• Midlands and South East of England trailing behind on national learning disabilities mortality review programme
  • More than a third of cases still to be allocated to clinician
  • NHS England told to support areas which are failing to deal with a backlog of reviews into deaths of learning disability patients

NHS England has been told to support areas which are failing to deal with a backlog of reviews into the deaths of learning disability patients, according to a new report.

The annual learning disabilities mortality review, leaked to HSJ ahead of official publication this month, has also found “significant variation and inconsistency” across regions, with the Midlands and East, and South East the worst performing areas.

The LeDer programme was launched following the death of 18-year-old Connor Sparrowhawk, to review the deaths of people with learning disabilities.

Since July 2016, the programme has been alerted to 4,302 deaths which require reviews. The latest annual report shows that three-quarters of reviews were outstanding at December 2018, down from around 90 per cent at December 2017. This year’s report also included a new figure, showing that 38 per cent of cases had still not been allocated to a reviewer.

It said: “Reviews were in progress for a third (37 per cent) of the notified deaths by the end of December 2018. However, 38 per cent of the deaths were still waiting to be allocated to a reviewer, indicating continuing and significant problems with the timeliness with which reviews of deaths take place.”

Last year’s report warned NHS and social care organisations were not able to prioritise the programme due to “stretched budgets”.

And, in January this year, HSJ revealed some clinical commissioning group areas were reporting significant backlogs in their reviews due to a limited availability of reviewers.

The latest report has recommended that NHS England provide CCGs with targeted support to complete reviews.

Other recommendations included a requirement for the Department of Health and Social Care to issue guidance for doctors that learning disabilities should never be an acceptable reason to apply a “do not attempt cardiopulmonary resuscitation order” to a patient.

This came as 19 reviews found “learning disabilities” had been recorded as a reason to not resuscitate. The Care Quality Commission has also been asked to identify and review DNACPR orders for people with learning disabilities, as part of their inspections.

In 8 per cent of completed reviews, care was found to have fallen so far short that it “significantly impacted” on the patient’s wellbeing or contributed to their death.

Care was found to have fallen short in a significant area in 9 per cent of cases.

Full list of recommendations

1. Consider designating national leads within NHS England and local authority social care to continue active centralised oversight of the LeDeR programme.

2. NHS England to support CCGs to ensure the timely completion of mortality reviews to the recognised standard.

3. There should be a clear national statement that describes, and references to relevant legislation, the differences in terminology between education, health and social care so that “learning disability” has a common understanding across each of the sectors and between children’s and adults’ services.

4. CCGs and local LeDeR steering groups to use local population demographic data to compare trends within the population of people with learning disabilities. They should be able to evidence whether the number of deaths of people from Black, Asian and Minority ethnic groups notified to LeDeR are representative of that area and use the findings to take appropriate action.

5. The DHSC and NHS England to support national mortality review programmes to work with “Ask, Listen, Do” and jointly develop and share guidelines that provide a routine opportunity for any family to raise any concerns about their relative’s death.

6. The DHSC, working with a range of agencies and people with learning disabilities and their families, to prioritise programmes of work to address key themes emerging from the LeDeR programme as potentially avoidable causes of death. The recommended priorities for 2019 include: i) recognising deteriorating health or early signs of illness in people with learning disabilities and ii) minimising the risks of pneumonia and aspiration pneumonia.

7. Guidance continues to be needed on care-coordination and information sharing in relation to people with learning disabilities, at individual and strategic levels.

8. Shortfalls in adherence to the statutory guidance in the special educational needs and disability code of practice in relation to identifying and sharing information about people with learning disabilities approaching transition, transition planning and care coordination must be addressed.

9. The Royal College of Paediatrics and Child Health to be asked to identify and publish case examples of best practice and effective, active transition planning and implementation for people with learning disabilities as they move from children’s to adults’ health services.

10. The DHSC, working with a range of agencies and the Royal Colleges to issue guidance for doctors that “learning disabilities” should never be an acceptable rationale for a Do Not Attempt Cardiopulmonary Resuscitation order, or to be described as the underlying or only cause of death on part I of the medical certificate cause of death.

11. Medical examiners to be asked to raise and discuss with clinicians any instances of unconscious bias they or families identify eg: in recording “learning disabilities” as the rationale for DNACPR orders or where it is described as the cause of death.

12. The CQC to be asked to identify and review DNACPR orders and treatment escalation personal plans relating to people with learning disabilities at inspection visits. Any issues identified should be raised with the provider for action and resolution.

 A spokeswoman for NHS England, said: “We expect nurses, doctors and other health and social care professionals to act on the findings of this report, which is the first programme of its kind the world. Nearly two thirds of all cases have now been completed or are underway so that local services can drive improvements in care and treatment.”

 This story was updated at 15:13 with a comment from NHS England.