57. “Far too many people with a learning disability are still dying too young. Why is this not headline news?”
- Irene Tuffrey-Wijne
- 6 days ago
- 4 min read
This is how the Staying Alive and Well group started their foreword to the 2024 LeDeR report, which was published this week. LeDeR looks at the deaths of people with a learning disability and autistic people. Funded by NHS England and NHS Improvement, the death review data are analysed by a consortium led by Kings College London. The three of us at Kingston University are part of that consortium. Our job was to bring together a group of people with a learning disability from across England, to think about the findings and coproduce accessible versions of the report.
We have been meeting with members of the Staying Alive and Well group every month for the past five years. We think together about what is in the report. For this latest report, that was information about 3,395 people with a learning disability who died. Here are some of the things our group wrote in their foreword (you can watch a video of the full foreword here).
The numbers in this report are not just numbers for us. This is very real to us. This is about people. People dying too young: that could be us… Our voices are important because we can tell people what it’s like not to have the same support and care as everyone else. Sometimes we are discriminated against or not taken seriously. That makes us angry and upset.
We have worked on the LeDeR report for almost five years now... We are still shocked that we haven’t moved on that much. Every year, working on the report is difficult. It makes us think about our own lives and about our friends. It’s scary to think what might happen to us.
In this year’s report, we read that people with a learning disability died 19 years younger. It’s a big shocking gap. Everyone should read this report, because it can open your eyes to the problems we are still in.
Don’t stop looking at this because that puts us back in the dark. Don’t look away however uncomfortable it makes you feel. It may seem like we’re not getting anywhere but we want you to keep reporting and reviewing the deaths of people with a learning disability. Our lives matter. Please listen, and then DO something!
Strong words.
Doing the DAPPLE Project alongside our work with LeDeR has been quite powerful, because they complement and inform each other. In LeDeR, we hear about the numbers. We hear that over half of all people with a learning disability never make it to their 65th birthday (whilst only 15% of people without a learning disability die younger than 65). We learn that 39% of their deaths are avoidable, and whilst that figure is coming down slowly, it’s still almost twice as high as in the general population.
In DAPPLE, we learn more about the stories. We spend time with people who are at the end of their life, some of whom have died. None have been older than 69. We have listened to families and carers who told us about times when the person was not being helped to eat or walk when they were in hospital (“he was lucky to come out alive”); when treatment that would (parents suspected) be routinely offered to a non-disabled person wasn’t offered to their severely disabled son; when communication between services failed, or the person was stuck in limbo whilst services argued over who would pay for their care.
We have also seen outstanding care and commitment, from families, from learning disability staff, from hospital staff, from palliative care nurses. DAPPLE really helps us to learn about what works well, and how people and systems can provide the best possible support. That, too, is reflected in the LeDeR report. Whilst the problems and the inequities are huge, most people did have at least some good care.
There are important stories in the LeDeR reviews too. LeDeR reviewers across the country spent time to gather information about the people who died, from families and care staff, from the person’s notes. Unfortunately, these stories do not shine through in the LeDeR reports – a missed opportunity, as we could learn so much more. As part of DAPPLE, we were able to look in-depth at 100 LeDeR reviews of people with a learning disability who had six or more long-term health conditions when they died. We did a qualitative thematic analysis of what the reviewers had written in the reports about these people’s deaths. Hopefully, the findings will be available soon – we have just submitted it for publication.
The end of LeDeR?
LeDeR is not perfect, but it does have national and international standing. Whilst it is upsetting that change is so slow, it does provide us with continued evidence that change is needed. It really worries us, therefore, that we don’t know what will happen after this report. It was our last one. Our contract with NHS England is coming to an end, and it has not been put out to tender again.
We really do need to keep the focus on the scandal of so many people with a learning disability dying too young. LeDeR has provided us with important evidence about things going wrong, and has helped to show where care and treatment is below standard. DAPPLE builds on this by trying to understand how systems, organisations and individuals can do better.
Since we started to work together on the annual LeDeR reports, Richard has been saying that reporting and reviewing the deaths of people with a learning disability should be made mandatory (it never has been, so the picture has always been incomplete). We are watching this space.
Will the world stop looking at this? Will people with a learning disability be put back in the dark?
Comments