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Watchful waiting is a concept that is traditionally not associated with severe and enduring mental illness. This paper, however, boldly argues that the concept could be used as a ground‐breaking and accessible antidote to the perceived inequality experienced by black service users experiencing both mild and severe mental illnesses in England. The novel concepts proposed in this paper are not intended to be consensual, but rather uncompromising to provoke critical thinking in mental health practice. A conceptual framework for watchful waiting in mental health is suggested. [ABSTRACT FROM AUTHOR]

Since the mid‐19th century, there have been concerns in England about suboptimal outcomes for care leavers. This paper draws on original data from case files of children who were admitted to the Children's Society between 1887 and 1894, and a contemporary study of outcomes for girls who had been brought up in Poor Law district schools, to explore the basis for these concerns. Widespread destitution in the community meant that many children in care were better fed, clothed and educated than their contemporaries. However, those who left the Poor Law schools were singularly ill prepared for independence, and the much vaunted training offered by the voluntary societies did not prepare children to enter occupations that would provide stable or well‐paid employment. Emerging understanding of the needs of care leavers for continuing support and protection was translated into policies and practices that continue to be relevant a hundred years later. However, factors that shaped the experiences of 19th century care leavers, such as short‐term financial considerations which led to compressed and accelerated transitions, and the principle of less eligibility, still tend to conflict with attempts to ensure that their needs are adequately met today. [ABSTRACT FROM AUTHOR]

Background: Obesity rates are higher among people of lower socioeconomic status. While numerous health behaviour interventions targeting obesity exist, they are more successful at engaging higher socioeconomic status populations, leaving those in less affluent circumstances with poorer outcomes. This highlights a need for more tailored interventions. The aim of this study was to enhance an existing weight loss course for adults living in low socioeconomic communities. Methods: The Behaviour Change Wheel approach was followed to design an add‐on intervention to an existing local authority‐run weight loss group, informed by mixed‐methods research and stakeholder engagement. Results: The COM‐B analysis of qualitative data revealed that changes were required to psychological capability, physical and social opportunity and reflective motivation to enable dietary goal‐setting behaviours. The resulting SMART‐C booklet included 6 weeks of dietary goal setting, with weekly behavioural contract and review. Conclusion: This paper details the development of the theory‐ and evidence‐informed SMART‐C intervention. This is the first report of the Behaviour Change Wheel being used to design an add‐on tool to enhance existing weight loss services. The process benefitted from a further checking stage with stakeholders. [ABSTRACT FROM AUTHOR]

Objectives: Cognitive stimulation therapy (CST) is one of the few non‐pharmacological interventions for people living with dementia shown to be effective and cost‐effective. What are the current and future cost and health‐related quality of life implications of scaling‐up CST to eligible new cases of dementia in England? Methods/design: Data from trials were combined with microsimulation and macrosimulation modelling to project future prevalence, needs and costs. Health and social costs, unpaid care costs and quality‐adjusted life years (QALYs) were compared with and without scaling‐up of CST and follow‐on maintenance CST (MCST). Results: Scaling‐up group CST requires year‐on‐year increases in expenditure (mainly on staff), but these would be partially offset by reductions in health and care costs. Unpaid care costs would increase. Scaling‐up MCST would also require additional expenditure, but without generating savings elsewhere. There would be improvements in general cognitive functioning and health‐related quality of life, summarised in terms of QALY gains. Cost per QALY for CST alone would increase from £12,596 in 2015 to £19,573 by 2040, which is below the threshold for cost‐effectiveness used by the National Institute for Health and Care Excellence (NICE). Cost per QALY for CST and MCST combined would grow from £19,883 in 2015 to £30,906 by 2040, making it less likely to be recommended by NICE on cost‐effectiveness grounds. Conclusions: Scaling‐up CST England for people with incident dementia can improve lives in an affordable, cost‐effective manner. Adding MCST also improves health‐related quality of life, but the economic evidence is less compelling. Key points: There are few evidence‐based non‐pharmacological interventions for people living with dementia. Cognitive stimulation therapy (CST) is both effective and cost‐effective, but current availability is constrainedThis paper reports the cost and health‐related quality of life implications of scaling‐up cognitive stimulation therapy to eligible people with dementia in England over a 25 year periodScaling‐up CST would improve general cognitive functioning and health‐related quality of life, but also increase costs for health and social care services, and for family and other unpaid carers. Adding maintenance CST would also improve health‐related quality of life, with even greater cost increasesThe higher costs of scaling‐up CST to the full eligible population over a 25 year period would be considered worth paying by reference to criteria used by the National Institute for Health and Care Excellence (NICE) in England. The economic evidence for adding maintenance CST is less compelling [ABSTRACT FROM AUTHOR]

An introduction is presented in which editor discusses articles in the issue on topics, the risk factors of delirium in paediatric and adult intensive care unit patients; the impact a nurse-led Focussed Ultrasound in Intensive Care; and peripheral nerve injuries in patients with COVID pneumonitis.

Health spending per capita in England has almost doubled since 1997, yet relatively little is known about how that spending is distributed across the population. This paper uses administrative National Health Service (NHS) hospital records to examine key features of public hospital spending in England. We describe how costs vary across the life cycle, and the concentration of spending among people and over time. We find that costs per person start to increase after age 50 and escalate after age 70. Spending is highly concentrated in a small section of the population, but the degree of concentration is lower for older age groups. For those aged 25 and under, a third of all hospital spending is accounted for by 1 per cent of the population under 25 and a fifth of spending is accounted for by 1 per cent of patients under 25. For those aged 65 and over, these figures fall to 22 and 13 per cent, respectively. There is persistence in spending over time, with patients with high spending more likely to have spending in subsequent years and those with zero expenditures more likely to remain out of hospital. [ABSTRACT FROM AUTHOR]

Introduction: The adoption of remote healthcare methods has been accelerated by the COVID‐19 pandemic, but evidence suggests that some patients need additional support to engage remotely, potentially increasing health disparities if needs are not met. This study of COVID‐19 remote home monitoring services across England explores experiences of and engagement with the service across different patient groups. Methods: This was a mixed‐methods study with survey and interview data collected from 28 services across England between February and June 2021. Surveys were conducted with staff and patients and carers receiving the service. Interviews with staff service leads, patients and carers were conducted in 17 sites. Quantitative data were analysed using univariate and multivariate methods, and qualitative data were analysed using thematic analysis. Findings: Survey responses were received from 292 staff and 1069 patients and carers. Twenty‐three staff service leads, 59 patients and 3 carers were interviewed. Many service leads reported that they had considered inclusivity when adapting the service for their local population; strategies included widening the eligibility criteria, prioritising vulnerable groups and creating referral pathways. However, disparities were reported across patient groups in their experiences and engagement. Older patients reported the service to be less helpful (p = 0.004), were more likely to report a problem (p < 0.001) and had more difficulty in understanding information (p = 0.005). Health status (p = 0.004), ethnicity (p < 0.001), gender (p < 0.001) and employment (p = 0.007) were associated with differential engagement with monitoring, and minority ethnic groups reported more difficulty understanding service information (p = 0.001). Qualitative data found illness severity to be an important factor in the support required, and patients' living situation and social network affected whether they found the service reassuring. Conclusion: Addressing health disparities must be a key focus in the design and delivery of remote care. Services should be tailored to match the needs of their local population, encourage access through collaboration and referral pathways with other services and monitor their inclusiveness. Involving patients and staff in service design can illuminate the diversity of patients' needs and experiences of care. Patient or Public Contribution: The study team met with service user and public members of the BRACE PPI group and patient representatives from RSET in a series of workshops. Workshops informed study design, data collection tools, data interpretation and dissemination activities. Study documents (such as consent forms, topic guides, surveys and information sheets) were reviewed by PPI members; patient surveys and interview guides were piloted, and members also commented on the manuscript. [ABSTRACT FROM AUTHOR]

