On 10 June, the University of Bristol published the LeDeR report for 2020.
Ivan Olbrechts, family and friends Rep Body member, has written a guest blog about the report and what it tells us.
A terrible truth to face if you have lived experience of, or family with learning disabilities, is that you will probably not receive the same quality of care as people without a learning disability, and worse, you may die much sooner as a result.
This unwelcome truth has been highlighted again by the latest Learning Disabilities Mortality Review (LeDeR) report by the University of Bristol.
The annual LeDeR report summarises the statistics and findings from NHS reviews following the deaths of people with a learning disability.
When it was launched, after a public inquiry into the premature and preventable deaths of people with learning disabilities, LeDeR was described as world’s first national programme of its kind with expectation that it would help improve healthcare.
The latest report describes an “encouraging picture” of improvement in the proportion of preventable, treatable and overall avoidable deaths (from 2018 to 2020) but it also highlighted that improvements are not experienced equally.
The report found:
Half of adult (20-74) deaths were preventable or treatable, or “avoidable.”
More than 1 in 3 child (age 4-19) deaths were preventable or treatable, or “avoidable.”
More than 2 in 5 people who died, didn’t receive care that met good practice standards.
Families raised concerns in more than 2 in 5 of the deaths.
Adults and children from Black/African/Caribbean/Black British ethnic groups, and mixed/multiple ethnicities had a higher proportion of treatable medical causes of death than people from other ethnic groups.
3 in 4 people with learning disabilities passed away with a DNACPR in place (2018-20) and more than 1 in 4 of those DNACPR decisions were found to be incorrectly completed (LeDeR report)
Accompanying the LeDeR report, the “Action from learning” report identifies some of the work across the NHS to address the findings from LeDeR reviews, improve care and prevent premature and avoidable deaths.
Officially “independent”, the £175M LeDeR programme has been described by some as the NHS ‘marking its own homework’ and having ‘no statutory authority or mandate to compel NHS organisations to act.’
The 2020 report is the last from the University of Bristol team. Whilst LeDeR continues to be led by the NHS, it now goes forward with new academic partners.
Kings College London, UCLan, Kingston and St George’s University of London, and London South Bank University will work with the NHS and an expert core group of six people with learning disabilities.
The six experts with learning disabilities will bring a critical and unique perspective to that mix and will work closely with self-advocacy groups.
Sadly, I find the report findings less “encouraging” and that improvement is far too slow and non-existent in some parts. However, I am heartened to note that people with learning disabilities and self-advocacy groups will be involved in this important work.
However, writing reports for the NHS is not the same as learning and changing – so I hope that the new format LeDeR programme will truly enable a step change in actions to prevent avoidable deaths.
About the LeDeR
Established in 2017 and funded by NHS England and NHS Improvement, it is the first of its kind and was created to improve care, reduce health inequalities and prevent people with a learning disability dying sooner than the general population.
From late 2021 LeDeR will include improving services for autistic people too.