NEWS

Bild welcomes publication of delayed LeDeR report

The delayed ‘Learning from lives and deaths – People with a learning disability and autistic people’ (LeDeR) report has now been published by King’s College London. An easy read version of the report is also available.

Bild welcomes the release of this long overdue, vital annual report.

The LeDeR report reviews the healthcare received by people with learning disabilities or autistic people after their death, to identify lessons and improve services. This is crucial for identifying ways to address and reduce health inequalities.

Avoidable deaths

While the report shows that there has been a small, continued decline in avoidable deaths since 2021, a positive trend, it further details persistent inequalities experienced by people with learning disabilities and autistic people.

Key findings are that the rate of avoidable deaths for people with a learning disability in 2023 was nearly double that of the general population. The average (median) age at death for people with a learning disability in 2023 was 62.5 years, around 20 years lower than the general population. In addition, the rate of people with a learning disability dying of a treatable cause was more than three times that of the general population, highlighting an urgent need to address this continued disparity.

Health Inequalities

The report also shows further inequalities experienced by people with a learning disability in their experience of and access to care and treatment, and that for too many people, reasonable adjustments were not provided.

The report further shows stark inequalities experienced by people with a learning disability from ethnic groups with people from all ethnic groups experiencing a much lower average age at death (up to 19.5 years for Asian and Asian British people with a learning disability) than white people with a learning disability. These people died almost 40 years earlier than the general population, of avoidable causes.

Experiences of autistic people

This is only the second year the report has included autistic adults without a learning disability, a development we welcome. The report shows that more than half of the autistic people reported to LeDeR experienced mental health challenges. The most common cause of death for autistic adults in the report was suicide, misadventure or accidental death, ahead of physical health conditions. However, it is important to note that numbers reported to the programme were low, and so it is difficult to reach full conclusions.

Social care support

The report also indicates that in a quarter of cases, the social care support package for the person who died did not meet their needs, suggesting that a significant number of adults with a learning disability who died in 2023 did not have adequate support in place.

In addition to improvements within the NHS, further progress is needed within the social care sector to address the inequalities experienced by people with a learning disability.

It is essential that the LeDeR initiative is sustained in the long term to monitor and learn from avoidable deaths for both people with learning disabilities and autistic people. Timely production and reporting on reliable data is essential to this effort.

Bild’s Learning Disability Advisor, Kate Brackley, said:

The easy read LeDeR report was to the point and it explains everything really clearly. The average age that people die is now 63, this is still a low number and it needs to improve, because we can’t have any more people dying at an early age. Cancer screening is really important as lots of people are dying of cancer and other illnesses that could be treated. People are not getting enough reasonable adjustments and I think they should take the Oliver McGowan training so they know how to support people properly in hospitals and at the doctors. For me, reading the LeDeR report it has a big shock factor to open your eyes to the fact that people are dying younger. But it also teaches us about what can be done to make things better. 

Bild’s Programme Lead for Health Inequalities and Coproduction, Lindsey Allen, said:

Yet again the LeDeR report shows us the stark inequalities faced by people with a learning disability and autistic people. Whilst there are some small improvements in certain areas, the reality experienced by many people and particularly those from Black, Asian and minority ethnic communities is simply not good enough. We know that people with learning disabilities experience multiple health conditions and services need to adapt to their needs. Again, LeDeR has highlighted that social care support has a role a play in improving health outcomes for people with learning disabilities and we need to make sure that the sector responds to this challenge.