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Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long-term, generic care settings in the UK
- Authors:
- TODD Stuart, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(6), 2021, pp.1489-1498.
- Publisher:
- Wiley
Rationale: This paper concerns mortality and needs for end-of-life care in a population of adults with ID living in generic care homes. Methods: Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included the Surprise Question. At T2, 12 months later, data were obtained on the survival of this sample. Findings: The average age was 68.6 years, and the majority were women (55.3%). Their health was typically rated as good or better. Responses to the Surprise Question indicated that 23.3% respondents might need EoLC. At T2, 18.0% of this population had died. The average of death was 72.2 years. The majority died within the care setting (62.9%). Implications: The implications for end-of-life care and mortality research are discussed. (Edited publisher abstract)
The COVID-19 pandemic should be last orders for poor care of people with neurodevelopmental disorders
- Authors:
- STRYDOM Andre, CORCORAN Elizabeth, REBILLAT Anne-Sophie
- Journal article citation:
- British Journal of Psychiatry, 218(6), 2021, pp.302-304.
- Publisher:
- Cambridge University Press
We explore whether the needs of individuals with neurodevelopment disorders have been overlooked during the coronavirus disease 2019 (COVID-19) pandemic and set out the issues that need to be considered in response to future health crises and pandemics. (Edited publisher abstract)
Care home census 2013: statistics on adult residents in care homes in Scotland
- Publishers:
- ISD Scotland, Information Services Division, NHS National Services Scotland
- Publication year:
- 2013
- Pagination:
- 35
- Place of publication:
- Edinburgh
This publication presents information on adult residents in Care Homes in Scotland collected as part of the annual Scottish Care Home Census (SCHC) held at 31st March 2013. The census covers all adult care homes in Scotland that are registered with the Care Inspectorate and data are collected via the Care Inspectorate’s web based “eForms” system. The report also includes care homes for older people, and care homes for other main client groups (adults with physical disabilities, adults with mental health problems or adults with learning disabilities). As at 31st March 2013 there were 1,282 care homes for adults in Scotland providing 42,755 places to 36,578 residents. This report notes that for the 2011 census, ISD Scotland (Ihe Information Services Division of NHS National Services Scotland) published two reports: an interim report and a detailed findings report. For the 2012 census onwards, ISD has produced a single annual report. (Edited publisher abstract)
Our checks of learning disability services in England: easy read
- Author:
- CARE QUALITY COMMISSION
- Publisher:
- Care Quality Commission
- Publication year:
- 2012
- Pagination:
- 16p.
- Place of publication:
- London
Inspections of 150 services for people with learning disabilities following the poor care and abuse found at Winterbourne view, a private hospital for people with learning disabilities. This easy read summary reports on which services were inspected and what the inspectors found. It then provides advice for commissioners who buy services for local councils and health services, service providers, and how the Care Quality Commission carry out their inspections.
Learning disability services inspection programme: national overview
- Author:
- CARE QUALITY COMMISSION
- Publisher:
- Care Quality Commission
- Publication year:
- 2012
- Pagination:
- 56p.
- Place of publication:
- London
In response to the serious abuse and poor standards of care at Winterbourne View, a series of unannounced inspections of learning disability services were carried out by the Care Quality Commission. This national overview report provides an analysis of the findings of 150 unannounced inspections of services providing care for people with learning disabilities and challenging behaviours in England. These included 71 NHS trusts and 47 independent healthcare services providing assessment and treatment and secure services, and 32 adult social care services providing residential care. Inspections were carried out against two 'outcomes: outcome 4 (care and welfare of people who use services) and outcome 7 (safeguarding people who use services from abuse). The report highlights the key areas of concern for overall compliance and for each outcome. Of the 145 inspections included in the report (five of the inspections were pilots and not included) 35 met both standards, 41 met both standards with minor concerns and 69 failed to meet both standards. The report also states that there is no need for additional guidance, but the need to ensure that existing guidance in implemented. The findings demonstrate that services for people with learning disabilities still need to improve and that this requires a whole system response and approach from the policy makers, the providers, the commissioners and the regulators. Separate recommendations are provided for commissioners, providers and the Care Quality Commission.
