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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]

The process of consultation has become integral to the development, implementation and evaluation of a raft of UK health and social policies. However, the current bewildering patchwork of area–based initiatives means that, in many localities, it is impossible to evaluate the outcomes of particular targeted initiatives, let alone make sense of local planning consultations, Best Value reviews and (multi–agency) service reviews which run concurrently. The cumulative effects of this consultation “overload” threaten to swamp both local authorities and their service users. Consul–tation is itself a crucial yet deeply problematic process. There is an official view which holds that an “old” model of consultation—often tokenistic and unrepresentative—is being replaced with a “new” one. This paper examines and challenges that view in relation to the key policy areas of housing, social services and policing. It also pays particular attention to, and problematizes, the notion of “hard–to–reach groups”, which is so dominant in the discourse of consultation. The paper argues that developing appropriate tools and recognizing that consultation is a process—not an event—are essential starting points in addressing these problems. The next step is to reconcile the principles of both evidence–based policy and user–led services into a strategic (and “joined–up”) framework. But, when all this is accomplished, we still need to question the political and fiscal contexts in which policy–making takes place and within which the process of consultation is itself bounded. [ABSTRACT FROM AUTHOR]

Background It is good practice for the public to be involved in developing research ideas into grant applications. Some positive accounts of this process have been published, but little is known about when their reactions are negative and when researchers' ideas are abandoned. Objective To present a case study account of when an academic-led idea for funding was not supported by stroke survivors and carers who were asked to contribute to its development, together with a reflection on the implications of the case from all the stakeholders involved. Design A reflective case study of a research idea, developed by an academic researcher, on which stakeholders were consulted. Participants University researchers, clinicians, public involvement managers, and stroke survivors and carers from the NIHR's Stroke Research Network. Findings Although the idea met with the approval of health professionals, who were keen to develop it into a funding bid, the stroke survivors and carers did not think the idea worth pursuing. This lack of patient and carer support led to the idea being abandoned. Reflecting on this, those involved in the consultation believed that the savings accrued from abandoning the idea, in terms of ensuring that public money is not wasted, should be seen as an important benefit of public involvement in the research process. Conclusion Little is known about the role of the public in the abandonment of research ideas. We recommend that further research is undertaken into this important contribution that patients and the public can make to health research. [ABSTRACT FROM AUTHOR]

Background Children with complex healthcare needs are often excluded, both from active involvement in research projects and from direct consultation in services. During a 3-year research study into multi-agency services for children with complex healthcare needs, the authors involved children in a number of innovative ways and endeavoured to discover what impact, if any, multi-agency working made to them. Methods The researchers ‘spent time’ with 18 children with complex healthcare needs. They used a variety of methods to engage with the children in a meaningful way. More than half of the children had no verbal communication, so it was necessary in some cases to work with an advocate, usually the parent, to aid the process. Results Children with complex healthcare needs can take part in research as long as the research is set up sensitively and flexibly. In terms of the impact of multi-agency working, the authors concluded significant advances had been achieved for this group: almost all the children were living at home and attending school. However, there were significant gaps in addressing children’s human rights in relation to communication, independence and relationships. In addition, many of the children had very little effective direct consultation with the multi-agency services. Conclusions There are significant advances in involving disabled children in research and in service delivery, but there is still some way to go in involving those with complex healthcare needs. The challenges are considerable, but the benefits far outweigh these, not least being the value that parents, carers and the children themselves place upon being listened to. [ABSTRACT FROM AUTHOR]

Objective: To conduct a systematic review of the effectiveness of consultation recordings and identify factors contributing to their successful implementation in health-care settings.Methods: A systematic review was conducted for quantitative studies examining the effectiveness of consultation recordings in health care. Two independent reviewers assessed the relevance and quality of retrieved quantitative studies by using standardized criteria. Study findings were examined to determine consultation recording effectiveness and to identify barriers and facilitators to implementation. A supplementary review of qualitative evidence was performed to further explicate implementation factors.Results: Of the 3373 articles retrieved in the quantitative search, 26 satisfied the standardized inclusion criteria (12 randomized controlled trials, 1 quasi-experiment, and 13 cross-sectional studies). Most patients found consultation recordings beneficial. Statistically significant evidentiary support was found for the beneficial impact of consultation recordings on the following patient reported outcomes: knowledge, perception of being informed, information recall, decision-making factors, anxiety, and depression. Implementation barriers included strength of evidence concerns, patient distress, impact of the recording on consultation quality, clinic procedures, medico-legal issues, and resource costs. Facilitators included comfort with being recorded, clinical champions, legal strategies, efficient recording procedures, and a positive consultation recording experience.Conclusions: Consultation recordings are valuable to patients and positively associated with patient-reported outcomes. Successful integration of consultation recording use into clinical practice requires an administratively supported, systematic approach to addressing implementation factors. [ABSTRACT FROM AUTHOR]

