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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)
Young people with learning disabilities or autistic spectrum disorder in post-compulsory state supported schools in England
- Authors:
- HATTON Chris, GLOVER Gyles
- Journal article citation:
- Tizard Learning Disability Review, 20(3), 2015, pp.170-174.
- Publisher:
- Emerald
Purpose: Transition from education to adult life is a stated policy aim for young people with learning disabilities. The purpose of this paper is to examine the extent to which 16-18-year olds with learning disabilities or autistic spectrum disorder are remaining in state school education beyond the minimum school leaving age. Design/methodology/approach: A tabulation from the Department for Education Children and Early Years Data Unit for 2014, combined with School Census data and age-specific population estimates, allowed us to compare the rates of children identified as having moderate, severe or profound/multiple learning difficulties (MLD, SLD, PMLD), or autistic spectrum disorder (ASD) in state education at the ages of 16-18 years vs five to 15 years. Findings: For all types of need analysed in the paper, the rate of children in state school dropped considerably at the ages of 16-18 years: 10 per cent of the rates of children with MLD, 62 per cent of children with SLD, 49 per cent of children with PMLD and 23 per cent of children with ASD at ages five to 15 years were in state education at ages 16-18 years. Almost all young people aged 16-18 years in state education with SLD or PMLD were in special schools, compared to just over half of young people with MLD or ASD. For all these figures, there was considerable regional variation. Social implications: Substantial numbers of children with learning disabilities or ASD do not remain in post-16 state education, with wide regional variations that do not seem to correspond to regional variations in need or national policy concerning transition. (Publisher abstract)
People with intellectual disabilities hospitalised by courts in England
- Authors:
- GLOVER Gyles, BROWN Ian
- Journal article citation:
- Tizard Learning Disability Review, 20(1), 2015, pp.41-47.
- Publisher:
- Emerald
Purpose: This paper describes the characteristics of individuals with intellectual disability in psychiatric hospitals in England who have been referred from the courts following charge or conviction for imprisonable offences. Design/methodology/approach: Analysis of data from the national census of psychiatric inpatients with intellectual disability or autism. Findings: In total, 31 per cent of psychiatric inpatients with intellectual disability or autism were detained on a court order. In comparison to others they were older but fewer appeared to have severe disabilities. Fewer were hospitalised for mental illness or challenging behaviour, more for personality disorder. Rates in relation to numbers with intellectual disability in the population varied widely between regions of the country. Research limitations/implications: The census was weak on exploring the nature of the risk posed by patients. Practical implications: Staff with expertise in the forensic mental health skills of risk assessment and management in the context of intellectual disability will be needed to resettle these patients satisfactorily. Originality/value: The study draws attention to wide variations around the country in rates of use of hospital beds. This applies as much to detention under court orders, including restriction orders, as to informal admission, raising questions about the consistency of court judgements around the country. (Edited publisher abstract)
Access to cancer screening by people with learning disabilities in England 2012/13: information from the Joint Health and Social Care Assessment Framework
- Authors:
- GLOVER Gyles, CHRISTIE Anna, HATTON Chris
- Journal article citation:
- Tizard Learning Disability Review, 19(4), 2014, pp.194-198.
- Publisher:
- Emerald
This paper presents information from the Joint Health and Social Care Self-Assessment Framework (JHSCSAF) on reported rates of cervical cancer, breast cancer and bowel cancer screening for eligible people with learning disabilities in England in 2012/2013 compared to screening rates for the general population. Between 94 and 101 Learning Disability Partnership Boards, as part of the JHSCSAF, provided information to allow the calculation of rates of cervical cancer, breast cancer and bowel cancer screening in their locality, for eligible people with learning disabilities and for the population as a whole. At a national level, reported cancer screening coverage for eligible people with learning disabilities was substantially lower than for the population as a whole (cervical cancer screening 27.6 per cent of people with learning disabilities vs 70 per cent of total population; breast cancer screening 36.8 per cent of people with learning disabilities vs 57.8 per cent of total population; bowel cancer screening 28.1 per cent of people with learning disabilities vs 40.5 per cent of the general population). There were considerable geographical variations in reported coverage for all three screening programmes. It is concluded that there is an urgent need to address data availability and quality issues, as well as reasonable adjustments to cancer screening programmes to ensure uniformly high rates of cancer screening for people with learning disabilities across England. (Edited publisher abstract)
The uptake of health checks for adults with learning disabilities in England: 2008/9-2011/12
- Authors:
- GLOVER Gyles, EMERSON Eric, EVISON Felicity
- Journal article citation:
- Tizard Learning Disability Review, 18(1), 2013, pp.45-49.
