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Accessible summary: After the consultation with people with learning disabilities, the topic of health inequalities was chosen for the 2024 special issue.The lives of people with learning disabilities around the world was also of interest to people so we have made this the theme of this issue. There are papers from the Czech Republic, Hong Kong, Belgium, Chile and Iceland.We also have papers about life in the COVID‐19 pandemic. [ABSTRACT FROM AUTHOR]

Accessible summary: The journal now has a statement on the website about respecting diversity, wanting to include different people and their perspectives, and standing alongside people with learning disabilities.We have done some research with people with learning disabilities about how they might contribute to reviewing papers. We will report on this soon.This issue of the journal has papers about community and well‐being for people with learning disabilities.The papers look at how we can help people who belong in communities. Some cover how people stayed connected during Covid lockdowns. Others focus on different ways of supporting people's mental health. [ABSTRACT FROM AUTHOR]

Accessible summary: In the last issue of 2022 I reflect on the uncertainty we have been living with again this year. While the impact of Covid‐19 may be lessening, war and the cost of living are affecting us all.Following some research with people with learning disabilities about getting further involved in the journal more changes are on the way.I am busy consulting with people with learning disabilities about what the focus of the 2024 special issue of the journal should be.Meanwhile, this issue of the journal has papers on many topics including eating, mothering, having friendships, staying well and ageing. [ABSTRACT FROM AUTHOR]

Background: People with learning disabilities experience health and social inequalities, and research that could improve health services may not be implemented in real‐life settings. Building stakeholder networks that can share and implement research findings may address this. This paper presents a framework for building a stakeholder network that maximises the likelihood of research recommendations being implemented in practice. This was developed as part of the 'Making Positive Moves' (MPM) study, which explores the experiences of people with learning disabilities following discharge from a residential stay within a hospital inpatient setting. Methods: We reviewed the literature on existing theoretical frameworks to support the development of a model for dissemination of the MPM findings. Stakeholder categories were identified through consultation with the MPM researchers, experts by experience and the steering group and a hub and spoke model to represent all stakeholder categories was created. These categories include person moving; family of the person moving; specialist schools; social care; care providers; regulators; third sector organisations; policy organisations; academic community; and NHS professionals. After establishing the categories, we consulted with people with learning disabilities and other stakeholders and conducted online searches to create a stakeholder database. Through information gathering and direct contact with stakeholders, we assessed levels of interest, power and engagement to determine which stakeholders to prioritise in our dissemination activities. The Stakeholder Wheel was created to present the data captured within the database and engagement profiles in an illustrative way. Findings: We use two stakeholder sub‐categories, user‐led organisations and care providers, to demonstrate the methodological approach. The examples illustrate how a scoring system helped us to identify high‐priority stakeholders who we then contacted to collaborate within developing our dissemination strategy to maximise the impact of the MPM research findings. Conclusions: We developed a framework to map stakeholders for the MPM study and enable targeted dissemination to increase the impact of the research. This approach has the potential to reduce health inequalities among people with learning disabilities by increasing the awareness of and ability to implement evidence‐based recommendations in real‐life settings. The stakeholder mapping framework could be applied to research projects associated with learning disabilities to bridge the gap between research and practice and reduce health inequalities. Accessible Summary: People with learning disabilities experience unfair disadvantages relating to their health. These are known as health and social inequalities.Findings from research projects can help improve health and social care for people with learning disabilities, but only if people know about and are able to apply the research recommendations.Finding people and organisations who can make use of the research findings (known as stakeholders) is an important first step in sharing research. Working with stakeholders to think about how they use the findings to change practice can improve care and services.We have been doing this for one research project called Making Positive Moves and it has helped us plan how to share our findings. Our approach could be used by other researchers to make it more likely that their research findings will be used to make a difference in the lives of people with learning disabilities. [ABSTRACT FROM AUTHOR]

