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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 a learning disability can have epilepsy and can have long seizures. •The treatment for long seizures is rectal diazepam given up the back passage. •Some carers and people with epilepsy do not like this. •Buccal midazolam is a treatment for long seizures that is given by mouth. •Buccal midazolam seems to work as well as rectal diazepam in children with epilepsy. •New guidance to doctors says they can use buccal midazolam in adults for long seizures. •People with learning disabilities and carers can ask their doctor to prescribe buccal midazolam instead of rectal diazepam to treat long seizures. Background Buccal midazolam is widely used in children for the emergency treatment of epilepsy, and these children are graduating into adult learning disability services. Aims The aim of this paper was to appraise the evidence for buccal midazolam as a treatment for prolonged seizures in adults with learning disabilities. Method A literature search was performed and the identified papers appraised. Results The literature search identified only one randomized trial for buccal midazolam as emergency treatment of seizures, and this was in children and adolescents. It showed that buccal midazolam was as effective as rectal diazepam. Conclusions There is evidence that buccal midazolam is effective, but it is unlicensed for this purpose. Rectal diazepam should remain the first choice, but buccal midazolam should be discussed with patients and carers as an alternative. Declaration of interest nil. [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]

The appropriateness and justification of physical restraint procedures in secure learning disability settings is an emotive issue. This paper examines the views of service users ( n = 10) from secure residential facilities who are restrained frequently. Using a semi-structured interview schedule, Service users were interviewed about their restraint experiences. They reported that restraint can lead to potentially abusive situations and that staff should try other approaches before restraining someone. They were divided on whether it calmed them down and whether staff enjoyed performing restraint. Other comments included that restraint may or may not serve a purposeful goal and that there is a definite need for staff training for those involved in performing restraint. [ABSTRACT FROM AUTHOR]

With the promotion and wider acceptance of the concept of ‘normalization’ and ‘community integration’, an increased number of adults with learning disabilities are living in the community and facing more social and health care problems. The authors describe the introduction of new guardianship laws in Hong Kong with the creation of a Guardianship Board to safeguard the interests of all those who are mentally unable to make decisions about their personal, medical or financial affairs. Some case vignettes are provided to illustrate its functions and roles. By sharing the Hong Kong experience, it is hoped that this paper can raise awareness of circumstances in countries that are planning to develop or reform their guardianship practices for people with learning disabilities. [ABSTRACT FROM AUTHOR]

The article presents an introductory statement to the March 2006 issue of the "Journal of Learning Disabilities." Three papers in the issue highlight the gap between the rhetoric of inclusion and involvement and the reality of people's experiences. Another paper reflects on the difficulties of obtaining people's views on their health care. One research highlights the hopes and dreams of policy makers, implementers and practitioners for the provision of services for older people with learning disabilities.