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. https://bsky.app/profile/aliveleder.bsky.socialhttps://bsky.app/profile/aliveleder.bsky.social/post/3mrad6ye3as2dOur 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. https://bmjopen.bmj.com/content/16/6/e107222 @kingsioppn.bsky.social22 Jul 2026 12:29 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3mrad6ye3as2dhttps://bsky.app/profile/aliveleder.bsky.social/post/3mr5ejy5xi22dBeyond 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.social21 Jul 2026 08:15 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3mr5ejy5xi22dhttps://bsky.app/profile/aliveleder.bsky.social/post/3mr3ali6w4s2yAlthough 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: https://www.kcl.ac.uk/ioppn/leder/leder2024/leder-2024-report.pdf #LeDeR #Autism20 Jul 2026 11:59 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3mr3ali6w4s2yhttps://bsky.app/profile/aliveleder.bsky.social/post/3mr2uadwrdc2dThe 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: https://www.kcl.ac.uk/ioppn/leder/leder2024/leder-2024-report.pdf #LeDeR #Autism #AutismResearch20 Jul 2026 08:18 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3mr2uadwrdc2dhttps://bsky.app/profile/aliveleder.bsky.social/post/3mqtrvtppj22gThe 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: https://www.kcl.ac.uk/ioppn/leder/leder2024/leder-2024-report.pdf #LeDeR #Dementia #DownSyndromeAct17 Jul 2026 12:48 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3mqtrvtppj22ghttps://bsky.app/profile/aliveleder.bsky.social/post/3mqtehys2lk23Avoidable 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: https://www.kcl.ac.uk/ioppn/leder/leder2024/leder-2024-report.pdf #LeDeR #DownSyndrome #EpilepsyCare17 Jul 2026 08:47 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3mqtehys2lk23https://bsky.app/profile/aliveleder.bsky.social/post/3mqr5uyqtg226What 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: https://www.kcl.ac.uk/ioppn/leder/leder2024/leder-2024-report.pdf #LeDeR #CareQuality16 Jul 2026 11:44 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3mqr5uyqtg226https://bsky.app/profile/aliveleder.bsky.social/post/3mqqt4w23nc2mAge 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: https://www.kcl.ac.uk/ioppn/leder/leder2024/leder-2024-report.pdf16 Jul 2026 08:31 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3mqqt4w23nc2mhttps://bsky.app/profile/aliveleder.bsky.social/post/3mqoo3pqvh227Looking 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: https://www.kcl.ac.uk/ioppn/leder/leder2024/leder-2024-report.pdf #LeDeR #HealthInequality15 Jul 2026 11:56 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3mqoo3pqvh227https://bsky.app/profile/aliveleder.bsky.social/post/3mqobrjyo5c2lNewest 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: https://www.kcl.ac.uk/ioppn/leder/leder2024/leder-2024-report.pdf15 Jul 2026 08:15 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3mqobrjyo5c2lhttps://bsky.app/profile/aliveleder.bsky.social/post/3mqlrhptyjc2hThe 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: https://www.kcl.ac.uk/ioppn/leder/leder2024/leder-2024-priorities-for-implementation-for-clinicians-and-services.pdf #LeDeR14 Jul 2026 08:18 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3mqlrhptyjc2hhttps://bsky.app/profile/aliveleder.bsky.social/post/3mqjzg2j4k22mIn 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): https://kcl.ac.uk/ioppn/leder/leder2024/leder-report-2024-accessible-report-long-easy-read-version-leder-report.pdf Accessible report (Long video): https://media.kcl.ac.uk/media/t/1_81t8dura?_gl=1*dj94iu*_gcl_au*MTYzMTE0MDY3NC4xNzgzMDExMDE2*_ga*NTE0MDE0MDkxLjE3NzQ1MjEzMjA.*_ga_1X78DS0GQQ*czE3ODM5MzU0MzYkbzI5JGcxJHQxNzgzOTU2MzcwJGo1NiRsMCRoMA.. #LeDeR 1/413 Jul 2026 15:35 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3mqjzg2j4k22mhttps://bsky.app/profile/aliveleder.bsky.social/post/3mqjysrh3ik2cThe latest LeDeR Annual Report is OUT NOW. 