The National Institute for Health Research (NIHR) aims to improve national 'health and wealth' by providing infrastructural support to enable clinical research in National Health Service settings in England and Wales. Cognisant of the consequences of studies' failure to achieve required numbers of participants, it also actively campaigns to promote patient awareness of research, and willingness to participate in trials. In this paper, we analyse recent NIHR campaigns and policies designed to encourage patients to participate in clinical research to interrogate how they are implicated in the national bioeconomy. In doing so we expand the notion of 'clinical labour' to include the work of patient recruitment and highlight an emergent obligation on patients to contribute to research processes. Whereas once patient knowledge and experience may have been devalued, here we draw on the concept of 'assetisation' (Birch 2012) to explore the emergent relationship between healthcare system and patient as research participant. We consider how patients' contribution goes beyond the provision of standardised objects of valuation so that patients themselves may be perceived as assets to, not only recipients of, the national healthcare system. [ABSTRACT FROM AUTHOR]

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Background: Early Intervention in Psychosis (EIP) services have been implemented with the dual aims of preventing harmful outcomes associated with early‐onset psychosis and improving prognosis. However, concerns have been raised regarding the ethical implications of involving young people in EIP services. One way to ensure high ethical standards and promote good practice in EIP delivery is through governance of clinical practice. This study aimed to investigate the normative dimensions of good practice in EIP through examination of clinical guideline documents published in England over the past 15 years. Methods: A total of 14 clinical guidelines and relevant policy documents for EIP were retrieved and analysed using a mixed inductive and deductive thematic approach. Themes were derived from the data itself, whereas the development of broader categories was performed through a constant comparison with the scientific literature describing ethical issues in EIP. Results: Ethical touchpoints of good practice in EIP included both procedural and substantive factors, which were seen to be interdependent and mutually constitutive. These ethical touchpoints were largely implicit in the documents analysed. Procedural requirements of EIP service delivery consisted of norms and rules pertaining to EIP service structure, adherence to codes of ethics, inclusivity, patient and family centredness and appropriate treatment provision. Substantive factors consisted of moral attributes that should be cultivated by healthcare professionals working in EIP: competency, empathy, sensitivity and trustworthiness. Conclusions: We argue that, to ensure good practice in EIP, procedural and substantive ethical expectations embedded in EIP guideline documents should be made explicit in EIP service and care delivery. We suggest that the procedural and substantive factors highlighted in this paper contribute useful dimensions for the eventual evaluation of good practice in EIP services across England. [ABSTRACT FROM AUTHOR]

Background: In England and Wales, 'approved premises' offer 24-hour staffed accommodation for high-risk offenders, most of whom are returning to the community from prison. With a move towards a standardised operating model, it is essential to be able to measure outcomes.Aims: Our aim is to collate and evaluate 'benchmarks' for approved premises.Methods: A cross-sectional, descriptive design was used to establish the impact of existing practice in all four approved premises in Wales. Data on well-being, life satisfaction, attitudes to violence and problem-solving abilities were recorded with 114 male residents (of 486), and attitudes to personality disorder and personal well-being/burnout with 30 staff (of 86), in both narrative style and according to a number of scales used within criminal justice and healthcare systems. Perceptions of environmental climate were assessed with both groups. Scores were compared with those from reference groups, including prisoners and secure hospital patients. Criminological outcomes (e.g. prison recall) were obtained for all 486 men.Results: Scores on the scales used were broadly comparable with those in relevant reference groups, but some showed floor or ceiling effects. Recall rates, whether directly from the premises or after further onward movement, were about 42% overall, comparable with those reported for similar offenders elsewhere.Conclusions: This paper provides a short battery of measurements for use as benchmarks of experience and outcomes in staffed community accommodation for high-risk men. Copyright © 2017 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Health care in England is predominantly provided free at the point of service through the publicly-funded National Health Service (NHS). Total NHS expenditure, which has risen in real terms by an average of 3.7 per cent per annum since the inception of the NHS in 1948, constituted 7.9 per cent of GDP in 2012. This paper presents a summary of the trends in medical expenditure in England together with, using detailed administrative data, an analysis of the growth over 15 years of expenditure and activity in hospital inpatient health care, which represents around 20-25 per cent of all NHS expenditure. We document the coincidence of observed trends in expenditure with reported activity, morbidity and the proximity of individuals to death. We find that: (i) expenditure for both elective and emergency inpatient care broadly follows activity, so that expenditure is mostly driven by activity rather than unit costs; (ii) expenditure is concentrated in individuals with multiple diseases, so that the prevalence and identification of complex medical conditions are important drivers of expenditure; and (iii) health care activity rises substantially for individuals in the period before death, so that expenditure is driven substantially by mortality in the population. Taken together, these findings indicate that this element of health care expenditure in England has been substantially driven by the underlying morbidity and age of the population in conjunction with improving health care technology. [ABSTRACT FROM AUTHOR]

This paper reviews what is known about socio-economic inequalities in health care in England, with particular attention to inequalities relative to need that may be considered unfair ('inequities'). We call inequalities of 5 per cent or less between the most and least deprived socio-economic quintile groups 'slight', inequalities of 5-15 per cent 'moderate' and inequalities of more than 15 per cent 'substantial'. Overall public health care expenditure is substantially concentrated on poorer people. At any given age, poorer people are more likely to see their family doctor, have a public outpatient appointment, visit accident and emergency, and stay in hospital for publicly-funded inpatient treatment. After allowing for current self-assessed health and morbidity, there is slight pro-rich inequity in combined public and private medical specialist visits but not in family doctor visits. There are also slight pro-rich inequities in overall indicators of clinical process quality and patient experience from public health care, substantial pro-rich inequalities in bereaved people's experiences of health and social care for recently deceased relatives, and mostly slight but occasionally substantial pro-rich inequities in the use of preventive care (for example, dental check-ups, eye tests, screening and vaccination) and a few specific treatments (for example, hip and knee replacement). Studies of population health care outcomes (for example, avoidable emergency hospitalisation) find substantial pro-rich inequality after adjusting for age and sex only. These findings are all consistent with a broad economic framework that sees health care as just one input into the production of health over the life course, alongside many other socio-economically patterned inputs including environmental factors (for example, living and working conditions), consumption (for example, diet and smoking), self-care (for example, seeking medical information) and informal care (for example, support from family and friends). [ABSTRACT FROM AUTHOR]

