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Following the publication of the third annual report from the Learning Disabilities Mortality Review (LeDeR) Programme on 21 May 2019, and the statement I made at the time, I am today pleased to be publishing the Government’s response to that report. A copy of the response is attached.
The LeDeR programme was established in 2015 to help reduce early deaths and health inequalities for people with a learning disability by supporting local areas in England to review the deaths of people with a learning disability and to ensure that the learning from these reviews lead to improved health and care services. The programme is led by the University of Bristol and commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England.
The programme has found that the quality of care offered to people with a learning disability sometimes falls short of the standards we expect. The existence of the LeDeR programme demonstrates our ongoing commitment to ensure that people with learning disabilities can access the best possible quality care and support.
The third annual LeDeR report covers the period 1 July 2016 – 31 December 2018, with a particular focus on deaths in 2018. From 1 July 2016 – 31 December 2018, 4,302 ‘in-scope’ deaths were notified to the LeDeR programme. The majority of these (2,926) were notified in 2018. In seventy-one of the cases reviewed, people received care that fell so far short of expected good practice that it significantly impacted on their well-being or directly contributed to their cause of death.
Based on the evidence from completed LeDeR reviews, the third annual report Report made twelve recommendations for the education, health and care system. As I said at the time of the LeDeR report’s publication it is essential that we take appropriate actions to learn from the issues raised by the LeDeR programme. In the Government’s response, we have set out how we and our system partners are taking action to deliver the improvements to services that will make a real and significant difference to people's lives. Actions identified relate to reviewing guidance; publishing new data on the progress of LeDeR reviews and sharing best practice.
In November, we set out our most significant action in response to the third annual LeDeR report, when we committed to introduce the Oliver McGowan Mandatory Training in Learning Disability and Autism for all health and social care staff. This training is named after Oliver McGowan, in recognition of his story, his family’s tireless campaigning for better training for staff, and to remember him and others whose lives were cut tragically short.
The Government remains committed to gather learning from deaths reviewed under the LeDeR process ensuring that measures are put in place to address the persistent health inequalities that people with learning disabilities experience. Since the start of the LeDeR programme, nearly 3,200 reviews have been completed and over 2,700 are currently in progress. And while increases in the number of reviews carried out is welcome, we acknowledge that the pace with which reviews are conducted needs to increase further.
The LeDeR programme was introduced to ensure local, evidence-based action is taken to improve support for people with a learning disability, and while we clearly have a great deal further to go to improve outcomes, we must continue to build on the momentum of the past five years and work together to learn from the past. Our response published today sets out how we will do that.