• New figures reveal 3,802 deaths were yet to be reviewed by the national learning disability mortality review programme
  • Figure grew since May when NHS England committed to “address” a backlog problem
  • Charity says it ”undermines” the programme

A backlog of thousands of deaths of people with learning disabilities awaiting official review has grown further, despite NHS England committing in spring last year to “address” the buildup. 

Information obtained by HSJ shows the number of incomplete reviews increased slightly between May and November last year – from 3,699 to 3,802.

The “national learning disabilities mortality review” programme – known as LeDeR – was launched in 2016 and is meant to review all deaths of people aged four and over.

Under the system, coordinated at the University of Bristol, reviews are meant to be carried out within six months of the relevant clinical commissioning group being notified of the death.

There has been criticism about a growing backlog and in May, after the publication of the annual report on the programme, NHS England and Improvement announced they would provide an extra £5m in 2019-20 to “address the backlog of unreviewed cases and increase the pace with which reviews are allocated and completed”.

NHS England subsequently commissioned North of England Commissioning Support Unit to provide CCGs with support to help deal with their cases.

However, the new figures, provided to HSJ by the university under freedom of information rules, show an increase in the subsequent six months, of 2.8 per cent.

CCGs reported a year ago that they were having difficulties managing the process, with some raising concerns over the lack of available reviewers.

The university told HSJ that 201 reviewers had completed training between June and November 2019 – adding to the 1,963 qualified reviewers available in May.

This does not necessarily mean the newly trained reviewers have been able to begin work, however.

NHS England, responding to HSJ when asked about the issue, said that as of November, there were 1,823 reviews in progress and more than 3,000 had been completed.

Mencap head of policy and public affairs, Dan Scorer, said: “It is unacceptable that thousands of deaths have still not been reviewed despite NHS England announcing further funding to make sure all reviews were carried out quickly and thoroughly. These latest figures show that little progress has been made; the programme is still failing to address outstanding reviews as well as keep pace with incoming referrals.

“Behind these figures are families whose loved ones’ deaths may have been potentially avoidable and they have a right to know that health and care services are learning and acting on LeDeR reviews’ recommendations.”

In August 2019, NHS England commissioned a new independent review into the death of teenager Oliver McGowan, after it was revealed that staff at Bristol, North Somerset and South Gloucestershire CCG rewrote parts of the LeDer review of his death.

Speaking with HSJ, Oliver’s mother Paula McGowan called for an independent body to take over the LeDer process.

She said: “I do think we need a far greater commitment from NHS England. Also, the government needs to be putting pressure on NHS England to make sure they are taking this seriously and putting the right resources in place.

“If they really believe in preventing these deaths, equality of care for people with learning disabilities – and may I add autism – they’ve got to take it seriously.

“Ultimately it is appalling we have well over 1,500 learning disability deaths a year, and LeDer is the only tool we have to tackle that. It is vital in reducing these deaths.”

In a statement, a spokeswoman for NHS England and Improvement said: “Over 3,000 reviews have been completed and nearly 2,000 are in progress, and - after a £5m cash injection - local areas are ramping up capacity in order to help improve care for people with a learning disability.”

The regulators declined to say how much of the £5m announced in May had been spent with the CSU, which is helping with the process, due to ”commercial sensitivity” but said they expected reviews to be able to be completed within six months by the end of 2020.

NHSE is expected to publish regional performance on completing reviews later in the year, as part its “learning disability dashboard”.

This story was updated at 17:10 to include a statement from NHS England.