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Accessibility Summary: What is known on the subject?: A significant number of people with mental health diagnoses have also experienced some form of trauma.In 2008, it was recommended that MHTs in England provide training to MHPs to support them in how to ask their service users about trauma and abuse.It has been identified that staff are not consistently enquiring about trauma and abuse in mental health services. What the paper adds to existing knowledge?: A description of how many MHTs in England are providing training for staff to ensure that they enquire about trauma and abuse.The current gaps in the resources available for mental health practitioners and staff. What are the implications for practice?: Much more work and development of trauma‐informed care and accessibility of training is needed for MHPs working in MHTs.Most MHTs still need to take the first step of implementing training in trauma‐informed care. This should involve ways to ask about trauma and abuse and advice on how to respond to any disclosures made. Introduction: Trauma, abuse and adversities are extremely prevalent for those who access secondary mental health services. Health policy guidance recommends that mental health professionals (MHPs) should routinely enquire about trauma and abuse. Staff training is required to adopt trauma‐informed approaches, as research has identified a clear gap in practice. This study provides a baseline measure of the current provision of trauma‐informed training in English mental health trusts (MHTs). Question: What trauma‐informed training is currently available for MHPs in England? Method: A freedom of information request was submitted to 52 MHTs in England to explore the current training available for MHPs in trauma‐informed care, routine enquiry into abuse and responding to disclosures. Results: The results showed 70% of respondents reported no available training in trauma‐informed care. Discussion: Many MHTs in England do not provide any trauma‐informed training (despite existing recommendations from 2008). Does this contribute to the re‐traumatisation of patients? Implications for Practice: MHTs in England require a responsible and active approach to training MHPs in sensitive routine enquiry into trauma and abuse as a first step to becoming trauma responsive. [ABSTRACT FROM AUTHOR]

Since the outbreak of Covid-19 health communicators around the globe have had to reach, urge, and persuade individuals and communities to adopt appropriate health protective behaviors. They have used a mix of communication channels, including outdoor media and public signage which are the focus of this paper. Drawing on a comparative linguistic landscape analysis, this paper critically examined the amount, content, and prominence of Covid-19 signage in Hackney, a London borough severely hit by the first wave of the pandemic. Having analyzed 1288 signs collected between May and July 2020, we found significant differences in Covid-19 signage between deprived and less deprived areas. These differences (e.g., in messaging about staying at home) have created inequalities in access to Covid-19 related health information and guidance. We also explored the changes in Covid-19 signage over time and the tailoring of risk and health messages to minority communities. [ABSTRACT FROM AUTHOR]

Historically, information such as protocols and treatment pathways from specialist teams were shared with ward staff in paper format which proved cumbersome and difficult to update. Improvements were made with the addition of an intranet site, where protocols could be stored and accessed by clinical staff, however it was recognised that navigating the intranet site was not always straightforward and took up precious nursing time. The tissue viability team at the Royal United Hospitals NHS Foundation Trust (RUH) considered how such information might be made more readily available to clinicians. Inspired by widespread increased use of QR codes in public places during the COVID-19 pandemic, the team produced a poster containing multiple QR codes, enabling clinical staff to have instant access to wound care protocols as soon as the information was needed. [ABSTRACT FROM AUTHOR]

Personal Assistants (PA) or client‐hired workers are directly employed by people needing care and support, often making use of government funding. In the context of Covid‐19, questions emerged about how this workforce is supported to practice safely. This paper reports PAs' understanding and views of infection control during the early months of the Covid‐19 pandemic in England. Telephone interviews were undertaken with 41 PAs between 16th April and 21st May 2020. PAs were recruited from a sample that had participated in a previous study in 2014–16. Interview questions focused on changes arising from the pandemic. Data were transcribed and analysed using Framework analysis. This paper focuses on PAs' perceptions of their role and responsibilities in preventing and managing infection. Arising themes were identified about barriers and facilitators affecting infection control in five areas: accessing information, social isolation, handwashing, hygiene, personal protective equipment and potential attitude to vaccines. Infection prevention and control are under‐researched in the home care sector generally and efforts are needed to develop knowledge of how to manage infection risks in home settings by non‐clinically trained staff such as PAs and how to engage home care users with these efforts, especially when they are the direct employers. [ABSTRACT FROM AUTHOR]

