• Fewer than one in ten deaths of people with learning disabilities have been subject to a new review process
  • Providers have blamed “overstretched budgets and the pressures on staff time”, a new report reveals
  • The Learning Disabilities Mortality Review programme published its first annual review today
  • Warns that many problems today have been identified a decade ago

Fewer than one in ten deaths of people with learning disabilities have been subject to a new review process, with providers blaming “overstretched budgets and the pressures on staff time”, a new report reveals.

The Learning Disabilities Mortality Review Programme published its first annual review today, which includes several recommendations for different parts of the health system in relation to premature mortality.

The LeDeR programme was commissioned in 2015, as part of a response following the death of Connor Sparrowhawk, a teenager with learning disabilities and epilepsy who drowned in a bath at a unit operated by Southern Health Foundation Trust in 2013 following a seizure.

The programme was notified of 1,311 deaths between July 2016 and November last year, but by November had only completed and approved reviews of 103 of these – fewer than one in 10 – according to the report.

It says delivering the reviews quickly enough is a “significant challenge” because of the large number needing to be carried out before capacity was in place; a lack of people trained to do them; reviewers getting time away from other work; and the “process not being formally mandated”.

The report adds: “Some participating NHS and social care organisations have made it clear that, because of their present overstretched budgets and the pressures on staff time, contributing to LeDeR could not be prioritised as we would all like.”

NHS England said more was being spent to speed up reviews.

All deaths of people with learning disabilities are now notified to the LeDeR programme, and receive an initial review, with some escalated to a full multi-agency review or a multiagency review and expert panel scrutiny, the report said. It is not known how many of the 1,311 reported to the programme by November had or have been escalated.

National officials have described the programme as the “first comprehensive, national review set up to get to the bottom of why people with learning disabilities typically die much earlier than average, and to inform a strategy to reduce this inequality”.

The report says that in 13 of the finished reviews the person’s health had been “adversely affected” by “delays in care or treatment, gaps in service provision, organisational dysfunction, or neglect or abuse”.

It also warns that its findings from the 103 completed reviews echo failings found previously overat least ten years.

It says: “Most of the learning from mortality reviews presented in this annual report echoes that of previous reports of deaths of people with learning disabilities, with the same issues repeatedly identified as problematic over the past decade or so.

“These same issues are being raised as problematic in LeDeR reviews some 10 years after coming to public attention in [Mencap’s] Death by Indifference [report].”

It highlights that past reports have also flagged up a lack of understanding of learning disabilities and of the law about capacity and consent to treatment.

It sets out nine recommendations for NHS England, other commissioners and providers, including:

  • strengthening collaboration and information sharing across different providers;
  • furthering integration of health and social care records;
  • providing all people with learning disabilities with two or more long-term a local, named, health care coordinator;
  • mandatory training for all staff – both clinical and non-clinical; and
  • further training and audit about the Mental Capacity Act 2005.

The report says: “Today, people with learning disabilities die, on average, 15-20 years sooner than people in the general population, with some of those deaths identified as being potentially amenable to good quality healthcare.

“The future focus of the LeDeR programme will be to move beyond ‘learning’ into ‘action’ to support improved service provision for meeting the health and care needs of people with learning disabilities and their families.

“The LeDeR programme’s success will be determined by the ability of commissioners and providers of services to convert learning and recommendations from completed reviews into service improvements.”

NHS England said in a statement that some of the recommendations for it had already been met, or were being worked on. It said it was already working on electronic integration and adherence to the Mental Capacity Act, and it supports mandatory learning disability awareness.

A spokeswoman said: “These early lessons will feed into hospital and community services’ work including early detection of symptoms of sepsis, pneumonia prevention, constipation and epilepsy, where there is significant progress.

“Another £1.4m more will be spent this year so that those responsible locally - as well as the University of Bristol and HQIP nationally – can ramp up the speed and number of their reviews over the coming year.”

A DHSC spokesman said: “Clearly there is still more work to do – NHS England must ensure they take forward the recommendations of their world leading review.”