STUART TODD

The BBC item is based on this report www.gov.wales/sites/defaul... Premature death is often avoidable death

Anableddau dysgu: Bywydau 'ddim mor bwysig i ni fel cymdeithas' Mae angen gwneud mwy i fynd i'r afael â marwolaethau cynnar ymhlith pobl ag anableddau dysgu, medd ymgyrchwyr.

Oeddech chi'n gwybod nad yw pobl ag anabledd dysgu yn byw cyhyd ag y dylent?

Yng Nghymru mae'r rhan fwyaf o bobl ag anabledd dysgu yn marw tua 67 oed. Mae hyn oherwydd eu bod yn cael gofal iechyd gwaeth na phobl eraill.

Stori lawn @bbcwales.bsky.social yma:
www.bbc.co.uk/cymrufyw/ert...

Early deaths of people with learning disabilities 'shocking' People with learning disabilities die 20 years earlier than others.

Did you know people with a learning disability don't live as long as they should?

In Wales most people with a learning disability die around age 67. This is because they get worse healthcare than other people.

Easy English @bbcwales.bsky.social available: www.bbc.co.uk/news/article...

Many people with learning disabilities live to be older that 67. Sadly too many die, and too often, many years before then. People with learning disabilities are not living as long as they should and this is not inevitable- it can be improved.

Early deaths of people with learning disabilities 'shocking' People with learning disabilities die 20 years younger than those without, data shows.

the link to the full story is here www.bbc.co.uk/news/article...

Early deaths of people with learning disabilities 'shocking' People with learning disabilities die 20 years earlier than others.

Very important piece on BBC news Wales- if we were to take ending premature mortality of people with learning disabilities in Wales to be a sole ambition what would happen next? eur03.safelinks.protection.outlook.com?url=https%3A...

Home Recognising Approaching Dying in Adults with a Learning Disability

This a great resource - really helping 'where to begin and what to talk about' worries. When to begin? Most adults with LD die less anticipated deaths - can we improve time left to talk and plan? What are we missing? www.readystudy.uk

YouTube video by Victoria & Stuart Project FREE end of life care planning toolkit sent to your door

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

📢 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/ioppn/assets... #LeDeR
@kingsioppn.bsky.social

An important first question- its signifies "I want to know and I am listening!"

But more simply - if the lives of people with a learning disability count and are valued then so do their deaths, If deaths dont count can lives matter? 2/2

its still too unusual for people to ask me why I do the research I do- yes Ive been a learning disability researcher all my working life but why death and dying and learning disability? I could provide a long answer bringing in history and sociology - and if you ask me for that I will. 1/2

Hugely awe-inspiring; Sadly probably no-one else has had more to do with bereaved family carers than @georgejulian.bsky.social - a difficult population to identify but one that has important lessons for our study- avoidable deaths might also have a dying that was not recognised
.

So, in the first place we'll be interviewing family & paid carers. Then we'll be discussing the issues in a focus group of GPs & another of specialists in either Palliative Care or Learning Disability services. We're recruiting for the interviews now. Please take a look at the flyer.

We know it's pointless trying to add to the workload of busy GPs. We wonder if simple changes in what they already do, might help improve the quality of people's lives, right up to the end. The research is funded by Marie Curie & based at the Universities of South Wales, Southampton & Kingston.

"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?

Sudden deaths are more common but even when a person has been ill for many months and has had several hospital admissions, those close to the person may not realise they could be dying. Cancer, which has a more predictable trajectory, is less often the cause of death.

Background. People with learning disabilities experience inequitable access to health service throughout their lives, extending to the very end of their lives. They are more likely to die young, from causes that could have been prevented. See for example @aliveleder.bsky.social

Excited to be starting the next stage of our research. The READY study is now at the point where we are looking for people to interview. The poster we co-produced for a Conference back in December outlines the way the study will work. More info, QR code & flyer in the thread 1/6

Thank you for sharing this- we are very keen for people to share their experiences with us- although it is difficult topic to discuss our team will do this in a sensitive way- thank you