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Background: Given the current sociopolitical climate, people with intellectual disabilities are spending more time at home. Much housing-related research focuses on informant-completed measures and quantifiable outcomes. By contrast, this article explores the perspectives of adults with intellectual disabilities concerning what they liked or disliked about their homes., Method: Data is drawn from 53 semi-structured interviews with people with intellectual disabilities in supported living or residential care in England., Results: Three themes were generated: space and place; people make or break a home; and day-to-day autonomy. These highlight the importance of belonging and the significance of other people in the creation of 'home'., Conclusion: If people are to flourish, attention must be paid to aspects of the home that provide comfort, enjoyment, and a sense of belonging. These findings can benefit professionals, family members and people with intellectual disabilities, when considering current or future living arrangements., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Evidence from the UK from the early stages of the covid-19 pandemic showed that people with Intellectual Disabilities (ID) had higher rates of covid-19 mortality than people without ID. However, estimates of the magnitude of risk vary widely; different studies used different time periods; and only early stages of the pandemic have been analysed. Existing analyses of risk factors have also been limited. The objective of this study was to investigate covid-19 mortality rates, hospitalisation rates, and risk factors in people with ID in England up to the end of 2021. Methods: Retrospective cohort study of all people with a laboratory-confirmed SARS-CoV-2 infection or death involving covid-19. Datasets covering primary care, secondary care, covid-19 tests and vaccinations, prescriptions, and deaths were linked at individual level. Results: Covid-19 carries a disproportionately higher risk of death for people with ID, above their already higher risk of dying from other causes, in comparison to those without ID. Around 2,000 people with ID had a death involving covid-19 in England up to the end of 2021; approximately 1 in 180. The covid-19 standardized mortality ratio was 5.6 [95% CI 5.4, 5.9]. People with ID were also more likely to be hospitalised for covid-19 than people without ID. The main determinants of severe covid-19 outcomes (deaths and/or hospitalisations) in both populations were age, multimorbidity and vaccination status. The key factor responsible for the higher risk of severe covid-19 in the ID population was a much higher prevalence of multimorbidity in this population. AstraZeneca vaccine was slightly less effective in preventing severe covid-19 outcomes among people with ID than among people without ID. Conclusions: People with ID should be considered a priority group in future pandemics, such as shielding and vaccinations. [ABSTRACT FROM AUTHOR]

Purpose: This study aims to investigate the demographic and clinical characteristics associated with different risk stratification levels on the Decision Support Tool for Physical Health (DST-PH). The DST-PH was designed to stratify risk of avoidable mortality in adults with intellectual disabilities. Design/methodology/approach: A prospective cohort study design was used. Data, including age, gender, ethnicity and completed DST-PH assessments, was collected from adults with intellectual disabilities within an NHS trust in the North-West of England. Descriptive statistics and a risk factor analysis were used to investigate differences between those rating Red, Amber and Green on the DST-PH. Findings: Risk factor analysis revealed key clinical indicators linked to avoidable mortality. Notably, those experiencing posture or mobility difficulties, transitions in care, an untreated or unstable mental health condition or significant behavioural problems were identified to be at significantly heightened risk of avoidable death. These findings emphasise the importance of proactively recognising and addressing these experiences, particularly posture- and mobility-related challenges, in individuals with intellectual disabilities. It is important to note this study's findings are based on a small sample size. Therefore, further research with a larger and more diverse population is recommended to validate and expand upon these results. Originality/value: To the authors' knowledge, this is the first study which has used a risk stratification tool to investigate the clinical and demographic characteristics of individuals with intellectual disability at higher risk of avoidable mortality. [ABSTRACT FROM AUTHOR]

Background: Research into befriending for people with intellectual disabilities is limited. This study aimed to explore the impact, mechanisms of change, and limitations of a befriending scheme for adults with intellectual disabilities and/or autism. Methods: Participants were recruited using convenience sampling. Thirteen individuals with intellectual disabilities and/or autism were interviewed and data thematically analysed. Results: Four themes were generated: 'Something fun for me'; 'A good connection'; 'Increasing independence'; and 'A life less quiet'. Befriending had direct benefits through the activities undertaken and the befriending relationships themselves being fun and reducing isolation. Befriending facilitated belonging, improved access to mainstream activities, and fostered independence by providing safety and support. The importance of shared interests and external support for the relationship was highlighted. Conclusions: Positive outcomes of befriending were found, supporting existing literature and revealing new information from the voices of participants with intellectual disabilities themselves. [ABSTRACT FROM AUTHOR]

People 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. [ABSTRACT FROM AUTHOR]

