Irene Tuffrey-Wijne
Professor of Intellectual Disability and Palliative Care (Kingston University, London). Let’s talk about dying, death, bereavement and intellectual/learning disability.
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- 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-...
- 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
- 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
- Spread the word! 📣 www.dappleproject.com/post/30-orde...
- Can’t believe it’s a year already! What a great project & great team
- 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
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- So proud of my team that has co-produced an amazing end-of-life care planning toolkit! Find it here: www.victoriaandstuart.com
- 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
- Not to be missed!
- 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
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- Here’s my blog post 👇 Bringing back memories of the people in my study who died almost 20 years ago. I still remember them
- 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...
- Lights, camera, action! Who said a university researcher’s job is boring? We’re buzzing after the most amazing film-making training. We love making videos to get our messages out, and these few days will transform it
- 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!
- 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! 👇
- 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!
- Why it’s useful to figure out who our stakeholders are: Here’s a blog I wrote a few weeks ago
- One of the studies we’re working on right now👇
- 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...
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- Freya’s full report about the numbers is going to be so interesting and important
- 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
- 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!
- 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
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- 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 👏
- We're in such good company with these other amazing projects shortlisted for the award! Check them out: @deadgoodlegacies.bsky.social @deathstudiespod.bsky.social
