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Irene Tuffrey-Wijne @tuffrey-wijne.com · 9d

Thank you for sharing!

WEBINAR: Talking about dying with people with learning disabilities

Irene Tuffrey-Wijne @tuffrey-wijne.com · 9d

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 · 12d

Missed our webinar? The recording is now on YouTube, so you can catch up!

youtu.be/AK_2EtY8VXo

YouTube video by Victoria & Stuart Project

youtu.be

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Irene Tuffrey-Wijne @tuffrey-wijne.com · 15d

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 · 16d

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 · 20d

Writing Retreats at Chapelgarth

Perfect venue for Group Accommodation, Residential Academic Retreats, Writing Retreats, Yoga Retreats, Family Celebrations. Venue Provider for HE UK Universities.

Irene Tuffrey-Wijne @tuffrey-wijne.com · 20d

Writing Retreats at Chapelgarth

Perfect venue for Group Accommodation, Residential Academic Retreats, Writing Retreats, Yoga Retreats, Family Celebrations. Venue Provider for HE UK Universities.

31. Better Care Before Death Group: Choosing our name, designing our logo

Irene Tuffrey-Wijne @tuffrey-wijne.com · 20d

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 · 20d

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 · 20d

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...

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...

30. Order your FREE printed end of life care planning toolkit!

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Irene Tuffrey-Wijne @tuffrey-wijne.com · 27d

Spread the word! 📣

www.dappleproject.com/post/30-orde...

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...

Blog 29. Happy first birthday to the DAPPLE Project!

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Irene Tuffrey-Wijne @tuffrey-wijne.com · Sep 4

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

The DAPPLE Project @dappleproject.bsky.social · Sep 4

🎉 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...

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 ...

Adults with learning disabilities die 20 years early, says report

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Irene Tuffrey-Wijne @tuffrey-wijne.com · Sep 3

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 with learning disabilities and autism die almost 20 years younger than the rest of the population.

www.bbc.co.uk

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Irene Tuffrey-Wijne @tuffrey-wijne.com · Sep 2

“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 · Sep 2

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

LeDeR 2023 REPORT

YouTube video by Staying Alive and Well

youtu.be

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Irene Tuffrey-Wijne @tuffrey-wijne.com · Sep 2

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

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

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Irene Tuffrey-Wijne @tuffrey-wijne.com · Sep 1

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

FREE end of life care planning toolkit sent to your door

YouTube video by Victoria & Stuart Project

youtu.be

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Irene Tuffrey-Wijne @tuffrey-wijne.com · Aug 30

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 · Aug 29

"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

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Irene Tuffrey-Wijne @tuffrey-wijne.com · Aug 29

So proud of my team that has co-produced an amazing end-of-life care planning toolkit! Find it here:
www.victoriaandstuart.com

Anna Wilde @annawilde.bsky.social · Aug 29

The ASDS Public Engagement Award has gone to the Victoria and Stuart Project @asdsdeath.bsky.social @ddd17-2025.bsky.social #DDD17 . Congratulations!

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Irene Tuffrey-Wijne @tuffrey-wijne.com · Aug 29

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 · Aug 28

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 · Aug 27

Not to be missed!

The Victoria & Stuart Project @victstuproject.bsky.social · Aug 19

📣 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...