Written statement on The fourth annual report of the Learning Disabilities Mortality Review Programme - July 16

Addressing the persistent health inequalities faced by people with learning disabilities is a priority for this government and this report is an important contribution towards that.

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 NHS England and NHS Improvement.

As in previous years, the report makes a number of recommendations for Government and its system partners to improve the care of people with a learning disability which does not always meet the high standard we would expect for each and every individual. We must carefully consider these recommendations to better support those who need care and take the right action as soon as possible.

Earlier this year, we provided an update on action being taken in response to the third LeDeR report and any ongoing actions highlighted in previous years’ reports. This week, NHS England has also published its Action from Learning Report alongside the fourth LeDeR report, which sets out a range of work taking place to improve the safety and quality of care to reduce early deaths and health inequalities.

The fourth annual LeDeR report covers the period 1 July 2016 up to the 31st December 2019, with a particular focus on deaths in 2019. This means the report will not include reference to deaths from Covid-19, as the reviews it includes, and the analysis of them, were completed before the pandemic. From 1st July 2016 – 31st December 2019, 7145 deaths were notified to the LeDeR programme. 3450 of these were notified in 2019. In 122 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 ten recommendations for the health and care system, as follows:

1. A continued focus on the deaths of adults and children from BAME groups is required.
2. For the Department of Health and Social Care to work with the Chief Coroner to identify the proportion of deaths of people with learning disabilities referred to a coroner in England and Wales.
3. The standards against which the Care Quality Commission inspects should explicitly incorporate compliance with the Mental Capacity Act as a core requirement.
4. Establish and agree a programme of work to implement the from the ‘Best practice in care coordination for people with a learning disability and long term conditions’ (March 2019) report and liaise with the National Institute for Health Research regarding the importance of commissioning a programme of work that develops, pilots and evaluates different models of care coordination for adults and children with learning disabilities.
5. Adapt (and then adopt) the National Early Warning Score 2 regionally to ensure it captures baseline and soft signs of acute deterioration in physical health for people with learning disabilities.
6. Consider developing, piloting and introducing: Specialist physicians for people with learning disabilities who would work within the specialist multi-disciplinary teams; a Diploma in Learning Disabilities Medicine; and making ‘learning disabilities’ a physician speciality of the Royal College of Physicians.
7. Consider the need for timely, NICE evidence-based guidance that is inclusive of prevention, diagnosis and management of aspiration pneumonia.
8. Right Care to provide a toolkit to support systems to improve outcomes for adults and children at risk of aspiration pneumonia.
9. Safety of people with epilepsy to be prioritised. The forthcoming revision of the NICE Guideline ‘Epilepsies in children, young people and adults’ to include guidance on the safety of people with epilepsy, and safety measures to be verified in Care Quality Commission inspections.
10. For a national clinical audit of adults and children admitted to hospital for a condition related to chronic constipation.

The inappropriate use of Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) decisions is highlighted in this fourth report, as it has been previously. DNACPRs should never be used in a blanket way and this has been reiterated during the Covid-19 crisis through letters from the NHSE, including the NHSE Medical Director on 7 April 2020, and by the Secretary of State for Health and Social Care on 15 April 2020.

I am clear that we must tackle the issues raised in the LeDeR report to ensure the care that each individual deserves is provided. We will consider the report and its recommendations in more detail in the coming weeks, in order to determine the action that must be taken.