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People with intellectual disabilities are living longer while experiencing significant health conditions often resulting in a prolonged period of dying. Symptom management may be complex at end of life and the unique needs of each individual necessitates a person-centred approach. This article discusses several symptoms at end of life including pain, anxiety, agitation, breathlessness and epilepsy, as well as their management strategies, focusing on the last days of life. Healthcare professionals may support people with intellectual disabilities at end of life in a variety of hospital or community settings. Therefore, they need to have the knowledge and skills to provide evidence-based care safely and effectively. Contemporary approaches to ensuring that people with an intellectual disability can self-determine the management of their symptoms and that their circle of support is involved in a meaningful way will be explored, including advanced care planning and shared decision-making. This article presents a biopsychological perspective to end of life care and symptom management, which speaks to a holistic and respectful approach. [ABSTRACT FROM AUTHOR]

This article describes a public engagement project on bereavement involving people with intellectual disabilities. The project was a practical application of research findings related to discussing death, dying and bereavement with people with intellectual disabilities. The project involved working with people with intellectual disabilities, staff from organisations that support them, and nursing and design students to make artificial lilies that could be illuminated for an interactive art installation. The site for the art installation was the Grassmarket area of Edinburgh, Scotland, where lilies were provided to members of the general public. The public participated in the installation by writing a message to someone who had died, then planting the lily in the garden as a means of remembrance. Through the development and implementation of the project, the authors identified that there was a desire among people with intellectual disabilities to discuss issues of loss and grief. This project also enabled people with intellectual disabilities to be part of a community of remembrance. [ABSTRACT FROM AUTHOR]

Constipation is a common condition that can have significant adverse effects on people's psychological well-being and quality of life. Chronic constipation is associated with various burdensome symptoms and may lead to serious health issues, such as faecal impaction and bowel obstruction. People with intellectual disabilities may be at increased risk of constipation for several reasons, including side effects of medicines, suboptimal diet and limited mobility. This article outlines the causes and risk factors that can lead to constipation in people with intellectual disabilities. It discusses the prevention, assessment and management of this condition, emphasising the need for a holistic, integrated and person-centred approach. The article also uses a fictional case study to illustrate how such an approach could be applied in practice and to demonstrate the role of nurses in addressing constipation in people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To improve your knowledge of the barriers that people with intellectual disabilities experience when accessing dental services • To understand how to support people with intellectual disabilities with their oral healthcare • To familiarise yourself with latest evidence about optimal practice in oral healthcare for people with intellectual disabilities Oral health is an important aspect of a person's overall health and well-being. People with intellectual disabilities have poorer oral health than the general population, so it is essential that service users and their carers are supported to address this. This article provides information for nurses and other healthcare professionals on how to provide evidence-based practice that supports people with intellectual disabilities with their oral healthcare and assists them to access dental services. The authors examine the latest evidence about optimal practice in oral healthcare for people with intellectual disabilities, emphasising the importance of a person-centred approach. The article also discusses the barriers that people with intellectual disabilities experience when accessing dental services and how these barriers can be addressed. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To be aware of secondary analysis of data from waves 1 and 3 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) • To appreciate that dementia is highly prevalent in older adults with intellectual disabilities, particularly in those with Down's syndrome • To recognise the need for routine assessment of cognition and adaptive functioning in older adults with intellectual disabilities to increase recognition, identify early symptoms of dementia and plan care accordingly Background: Diagnosing dementia in people with intellectual disabilities can be challenging due to pre-existing cognitive impairment. In this population, functional loss could be an early indicator of dementia, but the relationship between functional loss and dementia is not well understood. This means there is a risk of delayed diagnosis and therefore a delay in care planning. Aim: To identify and compare the prevalence and age distribution of dementia in people with intellectual disabilities, differentiating between those with Down's syndrome and those with an intellectual disability not attributable to Down's syndrome, and to identify and compare functional loss in people with intellectual disabilities who have developed dementia, differentiating between those with Down's syndrome and those with an intellectual disability not attributable to Down's syndrome. Method: This was a secondary analysis of data from waves 1 and 3 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a nationally representative study in Ireland of older adults with intellectual disabilities as they age. Functional loss was determined by participants' level of difficulty with activities of daily living (ADLs) and instrumental activities of daily living (IADLs). Results: The prevalence of dementia was higher among participants with Down's syndrome than among those with an intellectual disability not attributable to Down's syndrome, and the age distribution of dementia differed markedly between the two groups. Both groups experienced similar patterns of difficulty with ADLs and IADLs. IADLs posed more difficulty than ADLs, and among ADLs self-care activities posed the most difficulty. Conclusion: It is important to continue to investigate functional loss in older adults with intellectual disability who have developed dementia, as this should lead to earlier assessment and care planning. [ABSTRACT FROM AUTHOR]

