Intellectual Disabilities In England Research Articles

Health systems, health policies, and health issues for people with intellectual disabilities in England

AbstractPeople with intellectual disabilities face health disparities, including in high‐income countries such as the United Kingdom, despite publicly funded healthcare. This paper describes the healthcare system in England (a nation of the United Kingdom) for the general population, and more specifically for people with intellectual disabilities. Key legislation that impacts the lives of people with intellectual disabilities, such as the UK Equality Act 2010 (https://www.legislation.gov.uk/ukpga/2010/15/contents), the Mental Capacity Act 2005 (https://www.legislation.gov.uk/ukpga/2005/9/contents), and the UN Convention on the Rights of Persons with Disabilities, and its implementation in the United Kingdom, is discussed. The role of deinstitutionalization and the shift to living in the community for people with intellectual disabilities is also discussed. Programmes that have been implemented to address the health disparities experienced by people with intellectual disabilities are reviewed. Finally, the recent changes to healthcare organization in the UK, the COVID‐19 pandemic, and the implementation of the Valuing People white paper are discussed.

Association of biological sex with clinical outcomes and biomarkers of Alzheimer's disease in adults with Down syndrome.

The study of sex differences in Alzheimer's disease is increasingly recognized as a key priority in research and clinical development. People with Down syndrome represent the largest population with a genetic link to Alzheimer's disease (>90% in the 7th decade). Yet, sex differences in Alzheimer's disease manifestations have not been fully investigated in these individuals, who are key candidates for preventive clinical trials. In this double-centre, cross-sectional study of 628 adults with Down syndrome [46% female, 44.4 (34.6; 50.7) years], we compared Alzheimer's disease prevalence, as well as cognitive outcomes and AT(N) biomarkers across age and sex. Participants were recruited from a population-based health plan in Barcelona, Spain, and from a convenience sample recruited via services for people with intellectual disabilities in England and Scotland. They underwent assessment with the Cambridge Cognitive Examination for Older Adults with Down Syndrome, modified cued recall test and determinations of brain amyloidosis (CSF amyloid-β 42 / 40 and amyloid-PET), tau pathology (CSF and plasma phosphorylated-tau181) and neurodegeneration biomarkers (CSF and plasma neurofilament light, total-tau, fluorodeoxyglucose-PET and MRI). We used within-group locally estimated scatterplot smoothing models to compare the trajectory of biomarker changes with age in females versus males, as well as by apolipoprotein ɛ4 carriership. Our work revealed similar prevalence, age at diagnosis and Cambridge Cognitive Examination for Older Adults with Down Syndrome scores by sex, but males showed lower modified cued recall test scores from age 45 compared with females. AT(N) biomarkers were comparable in males and females. When considering apolipoprotein ɛ4, female ɛ4 carriers showed a 3-year earlier age at diagnosis compared with female non-carriers (50.5 versus 53.2 years, P = 0.01). This difference was not seen in males (52.2 versus 52.5 years, P = 0.76). Our exploratory analyses considering sex, apolipoprotein ɛ4 and biomarkers showed that female ɛ4 carriers tended to exhibit lower CSF amyloid-β 42/amyloid-β 40 ratios and lower hippocampal volume compared with females without this allele, in line with the clinical difference. This work showed that biological sex did not influence clinical and biomarker profiles of Alzheimer's disease in adults with Down syndrome. Consideration of apolipoprotein ɛ4 haplotype, particularly in females, may be important for clinical research and clinical trials that consider this population. Accounting for, reporting and publishing sex-stratified data, even when no sex differences are found, is central to helping advance precision medicine.

Antiseizure medications prescribing for behavioural and psychiatric concerns in adults with an intellectual disability living in England.

Antiseizure medications (ASMs) are the second most widely prescribed psychotropic for people with intellectual disabilities in England. Multiple psychotropic prescribing is prevalent in almost half of people with intellectual disabilities on ASMs. This analysis identifies limited evidence of ASM benefit in challenging behaviour management and suggests improvements needed to inform clinical practice.

Health Needs and Their Relationship with Life Expectancy in People with and without Intellectual Disabilities in England.