Background: Youth with intellectual disabilities experiencing homelessness are invisible within multiple service sectors. We know little about their experiences of homelessness, or the impacts of such on the social and physical health and well‐being. Methods: We used quantitative and qualitative methods to measure prevalence and learn from key informants and homeless youth with intellectual disabilities about factors leading to and sustaining homelessness, and the implications of such on their social, physical, and mental health and well‐being. The project involved seven co‐researchers with intellectual disabilities and experience of youth homelessness in research design, data collection, analysis, and dissemination. We created Forum Theatre scenes that creatively represent the findings of the project. In this paper we share one of those scenes, as well as the recommendations three co‐researchers with intellectual disabilities have for improving support to homeless youth with intellectual disabilities. Findings: Lack of awareness of and about homeless youth with intellectual disabilities, combined with siloed ways of working by involved sectors, results in significant disadvantage and health inequities for youth. Also revealed was the likelihood this would continue given existing obstacles to accessing appropriate housing and supports to exit homelessness. Conclusion: Services providers, policy makers and representatives of the involved sectors need to recognize and acknowledge homeless youth with intellectual disabilities and take responsibility for learning and working together to develop integrated and responsive approaches to effectively supporting them. Accessible Summaries: Many youths with intellectual disabilities are homeless, but we do not know very much about them. We do not know how they became homeless, what their lives are like when they are homeless or how being homeless affects their health.The (name withheld) research project included academic researchers and co‐researchers with intellectual disabilities, who had experience of being homeless. They spoke to service providers and to homeless youth without intellectual disabilities about these things.They learned that most homeless youth with intellectual disabilities have had very difficult lives. They face many challenges every day. They don't have access to health care, mental health supports, food and nutrition or physical safety. Attending school or having a job is harder to do when you are homeless.Many different services are involved in the lives of people with intellectual disabilities who are homeless. However, these services don't know about each other or work together to support homeless youth with intellectual disabilities.Service providers, governments and policy makers need to take responsibility to learn about the lives of homeless youth with intellectual disabilities. They must work together, and with homeless youth with intellectual disabilities, to develop better supports for this group of youth. [ABSTRACT FROM AUTHOR]

Background: We now have sufficient evidence demonstrating inequalities in specific avoidable causes of death for adults with intellectual disability compared to their peers without intellectual disability. Apart from covid‐19, the largest differentials that disadvantage people with intellectual disability are in relation to pneumonia, aspiration pneumonia, epilepsy, cerebrovascular disease, ischaemic heart disease, deep vein thrombosis, diabetes and sepsis. The aim of this systematic review is to report on strategies at the individual, population or policy levels aimed at preventing these conditions that are applicable to adults with intellectual disability and that have been based on or recommended by research. Methods: Systematic review of PUBMED, EMBASE, CINAHL, PsychInfo, Social Care Online, International Bibliography of the Social Sciences (IBSS), Web of Science, Scopus, Overton, the Cochrane Library and Google Scholar databases was carried out. Searches were completed on 30 June 2023. Quantitative, qualitative and mixed‐methods research; systematic, scoping or evidence‐based reviews; and audit and reports of mortality reviews were included. Publications included in the review were about preventing the eight potentially avoidable causes of death. Findings: Ninety‐four papers were included in the review (9 in relation to pneumonia; 11 for aspiration pneumonia; 18 for sudden unexpected death in epilepsy; 7 for cerebrovascular disease; 8 for ischaemic heart disease; 4 for deep vein thrombosis; 31 for diabetes; 6 for sepsis). The eight most frequently occurring potentially avoidable causes of death in people with intellectual disability are very different medical conditions, but they shared striking similarities in how they could be prevented. The literature overwhelmingly implicated the need to make lifestyle changes to address obesity, lack of exercise and poor nutrition, and to have regular medical reviews. In addition, 'whole‐population' approaches are required that look beyond the individual to the social determinants of health. Conclusions: We found little peer‐reviewed evidence specifically about preventing these conditions in people with intellectual disability. However, most of the literature about preventative strategies pertaining to the general population was applicable to people with intellectual disability, albeit that some 'reasonable adjustments' would be required. Accessible Summaries: People with intellectual disability die from some illnesses that could be avoided. This is a bigger problem in people with intellectual disability than in people without intellectual disability.We searched for evidence about what we could do to prevent these illnesses.We found that although the most common illnesses are very different, there are things we can do that will prevent them. Some things will prevent a few illnesses.The best things that we can do are to eat a healthy diet with lots of fruit and vegetables, to do lots of exercise and to lose weight if we are overweight. Changing our lifestyle like this can make a big difference to how long we live.The government also needs to do things, like making sure that healthy food is easy to get and that there are safe places to exercise. [ABSTRACT FROM AUTHOR]