The population of people with intellectual disabilities -- this is the international term used to describe a learning disability -- is increasing and ageing, and many require frequent access to healthcare services for assessment, treatment and care. The European Disability Strategy 2010-2020 identifies the need to reduce the barriers to healthcare for people with disabilities, to improve their quality of life and reduce preventable mortality. Part of this policy focuses on the education and preparation of future practitioners. The European Union (EU) Erasmus Plus programme is an opportunity to bring together educators and students, to share learning and develop an understanding of the needs of people with intellectual disabilities. This article gives an overview of the programme, policies and practices relating to care of people with intellectual disabilities in four EU member states -- Scotland, England, Norway and Romania. It also identifies ways in which access to services for this population can be improved through education, workforce and services in an EU context. [ABSTRACT FROM AUTHOR]

Young people with intellectual disabilities are at greater risk of developing mental health issues. However, their mental health needs are often not recognised and therefore remain untreated. This article discusses a case study concerning a young man with a mild intellectual disability and co-existing obsessive-compulsive disorder, which was first identified in adolescence. It describes his experience of accessing appropriate services and interventions, and details the care and support that he received from community-based services, which enabled him to continue living with his family. The case study reveals various issues that are relevant to other young people in similar situations, as well as for service providers and professionals, including intellectual disability nurses. [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]

Cognitive behavioural therapy (CBT) has become established as a method for treating psychological disorders experienced by the general population, with considerable evidence available to support its efficacy. However, little research has been conducted into its effectiveness in treating psychological disorders experienced by people with intellectual disabilities. This article explores the various factors involved in the use of CBT for people with intellectual disabilities and how healthcare professionals and the multidisciplinary team have an important role in the CBT process. The input of learning disability nurses is also explored, particularly their vital role in supporting CBT and providing information that is concurrent with an individual's level of understanding. Challenges in the provision of CBT for this population are also examined, for example the prevalence of diagnostic overshadowing, which can make it difficult to distinguish between cognitive impairment and mental health issues in people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

A growing body of literature documents multiple morbidities and multiple medication use among older people with intellectual disabilities. In Ireland in 2012,8.6% of all medication-related adverse events were reported from the disability sector. To determine the level of medication use in a long term care centre that was home to 129 older people, the on-site pharmacist performed a base line audit. Results showed that 31,614 oral solid form medications (tablets/capsules) were administered in 28 days with an average of 1,129 administered per day. There was also widespread use of other medication forms, such as liquids, patches and eye drops. Although medication administration may seem to be a 'simple' nursing task, the combination of multiple medication use and medical complexity in this population means that it is often more complicated than fully realised by the staff involved in the process. Pharmacists who serve older people who have intellectual disabilities need to be aware of, and sensitive to, the unique medication needs and vulnerabilities of this population. Medication use is a major therapeutic intervention in this population and it is important that all nursing, medical and pharmacy personnel, service provider management and policy makers are aware of the complexity of the medication use process. [ABSTRACT FROM AUTHOR]

