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.
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
shorturl.at/YCDmW
October 14, 2025 at 8:12 PM
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
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-...
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.
www.dappleproject.com
October 13, 2025 at 6:29 AM
“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-...
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
September 29, 2025 at 5:13 PM
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
WEBINAR: Talking about dying with people with learning disabilities
YouTube video by Victoria & Stuart Project
youtu.be
September 27, 2025 at 5:46 AM
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
@mariecurieuk.bsky.social
September 24, 2025 at 5:47 AM
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
@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
shorturl.at/LgOPC
September 22, 2025 at 7:37 AM
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
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!
September 18, 2025 at 6:48 PM
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
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...
Read Richard’s blog here
👉 www.dappleproject.com/post/31-bett...
31. Better Care Before Death Group: Choosing our name, designing our logo
In 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...
www.dappleproject.com
September 18, 2025 at 6:19 PM
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
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...
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...
Blog 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 ...
www.dappleproject.com
September 4, 2025 at 10:15 PM
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...
"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.
www.bbc.co.uk
September 3, 2025 at 10:53 AM
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...
"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
September 2, 2025 at 4:01 PM
“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
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
September 2, 2025 at 3:54 PM
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
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
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
September 2, 2025 at 3:51 PM
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
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
(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
September 1, 2025 at 6:53 AM
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
(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
@asdsdeath.bsky.social
@victoria&stuart project
August 30, 2025 at 11:23 AM
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
@asdsdeath.bsky.social
@victoria&stuart project
Reposted by Irene Tuffrey-Wijne
"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
The Victoria and Stuart Project wins the ASDS Public Engagement Award. @tuffrey-wijne.com #ddd17
August 29, 2025 at 4:55 PM
"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
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
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!
August 29, 2025 at 9:54 PM
So proud of my team that has co-produced an amazing end-of-life care planning toolkit! Find it here:
www.victoriaandstuart.com
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?
Then I discovered it was a hoax. Alas! Perhaps we should start a please-sell-affordable-coffins-on-the-high street movement?
August 29, 2025 at 1:25 PM
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?
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
August 28, 2025 at 9:20 PM
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!
📣 WEBINAR TIME 📣
Join us for a webinar to launch the new Print & Deliver service on Tuesday 23 September at 1pm. Bring a friend and spread the word!
Register here:
events.teams.microsoft.com/event/4df2b3...
Join us for a webinar to launch the new Print & Deliver service on Tuesday 23 September at 1pm. Bring a friend and spread the word!
Register here:
events.teams.microsoft.com/event/4df2b3...
August 27, 2025 at 9:45 PM
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
Looking forward to hearing about research and experiences from cultures, societies and minoritised groups across the world
#ddd17
August 27, 2025 at 11:37 AM
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
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
Link to paper here: journals.sagepub.com/doi/10.1177/...
@andreabruun.bsky.social @tuffrey-wijne.com @nicolapayne21.bsky.social @meetmacintyre.bsky.social @dimensionsuk.bsky.social
@andreabruun.bsky.social @tuffrey-wijne.com @nicolapayne21.bsky.social @meetmacintyre.bsky.social @dimensionsuk.bsky.social
Sage Journals: Discover world-class research
Subscription and open access journals from Sage, the world's leading independent academic publisher.
journals.sagepub.com
August 27, 2025 at 6:33 AM
Our new paper, about how we evaluated the end of life care planning toolkit with people with learning disabilities
Reposted by Irene Tuffrey-Wijne
Mo explains the #READYSTUDY www.youtube.com/watch?v=B6bi...
Please do contact us for more information.
Please do contact us for more information.
August 15, 2025 at 2:10 PM
Mo explains the #READYSTUDY www.youtube.com/watch?v=B6bi...
Please do contact us for more information.
Please do contact us for more information.