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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Sep 8

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

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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Sep 8

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

Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Sep 5

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

Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Sep 5

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

Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Sep 5

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

Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Sep 5

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

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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Sep 4

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

Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Sep 4

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

Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Sep 3

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

Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Sep 3

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

Reposted by Learning from Lives and Deaths - LeDeR researchers

Institute of Psychiatry, Psychology & Neuroscience @kingsioppn.bsky.social · Sep 2

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...

www.kcl.ac.uk

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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Sep 3

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

Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Sep 3

📖 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

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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Sep 3

📢 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

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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Jun 20

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

tinyurl.com

Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Jun 19

MediChec was developed by
@nihrmaudsleybrc.bsky.social

Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Jun 19

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

Medichec

medichec.com

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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Jun 19

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

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...

journals.sagepub.com

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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Jun 18

LeDeR research reveals 50+% of people with a learning disability were prescribed multiple constipation-causing medications.

This serious issue often goes unrecognised and untreated.

Full findings in our deep dive on constipation:
tinyurl.com/hkrn522d

@kingsioppn.bsky.social #DoYouSeeMe

tinyurl.com

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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Jun 17

LeDeR data: 15% of learning disability bowel cancer deaths occurred under age 50.

Current screening starts at 54. Our research recommends starting at 45 for people with LD.

See our international comparison, Bowel cancer in people with LD:
tinyurl.com/y83n5fyj

#DoYouSeeMe @kingsioppn.bsky.social

tinyurl.com

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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Jun 16

@mencap.org.uk @nhsengland.bsky.social @nhsenglandldn.bsky.social @estiacentre.bsky.social

Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Jun 16

#LearningDisabilityWeek

LeDeR research has uncovered critical health inequalities affecting people with a learning disability.

This #LearningDisabilityWeek, we're sharing our deep dives which can inform improvements to care.

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

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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Mar 7

If you have any further questions in the meantime, please contact [email protected].

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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · Mar 7

We have submitted the Learning from Lives and Deaths (LeDeR) 2023 report to NHS England a few months ago, where it is now undergoing it’s final checks.

We are unable to say when it will be published, but we will announce it on here when it is available.

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