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

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

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

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...

Can’t believe it’s a year already! What a great project & great team

The DAPPLE Project@dappleproject.bsky.social

🎉 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...

bbc.co.ukAdults with learning disabilities die 20 years early, says reportPeople with learning disabilities and autism die almost 20 years younger than the rest of the population.

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.ukLearning 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.

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

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

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

🤗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-...

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...

channel4.comIs 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.

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!

The Victoria & Stuart Project@victstuproject.bsky.social

🎬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! 🕊️

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! 👇

The DAPPLE Project@dappleproject.bsky.social

💬 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...

I didn’t know much about conversation analysis, but it’s fascinating and useful!

The DAPPLE Project@dappleproject.bsky.social

📢 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

The DAPPLE Project@dappleproject.bsky.social

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👇

Jane Bernal@jane-bernal.bsky.social

"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?

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!

Freya’s full report about the numbers is going to be so interesting and important

The DAPPLE Project@dappleproject.bsky.social

🔢 NEW BLOG POST! 🔢 This week's post is from Dr Freya Tyrer who is crunching the numbers for DAPPLE. Freya introduces herself and her work here... www.dappleproject.com/post/21-all-...

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

The DAPPLE Project@dappleproject.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!

The Victoria & Stuart Project@victstuproject.bsky.social

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!

Irene Tuffrey-Wijne reposted

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 👏

The DAPPLE Project@dappleproject.bsky.social

🎧 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...