- Publisher:
- Emerald
People with learning disabilities generally have worse health than their non-disabled peers. This is in part a problem of identifying ill health in this group and gaining timely access to services. In 2006 the Disability Rights Commission recommended the introduction of annual health checks for people with learning disabilities in England as a reasonable adjustment in primary care to address these health inequalities. This paper reports on trends in the provision of health checks for adults with learning disabilities over the period 2008/9-2011/12. It is based on the analysis of data collected by the Information Centre for Health and Social Care from Primary Care Trusts in England. Over the four years the percentage of eligible adults receiving a health check has consistently increased and now stands at 53 percent. There remain marked variations across both Strategic Health Authority areas and Primary Care Trusts. The authors conclude that there is still some way to go before minimum standards of satisfactory performance in the provision of health checks are achieved nationally. They point to the necessity of considering possible obstacles to provision and how these can be addressed to improve uptake further.
The “transition cliff” in the administrative prevalence of learning disabilities in England
- Authors:
- EMERSON Eric, GLOVER Gyles
- Journal article citation:
- Tizard Learning Disability Review, 17(3), 2012, pp.139-143.
- Publisher:
- Emerald
The central aim of the Learning Disabilities Public Health Observatory (LDPHO) is to improve the effectiveness and efficiency of the commissioning of health and other public services for people with learning disabilities, and through this to improve the health of, and reduce the health inequalities experienced by, children and adults with learning disabilities across England. The aim of this paper is to report on research done by the LDPHO on the age-specific administrative prevalence of learning disabilities in England. Drawing on a secondary analysis of data from national education, health and social care agencies, it demonstrates that there is an abrupt decline in the age-specific administrative prevalence of learning disabilities at the point of transition to adult services. The findings highlight the existence of a ‘hidden majority’ of adults with learning disabilities. This data has implications for commissioning better health services for people with learning disabilities. First, health information systems should incorporate better ways of identifying patients with mild and moderate learning disabilities. Second, consideration should be given to the extension of annual health checks to include all young people who have had a Statement of Special Educational Needs.
General hospital care for people with intellectual disabilities
- Authors:
- GLOVER Gyles, FOX Sebastian, HATTON Chris
- Journal article citation:
- Tizard Learning Disability Review, 21(1), 2016, pp.43-49.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to explore the extent of compliance of commissioners and providers of hospital services in England with their duty under equalities legislation to be aware of patients with intellectual disabilities as a first step to making appropriate provision for their consequent specific needs. Design/methodology/approach: National survey of healthcare commissioners undertaken as part of an annual learning disabilities services audit. Findings: In total, 41.4 per cent of local areas were unable to supply information about numbers of people with intellectual disabilities among those admitted to hospital, 46.7 and 48 per cent, respectively, could not supply this information about out-patient and accident and emergency department attenders. Figures supplied by those able to provide data varied very substantially and overall were so low as to suggest considerable numbers had been missed. Research limitations/implications: The study is testing what local health commissioners are able to find out from hospitals. The authors do not know the accuracy of the data they reported. Practical implications: The study suggests approaching half of healthcare commissioners in England have little or no information about the extent of proper adjustment of hospital care for people with intellectual disability in their area. Their responsibility to assure this has been repeatedly asserted by government. Social implications: The study indicates a need for more work to improve hospital care for people with intellectual disabilities. Originality/value: This was a government sponsored national study to which local healthcare commissioners were expected to contribute. (Publisher abstract)