There is a statutory duty for all practitioners to record information in child protection work in England. Case recording is a daily task for practitioners, yet an under-researched area of practice. This continuing professional development (CPD) paper will consider the context in which case recording takes place and highlight messages from child protection reviews and enquiries before exploring learning from contemporary research. The complexities of case recording will be considered and how practitioners can reflect upon and improve their daily case recording skills. Practitioners are encouraged to keep the child's views and experiences central and consider the long-term impact of case recording on adults who have experienced abuse and neglect in childhood. Key Practitioner Messages • Case recording is a complex and nuanced task, often missing the multiple perspectives inherent in a child's narrative. • The views, experiences and identity of individual children and young people can be lost in case recording, especially for very young children, older children and those in sibling groups. • Case recording has a support function for care experienced adults to understand their childhood histories, aiding recovery from abuse and neglect. [ABSTRACT FROM AUTHOR]

Older people in England who pay for social care from their own funds ('self-funders') receive little help in seeking and arranging care compared to older people funded by their local council. This suggests an implicit assumption that people funded by local councils need help to manage their care whereas self-funders do not. This article reports findings from a scoping review of published evidence from England, Scotland and Wales on the skills that older people need, and the help they get, to seek, arrange or manage use of social care, and how this help affects outcomes. Searches undertaken in October 2018 resulted in the inclusion of thirty-six empirical papers and seven reviews. Thematic analysis identified the importance of everyday life and specific business skills, and personal attributes including objectivity when evaluating options. The review identified two significant gaps in the evidence: first, how help in seeking and arranging care compensated for lack of, or complemented existing, skills; and secondly, how outcomes for people receiving help in arranging care compared with those not receiving help. The article concludes that a tailored approach to supporting older people arrange and manage care, irrespective of funding, should be considered. [ABSTRACT FROM AUTHOR]

Technology within healthcare is a growing industry, and health professionals now use technology within their everyday working life. Within hospitals, it is the norm to see staff using handheld devices to record clinical observations and patient notes being typed into an electronic system. However, the use of technology within community settings is far behind that of hospital counterparts. It has been acknowledged that the use of technology in healthcare will improve efficiency and remove some of the bureaucracy within the NHS, and community areas are beginning to pilot different ways of implementing this. This article describes a pilot trial of using technology to aid mobile working in the author's trust and discusses how district nursing can embrace the use of paperlite culture to improve efficiency and record reliability. [ABSTRACT FROM AUTHOR]

We investigated the reasons why the transition from paper to electronically formatted records during patient handover between ambulance crews and emergency department staff in a North East England Emergency Department has not always been viewed positively. Interviews with seven paramedics and three emergency department staff were conducted in addition to observations of 74 ambulance staff during 37 handovers in the emergency department. In just over half of the handovers (20), paramedics found it necessary to provide written information to aid emergency department staff, in addition to that recorded electronically. There were a number of issues that impeded the ready utilisation of electronic records in this context. The major factors identified as contributing to this were the choice of system architecture, the design of user interfaces, and the procurement process used by the National Health Service. We have made some suggestions about how the system could evolve from one focused on providing management information to one that also supports operational needs. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To recognise some of the factors that can make it challenging for nurses to access training and maintain competence in using medical devices • To learn about development of an electronic medical device training passport that aims to better identify nurses' training needs • To understand the benefits of an electronic medical device training passport for nurses, nurse managers and clinical leaders Background: All nurses, particularly those working in critical care settings, are required to use medical devices when providing patient care. However, inconsistent practice and variations in documentation can make it challenging for nurses and nurse managers to identify what medical device training is required and when. Aim: To develop and evaluate the use of an electronic medical device training passport to identify the training needs of nurses in intensive care units (ICUs). Method: A pilot study was conducted in a multi-unit critical care department in London, England, to determine if the passport could make it easier to identify ICU nurses' medical device training needs compared with existing practice. Nine participants were first asked to identify their needs using existing spreadsheets or paper records, then asked to identify them using the passport. The participants were also interviewed to identify their training requirements before and after using the passport. The data were analysed quantitatively and qualitatively. Findings: The electronic passport significantly improved identification of medical device training needs compared with paperwork or spreadsheets for all device groups, except for medical devices used on high dependency units (P≤0.005). However, there may be issues related to nurses' behaviours and expectations, particularly that staff do not always recognise their need for training. Conclusion: The findings of this pilot study suggest that the use of an electronic medical device training passport has many benefits and could make it easier to identify ICU nurses' training needs in clinical practice. [ABSTRACT FROM AUTHOR]