Background: The high prevalence of mental disorders among women in prison is recognised worldwide. In England and Wales, successive governments and independent reports have argued that the equivalent of community care in prisons is acceptable but that some mental health assessment units (MHAUs), staffed by professional clinicians, should remain. These have not been researched.Aims: This paper aimed to explore patterns of use of a MHAU in a women's prison in England and to test the hypothesis that it was being used only, as intended--to hold women pending transfer to a health service hospital or in a bona fide crisis.Methods: Anonymised data on all women transferred to one MHAU between 1 January 2008 and 31 August 2010 were obtained from the prison files and subjected to descriptive analysis.Results: Less than a third of these women were transferred to an outside hospital; this group stayed longest in the unit. An overlapping group of 52% of the women was under a special assessment, care in custody and teamwork protocol because of suicide or serious self-harm risk. Thus, 188 (68%) admissions fulfilled national protocol criteria for MHAU admissions. Two in five women admitted were released or returned to ordinary prison locations. Nevertheless, over 80% of the women were known to external mental health services, and 64 (30%) were so unwell on arrival in prison that they were transferred directly to the MHAU. Over a third of admissions were of women admitted more than once during the 32 months of study, and this was significantly more likely after release from prison directly to the community.Conclusions: Our hypothesis was not sustained, and it seems unlikely that this prison MHAU is unique in being used outside its strict remit. A shift from studying the epidemiology of mental disorder in prisons to the epidemiology of mental health needs could benefit this vulnerable group and the wider community alike. [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]

Context In 2004, the English Public Health White Paper Choosing Health introduced 'health trainers' as new members of the National Health Service (NHS) workforce. Health trainers would offer one-to-one peer-support to anyone who wished to adopt and maintain a healthier lifestyle. Choosing Health implicitly envisaged health trainers working in community settings in order to engage 'hard-to-reach' individuals and other groups who often have the poorest health but who engage the least with traditional health promotion and other NHS services. Methods During longitudinal case studies of 6 local health trainer services, we conducted in-depth interviews with key stakeholders and analyzed service activity data. Findings Rather than an unproblematic and stable implementation of community-focused services according to the vision in Choosing Health, we observed substantial shifts in the case studies' configuration and delivery as the services embedded themselves in the local NHS systems. To explain these observations, we drew on a recently proposed conceptual framework to examine and understand the adoption and diffusion of innovations in health care systems. Conclusions The health trainer services have become more 'medicalized' over time, and in doing so, the original theory underpinning the program has been threatened. The paradox is that policymakers and practitioners recognize the need to have a different service model for traditional NHS services if they want hard-to-reach populations to engage in preventive actions as a first step to redress health inequalities. The long-term sustainability of any new service model, however, depends on its aligning with the established medical system's (ie, the NHS's) characteristics. [ABSTRACT FROM AUTHOR]

Background: In recent years, the difficulty for young people with mental health issues who require a transition to adult services has been highlighted by several studies. In March 2018 the National Institute of Health and Care Excellence (NICE) produced detailed guidelines for the diagnosis and management of attention deficit hyperactivity disorder (ADHD), updated from previous versions in 2008 and 2016, which included general recommendations for transition to an adult service. Yet, there is limited research on transition specifically for those with ADHD. This review aims to systematically identify, review and compare guidelines, specifically focussed on transition for young adults with ADHD within England. Methods: Following the general principles for systematic reviewing as published by the University of York, 10 electronic databases were searched. Further documents were identified through searches of grey literature and additional sources. Results: Sixteen documents were included. Results indicate very limited publically accessible guidelines in England for transition of young people with ADHD. Nearly all identified documents based their recommendations for transition on the existing NICE guidelines. Neurodevelopmental conditions such as ADHD are often encompassed within one overarching health policy rather than an individual policy for each condition. Conclusions: Guidelines should be available and accessible to the public in order to inform those experiencing transition; adjusting the guidelines to local service context could also be beneficial and would adhere to the NICE recommendations. Further review could examine transition guideline policies for mental health in general to help identify and improve current practice. [ABSTRACT FROM AUTHOR]

Aims: Pharmacogenomic testing has the potential to target medicines more effectively towards those who will benefit and avoid use in individuals at risk of harm. Health economies are actively considering how pharmacogenomic tests can be integrated into health care systems to improve use of medicines. However, one of the barriers to effective implementation is evaluation of the evidence including clinical usefulness, cost‐effectiveness, and operational requirements. We sought to develop a framework that could aid the implementation of pharmacogenomic testing. We take the view from the National Health Service (NHS) in England. Methods: We used a literature review using EMBASE and Medline databases to identify prospective studies of pharmacogenomic testing, focusing on clinical outcomes and implementation of pharmacogenomics. Using this search, we identified key themes relating to the implementation of pharmacogenomic tests. We used a clinical advisory group with expertise in pharmacology, pharmacogenomics, formulary evaluation, and policy implementation to review data from our literature review and the interpretation of these data. With the clinical advisory group, we prioritized themes and developed a framework to evaluate proposals to implement pharmacogenomics tests. Results: Themes that emerged from review of the literature and subsequent discussion were distilled into a 10‐point checklist that is proposed as a tool to aid evidence‐based implementation of pharmacogenomic testing into routine clinical care within the NHS. Conclusion: Our 10‐point checklist outlines a standardized approach that could be used to evaluate proposals to implement pharmacogenomic tests. We propose a national approach, taking the view of the NHS in England. Using this approach could centralize commissioning of appropriate pharmacogenomic tests, reduce inequity and duplication using regional approaches, and provide a robust and evidence‐based framework for adoption. Such an approach could also be applied to other health systems. [ABSTRACT FROM AUTHOR]

Low‐intensity interventions for common mental disorders (CMD) address issues such as clinician shortages and barriers to accessing care. However, there is a lack of research into their comparative effectiveness in routine care. We aimed to compare treatment effects of three such interventions, utilizing four years' worth of routine clinical data. Users completing a course of guided self‐help bibliotherapy (GSH), internet‐delivered cognitive behavioural therapy (iCBT) or psychoeducational group therapy (PGT) from a stepped‐care service within the NHS in England were included. Propensity score models (stratification and weighting) were used to control for allocation bias and determine average treatment effect (ATE) between the interventions. 21,215 users comprised the study sample (GSH = 12,896, iCBT = 6862, PGT = 1457). Adherence‐to‐treatment rates were higher in iCBT. All interventions showed significant improvements in depression (PHQ‐9), anxiety (GAD‐7) and functioning (WSAS) scores, with largest effect sizes for iCBT. Both propensity score models showed a significant ATE in favour of iCBT versus GSH and PGT, and in favour of GSH versus PGT. Discernible differences in effectiveness were seen for iCBT in comparison with GSH and PGT. Given variance in delivery mode and human resources between different low‐intensity interventions, building on these findings would be valuable for future service provision and policy decision making. [ABSTRACT FROM AUTHOR]