People with an intellectual disability who aspire to further education, and who seek employment on their transition to adulthood, need access to a range of supports, for independence, personal and educational development, and collaborative transitioning. This article discusses the importance of family care, service provision, employment, influential past policies and future strategic developments within an Irish context, and how collaboration between all key stakeholders is essential for effective transitioning for people with an intellectual disability. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To be aware that the prevalence of traumatic or adverse life events is high among people with intellectual disabilities • To understand that trauma-informed care is based on the rationale that in healthcare services there is the potential for traumatisation or retraumatisation in people who have been exposed to traumatic events • To recognise what trauma-informed care looks like in intellectual disability services, including the barriers to and enablers of implementation Traumatic events are associated with actual or threatened risk to life, serious injury or sexual violence. The prevalence of traumatic events is particularly high among people with intellectual disability. Trauma-informed care is an important yet unresearched area in intellectual disability services. This article outlines the principles of trauma-informed care and considers how these can be applied in practice to people with an intellectual disability. The authors discuss the limited literature on the implementation of trauma-informed care in intellectual disability services, which is primarily drawn from case studies or non-empirical research. The article includes two examples of trauma-informed care implemented in intellectual disability settings and outlines areas for future research. [ABSTRACT FROM AUTHOR]

The article emphasizes the relevance of independence to people with intellectual disabilities. It presents a person-centered assessment of independence, along with ways to promote independence and how deal with the barriers. The author concludes that independence is an important part of becoming a person, particularly to people with intellectual disabilities.

People with intellectual disabilities have greater health needs than the general population, however they also experience greater inequality in accessing healthcare. Registered intellectual disability nurses (RNIDs) have a primary role in supporting these patients to access adequate healthcare and experience optimal health. Asthma affects many people with intellectual disabilities. This article gives an overview of the condition and discusses RNIDs' role in supporting people to manage their own condition. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities want meaningful relationships, which could mean friendship or intimacy. Nurses and other professionals can support children and young people with intellectual disabilities to understand sexuality as well as promoting friendships and safe relationships. However, best practice guidelines are needed to promote consistency in practice that meets their distinct needs. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities can have various healthcare needs across their lifespan, which may be closely linked to genetic, biological and/or psychosocial factors. As a result, they may require medicines – some of which may be administered intramuscularly – for various clinical reasons, including as part of the treatment of a range of comorbid physical and mental health conditions. Additionally, this population may not fully understand why certain medicines are administered via the intramuscular (IM) route, nor the potential risks that are involved. Some people with intellectual disabilities may find it distressing to receive medicines via this route, and they may depend on others when making decisions in relation to IM injections. Therefore, it is important for nurses to establish a rapport with patients with intellectual disabilities and gain their consent for the procedure. Nurses also require knowledge of the preparation and administration of IM injections to ensure positive health outcomes. This article aims to enhance intellectual disability nurses' knowledge of this procedure, and to explain how they can mitigate the potential physical and psychological effects that IM injections may have for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To understand when to administer oxygen therapy to people with intellectual disabilities • To learn about the different types of oxygen therapy and their indications for use • To count towards revalidation as part of your 35 hours of CPD, or you may wish to write a reflective account (UK readers) • To contribute towards your professional development and local registration renewal requirements (non-UK readers) People with intellectual disabilities may require oxygen therapy across the lifespan for various reasons. Some of them will require oxygen therapy frequently, such as those who experience recurrent respiratory conditions, while others may require oxygen therapy at times when they become acutely ill or, in certain circumstances, at the end of life. Healthcare professionals and family carers supporting people with intellectual disabilities who require this treatment must have the knowledge, skills and competence to administer it safely and effectively. Oxygen therapy may be administered at times when the individual is distressed and vulnerable, so a person-centred and respectful approach is essential. This article explores the rationale for administering oxygen therapy, outlines the types and equipment that can be used, and explains the measures that nurses can take to support people with intellectual disabilities who are [ABSTRACT FROM AUTHOR]

Background There are few available tools for screening and assessing mental distress in people with intellectual disabilities. Method Comparison of the Clinical Outcomes in Routine Evaluation: Learning Disabilities (CORE-LD) tool with other psychometrically robust but more specific measures. Results Scores derived from CORE-LD correlate with those of established measures that have been adapted for use with people with learning disabilities. Conclusions As a tool for measuring mental health problems and levels of distress, CORE-LD is as valid as established tools for measuring anxiety, depression and self-esteem. [ABSTRACT FROM AUTHOR]