Mothers often make key decisions regarding their children's health. They hold core beliefs and attitudes towards healthcare providers, relying on healthcare services to provide support, advice and reassurance. It is crucial that health providers form authentic relationships with families with young children, in order to effectively provide healthcare, support and information as needed. In this paper, we explore mothers' views on the accessibility and expertise of healthcare professionals caring for their child's health. A case study, using a geographic post code as the case boundary was used. Focus groups and semi‐structured interviews with mothers of children aged under five years old were conducted. Participants (n = 33) were recruited from local playgroups and six focus groups (19 participants) and 14 individual interviews were conducted. Qualitative data were analysed using thematic analysis. General Practice (including general practitioners [GPs] and practice nurses) was considered to be the preferred option when seeking timely healthcare advice and information. Participant mothers were open to accessing professional advice concerning their child's health, from a range of health professionals and understood the role and potential contribution of various health professionals. However, some factors, influenced mothers' decision‐making. These were captured in three themes: maternal perceptions of GPs as accessible experts; practice nurses as approachable and reassuring sources of advice; and difficulty in accessing health visiting services primarily due to service funding cuts. Further investment in primary care services, including expansion of the practice nurse role and an increase in health visiting service provision, may help to provide sufficient support for mothers seeking healthcare advice. In addition, healthcare service strategies, which engage with mothers and ensure nurses are recognised as knowledgeable, accessible, supportive and a suitable alternative to GPs, would be beneficial. [ABSTRACT FROM AUTHOR]

Purpose The provision of information and advice for older people arranging their own care is a policy objective. The purpose of this paper is to explore the range and scope of web-based information about care coordination activities for older people in the non-statutory sector in England.Design/methodology/approach Non-statutory organisations were identified through a structured internet search. Services were screened to identify those providing at least one care coordination activity. A postal survey of services was conducted in 2014 and results compared with the initial findings of the web search.Findings Almost 300 services were identified, most of which were provided by three organisations: Age UK; Alzheimer’s Society; and the British Red Cross. Brokerage was the most frequently reported care coordination activity; the majority of services focussed on help to stay at home; and carers and older people (including those with dementia) were the target groups most often identified. Comparison of the two information sources revealed a significant agreement between two care coordination’s activities: compiling support plans and monitoring and review.Research limitations/implications Findings are based on a purposive sample of organisations and therefore care must be exercised in generalising from them.Originality/value This study is one of the first to systematically explore the nature and extent of information about care coordination activities provided by the non-statutory sector in England. It was conducted when policy advocated both an increased role for the non-statutory sector and an increase in self-directed support. [ABSTRACT FROM AUTHOR]

This paper reports on a study of looked after children (LAC)'s involvement in physical activities including sport. The 2007 White Paper Care Matters: Time for Change suggested, inter alia, that councils provide free access to leisure centres for children in care. The study employed an emerging social science research approach, the use of requests under the 2000 Freedom of Information Act, to investigate the topic. Requests were made in writing in 2011 to all 152 Directors in England listed on the Association of Directors of Children's Services website and replies were received from 128. The findings indicate that there is differential provision in England according to where LAC live, with fewer than half of councils (48 per cent) currently providing free leisure passes. Most councils (73 per cent) do not collate aggregate data on LAC's involvement in physical activity, so are not able to judge whether the levels are comparable with that of the general child population. Recommendations are made for policy and practice and it is concluded that, as the use of Freedom of Information requests offers more advantages than limitations, it be considered suitable for use across a range of social work research. [ABSTRACT FROM PUBLISHER]

ABSTRACT As there are a number of high-profile public inquiries into child death tragedies, 'information sharing' has now become a moral and political imperative across England and Wales for improving the welfare and protection of children. This paper discusses multi-agency information practices, at the stage of referral, which were observed and documented in the day-to-day practice of child protection work. Drawing on transcribed, professional narrative accounts, a 'jigsaw' metaphor is used to describe the process of piecing information together to ascertain a 'full' picture of children and families lives. However, these accounts highlight that there is something of a mismatch between the jigsaw, as articulated in the conceptual abstract accounts, and jigsaw practices operating on the ground. It is argued that abstracting professional information practices from situated contexts creates impoverished understandings of these practices. Thus, reported findings in this paper highlight the inherent complexities of jigsaw practices in the 'everyday' of child protection work, which challenges objectivist assumptions about a stability of meaning, and further highlight that the 'endpoint' of reaching a 'full' picture of a child's life is not fixed, nor does it have the same meaning for all professionals, but rather it is a complex process involving sense-making, translation in context and organizational relevance. [ABSTRACT FROM AUTHOR]

Background: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information. Method: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis. Results: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital – a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record. Conclusions: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice. [ABSTRACT FROM AUTHOR]