Health needs are common in people living with intellectual disabilities, but we do not know how they contribute to life expectancy. We used the Clinical Practice Research Datalink (CPRD) linked with hospital/mortality data in England (2017–2019) to explore life expectancy among people with or without intellectual disabilities, indicated by the presence or absence, respectively, of: epilepsy; incontinence; severe visual loss; severe visual impairment; severe mobility difficulties; cerebral palsy and PEG feeding. Life expectancy and 95% confidence intervals were compared using flexible parametric methods. At baseline, 46.4% (total n = 7794) of individuals with intellectual disabilities compared with 9.7% (total n = 176,807) in the comparison group had ≥1 health need. Epilepsy was the most common health need (18.7% vs. 1.1%). All health needs except hearing impairment were associated with shorter life expectancy: PEG feeding and mobility difficulties were associated with the greatest loss in life years (65–68% and 41–44%, respectively). Differential life expectancy attenuated but remained (≈12% life years lost) even after restricting the population to those without health needs (additional years expected to live at 10 years: 65.5 [60.3, 71.1] vs. 74.3 [73.8, 74.7]). We conclude that health needs play a significant role but do not explain all of the differential life expectancy experienced by people with intellectual disabilities.

The Impact of Austerity Measures on People with Intellectual Disabilities in England

Context: UK austerity measures following the 2008 financial crisis included budget reductions for health and social care. We aimed to investigate the extent to which austerity-measures had impacted the lives of people with intellectual disabilities in England, and whether their support costs were associated with their characteristics, needs and outcomes.Objectives: We report on what services people with intellectual disabilities were using, whether they had lost care, the costs of their support, and what impact any loss of benefits and services had on individuals’ lives.Methods: 150 participants with intellectual disabilities across England were interviewed about their services and their well-being. Service and individual support costs were calculated. Statistical and thematic analyses were employed.Results: The largest proportion (42%) of our sample had lost care. 14% had experienced changed care, and care had remained the same for 36%. Only 7% said their care had improved. No associations were found between costs and characteristics and needs except for whether the person had mild or severe intellectual disabilities. Those who had lost care engaged in fewer activities and had significantly lower self-esteem and quality-of-life scores compared with those who had not lost care. Loss of care impacted on individuals’ independence and future aspirations.Limitations: A comparative study of austerity impacts across the whole of England was not possible. Our costs data may be underestimated because full information on support from home, key, or support workers was unavailable.Implications: In attempting to mitigate against COVID-19 impacts on people with intellectual disabilities, policy-decisions will need to consider the backlog of a decade of cuts.

Mortality disparities and deprivation among people with intellectual disabilities in England: 2000–2019

BackgroundThe effect of policy initiatives and deprivation on mortality disparities in people with intellectual disabilities is not clear.MethodsAn electronic health record observational study of linked primary care data in England...

An observational cohort study of numbers and causes of preventable general hospital admissions in people with and without intellectual disabilities in England.

Hospital admissions for preventable reasons [ambulatory care sensitive (ACS) conditions] can indicate gaps in access to or quality of primary care. This paper seeks to document the numbers and causes of these admissions in England for people with intellectual disabilities (ID) compared with those without. Observational cohort study of number and duration of emergency admitted patient episodes for ACS conditions, overall and by cause, using the Clinical Practice Research Datalink GOLD primary care database and the linked Hospital Episode Statistics Admitted Patient Care dataset. The study covered 5.2% of the population of England from April 2010 to March 2014 giving a total population base of 59280 person-years for people with ID and 11103910 for people without identified ID. The rate of emergency admissions for ACS conditions for people with ID was 77.5 per 1000 person-years. As a crude comparison, this was 3.0 times the rate for those without ID, but standardising for the distinct demography of this group, the number of episodes was 4.8 times that expected if they had the same age-specific and sex-specific rates. Stay durations for these episodes were longer for both young-age and working-age people with ID. Overall people with ID used 399.8 bed-days per 1000 person-years. As a crude comparison, this is 2.8 times the figure for people without ID. Standardising for their age and sex profile, it is 5.4 times the number expected if they had the same age-specific and sex-specific rates. For patients with ID, 16.6% (one in six) of all admitted patient episodes and 24.3% (one in four) of in-patient care days for people with ID were for ACS conditions. Corresponding figures for those without ID were 8.3% (one in 12) and 14.4% (one in seven). The difference in rates between those with and without ID was most marked in people of working age. The three most common causes of emergency episodes for ACS conditions in people with ID were convulsions and epilepsy, influenza pneumonia and aspiration pneumonitis. Influenza pneumonia was also a common cause for people without ID. Episodes for convulsions and epilepsy and aspiration pneumonitis were specifically associated with people with ID. Rates of hospital admissions for ACS conditions provide an important indicator of health literacy, basic self-care (or support by carers) and the accessibility of primary care. High rates are seen for some conditions specifically associated with premature death in people with ID. Local monitoring of these figures could be used to indicate the effectiveness of local primary health services in providing support to people with ID.