Background: There has been extensive research into adverse childhood experiences (ACEs), however, less consideration has been given to the prevalence and impact of ACEs for staff working with people with intellectual disabilities. Method: Participants were staff employed by agencies that care for people with intellectual disabilities. An online survey collected demographic information and measures of ACEs, resilience, trauma‐informed organisational climate, burnout and secondary traumatic stress. Correlation, regression, mediation and moderation analyses were used. Results: 81.7% of 109 participants had experienced at least one ACE. Burnout, secondary traumatic stress and resilience were greater in the present study than in comparable samples. Trauma‐informed organisational climate significantly predicted burnout and secondary traumatic stress. Resilience significantly predicted burnout. Conclusions: Staff working with people with intellectual disabilities are likely to have experienced ACEs. Working in a trauma‐informed organisational climate and resilience may be effective avenues for reducing burnout and secondary traumatic stress. [ABSTRACT FROM AUTHOR]

Interviews with fifteen teachers and educators delivering sex and relationships education to people with intellectual disabilities were conducted. The aim of the study was to investigate their experiences and views. Thematic analysis was used to look for patterns and themes in the verbatim transcripts. Three main themes were identified: challenges when delivering sex education, how to overcome these difficulties, and important topics for sex and relationships education. Implications for delivering sex and relationships education for people with intellectual disabilities and support needed for teachers are discussed. [ABSTRACT FROM AUTHOR]

Competing Interests: I declare no competing interests.

In England, the national mortality review programme for people with intellectual disabilities, the LeDeR programme, was established in 2015. The programme supports local areas to review the deaths of all people with intellectual disabilities aged 4 years and over. Each death has an initial review; if indicated, a full multi-agency review takes place. The learning from the mortality reviews contributes to service improvements locally and nationally. This paper describes the programme's introduction and processes, exploring the challenges faced, and the successes achieved. It considers the background and rationale for the programme and the steps taken during its implementation, in order that others can learn from our experiences. Now the programme is established, its focus needs to shift so that we have a better understanding about how the findings of mortality reviews are leading to local and national service improvements and their impact.

Thirty-one participants engaged in this oral history research study aimed at exploring the lived experience of intellectual disability nurses and healthcare assistants' knowledge of the trajectory of intellectual disability nursing over the last 30 years in the Republic of Ireland and England. This paper documents some of these experiences offering perspectives on intellectual disability nursing and what is important for the future. Findings from Ireland consider the nature of intellectual disability services and the registered nurse in intellectual disability. Findings from England focus on opportunities and restrictions in intellectual disability nursing, shared visions, the changing context within which work took place and also the internal and external supports that impacted their roles. It is evident that intellectual disability nurses must be responsive to the changing landscape of service provision and also the requirements for contemporary new roles to meet the changing needs of people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are a marginalized group whose health experiences and outcomes are poor. Lack of skill and knowledge in the healthcare workforce is a contributing factor. In England, there is a new legislative requirement for mandatory intellectual disability training to be given to the existing healthcare workforce, including doctors. There is a lack of evidence about effective models of educational delivery of such training in medical schools. We undertook a scoping review to assess the range of intellectual disabilities educational interventions and their effectiveness. Methods: We included any study from 1980 onwards which reported an educational intervention on intellectual disability, or intellectual disability and autism, for medical students from any year group. Databases searched included PUBMED, ERIC, Scopus and Web of Science as well as searches of grey literature and hand searching two journals (Medical Education and Journal of Learning Disabilities). 2,020 records were extracted, with 1,992 excluded from initial screening, and a further 12 excluded from full-text review, leaving 16 studies for inclusion. Data was extracted, quality assessed, and findings collated using narrative analysis. Results: We found a variety of intervention types: classroom-based teaching, simulation, placement, home visits, and panel discussions. There was substantial variation in content. Most studies involved lived experience input. Across studies, interventions had different learning outcomes which made it difficult to assess effectiveness. Overall study quality was poor, with high use of non-validated measures, making further assessment of effectiveness problematic. Conclusions: There is a need for more consistency in intervention design, and higher quality evaluation of teaching in this area. Our review has drawn attention to the variety in teaching on this topic area and further research should focus on updating this review as curriculum changes are implemented over time. [ABSTRACT FROM AUTHOR]

Summary: 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. [ABSTRACT FROM AUTHOR]

SUMMARY: Genomic medicine is an evolving medical specialty that uses genomic information about an individual as part of their clinical care (e.g. for diagnostic or therapeutic decision-making). It has rapidly grown since the completion of the Human Genome Project in 2003. In England, the National Health Service's Genomic Medicine Service is considered to be the first national healthcare system to offer whole-genome sequencing as part of routine clinical care. Already, genomic medicine is making an impact in the fields of oncology, pharmacology, rare and undiagnosed diseases, infectious disease and neurology. In this article, we present a useful tool kit for clinicians working with individuals with intellectual disability, autism spectrum disorder and epilepsy. This article provides evidence for the importance of genetic testing, conveys an understanding of the range of genetic tests available and their diagnostic yields and how these apply to intellectual disability, autism spectrum disorder and epilepsy. Our simple tool kit gives information on when to refer to a clinical geneticist and where to find resources for clinicians and parents on genetic testing. [ABSTRACT FROM AUTHOR]