Link worker social prescribing has become a prominent part of NHS England's personalisation agenda. However, approaches to social prescribing vary, with multiple discourses emerging about the potential of social prescribing and different interpretations of personalisation. The transformational promise of social prescribing is the subject of ongoing debate, whilst the factors that shape the nature of front‐line link working practices remain unclear. Based on 11 months of in‐depth ethnographic research with link workers delivering social prescribing, we show how link workers' practices were shaped by the context of the intervention and how individual link workers navigated varied understandings of social prescribing. Following the work of Mol, we show how link workers drew differentially on the interacting logics of choice and care and trace a multiplicity in front‐line link working practices within a single intervention. However, over time, it appeared that a logic of choice was becoming increasingly dominant, making it harder to deliver practices that aligned with a logic of care. We conclude that interpreting personalisation through a logic of choice could potentially undermine link working practices that privilege care whilst obscuring the need for wider investment in health care systems and the social determinants of health. [ABSTRACT FROM AUTHOR]

Background: The inverse-care law suggests that fewer healthcare resources are available in deprived areas where health needs are greatest. Aims: To examine the provision of paediatric speech and language services across London boroughs and to relate provision to the level of deprivation of the boroughs. Methods & Procedures: Information on the employment of paediatric speech and language therapists was obtained from London boroughs by freedom-of-information requests. The relationship between the number of therapists and the index of multiple deprivation for the borough was examined. Outcomes & Results: Twenty-nine of 32 boroughs responded. A positive relationship between provision and need was obtained, suggesting that the inverse-care law does not apply. However, large inequalities of provision were found particularly among the more socially deprived boroughs. In some instances boroughs had five times as many therapists per child as other boroughs. Conclusions & Implications: The data reveal that large differences in speech and language therapy provision exist across boroughs. The reasons for these inequalities are unclear, but the lack of comparative information across boroughs is likely to be unhelpful in planning equitable services. The use of freedom of information in assessing health inequalities is stressed and its future availability is desirable. [ABSTRACT FROM AUTHOR]

Background: Global initiatives that promote public health responses to dementia have resulted in numerous countries developing new national policies. Current policy guidelines in England, for example, recommend that people diagnosed with mild-to-moderate dementia receive information and psychosocial interventions to improve their ability to 'live well'. However, it remains unclear to what extent these recommendations are being achieved.Methods: Self-reported information from 1537 people living with dementia and informant-reported information from 1277 carers of people living with dementia was used to quantify receipt of community-based dementia support services, including health and social care services provided by statutory or voluntary-sector organisations, in Britain from 2014 to 2016. Demographic factors associated with differences in receipt of support services were also investigated to identify particularly vulnerable groups of people living with dementia.Results: Both self- and informant reports suggested that approximately 50% of people living with dementia received support services for dementia. Receipt of support services was lower among people living with dementia who are older, female, and have fewer educational qualifications. Receipt of support services also differed according to diagnosis and carer status, but was unrelated to marital status.Conclusions: Limited receipt of dementia support services among people living with dementia in Britain provides a baseline to assess the efficacy of current policy guidelines regarding provision of information and support. Targeted efforts to facilitate receipt of support services among the particularly vulnerable groups identified in the current study could improve the efficacy of dementia support services both in Britain and internationally, and should inform policy development. [ABSTRACT FROM AUTHOR]

The COVID‐19 pandemic presents unprecedented challenges to health care services across the world. When the pandemic first emerged in early 2020, health care services were forced to adapt to the new climate created by the pandemic. Here, the authors describe a case series of patients admitted to an older adult psychiatric unit when the pandemic struck, with themed discussions pertinent to the cases and an exploration of how staff adapted to this new and unfamiliar environment. [ABSTRACT FROM AUTHOR]

Background: NHS case note data are a potential source of practice-based evidence which could be used to investigate the effectiveness of different interventions for individuals with a range of speech, language and communication needs. Consistency in pre- and post-intervention data as well as the collection of relevant variables would need to be demonstrated as a precursor to adopting this approach in future investigations of speech and language therapy intervention. Aims: To explore whether routine clinical data collection for children with speech sound disorder (SSD) could be a potential source for examining the effectiveness of intervention(s). Methods & Procedures:We examined case notes from three UK NHS services, reviewing 174 sets of case notes and 234 blocks of therapy provided for school-age children with SSD. Main contribution: We found there was significant variation in pre- and postintervention data and variables collected by the services. The assessment data available in the case notes across all sites were insufficient to be used to compare the effectiveness of different interventions. Specific issues included lack of consistent reporting of pre- and post-intervention data, and use of a variety of both formal and informal assessment tools. Conclusions & Implications: The case notes reviewed were from three sites and may not represent wider clinical practice, nevertheless the findings suggest the sample explored indicates the need for more consistent and contemporaneous collection of data for children with SSD to facilitate the investigation of different interventions in practice. Researchers should work with the clinical community to determine a minimal dataset that includes a core outcome set and potential variables. This should be feasible to collect in clinical practice and provide a dataset for future investigations of clinically relevant research questions. This would provide an invaluable resource to the clinical academic and research communities enabling research questions to be addressed that have the potential to lead to improved outcomes and more cost-effective services. [ABSTRACT FROM AUTHOR]

Background: Studies have identified young adults as more likely to use emergency departments for 'clinically unnecessary' problems, with limited similar evidence for emergency ambulance use. Media portrayals depict young adults as motivated by 'convenience', but little research has explored the reasons for their help‐seeking behaviour. Methods: Qualitative interviews with 16 young adults (18‐30) considered by clinicians to have made unnecessary use of emergency ambulance, emergency department or an urgent GP appointment. Data analysis was informed by interpretive phenomenological analysis. Findings: A number of interrelated factors contributed to participants' decisions. They were anxious about the seriousness of their symptoms, sometimes exacerbated by reduced coping capacity due to poor mental health or life stresses. They looked to others to facilitate their decision making, who sometimes encouraged urgent contact. They wanted to avoid impact on existing day‐to‐day commitments including work or study. They had strong views about different health services, sometimes based on frustration with lack of resolution of on‐going health problems. Convenience was not identified as a significant factor, although some actions could be interpreted in this light if the context was not considered. Conclusions: Young adults make 'clinically unnecessary' use of urgent and emergency care for more than convenience. Their decisions need to be understood in relation to the complexity of their experience, including lack of confidence in making health‐related decisions, lowered coping capacity and concern to maintain normal daily life. [ABSTRACT FROM AUTHOR]

