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LeDeR Programme: Progress update

9 May 2018

The LeDeR team based at the University of Bristol remain committed to supporting local areas to conduct mortality reviews of people with learning disabilities, and to share information about those deaths to help improve service provision.

Since it started in 2015, the programme has worked with families, professionals and policy makers to develop and roll out a review process for the deaths of people with learning disabilities and has helped to implement the new review process.

It has collated and shared the anonymised information about the deaths of people with learning disabilities so common themes, learning points and recommendations can be identified and taken forward into policy and practice improvements.

The recently published LeDeR annual report 2016-17 (easy read) (PDF, 674kB) presented information about deaths of people with learning disabilities to the end of November 2017 and was delivered to HQIP and NHS England in December 2017.

It outlined some of the challenges in implementing the mortality review process across England, and the findings to-date. It is a factual, evidence-based report updating our knowledge about the potentially avoidable contributory factors leading to the deaths of people with learning disabilities.

As we point out in the report, many of these issues, and our recommendations, echo those of previous reports of deaths of people with learning disabilities dating back more than a decade. The questions raised in the House of Commons on 8 May and the corresponding answers, suggested the publication date of the report had been decided by the LeDeR team at the University of Bristol. This was not the case. All communication about the report, prior to and subsequent to its publication, was directed by NHS England, as was the date of its publication.

The number of completed reviews prior to November 2017 was limited as is evidenced in the report. Over recent months the number of completed reviews has been increasing. In April we received 55 completed mortality review reports. We are now starting to collect more evidence about the impact of the review process – notably actions that are being taken locally as a result of the mortality reviews.

The focus of our work over the coming year will be to collate and share examples of such actions. Some actions are already taking place at national level, for example the engagement with the national sepsis programme to focus on identifying and responding to sepsis in people with learning disabilities.

By looking in detail at a local level on the circumstances leading to each death, those responsible for commissioning and delivering local services should be better able to identify ways of improving services locally in response to review findings.

It is not just about gathering more learning; it is about sharing what has worked well and doing our absolute best to implement service improvements that will reduce the currently unacceptable situation in which disabled people experience such huge health disparities and such a significant difference in their age at death compared with the general population.

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