Cloverleaf Advocacy has been helping people to #BeHeard for more than 30 years, including people with learning disabilities and neurodivergent people, through its advocacy and peer support services.
The latest LeDeR report was issued last week, after being postponed in December due to discrepancies in the data. The report was originally scheduled for publication in 2024, nearly two years ago.
The LeDeR report examined data from 2023, and the reissued report revealed that a significant number of potentially avoidable deaths of people with learning disabilities were incorrectly recorded. This highlights ongoing failures to address the healthcare inequalities faced by people with a learning disability and autistic people.
The report also found that 3,556 people with a learning disability died in 2024. Tragically, four out of every ten of these deaths could have been prevented through routine annual health checks, which can detect conditions such as lung issues, bowel cancer, heart disease, and diabetes at an early stage. The rate of avoidable deaths for people with a learning disability is double the rate of the general population.
Our Kirklees Involvement Network, Calderdale Self Advocacy Network, Talking Lincs, and Lead the Way services for people with learning disabilities have been highlighting the importance of annual health checks through targeted projects and by working alongside local authorities, but these can only be effective when people are genuinely listened to, and their voices are acted upon.
Another concerning finding highlighted in the LeDeR report is that autistic adults have a higher proportion of deaths by suicide compared with both people with a learning disability and the general population. While it is true that autistic people often face mental ill health, the report has faced some criticism that it was weighted disproportionately towards adults with a learning disability and therefore only a small number of autistic adults were reported on, so the figures may not fully represent autistic people.
A troubling theme of the report was that both people with learning disabilities and autistic people reported receiving inadequate care from healthcare providers, experiencing delays in treatment, encountering barriers due to inaccessible communication, and facing a lack of reasonable adjustments to meet their needs.
Following an increase in referrals from neurodivergent people contacting the Cloverleaf Health Complaints team about inaccessible healthcare services, we carried out our own research. This research echoes many of the concerns raised in the LeDeR report.
15% of the neurodivergent people we surveyed said they had their reasonable adjustments declined and half of them (50%) said they didn’t feel comfortable asking for reasonable adjustments as they didn’t want to make a fuss.
Suzi Henderson, CEO of Cloverleaf Advocacy, said: “We are deeply concerned by the misreporting in the LeDeR report. People with a learning disability and autistic people continue to face significantly higher risks of poor health outcomes and persistent health inequalities. This is completely unacceptable – particularly when so many of the deaths could have been preventable.
Urgent action is needed to ensure that everyone can #BeHeard and receives the care, support and reasonable adjustments they are entitled to — so that no one is left behind.”
To read the LeDer report in full visit: kcl.ac.uk/ioppn/assets/pdfs/leder/2023-final-updated.pdf