Care home census for adults in Scotland statistics for 2009-2019
- Author:
- Public Health Scotland
- Publisher:
- Public Health Scotland
- Publication year:
- 2020
- Pagination:
- 44
- Place of publication:
- Glasgow
This release provides information from the annual Care Home Census for Adults in Scotland on the numbers of care homes, registered places, residents, admissions and discharges. In relation to all care homes for adults the data shows that: at 31 March 2019, there were 1,102 care homes for adults and 41,032 registered places – these are a 22% and 5% decrease since 31 March 2009, respectively; there were an estimated 35,630 residents aged 18 years and over in care homes – a 5% decrease since 31 March 2009; from 31 March 2009 to 31 March 2019, the estimated percentage occupancy increased slightly, from 86% to 87%; on 31 March 2019, residents in care homes for older people accounted for 91% of residents in all care homes for adults. Main points relating to care homes for older people include: at 31 March 2019, there were an estimated 30,914 long stay residents in care homes for older people – a reduction of 4% since 31 March 2009 (32,226); and there were 1,531 residents in a care home for these purposes – an increase of 49% compared with 31 March 2009 (1,029). In relation to care homes for learning disabilities, mental health problems, and physical and sensory impairment the data shows that: on 31 March 2019, there were 159 care homes for learning disabilities providing 1,587 places, 55 care homes for mental health problems providing 978 places, and 41 care homes for physical and sensory impairment providing 666 places; the estimated percentage occupancy in care homes for learning disabilities was 89%, and was 92% in care homes for mental health problems, and physical and sensory impairment. (Edited publisher abstract)
Covid-19 Insight: issue 7
- Author:
- CARE QUALITY COMMISSION
- Publisher:
- Care Quality Commission
- Publication year:
- 2020
- Pagination:
- 22
- Place of publication:
- Newcastle upon Tyne
This report shares data on the designated settings scheme for adult social care, and looks into more detail on data on deaths from COVID-19. The data shows that between 1 December 2020 and 12 January 2021, the number of acute hospital beds occupied by COVID-19 patients increased by around 138% nationally. The average COVID-19 occupancy rate was 27% in the seven days to 12 January, compared with 22% in the previous seven days. Two trusts currently have rates above 50%; more than half of their beds are occupied by patients with confirmed COVID-19. The changes have varied considerably across regions. Whereas, for example, the North East and Yorkshire saw a relatively small increase from 1 December 2020 to 12 January 2021, the South East, East of England and London have all seen very large increases. The number of acute beds occupied by COVID-19 patients in London more than quadrupled in the space of six weeks. The report also examines whether there were any differences in the propensity for deaths to be flagged for COVID-19 between people with a learning disability or autism and those without. It finds that: people with a learning disability were slightly more likely to have died with confirmed or suspected Covid-19 than others in care homes whose death was notified; the data showed no discernible differences based on sufficiently large numbers between the deaths of people from Black and minority ethnic groups, with and without a learning disability or autism, and White people with or without a learning disability or autism; people from Black and minority ethnic groups who died were slightly younger in age than White people who died, reflecting demographic trends in the wider population. (Edited publisher abstract)
Care provider statement of intent to involve siblings
- Author:
- SIBS
- Publisher:
- Sibs
- Publication year:
- 2018
- Pagination:
- 1
- Place of publication:
- London
A one page provider statement which can be used by care providers to show their commitment to communicating with and actively involving siblings in the care of a brother or sister with learning disabilities and/or autism. The statement for care homes and supported living settings was produced by Sibs, a charity for brothers and sisters of disabled children and adults. (Edited publisher abstract)
Monitoring the Deprivation of Liberty Safeguards in 2014/15
- Author:
- CARE QUALITY COMMISSION
- Publisher:
- Care Quality Commission
- Publication year:
- 2015
- Pagination:
- 32
- Place of publication:
- Newcastle upon Tyne
This is the fifth annual monitoring report on the implementation of the Deprivation of Liberty Safeguards. The report focuses on the impact on outcomes for people who lack mental capacity and may be deprived of their liberty, and highlights CQC actions and recommendations for improvement. The report draws on a range of sources, including analysis of a sample of 214 inspection reports of hospitals and care homes inspected in 2014/15 and data on Deprivation of Liberty Safeguards notifications received by CQC in 2014/15. Short case studies and good practice examples are included within the report. Key findings show there has been a tenfold rise in Deprivation of Liberty Safeguards applications from 13,715 in the year ending March 2014 to 137,540 by March 2015 which has also resulted in a backlog in local authority processing of applications. Evidence from CQC inspections also found that providers' use of the Deprivation of Liberty Safeguards was variable in relation to levels of staff training and awareness and the existence and implementation of policies and processes. Examples where provides may be unlawfully depriving people of their liberty were also identified. (Edited publisher abstract)
Seeing it from their side: a guide to recognising and supporting sight loss in your care home
- Author:
- ROYAL NATIONAL INSTITUTE FOR THE BLIND
- Publisher:
- Royal National Institute for the Blind
- Publication year:
- 2012
- Pagination:
- 15p.
- Place of publication:
- London
Sight loss becomes increasingly likely with age, currently affecting 1 in 5 people over 75 and 1 in 2 people over 90. People with a learning disability are also far more likely to be blind or partially sighted compared with the general population. Therefore a significant proportion of residents in residential homes for older people or people with a learning disability are likely to have a degree of sight loss which has a serious effect on the quality of their lives. This care home guide is designed to help providers understand the needs of people with sight loss and to make changes that can make a difference for people in their care who suffer from sight problems. The guide provides information about: the main causes of sight loss; how to identify sight loss in residents; how to improve things (such as lighting levels) around the care home; how to meet the specific needs of residents; and dementia and sight loss. As well as making the care home a happier and safer environment, this guidance will also help care homes to meet many of the Care Quality Commission’s outcomes.