People with intellectual disability, until recently, had notably earlier mortality rates than the general population, but many are now living into their fifties, sixties and beyond. Many older people with intellectual disabilities lose the ability to perform activities of daily living, which is termed 'mobility decline', and this has implications for service planners and intellectual disability nurses (RNIDs), who must provide appropriately designed services, and ensure they are equipped to meet the needs of this ageing population. This article highlights the importance of the role of RNIDs in assessing mobility, as part of the holistic assessment of older adults with intellectual disability, and describes a variety of resources practitioners can use. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To refresh your knowledge of the clinical aspects of venesection • To increase your awareness of how to make venesection a positive experience for service users • To count towards revalidation as part of your 35 hours of CPD, or you may wish to write a reflective account (UK readers) • To contribute towards your professional development and local registration renewal requirements (non-UK readers) People with learning disabilities face challenges in accessing healthcare services, particularly testing, screening and monitoring, which means that common conditions are often missed. Like anyone, people with learning disabilities develop conditions that require diagnosis, assessment and monitoring through the laboratory analysis of blood samples, so learning disability nurses need to be skilled at performing venesection. Obtaining informed consent and preparing the person psychologically and emotionally for the procedure is as important to its success as getting the clinical aspects right. This article discusses venesection in people with learning disabilities, explaining how nurses can support them before, during and after the procedure and describing a step-by-step approach to performing venesection in a person with a learning disability. [ABSTRACT FROM AUTHOR]

This article presents a literature review that was undertaken to explore the challenges experienced by paid carers when providing palliative care to adults with intellectual disabilities. The outcomes show that providing palliative care to people with intellectual disabilities is fraught with difficulties. Professionals, whether they work in palliative care services or in intellectual disability services, face an array of challenges that limit their ability to provide high-quality care. These challenges include limited experience, difficulties in identifying and managing symptoms, such as pain and distress – partly because of diagnostic overshadowing – and suboptimal coordination of care, collaboration between services and communication with patients. This article outlines some recommendations arising from the literature that may improve the provision of palliative care for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Increased life expectancy allied to increasing numbers of people with learning disabilities living in the community means that more people with learning disabilities are having their health needs met in acute general medical services. In the context of a person-centred approach, this article examines the potential problems that may arise in all healthcare settings which pose barriers to effective healthcare delivery. These include perceptions and attitudes of healthcare staff, issues of consent and communication. It proceeds to outline solutions that enable these barriers to be overcome. Such solutions centre around addressing communication difficulties and issues of consent as well as developing the education of healthcare professionals. It concludes with a case study that explains how the theoretical principles may be applied sensitively in a practice situation. [ABSTRACT FROM AUTHOR]

The Research Active Programme (RAP) was designed to enable adults with intellectual disabilities to learn about the purposes and process of research. This article introduces RAP's content and draws on the experiences of 14 RAP students, three facilitators and two research assistants to present a critique of the programme's eight weekly sessions. It also makes recommendations to enrich the learning experience of students during future versions of the programme. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To understand the discrimination experienced by people with a learning disability who cross-dress • To learn techniques to support people with learning disabilities who want to cross-dress • To familiarise yourself with gender issues in the context of people with learning disabilities People with a learning disability who identify as lesbian, gay, bisexual, transgender, queer or as a cross-dresser can experience multiple layers of discrimination and experience numerous challenges in having their needs met. This article describes a group that was set up to support five men with learning disabilities who wanted to cross-dress. The aim of the group – called Being Me – was to offer the men support, education and empowerment. The article includes case studies to illustrate the men's experiences of being part of the support group. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To recognise that people with learning disabilities and a long-term health condition are at risk of avoidable and premature death • To identify how a combination of reflective practice and the introduction of a virtual nurse-led clinic improved health outcomes for a patient with a learning disability and uncontrolled epilepsy • To understand how reflection can enhance your practice This article presents a reflection on a case study by a hospital liaison nurse for patients with learning disabilities. The case study details the care of a patient with a learning disability and uncontrolled epilepsy who was at risk of premature and avoidable death. Following frequent hospital episodes, reasonable adjustments to the patient's care and support needs were essential. An integrated approach was adopted through the setting up of a nurse-led virtual clinic to monitor and coordinate care for patients with learning disabilities and long-term conditions. The clinic was instrumental in improving patient safety and optimising health outcomes. [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]