The current policy trend is to encourage greater choice in the use of welfare services. To make informed choices, people need information. The process of finding and using information has costs for individuals in terms of effort, time and material resources. These costs are different for different people and impact on their use of information in different ways. Thus, the accessibility of information is important in ensuring those people who need to make choices can do so in an informed way. This paper discusses the importance of information in making informed choices about social support by drawing on the findings of a scoping review of government research and development activity on the accessibility of information about adult social care services. The scoping review was carried out in spring 2006. Details of recent, current and planned projects were obtained through discussions with staff in government departments, government agencies and other related organisations identified using a snowballing technique. Forty-two contacts were made. Eleven research and 36 development projects were identified that aimed to investigate or improve the accessibility of information about social care services. A limited literature search was undertaken on information needs in areas not already under investigation by government. Eighteen articles were identified. Information and helpline staff from six voluntary organisations gave their views on the accessibility of information about social care services. Our findings show that there is no government-related or other recent research evidence on the specific information access needs for some user groups and services, for example, people from ethnic minority groups. For other user groups, such as people with chaotic lifestyles, there is evidence on information needs but no current or planned development projects to address these needs. The implications for the costs of finding and processing information to aid informed choices are discussed. [ABSTRACT FROM AUTHOR]

The challenge of the ageing population is not just to provide more services but to employ new strategies. One of these is the need to rethink the provision of information to older people and their carers. This paper makes four points. First, that information and access to information have become more critical issues. Second, that older people may place a much higher value on information than other citizen groups but their access is poor for a range of reasons. Third, that the processes by which older people seek information may be empowering. Finally, effective partnerships with creative older people can be a catalyst to changing governance cultures which is a vital step in modernising local government. The paper draws upon examples from the author's experience of working alongside older people under the umbrella of the Better Life in Later Life project in Newcastle upon Tyne. [ABSTRACT FROM AUTHOR]

This paper examines police officer understandings of and attitudes to the sex offenders’ register, Violent and Sex Offenders’ Register (ViSOR) and Child Sexual Offender Disclosure Scheme (CSODS) in England and Wales – an under-researched area in the management of sexual offenders in the UK. This research is an adaptation of an American study utilising a mixed-methods approach, combining an online questionnaire survey (N = 227) with a series of semi-structured interviews (N = 27). The study found that police officers, irrespective of role, were generally supportive of the register, ViSOR and CSODS in principle, but they thought that logistics, practicalities, infrastructure, multi-agency collaboration and public understandings had problematic impacts on the scheme in practice. The participants believed that greater investment was needed in terms of time and resource to make the register, ViSOR and CSODS easier to use and access and thus fit for purpose. [ABSTRACT FROM PUBLISHER]

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]

Objectives: To explore the experiences, acceptability and utility of a decision aid for family carers of people with dementia towards the end of life. Methods: We conducted semi‐structured interviews with a sample of family carers enroled into a 6‐month feasibility study in England, sampling to gain a range of experiences and views, based on relationship to person they cared for (e.g., spouse, adult child), age, gender, and self‐reported use of the decision aid during the feasibility study. Interviews were conducted in March 2021–July 2021 and analysed using reflexive thematic analysis. We used COREQ checklist to report our methods and results. Results: Family carers found the decision aid acceptable, describing it as comprehensive, accessible with relevant information and its presentation enabled good engagement. Experiences of the decision aid covered four main themes which demonstrated the perceived acceptability and utility: 1. A source of support and reassurance; 2. Empowering conversations and confidence; 3. Including the person living with dementia; and 4. Breaking down complexity. Conclusions: An aid focussing on decisions about dementia end of life care supported family carers break down complex and emotive decisions, not only with making decisions in the moment but also in future planning. Patient or Public Contribution: Our three Patient and Public Involvement (PPI) members (all former family carers) were crucial throughout the wider study. PPI supported development of the topic guides, supported trialling the topic guide and interview procedures and finally supported the development of themes as part of the analysis. [ABSTRACT FROM AUTHOR]

A limited Child Sexual Offender Disclosure Scheme was launched in England and Wales in 2009–10. Drawing upon data from an evaluation of the pilot scheme, this paper explores the views of applicants seeking a disclosure. In particular, the paper considers issues around the low take-up, perceptions of satisfaction and more broadly the role of the scheme in providing reassurance to the public about child sexual offenders in the community. Interestingly, while perceptions of satisfaction with the scheme were high, anxieties about child sexual offenders were not necessarily alleviated by the scheme, and in many instances were heightened. [ABSTRACT FROM PUBLISHER]

