @andreabruun.bsky.social
CTIMPs, IG lead or PICs, anyone? No, I didn’t speak that language either. And I’m a professor. We’re having to do some heavy- duty jargon-busting in our study! 👇
💬 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...
This is what a truly inclusive and accessible conference looks like! www.youtube.com/watch?v=84Wi...
I didn’t know much about conversation analysis, but it’s fascinating and useful!
📢 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...
Why it’s useful to figure out who our stakeholders are: Here’s a blog I wrote a few weeks ago
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...
One of the studies we’re working on right now👇
"How can you prepare for dying if nobody has worked out you are dying?" was the searching question from a researcher with learning disabilities in an earlier study at Kingston University, @tuffrey-wijne.com How might busy GPs, families, & care staff get better at working it out?
Why do some university students struggle to attend, and how can you help them?Another great podcast from Richard! @kingstonuniversity.bsky.social soundcloud.com/cuppa-tea-wi...
Irene Tuffrey-Wijne reposted
Last year I was so lucky to be awarded one of the Kingston University First Grants Schemes🌠My project is a small-scale Conversation Analysis pilot study where I'm video-recording conversations between patients with a learning disability and hospice staff. Read all about it in our new protocol paper!
Today's Yellow Tulip Group (our monthly learning disability research meeting) felt a bit like a trip to the hairdresser. Trying to set a good example as we'd instructed everyone to bring something green to the Zoom screen! @kingstonuniversity.bsky.social
Look, a conference about dying, death & learning disability can be joyous and inclusive! Yesterday, we listened, shed tears and danced. Thank you everyone who helped make this happen! #PCPLD2025 @kingstonuniversity.bsky.social @dappleproject.bsky.social
Lock your passport inside your house, miss your flight but still get there, give a talk to 2000 people as you’ve won a European award, present a prize-winning poster and keep smiling: all in a few days’ work for Andrea!👇 @andreabruun.bsky.social @eapcvzw.bsky.social @kingstonuniversity.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...
Can’t wait to launch this free service when you’ll be able to order free printed copies of the end of life care planning toolkit!
We are very busy setting up our new Marie Curie funded study! In this project, we are working together with Marie Curie to see if their free "Print & Deliver" service can help people getting hold of our toolkit resources 🕊️ Watch this space!
Hugely proud of Dr Andrea Bruun, who won the EAPC Early Researcher Award - and presented to an audience of 2000! @andreabruun.bsky.social @eapcvzw.bsky.social @kingstonuniversity.bsky.social
Irene Tuffrey-Wijne reposted
🗨️ 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...
Such a lovely blog about an even lovelier podcast. It was a joy to be a fly on the wall for this heart-warming conversation between Richard and Mel! Well done Richard 👏
🎧 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...