Background: People with epilepsy (PWE) and people with intellectual disabilities (ID) both live shorter lives than the general population and both conditions increase the risk of death further. We aimed to measure associations between certain risk factors for death in PWE and ID. Methods: A retrospective case–control study was conducted in ten regions in England and Wales. Data were collected on PWE registered with secondary care ID and neurology services between 2017 and 2021. Prevalence rates of neurodevelopmental, psychiatric and medical diagnoses, seizure frequency, psychotropic and antiseizure medications (ASM) prescribed, and health activity (epilepsy reviews/risk assessments/care plans/compliance etc.) recorded were compared between the two groups. Results: 190 PWE and ID who died were compared with 910 living controls. People who died were less likely to have had an epilepsy risk assessment but had a greater prevalence of genetic conditions, older age, poor physical health, generalized tonic–clonic seizures, polypharmacy (not ASMs) and antipsychotic use. The multivariable logistic regression for risk of epilepsy-related death identified that age over 50, medical condition prevalence, antipsychotic medication use and the lack of an epilepsy review in the last 12 months as associated with increased risk of death. Reviews by psychiatrists in ID services was associated with a 72% reduction in the odds of death compared neurology services. Conclusions: Polypharmacy and use of antipsychotics may be associated with death but not ASMs. Greater and closer monitoring by creating capable health communities may reduce the risk of death. ID services maybe more likely to provide this holistic approach. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To recognise that people with intellectual disabilities are over-represented in homeless populations, but services may not recognise their intellectual disabilities • To read about the short-term impact of screening with the Learning Disability Screening Questionnaire (LDSQ) on people known to a homeless service • To be aware that use of the LDSQ to identify people with intellectual disabilities in homeless services may lead to positive healthcare outcomes, such as annual health checks. Background: Research suggests that people with intellectual disabilities are over-represented in homeless populations, but services may not recognise their intellectual disability. Aim: To explore the short-term impact of screening with the Learning Disability Screening Questionnaire (LDSQ) on seven people known to a homeless service in England. These participants had been found to have intellectual and adaptive functioning in the intellectual disability range in a larger study of the use of the LDSQ in homeless services. Method: The LDSQ impact questionnaire was used to evaluate participants’ views on the benefits and drawbacks of screening with the LDSQ. Changes in participants’ health status were also explored. Findings: There appeared to be many benefits of using the LDSQ and few drawbacks. Six of the seven participants had been placed on the GP learning disability register following participation in the larger study, of whom four had received an annual health check and two had received new treatment. Conclusion: Using the LDSQ in a homeless service appears to be beneficial for people with intellectual disabilities who are homeless and can lead to positive healthcare outcomes. [ABSTRACT FROM AUTHOR]

SUMMARY: Children with intellectual disability are often prescribed psychotropic medication to manage behaviours that challenge. Unfortunately, many receive medication with potentially serious long-term side-effects that has been prescribed inappropriately or for longer than is necessary. NHS England launched STOMP (stopping the over-medication of people with intellectual disability, autism or both with psychotropic medicines) in 2016 to reduce the inappropriate prescribing in adults. This was broadened to include children in 2018 by the addition of STAMP (supporting treatment and appropriate medication in paediatrics). In this article we review the rationale for STOMP–STAMP, highlight the Royal College of Psychiatrists' position statement on STOMP–STAMP and give clinical advice for psychiatrists who treat children with intellectual disability, autism and/or attention-deficit hyperactivity disorder (ADHD). Importantly, it is essential to consider that ADHD may have been missed and that by diagnosing and treating it, the need for inappropriate antipsychotic medication may be reduced. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to underline the importance of using a collaborative approach when designing and adapting a post diagnostic psychosocial intervention of cognitive stimulation therapy (CST) for people with intellectual disability and dementia. Design/methodology/approach: As part of a service improvement, a manual of CST was adapted, for delivery in clinical practice. A qualitative co-production method allowed participants with a lived experience to provide regular feedback relating to the development of the adapted CST manual and intervention programme. This feedback was used to make continual development changes to the CST manual. Findings: The study demonstrated co-production with those who provide care is valuable in adapting psychosocial therapies for people with an intellectual disability and dementia. Additional findings identified the need for carer education in ageing, dementia care and the physical health needs for older people with intellectual disability. Originality/value: To the best of the authors' knowledge, this is the first study that has used a co-production approach with families and carers in adapting a group therapy programme for people with an intellectual disability. This paper underlines the need for post diagnostic clinical interventions for people with dementia and those who provide care. [ABSTRACT FROM AUTHOR]

