The CBF's statement on preventable deaths of people with learning disabilities
The CBF joins more than 40 organisations and campaigners calling on the Government to take action to ensure people with learning disabilities do not die early, preventable deaths
Last week, ITV News reported how Myles Scriven, an autistic man with a learning disability, died a preventable death after multiple opportunities to save his life were missed.
Among the failures that contributed to Myles’ preventable death was a lack of understanding of learning disabilities, autism, and the Mental Capacity Act. Myles had difficulties with communication, understanding information, and making decisions, but despite this information being known to the professionals involved in his healthcare, Myles’ family – who were also his medical advocates – were not contacted, preventing them from being able to support him. Reasonable adjustments were not made, and assumptions about why Myles was not recovering from a blood clot were made without basis.
This tragedy is far from unique. The NHS 10 Year Plan, published earlier this month, highlights that people with learning disabilities die on average 20 years younger than people without a learning disability.
People with a learning disability have been known to face serious health inequalities for more than 20 years. The LeDeR programme – learning from lives and deaths of people with a learning disability and autistic people – was established in 2015 to identify the health inequalities that people with a learning disability face, but over the decade since LeDeR was established, progress on addressing the health inequalities that face people with a learning disability and autistic people has been far too slow. The most recent report, looking at deaths of people with a learning disability and autistic people in 2023, is more than eight months overdue.
We have signed a joint letter coordinated by Autism Action calling on the Government to not only publish the currently overdue LeDeR report, but to commit to prioritising addressing the health inequalities faced by people with a learning disability and autistic people.
A report by Channel 4 News into preventable deaths of people with a learning disability and autistic people, broadcast on Thursday, highlighted both the delays to the LeDeR report and the impact of falling numbers of learning disability nurses. In 2024, the Royal College of Nursing found that since records began in 2009, the number of learning disability nurses employed by the NHS has fallen by 44%, with significant decreases in both the number of courses running and students on these courses.
Watch the Channel 4 News report
In their foreword to the most recent published LeDeR report, the Staying Alive and Well Group – a group of people with a learning disability who informed the authors of the LeDeR report – highlighted that progress has been too slow. They described the 2022 report as the “Spot the Difference” report, because “we are saying the same things year after year after year”. It is not enough to simply report on the health inequalities that people with a learning disability and autistic people face – these findings need to be translated into action.
The Government has a real opportunity with the 10 Year Plan to address these health inequalities so that people with a learning disability do not continue to die preventable deaths. We urge the Secretary of State and the Department of Health and Social Care to ensure that the LeDeR programme not only continues, but is strengthened. Action must be taken to ensure that people with learning disabilities do not die early or experince preventable deaths.
The CBF’s resources and statements
You can read our statement on the 2022 LeDeR report here
The CBF has a range of resources on health and care, which you can read below.
Read our information and guidance on health
Read our information and guidance on reasonable adjustments
Read our information and guidance on getting the right support package
Read our resource sheet on learning disability nurses
The Co-Produced, Lifelong Action Plan has a section on health which sets out actions that tackle the health inequalities people with learning disabilities face
Health – Actions for Policy Makers
Support from The CBF
Resources on our website
The CBF has information available for anyone who has concerns about poor support or abuse which can be found here:
Family Support Service
If you have been affected by any of the issues raised in this report, you can call the Family Support Service on 0300 666 0126
Or email us at support@thecbf.org.uk
We are open at the following times:
Monday – Thursday: 9am – 5pm
Friday: 9am – 3pm
We offer information about challenging behaviour to anyone who provides support to a child, young person or adult with a severe learning disability. We can also signpost you to other specialist organisations and sources of information.
Please note we are a small support service so you may not be able to get support straight away. We will support families with urgent concerns as a priority.
Professionals are also welcome to contact The CBF.