The pervading thought in England and Wales has been that private utility companies such as water-only companies (WOCs) and water and sewage companies (WASCs) were public authorities under the 2004 Environmental Information Regulations (EIR) and so were subject to the regime. However, on 23 November 2010, on appeal, the Upper Tribunal delivered a judgment in the case of Smartsource Drainage & Water Report Ltd v The Information Commissioner and 19 Water Companies to the effect that WOCs and WASCs were not public authorities under the EIR. This decision potentially puts certain important environmental information out of public reach in England and Wales. This paper briefl y addresses the contextual issues of the advancement of the public's right to access environmental information into the domain of the private sector and why the public needs to be able to access environmental information directly from private companies and not just from government regulators. Primarily, however, this paper reinforces the case for wide public access to environmental information held by private companies mainly through counter-arguments raised to demonstrate the lack of purposive and contextual interpretation by the Upper Tribunal, in the Smartsource case, of the relevant provisions of the EIR (i.e., Regulation 2(2)(c) and (d)). It concludes with a possible legislative solution to help clarify the import of the relevant EIR provision. [ABSTRACT FROM AUTHOR]

Background: Society is failing in its moral obligation to improve the standard of healthcare provided to vulnerable populations, such as people who lack decision making capacity, by a misguided paternalism that seeks to protect them by excluding them from medical research. Uncertainties surround the basis on which decisions about research participation is made under dual regulatory regimes, which adds further complexity. Vulnerable individuals' exclusion from research as a result of such regulation risks condemning such populations to poor quality care as a result of 'evidence biased' medicine.Main Text: This paper explores the research regulation provisions for proxy decision making for those unable to provide informed consent for themselves, and the subsequent legal and practical difficulties for decision-makers. There are two separate regulatory regimes governing research involving adults who lack capacity to consent in England and Wales. The Mental Capacity Act 2005 governs how incapacitated adults can be involved in research, however clinical trials of medicinal products are separately regulated by the Medicines for Human Use (Clinical Trials) Regulations 2004. There are significant differences under these dual regimes in the provisions for those lacking capacity to participate in medical research. The level of risk permitted differs, with a greater requirement for justification for participation in a clinical trial than other types of research. Who acts as proxy decision maker, how much information is provided to the person lacking capacity, and whether they retain the power of veto also significantly differs.Conclusion: The development of two separate regulatory regimes has resulted in significant differences between the provisions for clinical trials and other forms of research, and from usual medical practice. The resulting uncertainty has reinforced the tendency of those approving and conducting research to exclude adults lacking capacity to avoid difficult decisions about seeking consent for their participation. Future developments, such as the incoming EU Regulations, may address some of these differences, however the justification and level of risk permitted requires review to ensure that requirements are appropriate and proportionate to the burdens and risks for the individual, and also to the benefits for the wider population represented. [ABSTRACT FROM AUTHOR]

Purpose -- Joint Strategic Needs Assessments (JSNAs) are required for every local authority in England, and should contain information to allow for strategic health and wellbeing planning for the local population, including disabled people. A 2013 analysis of JSNAs showed that JSNAs were not routinely including information on the numbers and health needs of people with learning disabilities, particularly children. The purpose of this paper is to compare the information included in 2013 and 2014 JSNAs. Design/methodology/approach -- JSNAs for 141 local authorities in England were sought. Local authorities were contacted when JSNAs were not initially found online. All 137 JSNAs found were analysed for mentions and specific sections concerning people with learning disabilities, and content analysed concerning the specific information they contained. Findings -- In total, 72 per cent of JSNAs mentioned people with learning disabilities (vs 82 per cent in 2013); 24 per cent mentioned children (vs 39 per cent in 2013) and 72 per cent mentioned adults (vs 81 per cent in 2013). Overall, 13 per cent of JSNAs included a section on children with learning disabilities (vs 9 per cent in 2013), 65 per cent included a section on adults (vs 48 per cent in 2013) and 11 per cent included a section on older adults (vs 8 per cent in the 2013). More JSNAs contained information on current and projected future populations, health needs, social context and service usage concerning adults with learning disabilities compared to children. There was large regional variation in all these indicators. Originality/value -- Further work is needed for JSNAs to contain sufficient information on people with learning disabilities to allow for strategic planning, and for JSNAs to be accessible to the public. [ABSTRACT FROM AUTHOR]

