21 May 2019

The third annual Learning Disabilities Mortality Review (LeDeR) Programme, by NHS England with the University of Bristol, has been published today. The review team were notified of 4,302 deaths between 1st July 2016 and 31st December 2018. Local areas in England reviewed 25% (1,081) of those cases by the end of the reporting period.

Key findings include:

• A smaller proportion of the deaths of people with learning disabilities were reported to a coroner (31%) than in the general population (43%).
• Of the 302 deaths of people with learning disabilities reported to a coroner, an inquest was held in 19% of cases.
• 71 adults (8%) were reported to have received care that fell so far below expected good practice that it either significantly impacted on their well-being, or directly contributed to their death.
• One in ten (11%) of reviews completed in 2018 reported that concerns had been raised about the circumstances leading to a person’s death.
• Women with learning disabilities died 27 years earlier; men 23 years, when compared to the general population.
• There was evidence of bias in the care of people with learning disabilities, resulting in unequal treatment.

This report comes as the Care Quality Commission (CQC) publish their interim report on a Review of restraint, prolonged seclusion and segregation for people with a mental health problem, a learning disability and or autism. The findings so far have led the CQC to call for urgent action to strengthen the safeguards that protect the safety, welfare and human rights of people held in segregation. Their report highlights the need for a better system of care for people with a learning disability or autism who are, or are at risk of, being hospitalised and segregated.

Deborah Coles, Director of INQUEST says: “The findings of LeDeR and the CQC today add to the growing evidence of inadequate care, human rights abuses and needless incarceration of people with learning disabilities and autism. Yet we still see an unconscionable lack of political will and leadership to ensure action and systemic change.

Investigations, reviews and inquests are essential for identifying and addressing systemic failings. It is disturbing to see the high number of deaths still not being reviewed by LeDeR, and low number of cases which result in an inquest being held. This leaves families with unanswered questions and misses important opportunities to expose and address unsafe care.”

Dr. Sara Ryan, campaigner on the rights of people with learning disabilities and autism, said: “These reports underline the barbaric and inhumane way people with learning disabilities and/or autism continue to be treated in this country. It is utterly shameful and the government needs to stop hiding behind reports, consultations and inquiries and actually act.”

ENDS

NOTES TO EDITORS

For further information please contact Lucy McKay and Sarah Uncles on 020 7263 1111 or [email protected]; [email protected]

Download The Learning Disabilities Mortality Review (LeDeR) Programme annual report here.

Download the CQC interim report of the Review of restraint, prolonged seclusion and segregation for people with a mental health problem, a learning disability and or autism here.

Dr. Sara Ryan is a campaigner and the author of 'Justice for Laughing Boy', a personal account from the mother of Connor Sparrowhawk, a teenager with autism and epilepsy, who died due to neglect while in a specialist NHS unit. After Connor's death, Dr Sara Ryan started the #JusticeforLB campaign, which uncovered a wider failure by the NHS to appropriately care for people with learning difficulties. Learn more and order the book here. Follow her twitter here.