Our new paper in @BMJ_Open uses qualitative analysis to investigate how DNACPR decisions for people with a learning disability were not followed as intended in emergency contexts because of challenges in communication and documentation. bmjopen.bmj.com/content/16/6... @kingsioppn.bsky.social

Beyond the annual reports, our research goes deeper. Our Avoidable Cancers and DNACPR deep dives are out now, with further deep dives on, vaccination barriers, and genetic conditions coming soon. 📊 Read the findings: www.kcl.ac.uk/research/leder #LeDeR #ClinicalResearch @kingsioppn.bsky.social

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: www.kcl.ac.uk/ioppn/leder/... #LeDeR #Autism

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: www.kcl.ac.uk/ioppn/leder/... #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: www.kcl.ac.uk/ioppn/leder/... #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: www.kcl.ac.uk/ioppn/leder/... #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: www.kcl.ac.uk/ioppn/leder/... #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: www.kcl.ac.uk/ioppn/leder/...

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: www.kcl.ac.uk/ioppn/leder/... #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: www.kcl.ac.uk/ioppn/leder/...

A national report reviewing the deaths of people with a learning disability and autistic people between 2021 and 2024 is published today. Commissioned by @england.nhs.uk, the @aliveleder.bsky.social report was produced by @kingsioppn.bsky.social researchers. www.kcl.ac.uk/news/fewer-p...

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: www.kcl.ac.uk/ioppn/leder/... #LeDeR

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/... Accessible report (Long video): media.kcl.ac.uk/media/t/1_81.... #LeDeR 1/4

The 2024 LeDeR (@aliveleder.bsky.social) 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: www.kcl.ac.uk/news/fewer-p...

Fewer people with a learning disability dying from avoidable causes, but still almost twice as high as the general population | King's College London

New report from King's College London, University of Lancashire and Kingston University London, has found that the proportion of avoidable deaths among adults with a learning disability fell from 46.3...

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

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)

An updated version of the LeDeR 2023 annual report is now available www.kcl.ac.uk/ioppn/assets.... 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)

🧵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. www.kcl.ac.uk/ioppn/assets... @kingsioppn.bsky.social

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... #LeDeR @kingsioppn.bsky.social

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... #LeDeR @kingsioppn.bsky.social

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... #LeDeR @kingsioppn.bsky.social

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... #LeDeR @kingsioppn.bsky.social

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... #LeDeR @kingsioppn.bsky.social

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... #LeDeR @kingsioppn.bsky.social

Across 2021-23, 51.8% of deaths among Black adults with a learning disability were deemed avoidable vs 38.8% across all LeDeR notifications. Findings highlight importance of culturally responsive care. Chapter 2: kcl.ac.uk/ioppn/assets... #LeDeR @kingsioppn.bsky.social

LeDeR data finds people with a learning disability from an ethnic minority group had a lower median age at death on average than white people. Further research is essential for understanding this difference. Chapter 2: kcl.ac.uk/ioppn/assets... #LeDeR @kingsioppn.bsky.social

LeDeR findings indicate 25.6% of adults with a learning disability who died in 2023 did not have a care package meeting all needs. Additionally, 27.3% required reasonable adjustments that were not provided. Chapter 1 details: kcl.ac.uk/ioppn/assets... #LeDeR @kingsioppn.bsky.social

The median age at death for 2023 LeDeR reviews was 62.5 years, 19.5 years younger than the general population. 2018 data showed a median age of death of 61.8 years, representing a small improvement over 6 years. Chapter 1 details: kcl.ac.uk/ioppn/assets... #LeDeR @kingsioppn.bsky.social

Percentage of “avoidable deaths” of people with learning disabilities has fallen from 46% in 2021 to 39% in 2023, according to the newly released #LeDeR (@aliveleder.bsky.social, @drandrestrydom.bsky.social) report for 2023. #LearningDisabilities #HealthEquity #MedSky www.kcl.ac.uk/news/2023-le...

2023 LeDeR report into avoidable and preventable deaths of people with learning disabilities

The 2023 “Learning from Lives and Deaths – people with a learning disability and autistic people” (LeDeR), which investigates deaths in UK adults with a learning disability in an effort to provide lea...

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