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The Government response to the Learning Disabilities Mortality Review (LeDeR) Programme Second Annual Report

1. The Learning Disabilities Mortality Review (LeDeR) programme was established to support local areas across England to review the deaths of people with a learning disability, to draw out learning from those deaths and to put that learning into practice. We want all local areas to improve the quality of the health and social care services provided to people with a learning disability, and to address the persistent health inequalities they face. LeDeR is the first national programme in the world set up to systematically review the deaths of all people with a learning disability aged four years and above which are notified to it and to embed mortality review processes across the country. Following the publication of the report of the Confidential Inquiry into Premature Deaths of People with a Learning Disability (CIPOLD)1 in 2013, the Norah Fry Centre for Disability Studies at the University of Bristol, which led CIPOLD, was commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England to establish the LeDeR programme with the intention of ensuring that all local areas in England have their own mortality review programmes in place by 2017. Work on the LeDeR programme began in June 2015, initially for a three year period.

2. This programme is taking place within the context of a sharper focus on learning from all deaths. The Care Quality Commission’s (CQC) report of December 2016, Learning candour and accountability,2 recommended that Trusts needed to prioritise learning from deaths of people with a learning disability. A National Learning from Deaths Programme Board was established to oversee progress made against this recommendation and the other recommendations made by the CQC as part of a Learning from Deaths Programme. A key objective of this programme is to ensure greater scrutiny of care for people with a learning disability and mental health needs, in all healthcare settings. The key recommendation was addressed when the National Quality Board published National Guidance on Learning from Deaths3 in 2017. This guidance emphasises the importance of learning from reviews of the care provided to people who subsequently die, and establishes that all in-patient, out-patient and community patient deaths of people with a learning disability should be reviewed.

3. In June 2018, the Government published a response to a consultation on the introduction of medical examiners and the reforms of death certification in England and Wales.4 This sets out the intention to introduce a system of medical examiners in England. Medical examiners will reinforce the work of the Learning from Deaths programme and enhance patient safety by scrutinising every death that is not considered by a coroner, improving the accuracy of death certification and strengthening arrangements for the bereaved to raise any concerns.

4. The second annual report5 of the LeDeR programme, covering the period July 2016 to November 2017, was published by the University of Bristol in May 2018. It provided nine key recommendations based on the evidence from the 103 reviews completed within the reporting period. By November 2017 the programme was not fully operational in all Clinical Commissioning Group (CCG) areas, although all but two of the 39 steering groups had been established. Since publication of the report, all steering groups have now been established. As of August 2018, 476 reviews have been completed with a further 261 completed reviews in the Quality Assurance process, a total of 737 completed reviews (compared to 103 reviews completed in the period covered by the second annual report).

5. Acknowledging that there are reviews still to be completed, NHS England has allocated an additional £1.4 million to support local CCGs delivering the programme, to ensure that reviews of deaths notified to the programme are completed in a timely manner. Supporting learning disability premature mortality reviews features in the NHS 2018-19 planning guidance, Refreshing NHS Plans for 2018/196 published in February 2018. This guidance directs CCGs to report on supporting reviews of deaths of patients with a learning disability, as described in the National Guidance on Learning from Deaths. The 2017/19 NHS Standard Contract has also been altered to instruct Trusts to comply with the National Guidance, which clearly directs the review of all learning disability deaths.

6. The issues and causes of death identified within the second annual report reflect the many challenges that people with a learning disability face. There is much work already underway to improve access to healthcare and to address inequality for people with a learning disability. Through the development of new tools to support practitioners, and new resources to develop skills and awareness, we are creating a culture within health and social care of improved access, and vigilant and proactive support for people with a learning disability. But there is clearly more to do.

7. The following sections set out our formal response to each of the national recommendations of the LeDeR programme’s second annual report. The LeDeR programme does not review deaths of people with autism if they do not also have a learning disability; however, many of the actions in this response will also benefit people with autism.

8. Although the LeDeR programme was commissioned on behalf of NHS England, the recommendations are aimed at the wider health and care system as a whole. This response is therefore produced jointly by the Department of Health and Social Care (DHSC) and NHS England with crucial support from arm’s length bodies, including Health Education England, NHS Digital, the CQC and NHS Improvement.