The 2024 Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) report (See also United Response Easy Read LeDeR) has been released, marking the final publication in its current form. It shows areas of improvement but also stark, persistent inequalities that demand national attention.
The 2024 report tells us:
• Avoidable deaths among adults with a learning disability have fallen to 39%, down from 46.3% in 2021, yet avoidable deaths remain almost twice as common as in the general population (39% vs 21.1%).
• The median age at death for people with a learning disability is 62.8 years — a 19‑year gap compared with the general population.
• Over 56% of people with a learning disability died before age 65, compared with 14.8% of the general population.
• Respiratory infections, ischaemic heart disease and epilepsy account for one‑third of all avoidable deaths.
• Treatable causes of death — those preventable through timely healthcare — remain the biggest driver of inequality.
For the first time, the report includes dedicated analysis of adults with Down syndrome:
• Median age at death: 59.8 years
• 39.8% had a recorded dementia diagnosis
This is vital insight and highlights the need for better, earlier and more consistent support.
The report shows improvements in:
• vaccination coverage
• epilepsy management
• reasonable adjustments
• quality indicators across health and social care
These are meaningful steps forward. But they don’t yet close the gap.
The part we should all be worried about
This is the final LeDeR academic report.
Future monitoring will move into a new GP‑extracted dataset covering learning disability, autism and ADHD. While this may improve data quality in the long term, it also means the annual national spotlight on premature and avoidable deaths will disappear.
And that’s a problem.
LeDeR reports have been one of the few mechanisms consistently exposing the scale of inequality faced by people with a learning disability. They have driven national conversations, influenced policy and kept pressure on systems that too often fail to deliver equitable healthcare.
Without a public annual report:
• Will these inequalities stay visible?
• Will accountability weaken?
• Will the urgency fade?
There is a real risk that the lives and deaths of people with a learning disability, already disproportionately overlooked, become even easier to ignore.
We can’t let this be forgotten
The 2024 findings show progress, yes. But they also show injustice. People with a learning disability continue to die younger, more often from preventable causes and with poorer access to timely healthcare.
The end of LeDeR reporting must not mean the end of scrutiny.
As a sector and as a society we need to keep these inequalities in view, keep asking difficult questions, and keep pushing for change. Because visibility drives action. And action saves lives.
Samantha Leonard
ARC England Director
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