Learning from Lives and Deaths - LeDeR researchers

The latest LeDeR Annual Report is OUT NOW. 📢Read it here Report: kcl.ac.uk/ioppn/leder/le… Appendices: kcl.ac.uk/ioppn/leder/le… Priorities for implementation: kcl.ac.uk/ioppn/leder/le… Key infographics: kcl.ac.uk/ioppn/leder/le… #LeDeR #NHS #LearningDisability #Autism @KingsIOPPN

Although small data pools restrict interpretations, autism suicide risk remains a critical concern. In the newest report, suicide, misadventure, or accidental death accounted for 33.0% of the reviewed deaths of autistic adults. Read Chapter 4: kcl.ac.uk/ioppn/leder/le…

The volume of reviews for autistic adults without a learning disability remains low, with 152 notifications and 87 completed focused reviews in the latest data cycle. Explore the trends in Chapter 4: kcl.ac.uk/ioppn/leder/le… #LeDeR #Autism #AutismResearch

The median age at death for adults with Down syndrome is 59.8 years, 22 years younger than the general population. Additionally, 39.8% had a recorded dementia diagnosis. Read the full report: kcl.ac.uk/ioppn/leder/le… #LeDeR #Dementia #DownSyndromeAct

Avoidable causes of death show stark disparities. For adults with Down syndrome, epilepsy accounted for 1 in 5 avoidable deaths, compared to just 1 in 200 in the general population. Read the Chapter 3 findings: kcl.ac.uk/ioppn/leder/le… #LeDeR #DownSyndrome #EpilepsyCare

What are the primary problems with care? Reviewers found that 36.6% of individuals with a severe or profound learning disability experienced delays in care or treatment, and 38.4% faced organisational system issues. Read Chapter 2: kcl.ac.uk/ioppn/leder/le… #LeDeR #CareQuality

Age at death differences remain severe. The newest report shows the median age at death for a person with a profound learning disability is just 40.7 years, a staggering 41.2 years difference from the general population. Read Chapter 2: kcl.ac.uk/ioppn/leder/le…

Looking at age at death figures from the newest report, More than half (56.6%) died before the age of 65, compared to just 14.8% in the general adult population. The gap remains stark. Read the report: kcl.ac.uk/ioppn/leder/le… #LeDeR #HealthInequality

Newest LeDeR figures show 39.0% of deaths reported to LeDeR were considered avoidable. The figure is trending down (41.4% last year) but it remains unacceptably high, nearly 2x the rate seen in the general population (21.1%). Full breakdown in Chapter 1: kcl.ac.uk/ioppn/leder/le…

The new LeDeR report outlines clear priorities for implementation, including strengthened vaccination care, better caregiver guidance on respiratory infection signs, and clear escalation pathways. See the recommendations: kcl.ac.uk/ioppn/leder/le… #LeDeR

Join the Kingston Intellectual Disability (KIND) research group: facebook.com/profile.php?id…

Accessible report (Short easy read): kcl.ac.uk/ioppn/leder/le… Accessible report (Short video): media.kcl.ac.uk/media/t/1_a3eg….. 3/4

In collaboration with the Staying Alive and Well Group, full Easy Read and video versions of the new LeDeR 2024 Annual Report are available now Accessible report (Long easy read): kcl.ac.uk/ioppn/leder/le… Accessible report (Long video): media.kcl.ac.uk/media/t/1_81t8….. #LeDeR 1/4

The 2024 LeDeR (@AliveLeder) report is published today. It reviews the deaths of people with a learning disability and autistic people between 2021 and 2024, and sets out the changes needed to reduce preventable deaths and improve care. Read more: kcl.ac.uk/news/fewer-peo…

@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)