30 November 2023
The Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) annual report for 2022 was published today. The report is available here, including easy read versions.
The LeDeR programme carries out a vital function. The lives (and therefore the circumstances surrounding the death) of anyone who has a learning disability is extremely important, especially where we can learn from these and make improvements to the care and support of people, helping them to live longer and healthier lives.
We are concerned that people who have a learning disability are still dying, on average, 20 or so years younger than the general population. It is also unacceptable that people who have a learning disability are twice as likely to die from an avoidable cause than people who do not have a learning disability.
There are numerous positive developments to take from this annual review. The average age of death of people who have a learning disability has risen since 2017 and the proportion of avoidable deaths has dropped. It is also encouraging to note the proportion of people who died who didn’t receive any good care has significantly dropped. However, these statistics are still far too high and any deaths that happen as a result of receiving a poor standard of care are unacceptable.
We are members of the Independent Advisory Group of the LeDeR programme and look forward to continuing to work with the programme team in looking in more detail at what this report tells us. For example, it is clear that further research is needed into the experiences of ethnic minority people who have a learning disability.
It is clear that making reasonable adjustments is a key factor in contributing to the quality of health care an individual who has a learning disability receives. In order to progress further on this issue we have been involved with the NHS Digital Flag project, which asks people who have a learning to disability to consent to having a marker added to their medical record alerting relevant health and care staff, including paramedics, NHS111 and hospital staff what reasonable adjustments they need. We also continue our engagement work with ICBs across England in the provision of targeted training and support in this crucial area.