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Irene Tuffrey-Wijne

@tuffrey-wijne.com
1.1K followers 398 following 160 posts

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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Reposted by Irene Tuffrey-Wijne
Paradigm @paradigmuk.bsky.social · 30/12/2025
@tuffrey-wijne.com
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 06/12/2025
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
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 01/12/2025
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
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 14/10/2025
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
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 13/10/2025
“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-...
dappleproject.com
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.
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 02/10/2025
www.dappleproject.com/post/33-how-...
dappleproject.com
33. 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 ...
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 29/09/2025
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
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 27/09/2025
Missed our webinar? The recording is now on YouTube, so you can catch up! youtu.be/AK_2EtY8VXo
youtu.be
WEBINAR: Talking about dying with people with learning disabilities
YouTube video by Victoria & Stuart Project
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 24/09/2025
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
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 22/09/2025
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
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 18/09/2025
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!
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 18/09/2025
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
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 12/09/2025
Spread the word! 📣 www.dappleproject.com/post/30-orde...
dappleproject.com
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...
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 04/09/2025
Can’t believe it’s a year already! What a great project & great team
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 03/09/2025
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...
bbc.co.uk
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.
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 02/09/2025
“It’s very important that people read this report”. Find it here: www.kcl.ac.uk/research/leder
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 02/09/2025
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
youtu.be
LeDeR 2023 REPORT
YouTube video by Staying Alive and Well
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 02/09/2025
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
kcl.ac.uk
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.
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 01/09/2025
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
youtu.be
FREE end of life care planning toolkit sent to your door
YouTube video by Victoria & Stuart Project
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 30/08/2025
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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Reposted by Irene Tuffrey-Wijne
Association for the Study of Death and Society @asdsdeath.bsky.social · 29/08/2025
"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
ASDS logo. Text: The Victoria and Stuart Project, 2025 ASDS Public Engagement Award winner.
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 29/08/2025
So proud of my team that has co-produced an amazing end-of-life care planning toolkit! Find it here: www.victoriaandstuart.com
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 29/08/2025
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?
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 28/08/2025
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
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 27/08/2025
Not to be missed!
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 27/08/2025
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
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 27/08/2025
Our new paper, about how we evaluated the end of life care planning toolkit with people with learning disabilities
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Reposted by Irene Tuffrey-Wijne
Jane Bernal @jane-bernal.bsky.social · 15/08/2025
Mo explains the #READYSTUDY www.youtube.com/watch?v=B6bi... Please do contact us for more information.
youtube.com
READY Study Information Video
YouTube video by Ready Study
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 22/08/2025
Here’s my blog post 👇 Bringing back memories of the people in my study who died almost 20 years ago. I still remember them
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 15/08/2025
Here is the protocol for our current study bmjopen.bmj.com/content/15/7...
bmjopen.bmj.com
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...
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 15/08/2025
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...
dappleproject.com
26. Lights, Camera, Action! Filming the Print and Deliver Video
One of many reasons I love working in the Learning Disability Research Team at Kingston University is because we are – as Irene Tuffrey-Wijne calls us – “a think-outside-the-box team”. And while I hav...
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 24/07/2025
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
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 19/07/2025
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...
channel4.com
Is government ‘sitting on’ damning report into learning disabled people’s deaths?
The health secretary is under growing pressure to release a long-delayed report into the deaths of learning disabled and autistic people in England.
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 18/07/2025
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!
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 15/07/2025
Taking delivery of some new work-related props… watch this space! @kingstonuniversity.bsky.social @mariecurieuk.bsky.social @andreabruun.bsky.social
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 10/07/2025
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! 👇
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 04/07/2025
This is what a truly inclusive and accessible conference looks like! www.youtube.com/watch?v=84Wi...
youtube.com
Palliative Care for People with Learning Disabilities Conference 2025
YouTube video by The DAPPLE Project
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 03/07/2025
I didn’t know much about conversation analysis, but it’s fascinating and useful!
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 01/07/2025
Why it’s useful to figure out who our stakeholders are: Here’s a blog I wrote a few weeks ago
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 30/06/2025
One of the studies we’re working on right now👇
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 30/06/2025
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...
soundcloud.com
Ep. 14: Jane Hargreaves
New Episode: Supporting Students with Purpose – A Conversation with Jane Hargreaves In this episode, Richard speaks with Jane Hargreaves, Student Engagement Manager at Kingston University and recipie
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Reposted by Irene Tuffrey-Wijne
Andrea Bruun @andreabruun.bsky.social · 27/06/2025
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!
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 26/06/2025
Freya’s full report about the numbers is going to be so interesting and important
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 24/06/2025
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
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 20/06/2025
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
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 14/06/2025
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
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 14/06/2025
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!
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 31/05/2025
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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Reposted by Irene Tuffrey-Wijne
The DAPPLE Project @dappleproject.bsky.social · 15/05/2025
🗨️ 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.com
17. Richard appears on The Sui-Ling Show
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 appeared as a guest on MacIntyre's The Sui-Ling Show!Sui-Ling is a mem...
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Irene Tuffrey-Wijne @tuffrey-wijne.com · 23/05/2025
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 👏
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