Background: Accurate recognition and recording of intellectual disability in those who are admitted to general hospitals is necessary for making reasonable adjustments, ensuring equitable access, and monitoring quality of care. In this study, we determined the rate of recording of intellectual disability in those with the condition who were admitted to hospital and factors associated with the condition being unrecorded. Methods and findings: Retrospective cohort study using 2 linked datasets of routinely collected clinical data in England. We identified adults with diagnosed intellectual disability in a large secondary mental healthcare database and used general hospital records to investigate recording of intellectual disability when people were admitted to general hospitals between 2006 and 2019. Trends over time and factors associated with intellectual disability being unrecorded were investigated. We obtained data on 2,477 adults with intellectual disability who were admitted to a general hospital in England at least once during the study period (total number of admissions = 27,314; median number of admissions = 5). People with intellectual disability were accurately recorded as having the condition during 2.9% (95% CI 2.7% to 3.1%) of their admissions. Broadening the criteria to include a nonspecific code of learning difficulty increased recording to 27.7% (95% CI 27.2% to 28.3%) of all admissions. In analyses adjusted for age, sex, ethnicity, and socioeconomic deprivation, having a mild intellectual disability and being married were associated with increased odds of the intellectual disability being unrecorded in hospital records. We had no measure of quality of hospital care received and could not relate this to the presence or absence of a record of intellectual disability in the patient record. Conclusions: Recognition and recording of intellectual disability in adults admitted to English general hospitals needs to be improved. Staff awareness training, screening at the point of admission, and data sharing between health and social care services could improve care for people with intellectual disability. Rory Sheehan and colleagues investigate how often intellectual disability is recorded when people with the condition are admitted to general hospitals in England. Author summary: Why was this study done?: People with intellectual disability have specific health needs and are more likely to be admitted to hospital than people without intellectual disability. Existing evidence shows that hospital care for people with intellectual disability needs to be improved if the worse health outcomes and health inequalities experienced by this group are to be overcome. Intellectual disability needs to be recognised in healthcare settings in order that individual reasonable adjustments to care can be made. What did the researchers do and find?: We joined 2 databases covering from 2006 to 2019 to investigate how often intellectual disability is recorded when people with the condition are admitted to general hospitals in England. We included 2,477 people with intellectual disability who together had 27,314 admissions to hospital. Intellectual disability was accurately recorded in only 2.9% of all admissions and was more likely to be unrecorded in people with less severe intellectual disability and those who were married. What do these findings mean?: Recognition and recording of intellectual disability in general hospitals in England needs to be improved and must then be followed by processes and procedures that impact the quality and effectiveness of care that people receive. Using English Hospital Episode Statistics (HES) data alone to identify people with intellectual disability accessing general hospital care is insufficient and data linkage with other sources is necessary to obtain a more accurate picture for research and service planning purposes. [ABSTRACT FROM AUTHOR]

Accessible summary: The project aimed to explore discussions from the Personal Relationship Advisory Group (PRAG) meetings in a community adult learning disability team to influence the development of new relationship resources.All meeting minutes within a 12‐month period were analysed to find themes.The themes suggest the importance of the service looking at the whole person, such as their physical, emotional and social well‐being, when there are relationship concerns.New resources that focus on personal sexuality, different types of relationships and Internet safety may be of benefit to the service.Resources for carers may also be useful, such as helping carers to support people with learning disabilities to safely access relationships online. Background: Adults with learning disabilities often face barriers when accessing relationships and can require additional support. The Personal Relationship Advisory Group (PRAG) is a provision in a community learning disability service in North England, which offers multidisciplinary advice regarding relationship concerns. The current project aimed to identify common themes within PRAG to influence the development of new resources in the service. Materials and Methods: All meeting minutes within a 12‐month period were analysed using thematic analysis. There were a total of 16 minutes, which discussed 11 people with learning disabilities. This included six females and five males with a mean age of 30 (SD = 14.97). Results: Individuals often had limited opportunity to develop relationships. There was a lack of understanding of sex and of how to behave appropriately in different types of relationships, with a need for individualised, accessible education. The Internet was commonly used to seek relationships, with many concerns regarding safety from carers or family. There were some unhelpful responses from others, such as the implementing of restrictions. Factors that may have an impact on the person's overall well‐being, such as their health, social issues and trauma, were often discussed. Conclusions: The identified themes suggest the need for the service to take a holistic, biopsychosocial and individualised approach when supporting individuals with any relationship concerns. A multidisciplinary approach and collaboration with the individual and family/carers is key. It may be useful for the service to develop resources on topics such as personal sexuality, different types of relationships and Internet safety. Carer‐specific resources would also be beneficial, such as advice on how to safely support individuals to seek relationships on the Internet. [ABSTRACT FROM AUTHOR]

Summary: The draft Mental Health Bill, which amends the Mental Health Act 1983 for England and Wales, proposes protections for people with intellectual disability and/or autism (ID/A) to prevent detention in hospital in the absence of mental illness. This editorial critically appraises the positive impact and unintended consequences of the proposed reforms for people with ID/A. [ABSTRACT FROM AUTHOR]