Purpose - As the notion of "integrated care" has received ever greater policy traction, so the idea that a named individual should take responsibility for coordinating the various elements of care for service users has also gained ground. The purpose of this paper is to look at the proposal to hand this role to GPs, examine the policy expectations and explore some of the implementation dilemmas. Design/methodology/approach - Review of policy documents and relevant literature. Findings - That the role of "care coordinator" has rarely succeeded in the past and that there are specific difficulties in expecting GPs to take on the task. Research limitations/implications - Review of existing literature linked to emergent policy - no original research. Originality/value - This is a new application of an enduring policy concept. Currently the literature is thin. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic caused various disruptions to NHS maternity services in England. Changes were made to antenatal and postnatal care and the way that information was shared with maternity service users during these times. Fewer face-to-face appointments, increased virtual appointments and changes in guidance about the suitability of the COVID-19 vaccine without appropriate information sharing and evidence caused concern. Methods: This study took a blended inductive-deductive approach to secondary data analysis using a population subset of 16 from a wider study that sought to understand the impact of COVID-19 on maternity services in England. Participants of this study were aged 28–44 and gave birth using NHS maternity services in England. The data were collected and coded using Rapid Analysis Procedure sheets, which generated key themes, which are used here to structure the results. Results: Four main themes were generated from the analysis: 1) service restrictions to antenatal and postnatal appointments 2) access to information and changes to antenatal and postnatal care 3) inconsistencies in the implementation of government and NHS policy and 4) limited information about COVID-19 vaccine provided by NHS trusts and hesitancy in vaccine acceptance. Conclusion: Participants experienced poor communication that affected their understanding of maternity service changes and there was limited general and maternal health information provided. Vaccine information was also inadequate, and participants expressed a desire for clearer guidance. The UK Government, Royal College of Obstetricians and Gynaecologists, and NHS must collaborate with maternity service users to ensure that there are evidence-based guidelines and policies that can be understood and standardised across all NHS maternity trusts. [ABSTRACT FROM AUTHOR]

As an increasing number of Government services have moved away from traditional modes of provision to online formats, there has been a corresponding need to ensure greater access to the internet. Although older people (those over 60) are least likely of all age groups to have access to the internet in their homes, the internet holds much potential as an information and advice resource for those older people who may find it difficult to access advice over the telephone or in person. Realising this potential extends beyond issues of physical access; consideration must necessarily be given to issues of internet literacy and the inclination of this cohort to utilise what may be new and unfamiliar technology. This paper examines these matters in the context of the resolution of everyday problems with a legal dimension. Looking first at the use of the internet for information and advice seeking related to such problems, we find that those aged over 60 demonstrate the least use of the internet for problems with a legal dimension. Simultaneously, those aged over 60 are also the group with the lowest level of home access – a particular issue given that for over 60-year-olds, home access is a far stronger determinant of internet use for problems than it is for other age groups. Examining use of the internet for advice seeking over the last decade, findings demonstrate the existence of a general increase in use amongst all age groups over time, albeit with a lower rate of growth amongst those currently over 60. As an indication of future growth, this will have implications for the provision of services. Whilst the ‘young old’ will utilise the internet to a greater degree and will require websites which are tailored to their needs, those individuals at the older end of the age spectrum may best be served by continued access to face-to-face or outreach advice. The implications these findings pose for policy makers in setting priorities in the remit of online service provision are discussed, with results having particular relevance in England and Wales given planned changes to civil legal aid. [ABSTRACT FROM PUBLISHER]

Working carers are a key focus of UK policies on health and social care and employment. Complementing national and European evidence, this paper presents a local case study of working carers. It draws on data from a county-wide survey containing a module on caring. Data were primarily categorical and were analysed using SPSS. Three quarters of all carers who responded to the survey were of working age: two thirds were employed and one third had been employed previously. The majority of working carers were mid-life extra-resident women. Over half of cared for relatives were elderly parents/in law; ‘physical illness’ was the primary cause of dependency. A tenth provided intensive care and half reported that caring adversely affected their health. Both were triggers for leaving employment. Two thirds of households received input from services and/or friends/family; being a co-resident carer appeared to mitigate against service allocation. Four issues were identified as pivotal to facilitating employment: access to advice and information, the availability of a matrix of affordable good-quality social-care services, ‘joined up’ needs assessment of the carer and cared for person, and employers identifying carers in their workforce. Europe's ageing profile underscores the study's timeliness. [ABSTRACT FROM AUTHOR]

Theories of offender motivation for treatment have proposed that external factors may be as important as internal factors in creating a state of readiness for treatment. This paper reports an exploratory study of the barriers to treatment for incarcerated sexual offenders. Qualitative and quantitative analysis of interview and questionnaire data from treatment refusers and accepters suggested that refusers were less aware of the effectiveness of treatment, reported seeing negative side effects of treatment in others and felt they had a higher social status in prison which could be damaged by attending treatment. While this study does not demonstrate a causal link between these experiences and the decision to refuse treatment, it seems reasonable to suggest that take-up of treatment could be increased by more sustained efforts to build relationships with treatment refusers and by the provision of accessible information about treatment and its potential benefits. [ABSTRACT FROM AUTHOR]

The article offers the author's insights on the policy report called "Science as an Open Enterprise" from the Royal Society in London, England concerning access to scientific papers and theories. He mentions that open inquiry to scientific research and publication of scientific papers and theories allow others to identify errors, refine theories and reuse of data. He states that everyone will benefit from a more open information access.