Based on a three-year ethnographic study of four UK National Health Service (NHS) organizations, we explore the everyday cultural experience of managing clinical and administrative workforces. Although NHS organizations claim to function as enlightened HRM employers, we argue that the inflexible application of metrics-based target systems to clinical and administrative tasks, including HRM operations, can result in dysfunctional outcomes for patient care and workforce morale. Reminiscent of the recent Mid Staffordshire health care scandal, the priorities attached to NHS personnel meeting the demands of performance management systems can prove incompatible with them also meeting the fundamental 'human' needs of patients. The everyday experience of health care organization becomes one of employees reconciling competing logics of business efficiency and integrity of care. Trapped metaphorically between shrinking resources and expanding targets, the inclination-on the frontline and at mid-management level-is to extend the integrity of care, although this is sometimes impossible and can prove problematic in terms of system accountability. In response to such organizational tensions the behavior of many frontline and mid-management staffs ultimately reflects a form of 'street-level bureaucracy'-a situation in which traditional professional norms are reasserted informally in ways that often transgress prescribed performance systems. © 2015 Wiley Periodicals, Inc. [ABSTRACT FROM AUTHOR]

Objective: Improving Access to Psychological Therapies (IAPT) services in England have established a long‐term condition (LTC) pathway in recent years, meaning that LTC therapies are now delivered via varied modes and by professionals with varied experiences. To gain insight into how this new pathway is functioning in practice, this study aimed to explore therapists' perceptions of barriers and facilitators to uptake and engagement with therapy in LTCs. Design: A qualitative design was employed using semi‐structured interviews. Methods: Fifteen therapists were recruited from IAPT and physical health care settings. Interviews were first analysed using inductive thematic analysis. A deductive approach was then taken to map themes onto Normalisation Process Theory constructs (coherence, cognitive participation, collective action, reflective monitoring) to guide steps towards improving implementation. Results: Four key themes highlighted patient, therapist, and service‐level factors related to uptake and engagement: Working flexibly with barriers within the National Health Service context; Acceptability of 'embedded' versus 'separate' psychological care; Confidence in working with people with LTCs; and Navigating implementation of online therapies. Therapists recognized the need for tailored LTC therapies, though opinions about online therapies varied. Therapists expressed commitment to flexibly adapting their practice to suit patient needs, but felt their flexibility was limited by system and service constraints. Conclusion: Barriers to uptake and engagement need to be addressed to optimize LTC pathways. Findings demonstrated the importance of offering flexible, tailored therapy to people with LTCs, and equipping staff and services with adequate training and resources to improve functioning of LTC pathways in practice. [ABSTRACT FROM AUTHOR]

Objectives: We provide the first estimate of HIV prevalence among trans and gender‐diverse people living in England and compare outcomes of people living with HIV according to gender identity. Methods: We analysed a comprehensive national HIV cohort and a nationally representative self‐reported survey of people accessing HIV care in England (Positive Voices). Gender identity was recorded using a two‐step question co‐designed with community members and civil society. Responses were validated by clinic follow‐up and/or self‐report. Population estimates were obtained from national government offices. Results: In 2017, HIV prevalence among trans and gender‐diverse people was estimated at 0.46–4.78 per 1000, compared with 1.7 (95% credible interval: 1.6–1.7) in the general population. Of 94 885 people living with diagnosed HIV in England, 178 (0.19%) identified as trans or gender‐diverse. Compared with cisgender people, trans and gender‐diverse people were more likely to be London residents (57% vs. 43%), younger (median age 42 vs. 46 years), of white ethnicity (61% vs. 52%), under psychiatric care (11% vs. 4%), to report problems with self‐care (37% vs. 13%), and to have been refused or delayed healthcare (23% vs. 11%). Antiretroviral uptake and viral suppression were high in both groups. Conclusions: HIV prevalence among trans and gender‐diverse people living in England is relatively low compared with international estimates. Furthermore, no inequalities were observed with regard to HIV care. Nevertheless, trans and gender‐diverse people with HIV report poorer mental health and higher levels of discrimination compared with cisgender people. [ABSTRACT FROM AUTHOR]

Background: Sustaining high‐quality, critical care practice is challenging because of current limits to financial, environmental, and social resources. The National Health Service in England intends to be more sustainable, although there is minimal research into what sustainability means to people working in critical care, and a theoretical framework is lacking that explains the social processes influencing sustainability in critical care. Aims and objectives: This study aimed to explain the concept of sustainability from the perspective of practitioners caring for critically ill patients. Design The qualitative research followed a Charmazian constructivist grounded theory approach, including concurrent data collection and interpretation through constant comparison analysis. Methods: In‐depth interviews were conducted online or by telephone with 11 health care professionals working in critical care in the South of England (8 nurses, 2 physiotherapists, and 1 technician). Schatzman's dimensional analysis and Straussian grounded theory techniques supplemented the data analysis. Results: Sustainability was defined as maintaining financial, environmental, and social resources throughout the micro, meso, and macro systems of critical care practice. The most pertinent social process enabling sustainability of critical care was satisficing (satisfaction of achieving a goal of quality care while sufficing within the limits of available resources). Increased satisficing enabled practitioners to fulfil their sense of normative, responsible, sustainable, and flourishing practice. Satisficing was bounded by the cognitive and environmental influences on decisions and an ethical imperative to ensure resources were used wisely through stewarding. Conclusions: An explanation of the concept of sustainability and significant social processes, in relation to critical care, are presented in a theoretical framework, with implications for how financial, environmental, and social resources for critical care practice can be maintained. Relevance to clinical practice: This theory offers clinicians, managers, educators, and researchers a definition of sustainability in critical care practice and provides a structured approach to addressing critical care sustainability issues. [ABSTRACT FROM AUTHOR]

Background: It is widely acknowledged that inadequate handovers are associated with putting patients at risk in clinical settings; however, handover practices have received little attention in other 24‐hr settings such as long‐stay residential care facilities. Aim: This study aimed to explore the perceived purpose and organisational processes involved in the handover of information between shifts of staff caring for older residents in five care homes in England. Methods: The study took an ethnographic approach to fieldwork, undertaken between February and June 2016. It consisted of observations of handovers (n = 12) and interviews with managers, Registered Nurses (RNs) and care assistants (n = 27) working day and night shifts. Interview transcripts and observation notes were analysed within NVivo using a matrix approach. Results: Handovers were highly variable in all five care homes in relation to their timings, locations, content and participants. Managers and RNs highlighted handovers as an opportunity for risk assurance, supervision, team building, staff education and monitoring of residents' clinical status. In comparison, care assistants considered the purpose of handovers to be prepared for the responsibilities of working a shift. The discussion addresses implications of these findings, particularly consideration of how best use can be made of RN skills and knowledge in handovers. Conclusion: Research is needed to identify whether care home resident safety can be linked to handover practices and how the presence of RNs in handovers in care homes affects this. Implications for practice: Care home managers, RNs and care workers may find this research useful in practice when considering how best to organise handovers and deploy staff in care homes for older people. [ABSTRACT FROM AUTHOR]

