“Learning from Lives and Deaths” Report: Learning Disabilities and Autism
(Limited Text - Ministerial Extracts only)
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The Minister for Care (Stephen Kinnock)
Today I would like to acknowledge the publication of the eighth annual report “Learning from lives and deaths—People with a learning disability and autistic people” (LeDeR) produced by Kings College London. A copy will be deposited in the Libraries of both Houses. We know that families and stakeholders have been waiting for this report and it has been significantly delayed due to the need to resolve practical data issues.
It has been just over a year since I was appointed as the Minister of State for Care. I have felt privileged to fulfil this role and to hear from people with a learning disability, autistic people, their families and carers, and staff about their experiences, both good and bad. It is critical we continue to learn about what we need to do to address the clear health inequalities that continue to exist in our health and social care system. We must reduce these inequalities, and highlight the action needed to prevent avoidable deaths and understand how services can improve. To do this, it is crucial that we review the deaths of people with a learning disability and autistic people.
The latest report shows that on average, people with a learning disability die 19.5 years younger than the general population and are almost twice as likely to die from an avoidable cause of death. This is unacceptable.
In 2022, LeDeR began reporting on the deaths of autistic people without a learning disability. The number of deaths reviewed this year remains small, although the findings are very concerning. It is crucial we improve our understanding of the deaths of autistic people. We expect that with increased awareness of the ability to report these deaths, we can then take specific action to address the issues raised.
It is promising to see from the latest report that, since 2021, LeDeR reviews that identified good practice in care of people with a learning disability have increased by over 10%. While such improvements are encouraging, the findings about health outcomes and how care can be improved to prevent premature mortality highlight that there is much work for us to do. We are committed to maintaining LeDeR going forward as we integrate NHS England and the Department and we are taking action to drive tangible improvements to our health and care services.
In July, we launched the 10-year health plan which will drive a shift to care in the community, rather than in hospitals, to preventing sickness, rather than just treating it, and to harnessing digital opportunities. Neighbourhood health services will work in partnership with other local services to provide more holistic, ongoing support including for people with a learning disability and autistic people.
To support this, we have been rolling out the Oliver McGowan mandatory training programme to ensure health and care staff have the right knowledge and skills to provide effective care.
We set out in our manifesto a commitment to modernise mental health legislation. Our Mental Health Bill, currently before Parliament, will limit the scope to detain people with a learning disability and autistic people and introduce a package of measures to improve community support. We want to see this legislation implemented as soon as possible so that people with a learning disability and autistic people get the support they need in the community, improving care and keeping people out of hospitals.
Alongside the legislation, action is being taken now to reduce reliance on in-patient care. NHS operational planning guidance for 2025-26 sets an objective to deliver a minimum 10% reduction in the use of mental health in-patient care for people with a learning disability and autistic people.
Patients and their families, carers and advocates have a critical part to play in their care and can be uniquely placed to identify acute illness or deterioration in their or their loved ones’ condition, including where that may indicate a need to change their treatment or care. Martha’s rule is a major patient safety initiative in hospitals encouraging patients, families and carers to speak to the care team if they notice changes in someone’s condition and providing them with a way to seek an urgent review if their or their loved one’s condition deteriorates, and they are concerned this is not being responded to. Martha’s rule is being rolled out in 143 acute in-patient pilot sites, as announced in February 2024. In addition, NHS England is working toward roll-out in further acute hospital sites that were not part of the original 143 sites.
NHS England has published its action from learning report 2023-24, highlighting actions across the country to improve care and reduce avoidable and preventable deaths of autistic people and people with a learning disability.
People with a learning disability aged over 14 who are on a GP learning disability register are eligible for a learning disability annual health check. At March 2025, 80% of eligible people had received a learning disability annual health check and 79% had a health action plan. NHS England has also developed an autism-specific health check, currently being tested in primary care.
Further work is under way to ensure people with a learning disability and autistic people access the right support at the right time in the right place. NHS England is working with people with lived experience, clinical professionals and commissioners to produce a quality framework for the learning disability annual health check. This will set out expectations for the annual health check and the accompanying health action plan. Both should make it easier for GPs to add people to their learning disability register so that more people can access appropriate care and support more easily. NHS England is also working to co-develop standards of practice for appropriate interventions for adults and children in a range of settings.
Roll-out of the reasonable adjustment digital flag is progressing, which enables health and publicly funded care professionals to record, share and view details of the reasonable adjustments that individuals need to support their care and treatment. NHS England has also recently published guidance for frontline staff in acute hospitals about how to implement the Mental Capacity Act 2005 for people with a learning disability, helping to ensure that people’s human rights are upheld.
Together with NHS England and partners, we are committed to driving further improvements, implementing our 10-year health plan and working towards healthcare that is equitable and provides the quality of care that people with a learning disability and autistic people should rightly expect.
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