The LeDeR programme, funded by NHS England, started in 2017. It aims to improve healthcare for people with a learning disability and autistic people.
LeDeR have released a new report and video. It is called ‘Learning from Lives and Deaths – people with a learning disability and autistic people’.
The report looks at how many autistic people or people with a learning disability died in 2022, and whether these deaths could have been avoided.
Some things meant it was more likely for people with learning disabilities to die younger, including being from an ethnic minority or having health conditions like epilepsy.
But nearly half of the deaths that occurred in people with learning disabilities were preventable.
This means some people died for reasons that may have been stopped if they’d had better care.
Most people who died had a long-term condition, but some people died from illnesses like Covid or Flu.
Some people with learning disabilities also died in the summer of 2022 when there was a heatwave.
People with learning disabilities need extra protection from very hot weather.
The LeDeR report shows that more people had some good care, but not all their care was good, and not all staff knew how to care for someone with a learning disability.
Learning Disability England wants all people with a learning disability to have good care, so that they can live longer.
There are some actions that can be taken to help people with a learning disability to get good care, and to live longer.
Having support to go to health checks, vaccination clinics and extra support to manage a long-term condition are a few simple actions that can help to save lives.
Learning Disability England knows from speaking to members, that appropriate care packages can be hard to get.
The LeDeR report shows that good quality care packages that meet a person’s needs are associated with a lower risk of dying too soon.
Kate Chate is a member representative for Learning Disability England.
She said “This evidence, hopefully, can help people – especially people with mild learning disabilities – to secure care packages that meet their needs who currently may not have as much support with accessing healthcare.”
Scott Watkin BEM is a member representative for Learning Disability England.
He has made a statement about the findings of the LeDeR report.
Scott says “It is very upsetting to see that not much has really changed since the LeDeR 2021 Report, and that people with learning disabilities are twice as likely to die before their time”
Every year NHS England writes a report with King’s College London about the LeDeR programme. This is called the ‘Action from Learning’ report.
This report is to help health and care staff learn more about how to stop people with a learning disability and autistic people from dying too young.
The Action From Learning Report says that reasonable adjustments can lower the risk of people becoming very unwell or dying too young.
You can read the Action From Learning report here.
A reasonable adjustment can be something like people with a learning disability or an autistic person having treatment before a person that is non-disabled.
A non-disabled person is half as likely to die a preventable death.
Learning Disability England would like to see more health and care organisations providing reasonable adjustments.
This is to make sure that people with learning disabilities have access to information and treatments that will reduce their risk of dying too young.
There are some good things within the LeDeR Report, but there is still more work to be done to stop people with a learning disability dying too soon.
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People working in care and support roles should take action and make special plans for people with a learning disability and autistic people, to help keep them healthy.
We can all make a difference to share information that helps to reduce the risk of people with a learning disability from dying too soon.
Reading the LeDeR report and the Action From Learning report is a good first step in helping to take action towards making a positive change.
This will help change the way that those with a learning disability and autistic people are cared for, and may save lives.