Flagship death review programme had ‘unclear and limited’ impact

A report into the national learning disability mortality review programme (LeDer) has criticised it for failing to impact improvement of services both nationally and locally.

The national LeDer programme was launched in 2015 after high profile failures by Southern Health Foundation Trust to investigate the deaths of patients with learning disabilities.

Since its launch, the programme has consistently struggled to carry out the number of reviews required, with the backlog growing to 3,800 last year.

The news follows a year of increasing concern over the disproportionate death rate for those with learning disabilities during the pandemic.

The report looking at the programme, written by Ipsos Mori, was published on NHSE’s website yesterday, but has since been removed following enquiries by HSJ. You can read a download of it here.

At a national level, the report says the programme’s “impact on policy-making was unclear, and probably limited”, while locally it criticised variation in clinical commissioning groups’ application of LeDer.

It added the programme had focussed heavily on completing reviews and identifying problems which had not resulted in improvement to services.

In response to the report, NHSE has set out a new policy for the programme, which clarifies that responsibility for local implementation will pass to integrated care systems once they are fully established in law.

It also says people with autism will be included within the programme’s scope, which follows criticism of how deaths of people with autism were only reviewed if they also had a learning disability.

ICSs will need to ensure they have local governance groups established by May 2021, and that all reviews are completed within six months of notification. They must also measure the programme’s impact on services, among other requirements.

The University of Bristol has so far been responsible for the LeDer programme, which includes collecting death notifications and alerting CCGs to those that require a review. The organisation was also responsible for publishing an annual report detailing overarching themes from the reviews.

However, NHSE’s contract with the university ends in April. The national commissioner said it has yet to award a new contract. However South West Commissioning Support Unit, will provide the new web-platform which will be used to notify deaths to the programme.

Meanwhile, the North of England Commissioning Service was commissioned in 2019 to help deal with the backlog of reviews.

The University of Bristol, the Department of Health and Social Care and NHSE were approached for comment.

This story was updated at 17:35 on 25 March, after additional information on the role of SWCCSU within the LeDer programme and to clarify the end date of the contract with University of Bristol.