Women with learning disabilities are less likely to breastfeed than other women. They may find it hard to understand or learn feeding techniques or know that they have infant feeding choices. This population may be supported during their pregnancies by a range of professionals with differing priorities and responsibilities towards both the mother and the baby. This puts considerable pressure on health care professionals including, but not limited to, midwives, infant feeding specialists, health visitors and learning disability nurses. Those who support women with learning disabilities through their journey into motherhood have a responsibility to ensure the women in their care have the information they need to make decisions about a range of issues, including infant feeding. In the absence of dedicated lactation consultants, this is one of many issues to be discussed within time‐limited appointments. Little is known about the experience of supporting women with learning disabilities to make infant feeding decisions from the point of view of health professionals. Using a qualitative descriptive research design, we conducted online, semistructured interviews with seven UK health professionals about their experience of supporting women with learning disabilities in infant feeding. Thematic analysis identified three themes: the importance of health professionals' having unconditional, positive regard; the need for an individualised approach to supporting women to make infant‐feeding decisions; and being part of the support network. This suggests that women with learning disabilities can make and put into practice infant feeding decisions if they have access to the right support at the right time. Key messages: With the right support at the right time, women with learning disabilities can make infant feeding decisions and successfully feed their babies.Infant feeding options should be discussed early in the pregnancy, with repetition and the use of accessible resources such as videos to support decision‐making.Breastfeeding should be considered a viable option for all women.Health professionals need to be flexible in their approach to supporting infant feeding decision‐making, working as part of the woman's circle of support.Accessible resources can be helpful in supporting infant feeding decision‐making, but one size does not fit all. [ABSTRACT FROM AUTHOR]

Purpose: This study aims to evaluate the quality of transition from child and adolescent services to adult intellectual disability services, using the relevant National Institute for Health and Care Excellence (NICE) standard (QS140). In addition, this study also identifies any differences in transition quality between those young people with intellectual disability with and without autism. Design/methodology/approach: Using routinely collected clinical data, this study identifies demographic and clinical characteristics of, and contextual complexities experienced by, young people in transition between 2017 and 2020. Compliance with the quality standard was assessed by applying dedicated search terms to the records. Findings: The study highlighted poor recording of data with only 22% of 306 eligible cases having sufficient data recorded to determine compliance with the NICE quality standard. Available data indicated poor compliance with the standard. Child and adolescent mental health services, generally, did not record mental health co-morbidities. Compliance with three out of the five quality statements was higher for autistic young people, but this only reached statistical significance for one of those statements (i.e. having a named worker, p = 0.02). Research limitations/implications: Missing data included basic clinical characteristics such as the level of intellectual disability and the presence of autism. This required adult services to duplicate assessment procedures that potentially delayed clinical outcomes. This study highlights that poor compliance may reflect inaccurate recording that needs addressing through training and introduction of shared protocols. Originality/value: To the best of the authors' knowledge, this is the first study to examine the transition process between children's and adults' intellectual disability health services using NICE quality standard 140. [ABSTRACT FROM AUTHOR]

The history of self‐advocacy in England has not been recorded, other than the stories of individuals and of some individual groups. We, therefore, decided to interview some leaders of the self‐advocacy movement and some people who were allies and supporters. Three researchers, two self‐advocates and one academic, interviewed 11 self‐advocate leaders on Zoom as the COVID lockdowns made it impossible to meet. Four allies and supporters wrote their answers to our questions, and we interviewed three others. We used the information people gave us to start writing the story of self‐advocacy from 1972 to 2002. There is a lot more to do. Accessible summary: The first speaking up event in England was in 1972.This means self‐advocacy is 50 years old in 2022.This decided us to find some people who were leaders of self‐advocacy when it started.We interviewed 11 self‐advocates on zoom.We interviewed three allies and supporters and four people sent written answers to our questions.We used the information people gave us to write this story of self‐advocacy from 1972 to 2002.There is a lot more to do if we are to have a really good record of how self‐advocacy grew and developed in England, and lots more people to talk to. [ABSTRACT FROM AUTHOR]

Social care provision across high-income countries has been transformed over the last ten years by personalisation – a policy agenda to give people with eligible support needs more choice and control over their support. Yet the ideological underpinnings of this transformation remain highly mutable, particularly in the context of reduced welfare provision that has unfolded in many nations advancing personalisation. How the policy has manifested itself has led to an expectation for people to self-build a life as individual consumers within a care market. This article draws on a study exploring how people with learning disabilities in England and Scotland are responding to the everyday realities of personalisation as it is enacted where they live and show the relationality inherent in their practices. We propose that the personalisation agenda as it currently stands (as an individualising movement involving an increasing responsibilisation of individuals and their families) ignores the inherently relational nature of care and support. We propose that social care policy needs to recognise the relational ways in which people build their lives and to advocate a redistribution of responsibility to reduce inequalities in the allocation of care. [ABSTRACT FROM AUTHOR]