Aim: Clinicians mediate access to new technologies. Consequently, their views on specific devices may influence user access to diabetes technology in mainstream care. As yet, little is known about clinicians' views about closed‐loop systems. This qualitative study explored clinicians' views on the likely impacts of future closed‐loop systems in mainstream diabetes care in England. Methods: We conducted interviews with 36 clinicians from a range of professional backgrounds in five hospital outpatient clinics (two adult, two pregnancy, one paediatric) in England to explore possible consequences of closed‐loop systems for users and clinicians. Data analysis utilized a framework approach. Results: Clinicians reported a range of expected benefits for future users, including improved glucose control and quality of life. Expected burdens included continued need for manual input and the risk of losing basic self‐care skills. In terms of future clinical workloads, three clinicians emphasized only positive impacts, seven emphasized both positive and negative impacts, and 17 mentioned only negative impacts. Our most prominent finding, expressed by 24 clinicians, was that closed‐loop systems would generate initial challenges due to the need for staff training, user education and support, and new analytical capacities, alongside existing intra‐clinic variations in technological experience. Conclusions: Clinicians recognize the value of closed‐loop systems in terms of health benefits, but also identify a range of concerns for both users and healthcare staff, which could impact negatively on user access. Future implementation efforts should address these concerns by providing training and support for healthcare teams, taking varied technological expertise into account. What's new?: Clinician attitudes towards new technologies influence outcomes in mainstream care. Little is known about clinician views about the likely impacts of future closed‐loop systems in diabetes care.Alongside benefits and burdens for users, clinicians expect closed‐loop systems to generate health service challenges due to heightened needs for training, user support and analytical capacities.Clinicians identify a range of concerns for both users and staff, which could impact negatively on user access. Future implementation efforts should address these concerns by providing training and support for healthcare teams. [ABSTRACT FROM AUTHOR]

Clinical managers play a crucial role in securing the implementation and sustainability of information technology (IT) innovation in health care. Yet, not all clinical managers are willing and able to support IT innovation, particularly when the institutional logics of an IT innovation challenge their professional practice. We investigate how clinical managers use their hybrid identities to reconcile differences among competing institutional logics that affect IT innovation. Based on three examples of IT innovation (telehealth for obstructive sleep apnoea, telehealth for heart failure, and electrocardiograms) in a health care organization in England, we identify three roles in IT innovation (innovation advocate, innovation broker, and innovation laggard) that clinical managers enacted in response to three degrees of conflict between institutional logics (no conflict, moderate conflict, and high conflict), respectively. We make the following contributions. First, we demonstrate how clinical managers' perception of their hybrid role in relation to their professional identity influences their response to the conflicting institutional demands of IT innovation. We conclude that clinical managers' fragmented identities can compromise their ability to effectively manage IT innovation in health care. Second, our findings raise implications for understanding the role of professionals' hybrid identities in the implementation of digital transformation at the intersection of multiple institutional logics. [ABSTRACT FROM AUTHOR]

Objective: To compare interactive fixed effects (IFE) and generalized synthetic control (GSC) methods to methods prevalent in health policy evaluation and re-evaluate the impact of the hip fracture best practice tariffs introduced for hospitals in England in 2010.Data Sources: Simulations and Hospital Episode Statistics.Study Design: Best practice tariffs aimed to incentivize providers to deliver care in line with guidelines. Under the scheme, 62 providers received an additional payment for each hip fracture admission, while 49 providers did not. We estimate the impact using difference-in-differences (DiD), synthetic control (SC), IFE, and GSC methods. We contrast the estimation methods' performance in a Monte Carlo simulation study.Principal Findings: Unlike DiD, SC, and IFE methods, the GSC method provided reliable estimates across a range of simulation scenarios and was preferred for this case study. The introduction of best practice tariffs led to a 5.9 (confidence interval: 2.0 to 9.9) percentage point increase in the proportion of patients having surgery within 48 hours and a statistically insignificant 0.6 (confidence interval: -1.4 to 0.4) percentage point reduction in 30-day mortality.Conclusions: The GSC approach is an attractive method for health policy evaluation. We cannot be confident that best practice tariffs were effective. [ABSTRACT FROM AUTHOR]

Objectives: This study measures the average per person and annual total costs of dementia in England in 2015.Methods/design: Up-to-date data for England were drawn from multiple sources to identify prevalence of dementia by severity, patterns of health and social care service utilisation and their unit costs, levels of unpaid care and its economic impacts, and other costs of dementia. These data were used in a refined macrosimulation model to estimate annual per-person and aggregate costs of dementia.Results: There are around 690 000 people with dementia in England, of whom 565 000 receive unpaid care or community care or live in a care home. Total annual cost of dementia in England is estimated to be £24.2 billion in 2015, of which 42% (£10.1 billion) is attributable to unpaid care. Social care costs (£10.2 billion) are three times larger than health care costs (£3.8 billion). £6.2 billion of the total social care costs are met by users themselves and their families, with £4.0 billion (39.4%) funded by government. Total annual costs of mild, moderate, and severe dementia are £3.2 billion, £6.9 billion, and £14.1 billion, respectively. Average costs of mild, moderate, and severe dementia are £24 400, £27 450, and £46 050, respectively, per person per year.Conclusions: Dementia has huge economic impacts on people living with the illness, their carers, and society as a whole. Better support for people with dementia and their carers, as well as fair and efficient financing of social care services, are essential to address the current and future challenges of dementia. [ABSTRACT FROM AUTHOR]

Background and Aims: Previous studies have shown low rates of diagnosis and treatment of hepatitis C virus (HCV) infection in people who inject drugs (PWID). Our aims were to test the effect of a complex intervention [Hepatitis C Awareness Through to Treatment (HepCATT)] in drug and alcohol clinics—primarily, on engagement of HCV‐positive PWID with therapy and, secondarily, on testing for HCV, referral to hepatology services and start of HCV treatment. Design and setting: A non‐randomized pilot study in three specialist addiction clinics in England comparing an intervention year (starting between September 2015 and February 2016) with a baseline year (2014), together with three control clinics. Participants: Analysis included all attendees at the intervention and control specialist addiction clinics identified as PWID. Intervention: The intervention comprised the placement of a half‐time facilitator in each clinic for 12 months with the brief to increase diagnosis of HCV infection within clients at those services and the engagement of diagnosed individuals with an appropriate care pathway. The facilitator undertook various activities, which could include training of key workers, direct interaction with clients, streamlining and support for hepatology appointments and introduction of dried blood‐spot testing. Measurements For each clinic and period, we obtained the total number of clients and, as relevant, their status as PWID, tested for HCV, known HCV‐positive, engaged with HCV therapy or treated. Findings Compared with baseline, there was strong evidence that engagement with HCV therapy in the intervention year increased (P < 0.001) more in the HepCATT centres than controls, up +31 percentage points [95% confidence interval (CI) = 19–43] versus −12 (CI = –31 to +6) and odds ratio (OR) = 9.99 (CI = 4.42–22.6) versus 0.35 (CI = 0.08–1.56). HepCATT centres also had greater increases in HCV testing (OR = 3.06 versus 0.78, P < 0.001), referral to hepatology (OR = 9.60 versus 0.56, P < 0.001) and treatment initiation (OR = 9.5 versus 0.74, P < 0.001). Conclusions: Introducing a half‐time facilitator into drug and alcohol clinics in England increased engagement of HCV‐positive people who inject drugs with hepatitis C virus care pathways, with increased uptake also of testing, referral to hepatology and initiation of treatment. [ABSTRACT FROM AUTHOR]