The article offers information on the mandatory Public Access Policies introduced by the U.S. National Institutes of Health (NIH) and the British agency Wellcome Trust for all research papers. The NIH policy requires all investigators funded by the National Library of Medicine's PubMed Central (PMC) to submit an electronic version of their final manuscripts. The Wellcome Trust policy mandates electronic copies of any research papers accepted for publication to be made available through PMC.

This paper explores how disabled adults and older people find and use information to help make choices about services. It presents findings from a qualitative longitudinal study in England. Thirty participants had support needs that fluctuated, meaning that additional services might be needed on a temporary basis; and 20 had the sudden onset of support needs resulting from an accident or rapid deterioration in health. Each disabled adult or older person was interviewed three times between 2007 and 2009, using a semi-structured topic guide. They were asked to discuss a recent choice about services, focussing, amongst other things, on their use of information. Interviews were transcribed and coded, then charted according to emergent themes. A wide range of choices and sources of information were discussed. These were dominated by health and to some extent by social care. Key findings are that information was valuable not just in weighing up different service options, but as a precondition for such choices, and that disabled adults and older people with the gradual onset of support needs and no prior knowledge about services can be disadvantaged by their lack of access to relevant information at this pre-choice stage. Timely access to information was also important, especially for people without the support of emergency or crisis management teams. Healthcare professionals were trusted sources of information but direct payment advisers appeared less so. Ensuring that practitioners are confident in their knowledge of direct payments, and have the communication skills to impart that knowledge, is essential. There may be a role also for specialist information advocates or expert lay-advisers in enabling disabled adults and older people to access and consider information about choices at relevant times. [ABSTRACT FROM AUTHOR]

In England and Wales, the question of access to information about deceased persons is determined under two separate statutes: the Access to Health Records Act 1990 and the Freedom of Information Act 2000. This paper examines the normative and legal issues raised by access to information about the dead and evaluates the statutory framework. It draws on philosophical and legal sources which support the claim that the dead are owed a moral and legal duty of confidence. However, it also shows that this is not an absolute duty and it identifies the public and private justifications which favour the provision of access to information about the dead. It argues that the current statutory framework is excessively restrictive and that it fails to provide an appropriate context within which interests favouring access may be considered. Accordingly, it argues that the law needs to be reformed and that a specific legislative framework dealing with access to information about the dead should be introduced. The paper concludes by setting out some preliminary suggestions regarding the possible form of such a legislative framework. [ABSTRACT FROM AUTHOR]

Healthcare staff are encouraged to use feedback from their patients to inform service and quality improvement. Receiving patient feedback via online channels is a relatively new phenomenon that has rarely been conceptualised. Further, the implications of a wide, varied and unknown(able) audience being able to view and interact with online patient feedback are yet to be understood. We applied a theoretical lens of dramaturgy to a large ethnographic dataset, collected across three NHS Trusts during 2019/2020. We found that organisations demonstrated varying levels of 'preparedness to perform' online, from invisibility through to engaging in public conversation with patients within a wider mission for transparency. Restrictive 'cast lists' of staff able to respond to patients was the hallmark of one organisation, whereas another devolved responding responsibility amongst a wide array of multidisciplinary staff. The visibility of patient‐staff interactions had the potential to be culturally disruptive, dichotomously invoking either apprehensions of reputational threat or providing windows of opportunity. We surmise that a transparent and conversational feedback response frontstage aligns with the ability to better prioritise backstage improvement. Legitimising the autonomous frontstage activity of diverse staff groups may help shift organisational culture, and gradually ripple outwards a shared responsibility for transparent improvement. [ABSTRACT FROM AUTHOR]

One significant barrier to physical activity (PA) for people with disabilities is the lack of access to PA information. The purpose of this study was to explore how access to PA information can be improved for people with disabilities, their carers, and PA-session facilitators. To investigate the flow of PA information within a communication network, principles derived from knowledge translation were used: information audiences, messengers, methods, and effectiveness. Participants included 48 people with disabilities (34 male and 14 female; mean age 30 years), 34 carers, and 12 session facilitators. Qualitative data were analyzed using thematic analysis. Results show how communication of PA information can be improved by indicating practical value in understanding individual motivations to PA participation, including credible messengers, using multiple delivery methods, and expanding information networks. Future steps are offered, including practical implications resulting from this study to improve PA information flow within a network. [ABSTRACT FROM AUTHOR]

