Learning from Lives and Deaths - LeDeR researchers
@AliveLeder
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Our team aims to help improve healthcare for people with a learning disability and/or autism. We're from KCL and share work with researchers from UCLan + KU.
IoPPN King's
Joined January 2022
📢 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: https://t.co/4cu1VsaOv8
#LeDeR @KingsIoPPN
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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: https://t.co/4cu1VsaOv8
#LeDeR @KingsIoPPN
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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: https://t.co/4cu1VsaOv8
#LeDeR @KingsIoPPN
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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: https://t.co/4cu1VsaOv8
#LeDeR @KingsIoPPN
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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: https://t.co/4cu1VsbmkG
#LeDeR @KingsIoPPN
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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: https://t.co/4cu1VsbmkG
#LeDeR @KingsIoPPN
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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: https://t.co/4cu1VsbmkG
#LeDeR @KingsIoPPN
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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: https://t.co/4cu1VsaOv8
#LeDeR @KingsIoPPN
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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: https://t.co/4cu1VsaOv8
#LeDeR @KingsIoPPN
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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: https://t.co/4cu1VsbmkG
#LeDeR @KingsIoPPN
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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: https://t.co/4cu1VsaOv8
#LeDeR @KingsIoPPN
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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: https://t.co/4cu1VsaOv8
#LeDeR @KingsIoPPN
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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, @drandrestrydom, @dr_rorysheehan) report for 2023. #LearningDisabilities #HealthEquity
https://t.co/ZP8w2kXFxz
kcl.ac.uk
The 2023 “Learning from Lives and Deaths – people with a learning disability and autistic people” (LeDeR), which investigates deaths in England in adults with a learning disability in an effort to...
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đź“– 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: https://t.co/ibgMMMZmyh
#LeDeR @KingsIoPPN
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About #LeDeR report for 2023: NHSE reportedly said “we are committed to publishing this report soon after Parliament returns”. This means September at its earliest @AliveLeder
https://t.co/2emF9SD9Tv
itv.com
The unpublished report relates to deaths in 2023 and was due to be released last year. | ITV National News
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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 https://t.co/SIZnWsZMF0
@KingsIoPPN #DoYouSeeMe
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MediChec was developed by @NIHRMaudsleyBRC.
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From research to action: We helped update MediChec, empowering people with learning disability to manage medications safely. âś“ Flags high-risk medications to clinicians âś“ Improves medication reviews Try it: https://t.co/vaHrXOtZmW
@KingsIoPPN #DoYouSeeMe #LDWeek2025
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Our open-access research examines medication-induced constipation in people with learning disabilities, a preventable risk affecting healthcare outcomes. Read the full paper: https://t.co/TYwEK8CRoo
#LeDeR #DoYouSeeMe #LDWeek2025 @KingsIoPPN
journals.sagepub.com
Constipation is common in people with intellectual disability, with case reports of associated deaths. Risk factors include lifestyle factors, health conditions...
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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: https://t.co/qFC5UM4XT3
@KingsIoPPN #DoYouSeeMe
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