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Learning Disabilities Mortality Review Programme

Volume 660: debated on Tuesday 21 May 2019

I am announcing today the publication of the third annual report of the Learning Disabilities Mortality Review Programme (LeDeR). A copy has been deposited in the Libraries of both Houses.

The LeDeR programme was established in June 2015 to help reduce early deaths and health inequalities for people with a learning disability by supporting local areas in England to review the deaths of people with a learning disability and to ensure that the learning from these reviews lead to improved health and care services. The programme is led by the University of Bristol and commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England.

It finds that the quality of care offered to people with a learning disability sometimes falls short of the standards we expect. The existence of LeDeR programme testifies to our commitment to ensure that people with learning disabilities can access the best possible quality care and support.

Since the second LeDeR report was published in May 2018 the Government and its system partners have continued to make progress to implement the recommendations in that report.

To support delivery of the LeDeR programme in 2018-19, NHS England allocated an additional £1.4 million to support local areas to better establish their review programmes and reduce the backlog of reviews.

In November 2018, I wrote to health and social care employers to remind them of their statutory obligations in terms of staff training. We have also consulted on introducing mandatory learning disability and autism training to ensure that staff across health and social care have the right skills and knowledge to provide better support and will announce our next steps following analysis of the responses.

Work also continues on the inclusion of a digital flag in the records of people with a learning disability and autism to share information across health and care organisations and in the NHS Long-Term Plan we have committed to implementing this by 2023-24.

NHS England have also today published its “Action from Learning” report, which highlights the considerable work underway which will have a positive impact on the safety and quality of care to reduce early deaths and health inequalities.

The third annual LeDeR report covers the period 1 July 2016-31 December 2018, with a particular focus on deaths in 2018. From 1 July 2016-31 December 2018, 4,302 “in-scope” deaths were notified to the LeDeR programme. The majority of these (2,926) were notified in 2018. In 71 of the cases reviewed, people received care that fell so far short of expected good practice that it significantly impacted on their well-being or directly contributed to their cause of death.

Based on the evidence from completed LeDeR reviews, the report makes twelve recommendations for the education, health and care system which include:

Support for CCGs to ensure the timely completion of mortality reviews

Support to recognise deteriorating health in people with learning disabilities

Care co-ordination

Transition planning for young people

I am particularly concerned at the evidence the review presents of occasional poor practice in doctors giving the fact that a person has a learning disability or Down’s syndrome, as a rationale for a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) order. To address this, the NHS medical director has written to senior doctors and nurses, the British Medical Association and the medical royal colleges to ensure that doctors are reminded that a patient having a learning disability can never be an acceptable reason for a DNACPR and that they must avoid this form of discrimination. People with a learning disability have the same right to enjoy a meaningful life as anyone.

While the increase in the number of reviews carried out is welcome, we acknowledge that the pace with which reviews are conducted needs to increase. I am pleased that NHS England have today announced a further £5 million to speed up reviews to ensure that they are carried out as quickly and as thoroughly as possible.

It is essential that we take all necessary actions to learn from the issues raised in the LeDeR report. We will consider the report and its recommendations in the coming weeks and consider the recommendations in due course.