Accessible Summaries: The digital inclusion of people with learning disabilities is an important topic because more of our lives are spent using technology and being online.Articles in this special issue talk about the digital inclusion of people with learning disabilities. We look at their experiences and the experiences of other people in their lives.The articles talk about how people with learning disabilities use technology and the things that help and stop people from using the internet and technology.The articles also talk about how using technology helped a lot of people during the coronavirus disease 2019 pandemic.The articles talk about how people with learning disabilities need choices, opportunities, support and training to make digital inclusion happen so they can use technology like everybody else. [ABSTRACT FROM AUTHOR]

Background: People with learning disabilities are often left behind and ostracised in life, education, employment and in research. This article describes the importance and value that people with learning disabilities can bring when participating in co‐production and lived experience research. The article reports on the inequalities and barriers that people living with learning disabilities have in accessing health and social care services and hospitals and makes recommendations for improving services and people's experiences of services. The intertwining of subject (inequalities and barriers of access) and process (lived experience research and co‐production) leads to more comprehensive knowledge and understanding of learning disabilities. Methods: Co‐production events were held with people with learning disabilities, facilitated by the co‐author (Tom Kerridge). Tom and a service user researcher (Ben Gray) with Asperger's syndrome and schizophrenia thematised transcripts and made recommendations, in Ben's case with the insight of lived experience of learning disabilities and mental health problems. Findings: A series of recommendations are made based on the insight of a lived experience perspective. For example: to have a grass roots learning disabilities champion, lived experience peer mentors and supporters, training via a film made by people with learning disabilities, the involvement of Learning Disabilities Research Ambassadors to conduct phase two of the research as well as other recommendations. Conclusions: Lived experience research and co‐production are at the heart and centre of contemporary research in health and social care. Participation can change feelings of exclusion and stigma into feelings of being valued, accepted and being able to make a difference. Accessible summary: People with learning disabilities and mental health problems (like Ben), can feel left behind, like they do not fit in, do not belong and that their chances in life are limited.People can feel that they do not matter, have no voice or say, and that they are forgotten. People with learning disabilities, in Ben's own personal experience, can feel not listened to, looked down on and can face bullying.This paper is about the value that people living with learning disabilities can bring to research and help make health and social care services better. [ABSTRACT FROM AUTHOR]

Accessible summary People with learning disabilities do not live as long as other people or as long as many should., Nationally, people with learning disabilities do not get as good help when they do get ill., This paper looks at work that was conducted in Lincolnshire to see how the health of people with learning disabilities compared to the rest of the population., The report recommended changes which could be made to make things better., Summary The NHS Constitution requires all NHS organisations to provide high-quality comprehensive services, based on clinical need, which do not discriminate between patients (DH 2010a). Together with its health and social care partners, the NHS also has a statutory duty of care to meet the needs of all patients with dignity and compassion. Recent evidence has revealed sharp failures in the NHS to meet these goals in relation to people with learning disabilities nationally. This article considers the well-established evidence that the latter group have worse health experiences and worse health outcomes than the population as a whole, which significantly contributes to marked inequalities both in morbidity and mortality. The public sector equality duty of the Equality Act 2010 imposes a statutory requirement on health and social care agencies to address such inequalities. This article draws on the first systematic health needs assessment ( HNA) of adults with learning disabilities in the county of Lincolnshire, established in 2011 to identify their health needs and make recommendations for improvement. [ABSTRACT FROM AUTHOR]