An observational study of the use of acute hospital care by people with intellectual disabilities in England.

Providing safe, high-quality admitted-patient care for people with intellectual disabilities (IDs) requires consideration for their special needs particularly in relation to communication and consent. To make allowance for these special requirements, it would be helpful for hospitals to know how often they are likely to arise. This study set out to identify the amount and patterns of use of acute, non-psychiatric hospital admitted-patient care in England by people with ID. Patterns are considered in relation to clinical specialties, modes of admission (emergency or planned) and life stages (children and young people, working age and older adults). In each case, patterns for people with ID are compared with patterns for those without. Descriptive observational study using a major general practitioner (GP) research database (Clinical Practice Research Datalink GOLD) linked to routine national statistical records of admitted-patient care. Overall people identified by their GP as having ID had higher rates of admitted-patient care episodes and longer durations of stay than those without. Differences varied considerably between clinical specialties with rates more elevated in medical and paediatric than surgical specialties. Admitted-patient care rates for women with ID in obstetrics and gynaecology were lower than for other women, while rates for admitted-patient dental care were much higher for both men and women with ID. In an average English health administrative area with a local population of 250000 people, at any time, there are likely to be approximately 670 people receiving acute admitted-patient care. Approximately six of these are likely to have been identified by their GP as having ID. At 0.9% of hospital in-patients, this is just under twice the proportion in the population. Our figures are likely to be an underestimate as GP identification of people with ID is known to be far from complete. However, they indicate that the number of people with ID in acute hospital settings is likely to be substantially more than a recent survey of English health services indicated they were aware of. The study is intended to help guide expectations for acute hospitals seeking to audit the completeness of their identification of people with ID and to indicate their likely distribution between clinical specialties.

To what extent are midwives adapting antenatal information for pregnant women with intellectual disabilities? A survey of NHS trusts in England

ObjectivesTo identify the existing antenatal information provision practices for pregnant women with intellectual disabilities in England. To identify how practices between and within local supervising authorities differed, and if midwives were adapting standard antenatal information for pregnant women with intellectual disabilities, including examples of accessible information being used. Study designCross-sectional survey. MethodsAll contact supervisors of midwives from acute trusts with maternity services were accessed via the local supervisor of midwives officers' databases and sent a questionnaire. Quantitative data were collated. Associations between trust size, geographical location, antenatal provision and National Institute for Health and Care Excellence guidelines alongside National policy were examined using Fischer's exact test of association. ResultsContact supervisors of midwives returned a questionnaire on behalf of their trust (74, 53%). The majority worked in maternity units with more than 4000 births a year (50, 66%). Few trusts had a specialist or lead midwife in post for pregnant women with intellectual disabilities (17, 22.9%) but over half (39, 52.7%) reported that their trust had a specialist learning disability nurse in post. Only 28.3% reported availability of post registration training and even fewer (8, 10.8%) had access to written protocols. Less than half reported extra time being offered at the booking (29, 39.1%) or routine antenatal appointments (30, 40.5%). Less than a quarter (17, 22.9%) reported that their trust had routine antenatal written information available in accessible formats. ConclusionReasonable adjustments to standard antenatal information for pregnant women with intellectual disabilities were not common practice. Most trusts did not have local guidelines in place or offer midwives post registration education to help support them in this requirement.

Living with family: perceptions of health and subjective well-being of adults with an intellectual disability.

Little is known about the role of living circumstances to the perception of subjective well-being (SWB) and health of adults with intellectual disability (ID). The aim of the present study was to examine whether living circumstances impact differently on the perception of health and SWB and whether potential differences persist after accounting for other variables (e.g. level of support needs and reporting method). Secondary data analysis was undertaken of a large national survey of adults with an ID in England, aged 16years and over. Participants were identified as living with family (N=1528) or living out of home (N=874). The results of t-test and chi-square revealed that levels of health and SWB were perceived as being higher for people living with family than those living in out-of-home settings. Multiple linear regression analyses fitted to explore factors associated with these reported differences revealed that, when controlling for other variables, living with family was highly associated with reports of better SWB. Multiple logistic regression revealed that whilst the health status of people living with families were perceived as better, this was only true when their support needs were low. Poorest health outcomes were found for people with highest support needs who lived with family. On the whole, the health and well-being of adults living with family were perceived more positively than those living out of home. However, potential health disparities exist for those with high support needs who live with family. Further longitudinal research is needed to explore causes and potential solution to these inequalities.