Background: A quarter of people with Intellectual Disability (ID) in the UK have epilepsy compared to 0.6% in the general population and die much younger. Epilepsy is associated with two-fifths of all deaths with related polypharmacy and multi-morbidity. Epilepsy research on this population has been poor. This study describes real-world clinical and risk characteristics of a large cohort across England and Wales. Methods: A retrospective multi-centre cohort study was conducted. Information on seizure characteristics, ID severity, relevant co-morbidities, psychotropic and antiseizure drugs (ASDs), SUDEP and other risk factors was collected across a year. Results: Of 904 adults across 10 centres (male:female, 1.5:1), 320 (35%) had mild ID and 584 (65%) moderate-profound (M/P) ID. The mean age was 39.9 years (SD 15.0). Seizures were more frequent in M/P ID (p < 0.001). Over 50% had physical health co-morbidities, more in mild ID (p < 0.01). A third had psychiatric co-morbidity and a fifth had an underlying genetic disorder. Autism Spectrum Disorder was seen in over a third (37%). Participants were on median two ASDs and overall, five medications. Over quarter were on anti-psychotics. Over 90% had an epilepsy review in the past year but 25% did not have an epilepsy care plan, particularly those with mild ID (p < 0.001). Only 61% had a documented discussion of SUDEP, again less likely with mild ID or their care stakeholders (p < 0.001). Conclusions: Significant levels of multi-morbidity, polypharmacy and a lack of systemised approach to treatment and risk exist. Addressing these concerns is essential to reduce premature mortality. [ABSTRACT FROM AUTHOR]

There is evidence that people with learning disabilities, particularly those with behaviour that challenges, are prescribed psychotropics even when they do not have a mental health condition. The STOMP programme was launched in 2016 in England and Wales with the aim of reducing the use of psychotropics in adults with learning disabilities and/or autism. This article describes how the STOMP programme was implemented in a community learning disability service for adults at Cheshire and Wirral Partnership NHS Foundation Trust. The article briefly discusses the overuse of psychotropics in people with learning disabilities and describes the local service's strategy to reduce its clients' use of psychotropics, highlighting some of the beneficial effects this had on clients' quality of life. [ABSTRACT FROM AUTHOR]

Accessible Summary: In the UK very few people with learning disability and/or autism and their family‐carers have a paid job although a lot of them may wish to work. National plans from the Government have not helped to change this.This article talks about a consultation we did on adults with learning disabilities and/or autism who attend day centres and their family‐carers. We asked about their current situation, their employment and the barriers to work.We found out that very few people with learning disabilities and/or autism or their family‐carers were employed. We found that there were lots of things stopping people with learning disabilities and/or autism and family‐carers from being able to work.We conclude that disability theories like the "social model of disability" need to go back to looking at inclusion, citizenship and independence, based on the real life experience of people with a learning disability. The government needs to provide strong plans to help people with learning disabilities and/or autism and family‐carers get into work. "Co‐production" networks should be set up between people with learning disabilities and families to support employment. Background: Only 5.9% of working adults with a learning disability are in paid employment and their family‐carers are similarly likely to be unemployed, as they continue to take on an extended caring and advocacy role as the welfare state retreats. Despite social policy efforts to stimulate employment for people with a learning disability, there has been little or no progress. Changes in the language of welfare benefit departments seek to use the words once heralded as success for the Disability rights activists and proponents of the social model: such as Inclusion, independence and citizenship. A new definition of the social model of disability utilising Hannah Arendt needs to redefine the "private" sphere of the lived experience of people with a learning disability to allow for a better understanding of the inter‐dependencies that exist between people with a learning disability, their family carers and a wider support network. Materials and Methods: Empirical data were collected in a mixed methods study while undertaking a consultation on the future of day services for people with a learning disability in a Local Authority in the north of England, UK. Results: The results reveal high levels of inter‐dependence between people with a learning disability and their carers, combined with the continued financial struggle as a lived experience of caring. The study found that barriers in providing care and support restrict the rights of people with a learning disability and their carers to secure employment. Conclusions: There is a need to reconceptualise the social model of disability to more closely resonate with the lived experiences of people with a learning disability and their carers. A newly revised theoretical approach should incorporate the "private" sphere of live acknowledging the inter‐dependent, co‐produced relationships, between people with a learning disability and their carers to support and enable employment for both people with a learning disability and their carers under the Care Act 2014 (Department of Health, 2014). [ABSTRACT FROM AUTHOR]

This article discusses the potential unintended consequences of proposed reforms to the Mental Health Act in England and Wales for individuals with intellectual disability and/or autism. The authors argue that removing intellectual disability and/or autism from section 3 of the Act could lead to longer stays in inpatient treatment and fewer safeguards for patients. They also express concerns about the increased risk of imprisonment for individuals with intellectual disability and/or autism and the potential for adverse consequences in prison settings. The authors suggest that the decision to consider intellectual disability and autism together for exclusion from section 3 may be ideological rather than evidence-based. They emphasize the need for careful scrutiny of these legislative changes and the importance of adequate funding and support for individuals with intellectual disability and autism. [Extracted from the article]