In England, Education, Health and Care (EHC) plans are used to identify children's educational, health and social needs, and describe the additional support required to meet those needs. Replacing statements of special educational needs (SEN), the intent was to improve the process of accessing SEN provision through the greater participation of families in decision‐making processes, and increased collaboration between education, health and care sectors. Special educational needs co‐ordinators (SENCOs) play a pivotal role in the implementation of education reforms, and are often responsible for the application of EHC plans. As such, gaining insight into their experiences of initiating applications and transferring statements of SEN into EHC plans can help identify whether these documents are meeting their objectives as person‐led, wraparound care plans. This qualitative study used semi‐structured interviews to explore 16 SENCOs' perspectives on the effectiveness of the process of applying for and transferring EHC plans. Thematic analysis of responses elicited three key themes: the perceived role of the SENCO in the EHC plan process; procedural challenges and changes – an evolving process; and difficulties in accessing an EHC plan for children with social, emotional and mental health needs. [ABSTRACT FROM AUTHOR]

Objective: To examine the influence of dimensions of service quality on patient experience of primary care.Data Sources/study Setting: Data from the national GP Patient Survey in England 2014/15, with responses from 858,351 patients registered at 7,918 practices.Study Design: Expert panel and principal component analysis helped identify relevant dimensions of service quality. Regression was then used to examine the relationships between these dimensions and reported patient experience.Data Collection/extraction Methods: Aggregated scores for each practice were used, comprising the proportion of positive responses to each element of the study.Principal Findings: Of eight service quality dimensions identified, six have statistically significant impacts on patient experience but only two have large effects. Patient experience is highly influenced by practice responsiveness and the interactions with the physician. Other dimensions have small or even slightly negative influence. Service quality provided by nurses has negligible effect on patient experience.Conclusions: To improve patient experience in primary health care, efforts should focus on practice responsiveness and interactions with the physician. Other areas have little influence over patient experience. This suggests a gap in patients' perspectives on health care, which has policy implications for patient education. [ABSTRACT FROM AUTHOR]

Abstract: Aim: We hypothesized that participant well‐being and satisfaction with services would be positively associated with a satisfactory clinical course during transition from child to adult health care. Methods: Some 150 young people with Type 1 diabetes mellitus from five diabetes units in England were recruited to a longitudinal study of transition. Each young person was visited at home four times by a research assistant; each visit was 1 year apart. Satisfaction with services (Mind the Gap; MTG) and mental well‐being (Warwick–Edinburgh Mental Well‐being Scale; WEMWBS) were captured. Change in HbA1c, episodes of ketoacidosis, clinic and retinal screening attendance were used to assess clinical course. In total, 108 of 150 (72%) young people had sufficient data for analysis at visit 4. Results: Mean age at entry was 16 years. By visit 4, 81.5% had left paediatric healthcare services. Median HbA1c increased significantly (P = 0.01) from 69 mmol/mol (8.5%) at baseline to 75 mmol/mol (9.0%) at visit 4. WEMWBS scores were comparable with those in the general population at baseline and were stable over the study period. MTG scores were also stable. By visit 4, some 32 individuals had a ‘satisfactory’ and 76 a ‘suboptimal’ clinical course. There were no significant differences in average WEMWBS and MTG scores between the clinical course groups (P = 0.96, 0.52 respectively); nor was there a significant difference in transfer status between the clinical course groups. Conclusions: The well‐being of young people with diabetes and their satisfaction with transition services are not closely related to their clinical course. Investigating whether innovative psycho‐educational interventions can improve the clinical course is a research priority. [ABSTRACT FROM AUTHOR]

Objective: To test the impact of obesity on health and health care use in children, by the use of various methods to account for reverse causality and omitted variables.Data Sources/study Setting: Fifteen rounds of the Health Survey for England (1998-2013), which is representative of children and adolescents in England.Study Design: We use three methods to account for reverse causality and omitted variables in the relationship between BMI and health/health service use: regression with individual, parent, and household control variables; sibling fixed effects; and instrumental variables based on genetic variation in weight.Data Collection/extraction Methods: We include all children and adolescents aged 4-18 years old.Principal Findings: We find that obesity has a statistically significant and negative impact on self-rated health and a positive impact on health service use in girls, boys, younger children (aged 4-12), and adolescents (aged 13-18). The findings are comparable in each model in both boys and girls.Conclusions: Using econometric methods, we have mitigated several confounding factors affecting the impact of obesity in childhood on health and health service use. Our findings suggest that obesity has severe consequences for health and health service use even among children. [ABSTRACT FROM AUTHOR]

Abstract: This article examines the articulation and enactment of racialised classifications in clinical practice guidelines and in accounts of clinical practice. It contributes to debates about racialisation in medicine and its consequences. The research centred on the case study of prescribing guidelines for hypertension in England and Wales, drawing on documentary sources and semi‐structured expert interviews. We found that conceptual and socio‐political uncertainties existed about how to interpret the designation ‘Black patients’ and about the practices for identifying patients’ race/ethnicity. To ‘close’ uncertainties, and thus produce the guidelines and treat patients, respondents drew authority from disparate elements of the ‘topologies of race’. This has implications for understanding processes of racialisation and for the future use of racialised clinical practice guidelines. We argue that clinical practice guidelines play a ‘nodal’ role in racialisation by forming an authoritative material connection that creates a path for translating racialised research into racialised healthcare practice, and that they carry with them implicit conceptual and socio‐political uncertainties that are liable to create inconsistencies in healthcare practice. [ABSTRACT FROM AUTHOR]

The National Health Service (NHS) is known to be a challenging place to work, with financial and performance targets placing increasing pressure on the organisation. This study aimed to investigate whether these pressures and threats might be detrimental to the quality of care and the compassion that the NHS strives to deliver. Quantitative data were collected via self‐report questionnaires from healthcare professionals across 3 NHS trusts in England in order to measure Self‐compassion; Compassion for Others; Perceived Organisational Threat; and Perceived Organisational Compassion. Qualitative data were also collected to explore the threats considered most pertinent to healthcare professionals at present. The key findings suggest that an increase in Perceived Organisational Threat may reduce an individual's ability to give compassion to others; however, Self‐compassion and Perceived Organisational Compassion were better predictors of Compassion for Others. This highlights the need to consider compassion at a systemic level, providing interventions and training not only to cultivate self‐compassion in healthcare professionals, but also to encourage compassion across the NHS more generally. In promoting self‐compassion and increasing the level of compassion that employees feel they receive at work, healthcare professionals may be better able to maintain or improve their level of compassion for service users and colleagues. [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]

