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LeDeR: Learning from the Lives and Deaths of People with a Learning Disability and Autistic People
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North East Stop People Dying Too Young Group have their say on LeDeR
The average age of death for an autistic person in England is 53, and 63 for a person with a learning disability, according to the most recent LeDeR report.
North East Stop People Dying Too Young Group, facilitated by PEN member Inclusion North, has responded to the report and are currently in consultation with its authors to address the health inequalities it brings to light.
What Is LeDeR?
LeDeR stands for ‘learning from life and death reviews’.
It is a programme established in 2017 and funded by NHS England and NHS Improvement. It publishes an annual report, conducted by Kings College London, to provide information about the lives and deaths of people with a learning disability and autistic people, with the aim of improving their healthcare.
The data published in the most recent report was collected in 2022 and released at the end of 2023.
Stop People Dying Too Young Group’s Findings
North East Stop People Dying Too Young Group has accumulated five years’ experience of working to help end health inequalities for people with a learning disability and autistic people.
The group is made up self-advocates and family carers who meet monthly in support of this aim.
In response to the 2022 LeDeR Annual Report:
- The group were particularly concerned that Cerebral Palsy is being recorded as a cause of death. Campaigners have worked hard to prevent Down’s Syndrome from being reported as a cause of death and so the group saw inaccurate recording of Cerebral Palsy as a cause of death as a contradictory and a backward step.
- People from Black, Asian and minority ethnic backgrounds are at risk of dying younger than white people, but North East Stop People Dying Too Young Group found that the 2022 LeDeR report contained less information on this compared to reports in previous years. The group are now working to raise awareness of the health inequalities experienced by ethnic minority groups in their own work.
- They argue that not enough is being done to investigate the deaths of autistic people. Autistic people were only included in the Leder programme from 2022, and since then not enough has been done to raise awareness that autistic people are now included in the programme. Consequently, very few autistic deaths were reported to Leder in 2022, and so there is too little data to really draw definite conclusions about the health inequalities autistic people face. The North East Stop People Dying Too Young Group advocates for an awareness raising campaign to ensure that far higher number of reviews into deaths of autistic people are done to understand what needs to change to end these health inequalities.
- The group were frustrated by the lack of acknowledgement in the report of the 14% of people whose care contributed, or had the potential to contribute, to the cause of death. The report showed that 18% of people had care and support packages that did not meet their needs and 25% of people did not get the reasonable adjustments they needed.
- Gaps in the report were found, including information on the number of people who had died that had been prescribed anti-psychotic medication. In previous reports this was around 25% which the group felt was a high figure and should continue to be reported on.
Find North East Stop People Dying Too Young Group’s full response to the 2022 LeDeR Annual Report here.
Next steps
North East Stop People Dying Too Young Group have engaged with King’s College London and NHS representatives from the North East and Cumbria areas responsible for LeDeR governance in response to the 2022 report.
The group are also working closely with people who have lived experience to highlight the health inequalities faced by people from Black, Asian and minority ethnic backgrounds.
Over the summer, they plan to produce a podcast to speak openly and in plain English about death, grief and end of life planning. They hope to help people to become more confident having these conversations. They are also working with the folk band O’Hooley and Tidow who they have commissioned to write a song to be the soundtrack to their work this year as they continue to speak up about health inequalities for people with a learning disability and autistic people.
You can keep up to date with North East Stop People Dying Too Young Group’s work here.