Purpose: This paper aims to present data about access to and use of health and social care services by adults with learning disabilities during the COVID-19 pandemic in England, Northern Ireland, Scotland and Wales. Design/methodology/approach: Data were collected in three waves between December 2020 and September 2021 and concerned the use of health and social care services during the COVID-19 pandemic. Data were collected at one or more time-points directly from 694 adults with learning disabilities and through separate proxy reports by family carers and paid support staff of another 447 adults with learning disabilities. Findings: Many people with learning disabilities who reported regularly accessing services/supports pre-pandemic were not receiving them during the timeframe of this study. There were indications of increasing access to some services and supports between Wave 2 and 3, but this was not universal. Practical implications: People in Cohort 2, who were likely to have severe/profound learning disabilities, were less frequently reported to access online community activities than people in Cohort 1, which is likely to exacerbate existing social isolation for this cohort and their family carers. Service providers should seek to ensure equitable access to services and activities for all people with learning disabilities in the event of future lockdowns or pandemics. Originality/value: This is the largest longitudinal study about the impact of the COVID-19 pandemic on health and social care services for adults with learning disabilities in the UK. We primarily collected data directly from adults with learning disabilities and worked with partner organisations of people with learning disabilities and family members throughout the study. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To understand the vulnerability of people with learning disabilities to coronavirus disease 2019 (COVID-19) • To find out about COVID-19-related deaths in patients with learning disabilities at one hospital • To enhance your awareness of the need to obtain more clinical awareness of the needs of the learning disability population There is evidence that people with learning disabilities are more vulnerable to coronavirus disease 2019 (COVID-19) than the general population, but there is a need to understand better how COVID-19 has affected that patient group. This article details a retrospective comparison study exploring the response of one acute hospital to COVID-19 in the learning disability population. A wide range of data were collected for the period between March 2020 and March 2021 about patients with learning disabilities, including admissions and deaths, do not attempt cardiopulmonary resuscitation (DNACPR) orders, ceilings of care and input from the learning disabilities acute liaison team. Data from the five years preceding the study were also collected. These data were compared with data about the general population, in the hospital and nationally. The data show that there had been no significant increase in the number of deaths of people with learning disabilities at the hospital during the first 13 months of the pandemic. However, this could be because fewer people attended hospital and more died in the community. Wider and more in-depth investigation is needed to understand the factors that may increase the risk of COVID-19-related death for people with learning disabilities. [ABSTRACT FROM AUTHOR]

Background: The use of physical restraint on vulnerable people with learning disabilities and mental health problems is one of the most controversial and criticised forms of restrictive practice. This paper reports on the implementation of an organisational approach called "No Force First" within a large mental health organisation in England, UK. The aim was to investigate changes in violence/aggression, harm, and physical restraint following implementation. Methods: The study used a pretest-posttest quasi-experimental design. Recorded incidents of violence/aggression from 44 inpatient mental health and learning disabilities (including forensic) wards were included (n = 13,599). Two study groups were created for comparison: the "intervention" group comprising all incidents on these wards during the 24 months post-implementation (2018–2019) (n = 6,551) and the "control" group comprising all incidents in the 24 months preceding implementation (2015–2016) (n = 7,048). Incidents recorded during implementation (i.e., 2017) were excluded (n = 3,705). Incidence rate ratios (IRR) were calculated with 95% confidence intervals (95% CI). Multivariate regression models using generalised estimating equations were performed to estimate unadjusted and adjusted prevalence ratios (aPR) of physical restraint and harm, using type of wards, incident, and violence/aggression as key covariates. Results: A significant 17% reduction in incidence of physical restraint was observed [IRR = 0.83, 95% CI 0.77–0.88, p < 0.0001]. Significant reductions in rates of harm sustained and aggression/violence were also observed, but not concerning the use of medication during restraint. The prevalence of physical restraint was significantly higher in inpatients on forensic learning disability wards than those on forensic mental health wards both pre- (aPR = 4.26, 95% CI 2.91–6.23) and post-intervention (aPR = 9.09, 95% CI 5.09–16.23), when controlling for type of incident and type of violence/aggression. Physical assault was a significantly more prevalent risk factor of restraint use than other forms of violence/aggression, especially that directed to staff (not to other patients). Conclusions: This is a key study reporting the positive impact that organisational models and guides such as "No Force First" can have on equipping staff to focus more on primary and secondary prevention as opposed to tertiary coercive practices such as restraint in mental health and learning disabilities settings. [ABSTRACT FROM AUTHOR]

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Numbers of learning disability nurses have fallen by 32% in England over the past decade. This has a damaging effect on the care of people with learning disabilities and/or autism, and for the most vulnerable – those who are inpatients in mental health hospitals – the risks are particularly high. [ABSTRACT FROM AUTHOR]

