62. Looking ahead to our final year
It's hard to believe that the DAPPLE project is now in its final year! We've been busy over the past two years, working hard to understand happens when people with a learning disability come to the end of their lives, and how we can improve their care.
We've already learned a lot, and we're excited about what comes next!
What have we done so far?
Our team has been working in lots of different ways to understand what good palliative and end-of-life care looks like, and what needs to change.
Looking at the big picture: international, national and local
We reviewed existing research from across the world.
We looked at health records from across England to understand when people with a learning disability are recognised as needing palliative care.
We have spoken to people in different regions, who plan and organise services about how care is provided.
Looking at the person
We also time with people with learning disabilities, their families and the staff who support them. So far, our researchers have spent over 250 hours with them, in their homes, day centres, in hospitals and hospices. It’s been a huge privilege and often deeply moving. They wrote these stories down and shared them with the Better Care Before Death group, our amazing group of people with a learning disability, who have helped us to understand what “good care” looks like and what can make things difficult.
Finding new ways of doing things
When people with learning disabilities approach the end of life, their needs often change, so it helps to have a plan. To make a plan, you need to notice that the person may need palliative care or end-of-life support. Often, this is noticed too late. We thought about this with people with a learning disability, families and health and social care professionals. Together, we developed an approach to identifying when someone’s health is getting worse and they might be likely to die in the next year.
Telling people what we have been doing
We have shared our work through blogs and webinars, and by talking with people who are interested in improving care.
What's happening in our final year?
Find out even more information…
We will keep spending time with more people with a learning disability receiving palliative care, their families and staff. We are also speaking to more people who plan and manage services.
We'll also be testing our new way to help families and support staff notice when someone's health is getting worse, so they can get the right support earlier.
…and put it all together
One of our biggest tasks will be using everything we've learned to develop ideas for how services could better support people with a learning disability at the end of their lives.
We’ve been gathering so much information, it’s easy to feel overwhelmed. One of our colleagues with a learning disability put it into words perfectly, when we brought 13 researchers together to look at everything we found:
“It feels like we’ve been paddling in the shallow and, but now we are thrown in the deep end and we’re drowning!”
But we will all learn to swim in the year ahead. Several of us are hiding ourselves away for a while, making time to read and re-read all the stories and interviews. We will have more days with the big DAPPLE team to talk about it.
Create resources
We'll be working with people with learning disabilities, families and professionals to create useful, accessible resources and recommendations. These will include training for health and social care staff and resources for people with learning disabilities and their families.
We are working with Books Beyond Words to create new pictures that show “Good Care Before Death”, led by the Better Care Before Death group.
We'll also be sharing our findings at conferences, talking to organisations that can help put them into practice, and holding a final (and free) DAPPLE conference on 9th September 2027 to bring everyone together (put it in your diary! There will be a chance to join online if you can’t come to Kingston).
Thank you!
None of this would be possible without the people who have shared their experiences, helped shape our research and supported the project so far.
We're looking forward to a busy and exciting final year, and most importantly, to making sure what we've learned can help improve care for people with a learning disability.
Keep an eye on our website for updates!
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