Accessible summary • People with learning disabilities have more health needs than the general population, and those health needs are different and require more specialised services. There is evidence of poorer outcomes and less effective health interventions for people with learning disabilities in Scotland, and elsewhere. • Reducing health inequalities is currently a key priority for the Scottish Government and National Health Service (NHS) policy has encouraged patient involvement in healthcare planning and delivery. This article reports on an NHS initiative to involve people with learning disabilities as ‘expert patient’ reviewers in national review teams, looking at the quality of inpatient and community services for people with learning disabilities. All 15 Health Boards in Scotland were reviewed, using a set of quality indicators. Details of the planning and support arrangements are reported. The success of the initiative was evaluated. • This involvement of people with learning disabilities as reviewers of NHS services has tested traditional assumptions and challenged the power imbalance in patient-provider relationships. Recommendations are made for the future success of similar schemes. Reducing health inequalities is a key priority for the Scottish Government. Health authorities are expected to meet quality targets. The involvement of people with learning disabilities in health service review teams has been one of the initiatives used in by National Health Service Quality Improvement Scotland to empower patients and improve health services. This paper describes this initiative, how it was planned, and an evaluation by health staff, carers and people with learning disabilities. Recommendations are made to ensure the future success of this type of initiative in Scotland and elsewhere. This initiative was evaluated positively and tested traditional assumptions, challenging the power imbalance in patient-provider relationships. The theory and the practice of including people with learning disabilities as ‘expert patient’ reviewers are discussed. [ABSTRACT FROM AUTHOR]

Accessible summary: Many people with learning disabilities have poor health and die younger compared to the general population so having regular health checks is very important.Sometimes doctors (general practitioners or GPs) and nurses do not know a person has a learning disability so cannot offer them a suitable health check.We asked GPs and a nurse for their views on ways they can find out who has learning disabilities and whether those ways of finding people workWe found that the doctors and the nurses did not use ways to find out who has learning disabilities very often, but thought they were a good idea.Finding people with learning disabilities meant they could be offered support to attend appointments more easily. Background: People with learning disabilities are at increased risk of physical health conditions and mortality compared to the general population. Initiatives to address these health inequalities include the introduction of learning disability registers, through which people with learning disabilities can be identified and offered annual health checks and reasonable adjustments in their healthcare provision. A barrier to offering such initiatives to people with learning disabilities is that practitioners/providers may be unaware of the presence of a learning disability, and people who meet criteria may not be entered onto general practice learning disability registers. Screening tools can be used to help identify people with learning disabilities in order that they can be offered appropriate health services and reasonable adjustments. This study aimed to explore the awareness and views of UK primary care staff about the existence and role of screening tools for learning disability in their services. Methods: A qualitative approach was used; semistructured online interviews were conducted with a purposive sample of primary care staff recruited via a regional professional network of primary care practitioners. Five general practitioners and one nurse practitioner, representing five primary care practices in the North‐East of England, participated. Interview transcripts were analysed using thematic analysis. Findings: Two themes and associated subthemes were identified. Within Theme 1 ('I haven't had anything much to do with them') two subthemes related to reasons why screening tools were not routinely used. Theme 2 ('I think they're great that they exist') comprised two subthemes that explored the benefits of screening tools, for example, for those practitioners less experienced with people with learning disabilities, and also explored potential reluctance to use them. The study found that most practitioners had some knowledge of screening tools and the general consensus was that they are beneficial. However, the tendency of participants was not to use screening tools in a consistent and/or systematic way, instead relying on informal approaches or other services for identifying the presence of learning disabilities. Conclusions: The study findings highlight the need for changes in practice to support primary care staff to access and systematically use evidence‐based effective and efficient screening tools for learning disability. [ABSTRACT FROM AUTHOR]