The mental health of adolescents with and without mild/moderate intellectual disabilities in England: Secondary analysis of a longitudinal cohort study.

Children with mild/moderate intellectual disabilities are at greater risk for mental health problems, with socio-economic factors and adversity partly accounting for this. Fewer data are available for adolescents. Secondary analysis was undertaken of the Next Steps annual panel study following a cohort through adolescence into adulthood containing self-report mental health data up to age 16/17. Participants with mild/moderate intellectual disabilities were identified through data linkage with educational records. Adolescents with mild/moderate intellectual disabilities were more likely than non-disabled peers to experience socio-economic disadvantage and bullying. Incidence rates of mental health problems were generally not significantly different between adolescents with and without intellectual disabilities. These findings are consistent with higher rates of persistent mental health problems beginning earlier among children with intellectual disabilities. Greater attention needs to be paid to the timecourse of mental health problems, and the impact of socio-economic factors, family and peers on mental health.

Economic and ethical implications of improving access to health care for older people with intellectual disabilities in England: a cost-effectiveness modelling study of health checks

BackgroundAn increasing number of people with intellectual disabilities are reaching old age. Knowledge has emerged internationally about the complex and largely unmet health needs of this specific ageing population, and associated costs. Annual health checks, incentivised but not mandatory for primary care in England, seek to reduce health inequities for this population. However, their cost-effectiveness is unknown. Our study aimed to address this evidence gap. MethodsWe developed a decision analytical Markov model to compare a strategy in which older people with intellectual disabilities received annual health checks with standard care. The model, developed to inform a guideline for the National Institute for Health and Care Excellence (NICE), followed hypothetical cohorts of 1000 people in England from when they were 40 years old until they died. Outcome measure was cost per quality-adjusted life-year (QALY) gained. We calculated incremental cost-effectiveness ratios (ICER). Costs were assessed from a health provider perspective and expressed in 2016 British pounds. Costs and QALYs were discounted at 3·5%. We carried out probabilistic sensitivity analysis. Data from published studies as well as expert opinions informed parameters. FindingsAnnual health checks led to a mean QALY gain of 0·072 (95% CI 0·069–0·113) and mean incremental costs of £4911 (4897–5133). For a threshold of £30 000, annual health checks were not cost effective (mean ICER £89 200, 95% CI 86 252 to 136 769). Costs of intervention needed to reduce from £258 to under £100 per year for annual health checks to be cost effective. InterpretationAlthough our findings need to be considered with caution since the model was based on assumptions to overcome evidence gaps, they suggest that providing cost-effective annual health checks is difficult. This immediately raises ethical questions about equitable access to health checks and health itself. Additional resources are needed if health systems are to contribute to a fairer society. FundingNICE.

Preventable Emergency Hospital Admissions Among Adults With Intellectual Disability in England

Adults with intellectual disabilities experience poorer physical health and health care quality, but there is limited information on the potential for reducing emergency hospital admissions in this population. We describe overall and preventable emergency admissions for adults with vs without intellectual disabilities in England and assess differences in primary care management before admission for 2 common ambulatory care-sensitive conditions (ACSCs). We used electronic records to study a cohort of 16,666 adults with intellectual disabilities and 113,562 age-, sex-, and practice-matched adults without intellectual disabilities from 343 English family practices. Incident rate ratios (IRRs) from conditional Poisson regression were analyzed for all emergency and preventable emergency admissions. Primary care management of lower respiratory tract infections and urinary tract infections, as exemplar ACSCs, before admission were compared in unmatched analysis between adults with and without intellectual disabilities. The overall rate for emergency admissions for adults with vs without intellectual disabilities was 182 vs 68 per 1,000 per year (IRR = 2.82; 95% CI, 2.66-2.98). ACSCs accounted for 33.7% of emergency admissions among the former compared with 17.3% among the latter (IRR = 5.62; 95% CI, 5.14-6.13); adjusting for comorbidity, smoking, and deprivation did not fully explain the difference (IRR = 3.60; 95% CI, 3.25-3.99). Although adults with intellectual disability were at nearly 5 times higher risk for admission for lower respiratory tract infections and urinary tract infections, they had similar primary care use, investigation, and management before admission as the general population. Adults with intellectual disabilities are at high risk for preventable emergency admissions. Identifying strategies for better detecting and managing ACSCs, including lower respiratory and urinary tract infections, in primary care could reduce hospitalizations.

Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N=260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio-demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care-giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar-sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well-being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population-representative data. Poverty and long care-giving hours may make caregivers more susceptible to negative well-being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.

Equity in social care for people with intellectual disabilities? A cross-sectional study examining the distribution of social care funding across local authorities in England.

Many people with intellectual disabilities rely on social care provision, though little research has looked at how access to such provision is distributed nationally. Evidence from children's services suggests that there are large discrepancies between local authorities (LAs) in terms of the resources expended on interventions with children and families, which can be explained by variations linked to geographical location, namely the level of socioeconomic deprivation between LAs, constituting 'child welfare inequalities'. This study explored relationships between resources allocated to community services for people with intellectual disabilities in England and geographical factors, including deprivation, rurality and political leadership in the LAs where these individuals reside. Data were sourced from publicly available reports of spending of 151 English councils with adult social services responsibilities (CASSRs) for 2013-2014 and from CASSR index of multiple deprivation (IMD) scores and rurality for the same period. We found that more deprived LAs supported more people with intellectual disabilities, per 100,000 of population. We did not find effects for rurality or political party. However, it was not the case that more deprived LAs allocated more funds for expenditure on this group. These findings point to inequities in the distribution of social care resources for people with intellectual disabilities in England, as although more deprived LAs support more people with intellectual disabilities, they do not spend proportionally larger sums of money on this group. We discuss possible explanations for these findings and highlight the need for more research, particularly investigations about allocation of resources within LAs and more detailed explorations of how structural factors such as socioeconomic status of service users effects service access at the local level.

Mortality in people with intellectual disabilities in England.

People with intellectual disabilities (IDs) die at younger ages than the general population, but nationally representative and internationally comparable mortality data about people with ID, quantifying the extent and pattern of the excess, have not previously been reported for England. We used data from the Clinical Practice Research Datalink database for April 2010 to March 2014 (CPRD GOLD September 2015). This source covered several hundred participating general practices comprising roughly 5% of the population of England in the period studied. General practitioner (GP) records identified people diagnosed by their GP as having ID. Linked national death certification data allowed us to derive corresponding mortality data for people with and without ID, overall and by cause. Mortality rates for people with ID were significantly higher than for those without. Their all-cause standardised mortality ratio was 3.18. Their life expectancy at birth was 19.7 years lower than for people without ID. Circulatory and respiratory diseases and neoplasms were the three most common causes of death for them. Cerebrovascular disease, thrombophlebitis and pulmonary embolism all had standardised mortality ratios greater than 3 in people with ID. This has not been described before. Other potentially avoidable causes included epilepsy (3.9% of deaths), aspiration pneumonitis (3.6%) and colorectal cancer (2.4%). Avoidable mortality analysis showed a higher proportion of deaths from causes classified as amenable to good medical care but a lower proportion from preventable causes compared with people without ID. International comparison to areas for which data have been published in sufficient detail for calculation of directly standardised rates suggest England may have higher death rates for people with ID than areas in Canada and Finland, and lower death rates than Ireland or the State of Massachusetts in the USA. National data about mortality in people with ID provides a basis for public health interventions. Linked data using GP records to identify people with ID could provide comprehensive population-based monitoring in England, unbiased by the circumstances of illnesses or death; to date information governance constraints have prevented this. However, GPs in England currently identify only around 0.5% of the population as having ID, suggesting that individuals with mild, non-syndromic ID are largely missed. Notably common causes of death suggest control of cardiovascular risk factors, epilepsy and dysphagia, management of thrombotic risks and colorectal screening are important areas for health promotion initiatives.