Aim This article offers a brief description and analysis of public participation in health in Brazil and England in order to highlight different motivators and tensions within an acceptance of participation as official policy. Sources/methods The article draws on a range of research in both countries and an analysis of official documents relating to participation. It is based on collaboration between researchers deriving from broad programmes of work on public participation in which the authors are involved. Argument There is a tension between different principles underpinning collective public involvement in health both within and between countries. Different aspirations or claims have been made about what such participation will achieve and there are trade-offs between design principles that have consequences for issues such as who takes part and thus also for what can be achieved. The democratic origins of public participation are more evident in the Brazilian situation than in England, but there are still questions about the inclusivity of the practices through which this is achieved. The English picture is both more diverse and dynamic, but formal decision-making power of participatory forums is less than in Brazil. Whilst social justice claims for participation have been made in both countries, there is as yet limited evidence that these have been realized. [ABSTRACT FROM AUTHOR]

Objectives: To survey California emergency department (ED) medical directors’ impressions of on-call specialist availability and higher level of care (HLOC) transfer needs and difficulties and changes since the passage of the Emergency Medicine Treatment and Active Labor Act (EMTALA) final rule in 2003. Methods: The authors conducted a survey of all California ED medical directors from February to June 2006 with regard to the composition of the ED on-call panel and need for HLOC transfer. ED demographic data were obtained from the California Office of Statewide Health Planning and Development. Results: Overall response rate was 243 of 347 (70%). More than 80% of respondent EDs reported having internal medicine, obstetrics/gynecology (OB/GYN), and pediatrics on call. However, fewer than 60% of EDs reported cardiac surgery, otolaryngology, neurosurgery, plastic surgery, or vascular surgery on call. Specialists were less likely to be on call in rural EDs. On-call coverage was rated worse than 3 years ago for 10 of 16 specialties. Rural EDs were more likely, and trauma centers and teaching hospitals were less likely to transfer at least one patient daily for HLOC. ED medical directors reported that the ability to transfer for HLOC has worsened over the past 3 years for all specialties. Respondents indicated that more than 40% of ear, nose, and throat (ENT), orthopedics, plastic surgery, and mental health HLOC transfers take more than 3 hours. Conclusions: This survey of California ED medical directors suggests ED on-call specialist availability and the ability to transfer for HLOC have worsened since the passage of the EMTALA final rule in 2003. [ABSTRACT FROM AUTHOR]

Objectives The objective of this study was to identify what children and young people in a health district in a large urban area experience as positive - and not so positive - about their local health services, in the light of a growing expectation that users play a more central role in the design and delivery of services. Design A qualitative study incorporating a range of methods, including interviews, play techniques and a Web site. Setting Schools, nurseries, community groups, in- and outpatient settings in an inner London health authority. Participants Young people aged between 4 and 19 years, from community (n = 92) and clinical (n = 57) settings. This included 'hard-to-reach' children, including those leaving care, those in touch with the criminal justice system, asylum seekers, and those with learning disabilities. Results Alongside planning and environment issues, young people particularly emphasized the impact of communication and relationships with staff on their experience of health services. Discussion and conclusions Using a range of flexible and age- appropriate techniques, young people, even those as young as 4 or 5, are able to comment helpfully on their experiences of service provision. What children had to say is revealing but not astonishing to those working in the National Health Service (NHS). Clinicians and managers, to whom our findings were fed back, made this clear. If we have known for so long that the issues raised here are problems, why are we so poor at acting on this knowledge? The authors suggest four explanations. [ABSTRACT FROM AUTHOR]

Research has demonstrated that women are more likely to disclose domestic violence to a GP during the consultation in primary health care than in Accident and Emergency. Little is known of the process of disclosure in the context of primary health care, especially from the perspective of the GP. In this article we present data from a pilot study with GPs working in a city locality about their experiences of disclosure and the actual processes through which they suspect and explore domestic abuse. We draw upon the work of, amongst others, Strong (1979) and his analysis of medical encounters to consider the consultation in which domestic abuse is disclosed in terms of a ceremonial order. The concepts of time (Adam 2000) and myths (Barthes 1972) provide crucial dimensions to our analysis. GPs employed various concepts of time as vehicles for explaining the reasons for, and circumstances surrounding, violence as well as presenting barriers to further involvement. GPs mythologised time by asserting they did not have enough time and yet revealing their ability to control and suspend time in the consultation if they consider it to be appropriate. In the process of mythologising time, the ceremonial order can become paramount. In conclusion, we contend that the sociology of health and illness might gain further conceptual and analytical understanding of the consultation by merging notions of ceremonial order with a fuller appreciation of sociological theory on time and myths, especially as this poses barriers to the disclosure of domestic abuse and other sensitive matters. [ABSTRACT FROM AUTHOR]