Why you should read this article: • To enhance your understanding of the need to reduce the use of restrictive practices • To increase your knowledge of applying a human rights-based approach to the use of restrictive practices • To contribute towards revalidation as part of your 35 hours of CPD (UK readers) • To contribute towards your professional development and local registration renewal requirements (non-UK readers) In 2021 the Welsh Government launched a new framework for reducing the use of restrictive practices in childcare, education, health and social care settings. A series of reports and guidelines have stressed the importance of ensuring that restrictive practices, if used at all, respect people's human rights. Human rights that are particularly relevant in this context include the right to not be subjected to inhuman or degrading treatment, the right to have one's autonomy and physical and psychological integrity respected, and the right to not be discriminated against in the application of the Human Rights Act 1998. This article explores how applying a human rights-based approach can support learning disability nurses to consider the legal and ethical aspects of restrictive practices, use a person-centred approach that respects service users' dignity and autonomy, and recognise their role in reducing the use of restrictive practices. [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]

Why you should read this article: • To be aware that transitions from child to adult services are often challenging • To identify the importance of early transition planning for successful outcomes • To recognise that young people's views, preferences and wishes should be reflected in transition plans Transition to adult services for young people with learning disabilities and complex needs should be a purposeful and planned process that begins at the age of 14. However, it is often fraught with challenges. This article explores the story of a young person's transition from child to adult services. It shares the lessons learned and how a collaborative, person-centred approach can result in positive outcomes for young people with autism, learning disabilities and complex needs. Recommendations are made for good practice in person-centred transition planning. Although the article explores one family's experiences, the recommendations are applicable to learning disability practice in developing improved pathways for transition for young people with complex needs. [ABSTRACT FROM AUTHOR]

Three years ago, following surgery to remove all her teeth, a Worcestershire nursing home resident died at the age of 49. Rachel Johnston, who had 'significant learning disabilities', struggled to breathe after discharge back to her home after the procedure in 2018, but staff failed to carry out vital observations or seek emergency assistance. An inquest later concluded that neglect by nursing home staff had contributed to Ms Johnston's death. [ABSTRACT FROM AUTHOR]

The role of the registered nurse in intellectual disability (RNID) includes networking, which is an important aspect of supporting people with an intellectual disability with their health and social care needs. Networking involves RNIDs communicating with various people in intellectual disability services, mainstream health services and local communities. The advent of coronavirus disease 2019 (COVID-19) resulted in RNIDs having to use their networking competences to support clients and their families, particularly in accessing the services they needed to maintain their health during the pandemic. This article examines this networking role and discusses the developments required for RNIDs to support people with an intellectual disability effectively during a pandemic. The article also calls for further research and clarification of the networking aspect of the RNID role. This will provide knowledge that can underpin intellectual disability nursing education and practice. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To understand how physical health deterioration in people with learning disabilities is often missed • To improve your knowledge of the challenges involved in detecting deterioration in adults with learning disabilities • To familiarise yourself with the need for a personalised tool that detects physical deterioration Opportunities to detect physical health deterioration early in people with learning disabilities are often missed, which can lead to suboptimal health outcomes including death. There are several challenges involved in detecting deterioration in adults with learning disabilities. One challenge is that tools such as the National Early Warning Score 2 (NEWS2) may not be suitable for this population. Another challenge is that those people who care for adults with learning disabilities in the community often do not have the skills, training, equipment and confidence to undertake physical observations and escalate any concerns to healthcare professionals in a timely manner. There is therefore a need for a personalised tool to detect and report physical deterioration in adults with learning disabilities in community settings. This article describes a project undertaken by a learning disability nursing student to develop such a tool. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To enhance your awareness of the barriers that pregnant women with learning disabilities may experience in accessing maternity care • To identify reasonable adjustments that can be made to improve the care of pregnant women with learning disabilities • To learn about a service improvement initiative designed to raise healthcare professionals' awareness of the needs of women with learning disabilities during pregnancy An increasing number of women with learning disabilities are forming relationships and having children. These women are likely to have additional needs during pregnancy and to experience barriers in their access to maternity services. This article details a literature review on maternity care for women with learning disabilities during pregnancy and explains how the findings were used to inform the planning of a service improvement initiative. The literature review identified that this patient population is inconsistently and ineffectively supported by maternity services. Based on these findings, a service improvement initiative was designed to raise awareness of the needs of women with learning disabilities during pregnancy among healthcare professionals working in maternity services in Devon, England. It was decided that a one-day conference be held for up to 120 delegates in the summer of 2021. Its outcomes will be used to advance the service improvement initiative, create learning disability champions and provide practical suggestions on how reasonable adjustments can be made for women with learning disabilities during pregnancy. [ABSTRACT FROM AUTHOR]