The majority of general practice nurses who responded to an RCN survey said that they felt they do not have the knowledge and skills to meet the needs of patients with a learning disability. [ABSTRACT FROM AUTHOR]

Guidance has been issued to help people navigate a newly operational law on the use of force in mental health units in England. [ABSTRACT FROM AUTHOR]

All nurses in England can now access the Oliver McGowan mandatory training programme following a long campaign to improve the care for people with a learning disability and/or autism. [ABSTRACT FROM AUTHOR]

Many of you will be supporting people with learning disabilities who will, for some aspects of their lives, have restrictions placed on them. [ABSTRACT FROM AUTHOR]

What is billed as the biggest shake-up in the NHS for a decade in England will come into force next month. Integrated care systems (ICSs) are designed to pool resources between health and local councils, involve voluntary and third sector organisations and encourage more partnership working. [ABSTRACT FROM AUTHOR]

Background: In recent years, a significant proportion of inpatient facilities for people with intellectual disabilities and/or autism has been de-commissioned in England, This has resulted in individuals with intellectual disabilities being sent to distant hospitals far away from their families and carers leading to challenges in follow-up, community care and interventions. The impact of de-institutionalisation, has often caused patient trauma, family distress and subsequent discharge difficulties. Not every individual with intellectual disabilities and/or autism requires inpatient care but inpatient care when needed has to be local, adequate and appropriate. Aims: To evaluate current evidence of utility of inpatient models for people with intellectual disabilities and outline best clinical practice. Method: PubMed, CINAHL, EMBASE, Cochrane Library, Scopus, Web of Science were searched with key search terms. The search was conducted by the information specialist and identified abstracts screened further for inclusion criteria, methodological issues, and other appropriate characteristics. Twenty-three papers were included in the rapid review. Papers shortlisted had the inclusion criteria applied against the full text version independently by two reviewers. Disagreements regarding eligibility of studies was resolved by discussion and consensus within the project team. Key data related to in-patient models of care was extracted from the included papers, which included year of study, design, study objectives, target population, method/s tested, outcomes reported, country of study/studies, and results. Data extraction was performed by two reviewers and reviewed by the project team. Results: From the review of services for people with intellectual disabilities, we came across four broad models/frameworks/approaches. Evidence on what worked for inpatient service provision tended to be based on models developed and implemented locally. Conclusions: We make recommendations for the best clinical practice and standards. Both clinical service providers and policymakers need to be aware of specific needs of individuals with intellectual disability and/or autism. [ABSTRACT FROM AUTHOR]

Background: The study aims to understand system barriers to research participation for people with intellectual disabilities. Methods: A mixed‐methods approach examined the inclusivity of people with intellectual disabilities (IDs) in a random sample of National Institute for Health and Care Research (NIHR) studies conducted in 2019–2020. An online questionnaire (stage 1) was sent to the selected studies lead investigators. An expert by experience panel of 25 people with intellectual disabilities (IDs, stage 2), discussed the stage 1 feedback. Descriptive statistics for quantitative data and thematic analysis for qualitative data was conducted. Results: Of 180 studies reviewed, 131 studies (78%) excluded people with IDs. Of these, 45 (34.3%) study researchers provided feedback. Seven (20%) of the 34 studies which included people with IDs gave feedback. Of all respondents over half felt their study had some relevance to people with IDs. A minority (7.6%) stated their study had no relevance. For a quarter of respondents (23.5%), resource issues were a challenge. Qualitative analysis of both stages produced four overarching themes of Research design and delivery, Informed consent, Resource allocation, and Knowledge and skills. Conclusion: Health research continues to exclude people with IDs. Researchers and experts by experience identified non‐accessible research design, lack of confidence with capacity and consent processes, limited resources such as time and a need for training as barriers. Ethics committees appear reluctant to include people with cognitive deficits to 'protect' them. People with IDs want to be included in research, not only as participants but also through coproduction. [ABSTRACT FROM AUTHOR]

Background: Inclusive research advocates for the involvement of people with intellectual disabilities to be more than passive participants within the research process. Methods: This study used a participatory design with proxies to consult with 13 people with profound intellectual and multiple disabilities, on their musical preferences. Four instrumental listening tracks were created for consideration. The expected outcome was that people with profound intellectual and multiple disabilities would contribute to the codesign and development of a Musical Play framework. The study took place in England. Findings: Proxy reports suggested that elements of music such as the tempo, tonality and instrumentation influenced the participants' responses. Responses were mixed across all tracks, indicating that the musical preferences of people with profound intellectual and multiple disabilities are variable and individualised. Conclusion: Further exploration of how people with profound intellectual and multiple disabilities can contribute to inclusive research is recommended. Accessible summary: Everyone should have the chance to contribute to research.It is difficult for people with profound disabilities to contribute to research.Using creative research methods and involving a parent/carer can support people with profound disabilities to contribute to research.By using an online listening experience some people with profound disabilities could contribute their experiences to research. [ABSTRACT FROM AUTHOR]