3 September 2025
The Social Care Institute for Excellence (SCIE) has today, 3 September 2025, responded to the 2023 LeDeR Annual Report: Learning from Lives and Deaths – People with a Learning Disability and Autistic People, which once again highlights inequalities in health and social care outcomes.
The LeDeR annual report investigates the death of every adult with a learning disability and autism in England. Its purpose is to understand what happened, improve care, reduce inequalities and prevent future premature deaths.
This report is a stark reminder of the profound inequalities in health and social care outcomes facing people with a learning disability and autistic people. It is indefensible that people with a learning disability still die, on average, almost 20 years earlier than the general population and are three times more likely to die from a condition which could have been treated. These are not just numbers; they are lives cut short.
SCIE has analysed the CQC’s reports of local authority performance and found that the Mental Capacity Act isn’t being applied consistently. This leaves people without the protections they are entitled to. The LeDeR report confirms these concerns. The lesson is clear: we must stop treating these failings as inevitable and start treating them as urgent priorities. What’s needed now is action.
We need government, commissioners, providers and frontline professionals to pull together to eradicate these inequalities and close the gap in life expectancy. That means delivering on the basics: ensuring social care packages genuinely meet people’s needs, the Mental Capacity Act is upheld in every case and high-quality care is accessible to everyone who needs it, when they need it.
Kathryn Marsden OBE (formerly Kathryn Smith)
Chief Executive of the Social Care Institute for Excellence (SCIE)
SCIE’s press release on the Mental Capacity Act (MCA) warned that the system is at risk of “unravelling” unless reform is prioritised. The LeDeR report echoes this, noting both improvements in practice and worrying increases in cases where the Act was not followed. Further research and stronger safeguards are urgently required.
To support practitioners, SCIE provides practical tools to help ensure people with learning disabilities and autistic people receive equitable care. Resources such as Get me to hospital guide staff in making reasonable adjustments and improving outcomes in situations where people need and are refusing urgent medical treatment and may need the protection of the MCA.
This and our guidance, Tackling inequalities in care for people with learning disabilities and autistic people, look at the issues, opportunities and concerns raised in this LeDeR report.
About SCIE
The Social Care Institute for Excellence (SCIE) improves the lives of people of all ages by co-producing, sharing, and supporting the use of the best available knowledge and evidence about what works in practice. We are a leading independent social care charity working with organisations that support adults, families and children across the UK.
If you have any questions regarding this submission, please do not hesitate to contact Molly Pennington, Press and Media Relations Officer, at molly.pennington@scie.org.uk