Sleep is an essential activity of daily living that is often overlooked in approaches to caring for people with intellectual disabilities (IDs). Poor sleep, insomnia or disrupted sleep can have wide-ranging effects on the health and well-being of people with ID resulting in many adverse consequences. This article outlines the main challenges that people with ID may have initiating and sustaining sleep, explains the nature, prevalence and causes of sleeping problems they experience and discusses a variety of assessments of sleeping issues. It also examines sleep maintenance, management and sleep hygiene approaches to support this cohort using a person-centred nursing care plan and concludes with some suggestions for sleep maintenance and hygiene. Good sleep hygiene should form a central element of caring for people with ID and this article offers suggestions about care planning approaches to enable good quality sleep experiences for people with ID. [ABSTRACT FROM AUTHOR]

'It's never too late to start over in life, because I didn't come into learning disability nursing until I was nearly 40. Our first son was born with Down syndrome in 2000 and at the time I was working as a research scientist in the pharmaceutical industry. [ABSTRACT FROM AUTHOR]

Over the past two decades person-centred planning has been used to support people with learning disabilities to fulfil their personal aspirations. This has been backed up by national policies that have adopted the principles of person-centredness. However, widespread barriers to the implementation of person-centred planning for people with learning disabilities have been reported and the literature suggests that implementing person-centred planning is particularly challenging for people with more complex needs. This article discusses the findings of a literature review that explored the barriers and facilitators to the implementation of person-centred planning for people with learning disabilities and complex needs and their carers. The article identifies barriers such as limited funding and resources, challenges in accessing services and communication difficulties. It also describes initiatives that appear to have successfully engaged service users and their carers in person-centred planning. Further research is needed into the long-term effects of person-centred planning for people with learning disabilities and complex needs, notably to measure its effectiveness in enhancing their quality of life, while strategies to enable them to engage in person-centred planning need to be developed. [ABSTRACT FROM AUTHOR]

Positive behaviour support (PBS) is considered an effective and ethical approach to supporting people with learning disabilities who are at risk of behaviour that challenges. Many people with learning disabilities are supported in the community by staff with varying levels of PBS skills and practice, and training is important to ensure PBS is used consistently. In 2019, a community learning disability team in Staffordshire, England, developed a PBS skills training programme and delivered it to 57 senior staff from 16 local community services. In an evaluation of the training programme, participants reported some improvements in their PBS knowledge and practice, as well as some benefits for service users, after the training. However, no follow-up data could be obtained from participants six months after the training. This article describes the training programme, reports the findings of its evaluation and discusses how the findings will inform a future PBS skills development project. [ABSTRACT FROM AUTHOR]

