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

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.

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

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

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

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
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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

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