Today saw the publication of the 2021 Learning from lives and deaths – People with a learning disability and autistic people (LeDeR) annual report as well as the 2021/22 Action from Learning report. You’ll find links to both reports at the end of this article.
The 2021 Learning from lives and deaths – People with a learning disability and autistic people (LeDeR) annual report’s findings make sombre reading. Every death included in the report relates to an individual with their own life story who leaves behind a gap in their community and friends and family who mourn their loss.
On average, men with a learning disability or who are autistic die 22 years younger than men from the general population, and women 26 years younger than women from the general population. Half of the deaths covered by the report were avoidable.
In 70% of the cases reported to LeDeR, people received some good care (for example, people received annual health checks and services from learning disability liaison services). However, concerns about care were raised in around 30% of cases.
We are particularly concerned that some paid support staff found it difficult to notice when people were ill and sometimes health care staff did not make the necessary reasonable adjustments.
The 2021/22 Action from Learning report showcases some of the national and local action over the past 12 months across health and social care services in response to learning from LeDeR reviews and to recommendations from the previous LeDeR academic partner, The University of Bristol. It also provides updates on the commitments that were made in the last Action report.
In the year ahead the LeDeR team will take action in the following key areas:
- Work with the cancer and cancer screening programmes to ensure that they understand the factors influencing avoidable deaths from cancer including prevention and treatment and determine actions to target awareness raising.
- Work with the end of life care team, the CQC and others to further promote the use of appropriate documentation for DNACPR across all services over and above the SNOMED code for DNACPR documentation which is now in place.
- Roll out quality improvement initiatives for the respiratory projects which will be completed this year around pneumonia to support pathway change and improvement.
- Understand the prevalence of circulatory conditions as a cause of death and work with the CVD programme to take appropriate actions to tackle hypertension and CVD in people with a learning disability.
- Consider the findings of the hospital passport digital discovery work to understand the best way to ensure that more people with a learning disability and autistic people have hospital passports which are taken account of when accessing health care.
- Work with partners to support more carers / staff to be trained in the soft signs of deterioration.
- Develop advice and support on sleep apnoea and continuous positive airway pressure machine usage (CPAP).
- Deliver a social media campaign around constipation co-produced with people with lived experience and their families and carers and general practice staff.
We will continue to feed back to, engage with and challenge NHS England and the Department of Health and Social Care on these commitments; and we will be studying the LeDeR report closely in the coming days.
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Links to the reports:
There are easy read versions of both reports. Click the links below to access all the reports and associated resources.
2021 Learning from lives and deaths – People with a learning disability and autistic people (LeDeR)