Background The Research Active Programme (RAP) was an eight-week group-based research training programme designed to promote disability rights in research by providing opportunities for people with intellectual disabilities to become co-researchers. This article presents an evaluation of the effectiveness of the RAP from the perspectives of 14 students. Methods Data collection involved individual pre- and post-programme interviews and weekly post-session group feedback with all 14 RAP students. Interviews were transcribed and analysed. Results Students' interests, abilities and learning styles were identified and used alongside continual feedback to guide the curriculum design. Students' perspectives are presented under four domains: foundations to learning, responsive curriculum development, content learning and complementary learning. Conclusions From the students' perspectives, the RAP was a worthwhile investment for them. Participating in the programme provided access to a wider social network in a third-level educational environment and created opportunities for lifelong learners interested in becoming co-researchers. [ABSTRACT FROM AUTHOR]

Research indicates that aspirate pneumonia as a result of dysphagia can be one of the leading causes for episodes of hospitalisation among people with intellectual disabilities (Glover and Evison 2013). Likewise, numerous studies have identified the risk factors for individuals and ascertained the strategies required to manage swallowing disorders and minimise the risks (Wright and Howseman 2013). Yet, several types of medication have been identified in the British National Formulary as having a high-risk effect on the process of swallowing, which may often be overlooked. Furthermore, the problems associated with polypharmacy indicate that adverse drug reactions can be implicated and linked to unplanned hospital admissions (Payne et al 2014). This article highlights the need for health professionals and care providers to reduce the potential risks and side effects that prescription medications can have in relation to swallowing dysfunction in people with intellectual disabilities and who are diagnosed with long-term conditions. [ABSTRACT FROM AUTHOR]

Bowel or colorectal cancer is the third most common cancer and the second most common cause of death from cancer in Scotland. People with learning disabilities have higher rates of mortality associated with cancer of the colon and the rectum than the general population. Data for 2016 suggest that in the NHS Highland health board area less than half of all people known to specialist learning disability services, who were eligible for bowel screening, participated in the Scottish national bowel screening programme. To address the low uptake of bowel screening among people with learning disabilities, a peer-led educational intervention was developed and delivered to 109 adults with learning disabilities in the health board area. Its aims were to increase participants' knowledge of bowel health and bowel screening and reduce the barriers to their participation in the bowel screening programme. This article describes the intervention and discusses the findings from its evaluation. The intervention appears to have increased participants' knowledge of bowel health [ABSTRACT FROM AUTHOR]

Why you should read this article: • To be aware that social inclusion for people with intellectual and development al disabilities (IDD) is a focus of welfare policies and legislation in many countries • To recognise that the implementation of policy and legislation for people with IDD is the shared responsibility of governments, and health, education and social care professionals • To identify shared learning among students in health, education and social care programmes as one means of achieving social inclusion for people with IDD Policies for people with disabilities, and specifically those with intellectual and developmental disabilities (IDD), have undergone significant changes during the past three decades. Many people with IDD experience social exclusion, which has significant implications for the individual, their family and wider society. Today the focus is on accessing universal services, care and support in the community to facilitate social inclusion. Professions and professionals in health, education and social services implement social inclusion policy in the field of IDD. However, there is a lack of coherence between the policy intentions of social inclusion and the realities of professional practice. Educational collaborations involving academics, students and practitioners from the professions working with people who have IDD provide an opportunity for shared learning. These collaborations support the development of knowledge and understanding, and the barriers that need to be addressed to achieve social inclusion for people with IDD. [ABSTRACT FROM AUTHOR]

In May 2019 a scandal about the care of people with learning disabilities emerged when the BBC broadcast secret footage of abuse perpetrated at Whorlton Hall, a specialist unit for vulnerable adults. This was another case in a list of abuse in care settings for people with learning disabilities, including systematic abuse uncovered at Ely Hospital in 1967 and Winterbourne View in 2011. This article reflects on the parallels that can be drawn between the cases at Ely Hospital, Winterbourne View and Whorlton Hall, suggests explanations for these recurrent patterns of abuse and makes recommendations for how to address them. [ABSTRACT FROM AUTHOR]

