Learning from Lives and Deaths - LeDeR researchers

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)

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 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)

NHS England » Learning from lives and deaths – people with a learning disability and autistic people (LeDeR) NHS England » Learning from lives and deaths – people with a learning disability and autistic people (LeDeR)

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-dis...
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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,
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For any queries: The Learning from lives and deaths – people with a learning disability and autistic people (LeDeR) is overseen by NHS England’s NHS England’s Learning disability and autism programme,
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In light of this, we are withdrawing the LeDeR 2023 annual report and intend to re-publish an updated version in January 2026.
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Our initial investigation has shown that this means some data on cause of death were missing when it should not have been. To be as accurate and as complete as possible, we want to include this additional information.
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🧵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.
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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

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...

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...

Findings indicate 38.8% of deaths reviewed in 2023 were classed as avoidable. A notable reduction from previous years but still almost double the 21.6% in the total adult population. Chapter 1 details: kcl.ac.uk/ioppn/assets... #LeDeR
@kingsioppn.bsky.social

📖 Easy read and accessible versions of the LeDeR 2023 report are available to ensure findings reach everyone. These materials make research accessible to people with a learning disability, their families, and carers. Access here: kcl.ac.uk/research/leder #LeDeR
@kingsioppn.bsky.social

📢 The new LeDeR report is now available. The 2023 annual report analyses the deaths of 3,556 people with a learning disability & autistic people who died in 2023. The work is part of efforts to reduce health inequalities. Access here: kcl.ac.uk/ioppn/assets... #LeDeR
@kingsioppn.bsky.social

Deaths from pneumonia in people with LD are unnecessarily high.

Key risk factors: poor mobility, swallowing difficulties & heart conditions.

Our research shows these vulnerable groups need proactive monitoring, not reactive care

tinyurl.com/5n8pv6yh

@kingsioppn.bsky.social #DoYouSeeMe

MediChec was developed by
@nihrmaudsleybrc.bsky.social

From research to action: We helped update MediChec, empowering people with learning disability to manage medications safely.

✓ Flags high-risk medications to clinicians
✓ Improves medication reviews

Try it: medichec.com
@kingsioppn.bsky.social
#DoYouSeeMe #LDWeek2025

Constipation prevalence and risk from prescribed medications in people with intellectual disability: Findings from an English mortality programme - Christina Roberts, Jonathon Ding, Delia Bishara, Sah... Constipation is common in people with intellectual disability, with case reports of associated deaths. Risk factors include lifestyle factors, health conditions...

Our open-access research examines medication-induced constipation in people with learning disabilities, a preventable risk affecting healthcare outcomes.

Read the full paper: journals.sagepub.com/doi/10.1177/...

#LeDeR #DoYouSeeMe #LDWeek2025 @kingsioppn.bsky.social