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Accessible summary We wanted to know what people with learning disabilities know about dementia. We asked service users what the word meant to them, if they knew anyone with dementia, and what it was like to share a house with someone who has dementia. We learnt that: • Service users can know a lot about dementia. • Living with someone with dementia can be really hard – and staff do not always have enough time for everyone else. • Services should think more about how dementia affects everyone – not just the person who has the dementia. This paper reports on research that illuminates how people with a learning disability understand dementia and indicates the implications of these understandings for developing appropriate models of care. As this new policy and practice area struggles to provide appropriate and effective models of care for people with a learning disability and dementia, an awareness of service users’ understandings of dementia leads to a number of important insights. The wider research programme from which this paper is drawn aims to identify best practice in supporting people with learning disabilities to stay in their own homes as they grow older and develop dementia. A combination of focus groups, ethnography and individual interviews were conducted at eight sites across England. Participants were people with a learning disability who had dementia, and those who have lived with someone with dementia. The findings have the potential to improve support to this population as they grow older. [ABSTRACT FROM AUTHOR]

Accessible summary • This paper is about a workshop held by researchers from the University of Leeds. • The researchers looked at one area to see if people were doing things about health that the Government said they should in Valuing People. • The research found out that there is still a lot of work to do in the area to meet these targets. People came to a workshop to talk about this. They thought that: • Learning disability services should lead the way and draw up a plan about what needs to happen. • People who run health services should make sure they set targets for GPs and hospitals that fit in with the plan. • Government should make sure that the targets they set for GPs also fit in with Valuing People targets. • This research is important because it can show what helps health services improve for people with learning disabilities and what gets in the way. Research at the University of Leeds has evaluated how well changes to healthcare proposed in the Government White Paper Valuing People ( Department of Health 2001 ) were being implemented in one locality and their impact on people with learning disabilities. The project had a developmental aspect and incorporated two workshops over the course of the study to disseminate preliminary findings. These were used to help key stakeholders evaluate progress and to inform discussions about what should happen next in the fieldwork area. This paper discusses recommendations from the first research workshop at which preliminary findings from the study were presented. The workshop involved health and social care providers and managers, people with learning disabilities, voluntary and community organizations. It gives an overview of local issues relevant to the White Paper health targets and highlights those that need to be resolved before these targets can be achieved. These issues are likely to be replicated in other areas of England and Wales and have implications for leadership, strategy, the allocation of resources and structures of accountability in health and social care agencies. [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: When young people with learning disabilities leave the care system, they can experience many problems. Here we describe some of these problems and what they do (or would like us to do) to improve things. Young people do not always want the same things that professionals or family carers want. We do not spend enough time listening to what young people can tell us. Abstract: Background: Young people with learning disabilities are frequently underrepresented in research accounts. This study describes the experiences of young people moving from the care system. Methods: We scoped the English and Swedish literature for first‐hand accounts and interviewed four young people with learning disabilities leaving the English care system. We combined findings from both sources. Findings: “Grey” and campaigning literature are more likely than academic studies to include the voices of service users, but even then, the voices tend to be those of professional or family carers. Both the literature and interviews demonstrate young peoples’ awareness and understanding of the social as well as financial benefits of work. Good foster care could be precarious, and young people in unhappy placements lacked direction. Exploitation around a young person's housing and finances could be problems. There was evidence of “threshold” difficulties in accessing services. Conclusions: Despite an NHS commitment to listening to users in the UK, and similar aspirations in Sweden, our search of the literature identified few studies reporting care leavers' with learning disabilities own words. Our data add to the voices of a group frequently silent or silenced. We found evidence of resilience and hope as well as difficulties and frustrations. The accounts in the literature and our interviews provide data on what it can be like to try to operate “the system.” The people we spoke with and those whose accounts we found in the literature were thoughtful and engaging. They provide an important source of knowledge for policy and practice. [ABSTRACT FROM AUTHOR]

Accessible summary We gave a questionnaire to self-advocates who were attending a conference. The questionnaire asked them how they felt about the information they get with their medicine., Fifty-eight people completed the questionnaire. Many of them said they did not get enough information about their medicine. Most people wanted easy-read leaflets and pictures., There are many different places to find easy-read information on the internet. We think they should be collected and checked. We also think that doctors and chemists need to spend more time with people to explain about medicines., Abstract Background Previous research has found that people with learning disabilities are not given prescription information that is tailored to their needs. We wanted to find out people's information requirements. Materials and Methods A questionnaire was co-produced by the authors and consultants with learning disabilities. It asked what information people received from their GP and pharmacist about medications. The questionnaire was circulated at a self-advocacy conference in the North of England. Fifty-eight self-advocates completed the questionnaire. Results Information from GPs and pharmacists was mainly instructional, referring to when and how to take the medicine and dosage. Most respondents struggled to read the leaflets and remember verbal information. Many wanted the information in easy-read format, and some wanted pictures or diagrams as well. A key theme was that health professionals often talked only to carers or support workers rather than involving the patient directly, and some respondents disclosed that they were not informed about side effects or alternative medications. Conclusions Health professionals should take time to discuss health issues and medication with the individual rather than only with carers. This could be facilitated by providing information in an accessible format. [ABSTRACT FROM AUTHOR]