📢 Read it here: Report: https://kcl.ac.uk/ioppn/leder/leder2024/leder-2024-report.pdf Appendices: https://kcl.ac.uk/ioppn/leder/leder2024/leder-2024-appendices.pdf Priorities for implementation: https://kcl.ac.uk/ioppn/leder/leder2024/leder-2024-priorities-for-implementation-for-clinicians-and-services.pdf Key infographics: https://kcl.ac.uk/ioppn/leder/leder2024/leder-2024-key-inforgraphics.pdf #LeDeR #NHS #LearningDisability #Autism @kingsioppn.bsky.social13 Jul 2026 15:24 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3mqjysrh3ik2chttps://bsky.app/profile/aliveleder.bsky.social/post/3mdfprkh7tc2bOur 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)27 Jan 2026 12:05 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3mdfprkh7tc2bhttps://bsky.app/profile/aliveleder.bsky.social/post/3mdfpqu5xmc2bAn updated version of the LeDeR 2023 annual report is now available https://www.kcl.ac.uk/ioppn/assets/pdfs/leder/2023-final-updated.pdf. 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)27 Jan 2026 12:04 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3mdfpqu5xmc2bhttps://bsky.app/profile/aliveleder.bsky.social/post/3m7ktv6v2ec2p🧵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. 1/609 Dec 2025 15:21 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3m7ktv6v2ec2phttps://bsky.app/profile/aliveleder.bsky.social/post/3m5ixpw3gs22mOur #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. https://www.kcl.ac.uk/ioppn/assets/pdfs/leder/avoidable-cancers-deep-dive.pdf @kingsioppn.bsky.social13 Nov 2025 10:34 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3m5ixpw3gs22mhttps://bsky.app/profile/aliveleder.bsky.social/post/3lycumgydo22yOur 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: http://kcl.ac.uk/ioppn/assets/pdfs/leder/leder-annual-report-2023.pdf #LeDeR @kingsioppn.bsky.social08 Sep 2025 09:16 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3lycumgydo22yhttps://bsky.app/profile/aliveleder.bsky.social/post/3lyculz4ofk2yThe 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: http://kcl.ac.uk/ioppn/assets/pdfs/leder/leder-annual-report-2023.pdf #LeDeR @kingsioppn.bsky.social08 Sep 2025 09:16 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3lyculz4ofk2yhttps://bsky.app/profile/aliveleder.bsky.social/post/3ly3v3yfvkk2dA 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: http://kcl.ac.uk/ioppn/assets/pdfs/leder/leder-annual-report-2023.pdf #LeDeR @kingsioppn.bsky.social05 Sep 2025 14:36 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3ly3v3yfvkk2dhttps://bsky.app/profile/aliveleder.bsky.social/post/3ly3v3dcuxs2dAutistic 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: http://kcl.ac.uk/ioppn/assets/pdfs/leder/leder-annual-report-2023.pdf #LeDeR @kingsioppn.bsky.social05 Sep 2025 14:36 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3ly3v3dcuxs2dhttps://bsky.app/profile/aliveleder.bsky.social/post/3ly3v2jughs2dThe 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: http://kcl.ac.uk/ioppn/assets/pdfs/leder/leder-annual-report-2023.pdf #LeDeR @kingsioppn.bsky.social05 Sep 2025 14:35 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3ly3v2jughs2dhttps://bsky.app/profile/aliveleder.bsky.social/post/3ly3k4e6jes2vReviewers 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: http://kcl.ac.uk/ioppn/assets/pdfs/leder/leder-annual-report-2023.pdf #LeDeR @kingsioppn.bsky.social05 Sep 2025 11:19 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3ly3k4e6jes2vhttps://bsky.app/profile/aliveleder.bsky.social/post/3lxyrnbf32s2dAcross 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: http://kcl.ac.uk/ioppn/assets/pdfs/leder/leder-annual-report-2023.pdf #LeDeR @kingsioppn.bsky.social04 Sep 2025 08:56 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3lxyrnbf32s2dhttps://bsky.app/profile/aliveleder.bsky.social/post/3lxyrg3limc2dLeDeR 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: http://kcl.ac.uk/ioppn/assets/pdfs/leder/leder-annual-report-2023.pdf #LeDeR @kingsioppn.bsky.social04 Sep 2025 08:52 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3lxyrg3limc2dhttps://bsky.app/profile/aliveleder.bsky.social/post/3lxwrg3npnc27LeDeR 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: http://kcl.ac.uk/ioppn/assets/pdfs/leder/leder-annual-report-2023.pdf #LeDeR @kingsioppn.bsky.social03 Sep 2025 13:47 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3lxwrg3npnc27https://bsky.app/profile/aliveleder.bsky.social/post/3lxwi5kvuzs2yThe 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: http://kcl.ac.uk/ioppn/assets/pdfs/leder/leder-annual-report-2023.pdf #LeDeR @kingsioppn.bsky.social03 Sep 2025 11:01 +0000at://did:plc:tafizard6necpk577saxxc3j/app.bsky.feed.post/3lxwi5kvuzs2y