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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)
Making a difference: the impact of the Confidential Inquiry into premature deaths of people with learning disabilities
- Author:
- HESLOP Pauline
- Journal article citation:
- British Journal of Learning Disabilities, 43(2), 2015, pp.142-149.
- Publisher:
- Wiley
The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) was commissioned by the Department of Health in England in 2010 to investigate the avoidable or premature deaths of people with learning disabilities through retrospective reviews of deaths. Both the process of conducting CIPOLD and the findings of the study itself made an impact on the way in which professionals thought about issues relating to people with learning disabilities and led to changes in policy and practice. Much of the impact of CIPOLD came from arming practitioners, family carers, people with learning disabilities and policy makers with the research findings and encouraging them to take on the mantle of change from there, for example, by increasing the provision of training or reviewing their current practice. There were a number of challenges that the research team faced. First, they needed to ensure the assiduous recording of any impact that took place throughout the duration of the research and beyond. Secondly, they were careful to make sure that as far as possible, professionals were involved and that it was a learning experience for them from which they had something to gain. Thirdly, self-reflexivity on the part of the research team was required in order for them to understand where their own strengths and limitations lay. (Publisher abstract)