A survey of consultant psychiatrists in intellectual disability based in England

Purpose Community mental health services are of increasing importance for people with an intellectual disability (ID), as the government aims to reduce the number of people treated within inpatient services. However, due to limited evidence base, it is unclear which service models are most effective for treating people with both ID and a mental health condition. Therefore, the purpose of this paper is to carry out a survey in order to gain a better understanding of the current state of ID community services. Design/methodology/approach The survey was e-mailed to 310 consultant psychiatrists based in England and whose main specialism was in ID. In total, 65 consultants responded to the survey with 53 complete data sets. Findings In total, 84 per cent of consultants identified themselves as working in a generic community ID team. The majority of services were not integrated with social care (71 per cent). Regional differences were found. In contrast to the rest of England, the majority of services in London were integrated with social care. The Health of the Nation Outcome Scale for people with Learning Disabilities (HoNOS-LD) was found to be the most common outcome measure used by services. A range of interventions are widely available across services including psychological therapies and specialist memory assessments. The survey also provides evidence for increased decommissioning of specialist inpatient units and a need for more robust community services. Research limitations/implications Findings limited by low return rate (21 per cent) and because responses could not be matched to specific services. The implications of this survey are that there is still a variable level of integration with social care and that lack of integration could affect the quality of service. While HoNOS-LD is used consistently across services, there may be a need to supplement it with other outcome measures. There is a need for larger scale and higher quality studies in this area to strengthen the evidence base and therefore demonstrate the benefits of integration and specialisation more convincingly to health professionals and commissioners. Originality/value This survey presents an overview of the current state of community services for adults with ID in England. This information can be harnessed to add to revised approaches to mental health service models for people with ID.

Mortality Among Adults With Intellectual Disability in England: Comparisons With the General Population.

To describe mortality among adults with intellectual disability in England in comparison with the general population. We conducted a cohort study from 2009 to 2013 using data from 343 general practices. Adults with intellectual disability (n = 16 666; 656 deaths) were compared with age-, gender-, and practice-matched controls (n = 113 562; 1358 deaths). Adults with intellectual disability had higher mortality rates than controls (hazard ratio [HR] = 3.6; 95% confidence interval [CI] = 3.3, 3.9). This risk remained high after adjustment for comorbidity, smoking, and deprivation (HR = 3.1; 95% CI = 2.7, 3.4); it was even higher among adults with intellectual disability and Down syndrome or epilepsy. A total of 37.0% of all deaths among adults with intellectual disability were classified as being amenable to health care intervention, compared with 22.5% in the general population (HR = 5.9; 95% CI = 5.1, 6.8). Mortality among adults with intellectual disability is markedly elevated in comparison with the general population, with more than a third of deaths potentially amenable to health care interventions. This mortality disparity suggests the need to improve access to, and quality of, health care among people with intellectual disability.

‘They’ve said I’m vulnerable with men’: Doing sexuality on locked wards

In intellectual disability services, women’s sexuality has long been considered a problem, with women being removed from their residences and segregated from men as a form of protection. This paper draws on ethnographic research based on a secure unit for people with intellectual disabilities in England. It suggests that staff and clients are concerned about the client mix on the unit, and that staff feel protective towards women service-users. Physical contact on the wards is highly regulated and all spaces are described as ‘public’, therefore women are not afforded privacy to explore their sexuality. During interviews, many of the women disclosed experiences of childhood sexual abuse and some were unsure about their sexual orientation. This paper argues that life on the locked ward positions intellectually disabled women as both sexually vulnerable and as fundamentally asexual. This prevents women from learning the skills needed to make informed choices about sexual partners.

The factors associated with care-related quality of life of adults with intellectual disabilities in England: implications for policy and practice.

Over the last three decades, quality of life (QoL) has been advocated as an indicator of social care outcomes for adults with intellectual disabilities. In England, the Adult Social Care Survey (ASCS) is conducted annually by local authorities to contribute to the evidence base of the care‐related QoL of people receiving publicly funded adult social care. This study explores relationships between QoL and non‐care‐related factors to identify relationships that could inform social care policy and practice. Cross‐sectional data collected from 13,642 adults who participated in the 2011 and 2012 ASCS were analysed using regression to explore the factors associated with QoL measured using the Adult Social Care Outcomes Toolkit (ASCOT). Self‐rated health, rating of the suitability of home design and anxiety/depression were all found to be significantly associated with ASCOT. Other individual and survey completion factors were also found to have weak significant relationships with ASCOT. The models also indicate that there was an increase in overall ASCOT‐QoL and in five of the eight ASCOT domains (Personal comfort and cleanliness, Safety, Social participation, Occupation and Dignity) between 2011 and 2012. These findings demonstrate the potential value of QoL data for informing policy for people with intellectual disabilities by identifying key factors associated with QoL, the characteristics of those at risk of lower QoL, and QoL domains that could be targeted for improvement over time. Future research should establish causal relationships and explore the risk adjustment of scores to account for variation outside of the control of social care support.