Learning from Lives and Deaths - LeDeR researchers

An updated version of the LeDeR 2023 annual report is now available kcl.ac.uk/ioppn/assets/p…. The revised report includes fully updated cause-of-death information that was inadvertently excluded due to a data-processing error that occurred before we received the data. (1/2)

@IsobelS77082097 Thank you for getting in touch. The LeDeR academic collaborators based at KCL do not receive individual notifications of deaths or complete LeDeR reviews. We suggest getting in touch with the LeDeR team at NHS England via support.leder@nhs.net or 01278727411.

@AliveLeder Hello - as close family member of a LD ind who died in hosp recently, how would I know if you have their death on record?

We apologise for the uncertainty caused by withdrawing the report; it was necessary to ensure that information in the report is accurate. (2/2)

An updated version of the LeDeR 2023 annual report is now available kcl.ac.uk/ioppn/assets/p…. The revised report includes fully updated cause-of-death information that was inadvertently excluded due to a data-processing error that occurred before we received the data. (1/2)

these figures highlight the significant work that still needs to be done to address premature deaths of people with a learning disability. (3/3)

Using data corrected by SCW, our new analysis shows that 40.2% of deaths in 2023 were due to avoidable causes. While the long-term downward trend in avoidable mortality remains, (2/3)

Our updated analysis shows a change in mortality patterns for 2023. Diseases of the circulatory system are now identified as the most common cause of death, rather than respiratory diseases or neoplasms. (1/3)

using data that has been notified to and processed by South Central and West Commissioning Support Unit on a separate contract with NHS England. For contact details and further information please visit england.nhs.uk/learning-disab… 6/6

which commissions King’s College London and our partners University of Lancashire and Kingston University to produce an annual report, an accessible report and materials, and regional reports, 5/6

🧵We have been informed by NHS England of a technical issue within the data supplied by South Central and West Commissioning Support Unit that has impacted elements of the published LeDeR 2023 annual report. 1/6

Our #LeDeR deep dive about avoidable deaths due to cancer in people with a learning disability is now available. We explore barriers to screening, early diagnosis, & treatment that contribute to these unacceptable health inequalities. kcl.ac.uk/ioppn/assets/p… @KingsIoPPN

Our deep dive reports analyse key themes identified through LeDeR reviews. The team continues to develop additional deep dives to address emerging priorities in learning disability healthcare with more due to release soon. Access here: kcl.ac.uk/ioppn/assets/p… #LeDeR @KingsIoPPN

The academic team at KCL, UCLan and Kingston University undertakes more in-depth analysis on other key areas using data from LeDeR reviews. See chapter 5 for more details: kcl.ac.uk/ioppn/assets/p… #LeDeR @KingsIoPPN

A relatively high proportion of deaths of autistic adults reviewed were by suicide, misadventure, or accident, showing the need for accessible mental health supports to be in place. Chapter 4: kcl.ac.uk/ioppn/assets/p… #LeDeR @KingsIoPPN

Autistic adults notified to LeDeR were mostly male and White. The small numbers of reviews mean these data aren't representative but we saw high rates of mental health concerns in autistic adults whose deaths were reviewed. Chapter 4: kcl.ac.uk/ioppn/assets/p… #LeDeR @KingsIoPPN

The 2023 report includes a new chapter on deaths of people with a severe or profound learning disability. They died on average 7.3 years younger than adults with mild or moderate learning disability. Chapter 3: kcl.ac.uk/ioppn/assets/p… #LeDeR @KingsIoPPN

Reviewers identified delays in care or treatment in 37.2% of deaths and problems with organisational systems in 36.3%. While slightly improved, care coordination remains a priority for service development. Chapter 1: kcl.ac.uk/ioppn/assets/p… #LeDeR @KingsIoPPN