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Learning Disability Mortality Review (LeDeR) Programme: annual report 2020
- Authors:
- HESLOP Pauline, et al
- Publisher:
- University of Bristol
- Publication year:
- 2021
- Pagination:
- 156
- Place of publication:
- Bristol
This report focuses on findings from completed reviews of the deaths of people with learning disabilities that occurred in the calendar years 2018, 2019 and 2020, identifying any trends that have occurred over time, and considering implications for service improvement. The analysis covers: deaths occurring in 2018, 2019 and 2020 16; demographic information about people who died 2018-2020; age at death and its potential influences; cause of death; circumstances of deaths; indicators of the quality of care provided; deaths of people from minority ethnic groups; deaths from COVID-19 in 2020. A total of 9,110 deaths of people with learning disabilities (622 deaths of children; 8,488 deaths of adults) occurring between 1st Jan 2018 and 31st December 2020 were notified to the LeDeR programme. In 2018 and 2019, for both males and females, the leading condition-specific underlying causes of death were very different for people with learning disabilities compared to the general population. Cerebral palsy, epilepsy and bacterial pneumonia were the condition-specific leading causes of death in people with learning disabilities age ages 5- 49 years. By contrast, in the general population, the condition-specific leading causes of deaths at these ages were related to suicide and injury or poisoning of undetermined intent; for females aged 35-49 it was malignant neoplasm of the breast. In 2020, the condition-specific leading cause of death in people with learning disabilities from age 35 and over for males, and age 20 and over in females was COVID-19. (Edited publisher abstract)
Mortality in people with intellectual disabilities
- Authors:
- HESLOP Pauline, LAUER Emily, HOGHTON Matt
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 28(5), 2015, pp.367-372.
- Publisher:
- Wiley
This paper reviews why an understanding of mortality data in general, and in relation to people with intellectual disabilities in particular, is important. It explains how an understanding of mortality can help understand how healthy people are and also help determine whether a person has died too soon. The paper also introduces the papers in this special edition of the Journal of Applied Research in Intellectual Disabilities. (Edited publisher abstract)
Mortality of people with intellectual disabilities in England: a comparison of data from existing sources
- Authors:
- HESLOP Pauline, GLOVER Gyles
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 28(5), 2015, pp.414-422.
- Publisher:
- Wiley
Background: At present, there is limited statistical information about mortality of people with intellectual disabilities in England. This study explores the data that are currently available. Methods: Four recent sources of data about mortality of people with intellectual disabilities in England are reviewed: the Confidential Inquiry into Premature Deaths of People with intellectual disabilities (CIPOLD); the 2013 Joint Health and Social Care Intellectual Disability Self-assessment Exercise; local registers of people with intellectual disability; and analysis of Cause of Death certificates. Results: Available data confirm that people with intellectual disability have a shorter lifespan and increased risk of early death when compared with the general population. The standardised mortality rate for people with intellectual disabilities is approximately twice that of the general population in England, with little indication of any reduction in this over time. Conclusions: Comprehensive data about mortality of people with intellectual disabilities that take account of the age and sex distribution of the population are currently lacking in England. Existing data suggest persistent inequalities between people with intellectual disabilities and the general population. There is an urgent need for better monitoring mechanisms and actions to address these. (Publisher abstract)