The Transforming Care programme was devised by NHS England in 2015 with the aim of supporting people with a learning disability and/or autism who exhibit behaviour that challenges, including those with a mental health condition, to move out of long-stay hospitals and live in the community. The driving factor behind the programme was abuse and neglect experienced by people in long-stay settings, including those living at Winterbourne View, a private hospital near Bristol that was closed in 2011 after revelations that patients had been ill-treated. By March 2019, when the programme ended, the target to reduce inpatient bed capacity by 50% had not been met. This article discusses the author's experience as a dual-qualified social worker and mental health nurse employed by a Transforming Care Partnership. In this role, the author coordinated the discharge process for five people with learning disabilities and/or autism, often with co-morbid mental health issues, who had lived in hospital for 7-21 years. The complex multiagency work that enabled these successful discharges is explored and the article considers how this work can be built on in future to ensure more people with learning disabilities are able to live in their own homes. [ABSTRACT FROM AUTHOR]

In May 2011 BBC Panorama aired its exposé of poor care at the Winterbourne View hospital near Bristol. The undercover filming at the inpatient unit sent shockwaves across the sector and wider society. It revealed a regime of physical and psychological abuse, neglect, and mistreatment, prompting prosecutions of the staff involved. [ABSTRACT FROM AUTHOR]

Status epilepticus (SE) is a complication of epilepsy characterised by prolonged or repeated seizures. It is a life-threatening condition that requires the immediate administration of a rescue medicine. If given promptly, rescue medicines can reduce the duration of seizures and support SE cessation. Buccal midazolam is the recommended first-line treatment for SE in the community in people who have had a previous episode of prolonged or serial convulsive seizures. Therefore, it is crucial that all those who care for people with learning disabilities who have epilepsy in the community – including family members, friends and professional carers – receive support, training and guidance in the administration of buccal midazolam. This article provides an overview of the treatment of SE in the community, including the administration of buccal midazolam. [ABSTRACT FROM AUTHOR]

The evidence is becoming ever clearer that the COVID-19 pandemic has had a devastating effect on the mental health of children. Data from NHS Digital show the number of children with a probable mental health disorder rose from one in nine in 2017 to one in six in 2021. [ABSTRACT FROM AUTHOR]

We all react differently to bereavement and that is as true for people with learning disabilities as for anyone else. Yet assumptions are often made. As a result, when a person with a learning disability loses someone close, the reality of death may be denied. Grieving may then stall or never begin. In a briefing based on the work of Keele University professor of learning disability nursing Sue Read, the bereavement charity Sudden refers to this as 'disenfranchised grief'. This occurs when someone's loss is not recognised and they are left unsupported. [ABSTRACT FROM AUTHOR]

This article explores the rights-based agenda for social action by intellectual disability nurses working alongside people with intellectual disabilities in Ireland. The author discusses the rights issues raised by people involved in the participatory action movement, ID Rights: Human Rights and People with Intellectual Disabilities. He suggests that such issues, derived not from the expertise of the nurse but from the experience of the person with intellectual disability, constitute rights-based focal points for collaborative social action interventions. The author further proposes that this role of the nurse is a social action one that takes place outside the formal care setting. Although not informed by research but by participatory discussion, important pointers are presented for research and action, including a number of rights-based focal points that have emerged from collaborative discussion. These are structured according to criteria adopted by the International Classification for Nursing Practice and presented in the context of the United National Convention on the Rights for Persons with Disabilities. [ABSTRACT FROM AUTHOR]

Attending healthcare appointments can be challenging for people with learning disabilities, prompting anxiety that can keep them away. [ABSTRACT FROM AUTHOR]

This article details how a conceptual tool, the semantic wave, can be used to support intellectual disability nursing students to access and apply theories, concepts and evidence to inform their practice. The semantic wave can enable nurse preceptors in Ireland – and practice supervisors and practice assessors in the UK – to articulate the links between theory and practice when supporting nursing students to develop foundational competences on their practice placements. This article uses a case study of a nurse preceptor supporting a first-year intellectual disability nursing student to develop their competence in communication and interpersonal relationships, demonstrating how the semantic wave can be used to apply nursing theory to context-specific practice situations. [ABSTRACT FROM AUTHOR]