Accessible summary In our research, we looked at why people with learning disabilities sometimes live shorter lives than other people. We were told about the deaths of 247 people with learning disabilities. We looked at what happened to these people before they died., We found that the professionals who were supporting these people learnt a lot from our research. This led to some changes in how they support people with learning disabilities., We have also seen that people are using the findings to improve the care and services for people with learning disabilities in the places they live., The Department of Health and NHS England are some of the organisations working to make sure doctors and nurses listen to what our research said., Summary The Confidential Inquiry into premature deaths of people with learning disabilities ( CIPOLD) was commissioned by the Department of Health in England in 2010 to investigate the avoidable or premature deaths of people with learning disabilities through retrospective reviews of deaths. Both the process of conducting CIPOLD and the findings of the study itself made an impact on the way in which professionals thought about issues relating to people with learning disabilities and led to changes in policy and practice. Much of the impact of CIPOLD came from arming practitioners, family carers, people with learning disabilities and policy makers with the research findings and encouraging them to take on the mantle of change from there, for example, by increasing the provision of training or reviewing their current practice. There were a number of challenges that the research team faced. First, they needed to ensure the assiduous recording of any impact that took place throughout the duration of the research and beyond. Secondly, they were careful to make sure that as far as possible, professionals were involved and that it was a learning experience for them from which they had something to gain. Thirdly, self-reflexivity on the part of the research team was required in order for them to understand where their own strengths and limitations lay. [ABSTRACT FROM AUTHOR]

Accessible summary People with a learning disability have a special risk of developing certain problems with their health. Heart disease can also happen to people with a learning disability., We do not know how we should help people with a learning disability stay healthy and not develop heart disease., We trained staff using a programme designed to improve what they know about heart disease. This programme also helps staff learn ways to help people improve their health., After training, staff knew a lot more about heart disease and felt more confident about being able to improve the health of people with a learning disability., Summary People with learning disabilities are at increased risk of coronary heart disease ( CHD). Research suggests this may be due to inequalities in health status and inequities in the way health services respond to need. Little is known about the most effective way to improve health outcomes for people with learning disabilities. A previously developed CHD educational resource was piloted within residential community support organisations working closely with adults with complex learning disabilities. Following the training, improvements in knowledge of CHD-related topics were noted. Improvements were also seen in skills and confidence relating to working with others. Participant satisfaction with the training was demonstrated in terms of the acceptability and effectiveness of the training. Systematic training of this nature could lead to increased awareness of and attention to the cardiac health requirements of individuals, thereby improving the health outcomes, health literacy and ultimately self-management of people with learning disabilities. [ABSTRACT FROM AUTHOR]

Accessible summary We did twelve interviews all about the times people with learning disabilities had been to hospital since March 2007. Some of them were with people with learning disabilities and some of them were with the carers of people with learning disabilities., This article talks about what people told us in the interviews and makes some recommendations to hospital staff which we think would help improve hospital experiences for people with learning disabilities in the future., This research should be important to people with learning disabilities because people with learning disabilities often have more need to attend hospital than other people, and so it is important that the care they receive is of a good enough standard when they are there., Summary People with a learning disability face a number of challenges when seeking access to hospital care which are often distinct from those faced by the general population. Numerous statistics indicative of these challenges are represented in the academic literature. Previous research has suggested several reasons for the continued existence of these challenges, including a lack of expertise in the provision of health care to people with learning disabilities and negative attitudes towards this population held by healthcare professionals. As a means of elucidating the hospital experiences of people with learning disabilities on Merseyside, the researcher conducted 13 semi-structured interviews - an analysis of 12 of which are included in this article. Of these 12 interviews, two were conducted with an unaccompanied person with a learning disability, three were conducted with a person with a learning disability alongside their carer, and seven were conducted with the carer or carers of a person with a learning disability. The topics discussed in these semi-structured interviews were determined by the findings of a literature search and pilot interview. Emergent themes within the interview transcripts are discussed and recommendations made for healthcare professionals engaged in the hospital care of people with learning disabilities. It is concluded that people with learning disabilities on Merseyside continue to contest with the same difficulties during hospital experiences as have been identified previously by numerous national and international investigations. [ABSTRACT FROM AUTHOR]