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Learning from Lives and Deaths - LeDeR researchers

@aliveleder.bsky.social
54 followers 42 following 51 posts

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.

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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 22/07/2026
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 21/07/2026
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 20/07/2026
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 20/07/2026
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 17/07/2026
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 17/07/2026
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 16/07/2026
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 16/07/2026
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/...
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 15/07/2026
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 15/07/2026
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/...
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King's College London @kingscollegelondon.bsky.social · 14/07/2026
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...
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 14/07/2026
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 13/07/2026
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
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Reposted by Learning from Lives and Deaths - LeDeR researchers
Institute of Psychiatry, Psychology & Neuroscience @kingsioppn.bsky.social · 13/07/2026
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...
kcl.ac.uk
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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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 13/07/2026
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 27/01/2026
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)
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 27/01/2026
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)
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 09/12/2025
🧵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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 13/11/2025
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 08/09/2025
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 · 08/09/2025
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 05/09/2025
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 05/09/2025
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 05/09/2025
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 05/09/2025
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 · 04/09/2025
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 04/09/2025
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 03/09/2025
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 03/09/2025
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
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Reposted by Learning from Lives and Deaths - LeDeR researchers
Institute of Psychiatry, Psychology & Neuroscience @kingsioppn.bsky.social · 02/09/2025
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...
kcl.ac.uk
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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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 03/09/2025
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 03/09/2025
📖 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 · 03/09/2025
📢 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 · 20/06/2025
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 19/06/2025
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 19/06/2025
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
journals.sagepub.com
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...
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 18/06/2025
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 17/06/2025
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
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Learning from Lives and Deaths - LeDeR researchers @aliveleder.bsky.social · 16/06/2025
#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 · 07/03/2025
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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