Learning Disabilities Mortality Review Programme: Fifth Annual Report

Thursday 10th June 2021 Written Statements

[The Minister for Care (Helen Whately)]

I would like to acknowledge today the publication of the fifth annual report of the learning disability mortality review (LeDeR) programme, now known as “Learning from lives and deaths—People with a learning disability and autistic people” by the University of Bristol. A copy will be deposited in the Libraries of both Houses.

Sadly, as set out in today’s report, we know that some people with a learning disability have died from covid-19, and this report provides moving, personal stories of some of those who lost their lives. My deepest sympathies are with their families and loved ones.

This annual report recommends that the needs of people with a learning disability should be built into the national policy response by the Department of Health and Social Care (DHSC) in the case of future emergency health situations. This is absolutely essential, and throughout the covid-19 pandemic, we have taken action to protect people with a learning disability and used emerging evidence to inform our policy response. For example, in October, we added adults with Down’s syndrome to the clinically extremely vulnerable list following the identification of an elevated risk of severe outcomes for this group of people. And the Joint Committee on Vaccines and Immunisation added people with severe and profound learning disabilities to group 6 for the vaccine, and people with Down’s syndrome to group 4.

We value the insight that the LeDeR programme has brought us during the challenging time we have all faced over the past year. We have been able to use data from the LeDeR covid-19 report to inform our response to the pandemic. I would like to take this opportunity to thank the team at the University of Bristol for their invaluable work over the past years on the LeDeR programme. Past reports have prompted action across the health and care sector, including the trialling of the Oliver McGowan mandatory training in learning disability and autism.

Today’s report makes several recommendations for Government and their system partners to help to improve the care of people with a learning disability. We remain absolutely committed that people with a learning disability should, and must, receive high quality care which will in turn reduce preventable deaths and health inequalities.

NHS England has published its “Action from Learning” report alongside the fifth 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. We welcome the ongoing invaluable work by NHS England, including during the covid-19 pandemic, in this area.

The Government’s focus in 2020 was on the covid-19 response, and our priority was to protect people’s lives. We will publish a response to both the fourth and fifth reports in late summer/autumn of this year, to allow time for us to fully consider the recommendations for the Department, and agree actions, including those on covid-19 related issues and on mandating reporting to the LeDeR programme.

This report also highlights the disparities experienced by ethnic minority people with a learning disability. It is vital that we continue to work with our partners to tackle the poor outcomes experienced by ethnic minority people with a learning disability.

Based on the evidence from completed LeDeR reviews, the fifth annual report makes 10 recommendations for the health and care system, as follows:

Recommendation 1. LeDeR reviews to be undertaken through the lens of greater racial awareness. (Audience: NHS England and NHS Improvement)

Recommendation 2. Local Authorities to ensure that joint strategic needs assessments (JSNA) collect and publish local data on the health needs of children and adults with learning disabilities, capturing any characteristics that relate to specific ethnic groups. Integrated care systems (ICSs), and their commissioned primary care networks to take actions to reduce any disparities between people from different ethnic groups when planning local services for people with learning disabilities and their families. Accountability for this to be monitored at regional level, and by NHS England. (Audience: Local authorities, NHS England and NHS Improvement, ICSs, NHS Race and Health Observatory)

Recommendation 3. A nationally endorsed standard resource is required, with local flexibility, that provides information for people with learning disabilities and their families about their legal rights and entitlements, national services available and how to access them, and local sources of support. Mechanisms must be in place for its effective distribution, particularly to people from minority ethnic groups. (Audience: NHS England and NHS Improvement)

Recommendation 4. Strategically planned, long-term, targeted, joint investment is needed to strengthen partnerships with local communities and provide support for peer-to-peer networks, to build on and future-proof existing contacts and structures within local communities and increase trusted word-of-mouth communication and information sharing. (Audience: Local authorities, ICSs, primary care networks)

Recommendation 5. Local systems, including commissioning, to be responsive and develop strategic plans that address the longstanding needs of people with learning disabilities and their families that the covid-19 pandemic has illuminated, including the availability of specialist learning disability teams in acute, primary and community care. (Audience: ICSs)

Recommendation 6. From the outset of any future public health emergency, the needs and circumstances of people with learning disabilities must be considered and built into national policy and guidance by the National Institute for Health Protection and the Department of Health and Social Care. A data collection tool should be established to capture emerging evidence relating to people with learning disabilities, which would trigger adjustments to policy, guidance, systems and processes as required. (Audience: National Institute for Health Protection, Department of Health and Social Care, NHS England and NHS Improvement)

Recommendation 7. Commissioning guidance for NHS 111 services to include a requirement for the provision of specifically tailored training to NHS 111 staff about how to respond appropriately to calls about people with a learning disability or from people with a learning disability and their families. (Audience: NHS England and NHS Improvement)

Recommendation 8. A LeDeR representative should routinely and as of right be involved with the child death review meeting/process for children with learning disabilities, in order to ensure that necessary information is collected and transferred into the wider LeDeR programme. (Audience: NHS England and NHS Improvement)

Recommendation 9. NHS England to collect and collate evidence about the needs and circumstances of people who have been subject to mental health or criminal justice restrictions and use this to inform appropriate, personalised service provision for this group of people. While waiting for this evidence, robust after-care support (as required by S117 of the Mental Health Act) must be provided. (Audience: NHS England and NHS Improvement, local authorities)

Recommendation 10. Progress on actions in response to previous recommendations about minimising the risk of aspiration pneumonia in people with learning disabilities needs to be published. (Audience: NICE, Department of Health and Social Care, NHS England and NHS Improvement)

While we have taken urgent action during the covid-19 pandemic to protect the lives of people with a learning disability, we know that there is more to be done as we begin to move out of the pandemic. We will continue to work with partners to ensure improvements are made, and to address the recommendations in the reports.

[HCWS81]