Abstract: Patient and public involvement in health research and care has been repeatedly theorised using the metaphor of spaces, knowledge spaces and participatory citizenship spaces. Drawing on data from a three year qualitative study of people involved in health research with organisations across England, this article explores where these spaces fit in a wider social, political and historical landscape. It outlines a theme recurring frequently in the study data: a unified public/patient/service‐user perspective in opposition to a professional/clinical/academic view. This is discussed in relation to Habermas's division between the lifeworld and system. Patient and public involvement is mapped as spaces between these spheres, therefore between the social norms pertaining to them. In this way, involvement spaces are seen as liminal, in‐between or threshold spaces; this concept provides us with new insights on both the opportunities and the conflicts that are integral in the ambiguous, complex interactions which take place in these spaces. [ABSTRACT FROM AUTHOR]

Objectives: To examine the cost of care for people with dementia in institutional care settings, to understand the major cost drivers and to highlight opportunities for service development.Methods: Data on 277 residents with dementia in 16 UK residential or nursing homes were collected. We estimated care and support costs and fitted models to the data. Sensitivity analyses were also conducted.Results: Care home residents cost £792 weekly: 95% of the costs accounted for by direct fees. Hospital contacts contributed the largest proportion of the additional costs. Having an established diagnosis of dementia (b = 0.070; p < 0.05) was associated with higher costs. No association was found between cost and needs (b = -0.002; p = 0.818).Conclusion: The absence of an association between cost and needs emphasizes the importance of a more needs-based costing system which could result in clinical and economic advantages. Copyright © 2016 John Wiley & Sons, Ltd. [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]

For older people with multiple chronic co-morbidities, strategies to coordinate care depend heavily on information exchange. We analyse the information-sharing difficulties arising from differences between patients' oral narratives and medical sense-making; and whether a modified form of 'narrative medicine' might mitigate them. We systematically compared 66 general practice patients' own narratives of their health problems and care with the contents of their clinical records. Data were collected in England during 2012-13. Patients' narratives differed from the accounts in their medical record, especially the summary, regarding mobility, falls, mental health, physical frailty and its consequences for accessing care. Parts of patients' viewpoints were never formally encoded, parts were lost when clinicians de-coded it, parts supplemented, and sometimes the whole narrative was re-framed. These discrepancies appeared to restrict the patient record's utility even for GPs for the purposes of risk stratification, case management, knowing what other care-givers were doing, and coordinating care. The findings suggest combining the encoding/decoding theory of communication with inter-subjectivity and intentionality theories as sequential, complementary elements of an explanation of how patients communicate with clinicians. A revised form of narrative medicine might mitigate the discursive gap and its consequences for care coordination. [ABSTRACT FROM AUTHOR]

Objectives To identify factors associated with end-of-life (EoL) transition from usual place of care to the hospital as place of death for people aged 75 and older. Design Population-based mortality follow-back survey. Setting Deaths over 6 months in 2012 in two unitary authorities in England covering 800 square miles with more than 1 million residents. Participants A random sample of people aged 75 and older who died in a care home or hospital and all those who died at home or in a hospice unit (N = 882). Cases were identified from death registrations. The person who registered the death (a relative for 98.9%) completed the survey. Measurements The main outcome was EoL transition to the hospital as place of death versus no EoL transition to the hospital. Multivariable modified Poisson regression was used to examine factors (illness, demographic, environmental) related to EoL transition to the hospital. Results Four hundred forty-three (50.2%) individuals responded, describing the care of the people who died. Most died from nonmalignant conditions (76.3%) at a mean age of 87.4 ± 6.4. One hundred forty-six (32.3%) transitioned to the hospital and died there. Transition was more likely for individuals with respiratory disease than for those with cancer (prevalence ratio ( PR) = 2.07, 95% confidence interval ( CI) = 1.42-3.01) and for people with severe breathlessness ( PR = 1.96, 95% CI = 1.12-3.43). Transition was less likely if EoL preferences had been discussed with a healthcare professional ( PR = 0.60, 95% CI = 0.42-0.88) and when there was a key healthcare professional ( PR = 0.74, 95% CI = 0.58-0.95). Conclusion To reduce EoL transition to the hospital for older people, there needs to be improved management of breathlessness in the community and better access to a key healthcare professional skilled in coordinating care, communication, facilitating complex discussions, and in planning for future care. [ABSTRACT FROM AUTHOR]

Objectives: A prospective survey was undertaken of blood products transferred with patients during inter-hospital transfers by ambulance in the East of England (population six million) Background: There is little published information on the number and fate of blood products transferred with patients during inter-hospital transfers, although there are concerns about quality assurance and traceability of these blood products. Recent national guidance has been issued, but adherence to this guidance is uncertain. Methods: A 6-month survey was undertaken of all inter-hospital transfers of blood products with patients within the East of England using routine data captured by established transfer of blood documentation. Results: There were 45 transfer episodes of which 44 involved the transfer of red blood cells. In total, 148 units of red blood cells were transferred, of which 6% were transfused en route, 3% transfused at the destination hospital, 35% were wasted and for 18% the fate could not be established. The remainder were transferred into the blood stock of the destination hospital. Conclusion: The small proportion of blood products that were transfused raises questions about the necessity of the transfer of blood products with some patients particularly considering the higher percentage of wasted or untraced products. When transfers occur, there should be better communication between hospital transfusion laboratories assisted by adherence to national and regionally agreed policies. [ABSTRACT FROM AUTHOR]

Aim To explore the provision and variations in care for children and young people with cerebral palsies ( CP) registered with the population-based North of England Collaborative Cerebral Palsy Survey ( NECCPS). Method This is a retrospective multicentre record audit of 389 children with CP (220 males, 148 females, 21 no data; median age at time of audit 12y 3mo), born between 1995 and 2002. Data were collected on cranial magnetic resonance imaging ( MRI), hip and spine surveillance and management, and pain presence and management. Variations over time and between the districts in the north of England (Northumberland, North and West Cumbria, North and South Tyneside, Newcastle-upon-Tyne, Gateshead, Sunderland, Durham, Darlington, Bishop Auckland, Hartlepool, Stockton-on-Tees, Middlesbrough, Redcar, and Cleveland), and by socio-economic status ( SES) (estimated from the Index of Multiple Deprivation [ IMD] 2004) were estimated by generalized estimating equations. Results There was significant variation between districts in access to MRI ( p<0.001), orthopaedic surgeons ( p=0.005), recording state of spine ( p<0.001), and discussions about pain ( p<0.001). Fifty-seven per cent (95% CI 52-62) had evidence of a reported MRI brain scan, the proportion of which increased over time ( p<0.001). Sixty-seven per cent (95% CI 62-71) had a discussion about pain recorded. Of those in pain, 87% (95% CI 80-93) had a pain management plan. The proportion with documented discussion about pain increased with increasing SES ( p=0.04). Interpretation The provision of care for children with CP in the north of England varies between districts. Internationally agreed, evidence-based standards are urgently needed to ensure more equitable health care and improved outcomes for all. [ABSTRACT FROM AUTHOR]