National Health Service (NHS) knowledge and library services in England are integrating digital advances into their systems and services. Health Education England (HEE) leads on the development of NHS library services. A key workstream focuses on (1) improving the infrastructure to enable discovery and management of digital knowledge resources; (2) collaborating with local teams to establish regional library management systems that are integrated with the new national discovery service for healthcare staff and learners. This article explores initiatives on resource discovery as well as the need for system‐wide partnership working to ensure that biomedical knowledge in computable form is findable, accessible, interoperable and reusable. Low levels of health and digital literacy pose a significant barrier to using health information and accessing health services. A range of interventions are aimed at enhancing citizens' digital and health literacy skills. The education and life‐long learning needs of the knowledge and library services workforce are considered. Working with CILIP and higher education institutions, HEE delivers a range of educational offers through its Learning Academy. As Artificial Intelligence and automation are implemented in health systems, knowledge and library staff form a crucial bridge between technology and those who use it. [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]

Introduction: Remote home monitoring models were implemented during the COVID‐19 pandemic to shorten hospital length of stay, reduce unnecessary hospital admission, readmission and infection and appropriately escalate care. Within these models, patients are asked to take and record readings and escalate care if advised. There is limited evidence on how patients and carers experience these services. This study aimed to evaluate patient experiences of, and engagement with, remote home monitoring models for COVID‐19. Methods: A rapid mixed‐methods study was carried out in England (conducted from March to June 2021). We remotely conducted a cross‐sectional survey and semi‐structured interviews with patients and carers. Interview findings were summarized using rapid assessment procedures sheets and data were grouped into themes (using thematic analysis). Survey data were analysed using descriptive statistics. Results: We received 1069 surveys (18% response rate) and conducted interviews with patients (n = 59) or their carers (n = 3). 'Care' relied on support from staff members and family/friends. Patients and carers reported positive experiences and felt that the service and human contact reassured them and was easy to engage with. Yet, some patients and carers identified problems with engagement (e.g., hesitancy to self‐escalate care). Engagement was influenced by patient factors such as health and knowledge, support from family/friends and staff, availability and ease of use of informational and material resources (e.g., equipment) and service factors. Conclusion: Remote home monitoring models place responsibility on patients to self‐manage symptoms in partnership with staff; yet, many patients required support and preferred human contact (especially for identifying problems). Caring burden and experiences of those living alone and barriers to engagement should be considered when designing and implementing remote home monitoring services. Patient or Public Contribution: The study team met with service users and public members of the evaluation teams throughout the project in a series of workshops. Workshops informed study design, data collection tools and data interpretation and were conducted to also discuss study dissemination. Public patient involvement (PPI) members helped to pilot patient surveys and interview guides with the research team. Some members of the public also piloted the patient survey. Members of the PPI group were given the opportunity to comment on the manuscript, and the manuscript was amended accordingly. [ABSTRACT FROM AUTHOR]

Over the last five decades, there has been a growing concern that Gypsy, Roma and Traveller children are overrepresented in child welfare services (CWS) in Europe. However, statistical data used to substantiate this concern often conflates ethnicity and nationality limiting our full understanding of the reported situation. This article provides a more comprehensive illustration of overrepresentation, advancing the quantitative study of this topic in England. Using a per capita division by population method, data obtained from the Department of Education were tested for disparity ratios across four key indicators. The analyses found that the recorded number of 'Gypsy/Roma' and 'Travellers of Irish Heritage' in CWS in England has been growing at a disproportionate rate since 2011–2012 to now demonstrate overrepresentation. The findings go beyond the concerns that have been raised to highlight a more specific need for remedial and restorative action. Implications are discussed for strategic responses to drive up data quality and further explore the details of the disparities that are found. [ABSTRACT FROM AUTHOR]

Single-sided deafness presents communication challenges for adults. There are a range of care options, including CROS hearing aids, available but little is known about patient preferences for these interventions. The objective of this study was to understand the viewpoints of patients making decisions about audiological interventions they use. A constructivist worldview using thematic analysis to undertake a constant comparative analysis of 8 semi-structured interviews. Participants were recruited from Portsmouth Hospitals University NHS Trust audiology service in England. The results of the study describe ongoing iterative judgements being made by participants, informed by their access to information, effectiveness of audiological interventions, stigma, barriers to accessing care, and constant cost-benefit analyses being made. The key factors involved in decision-making by individuals with Single-sided deafness (SSD) are discussed. This study represents the first in-depth exploration of the individual's lifeworld related to which factors influence use of different audiological interventions by individuals with SSD. It highlights the complex and ongoing nature of how decisions are made by these individuals and identifies the need for greater information provision by clinicians, such as through use of a decision aid tool. [ABSTRACT FROM AUTHOR]

Abstract: In this paper we consider the potential of autobiographical narratives for accessing ‘storied knowledge’ in research around geographies of health voluntarism. We firstly consider what is meant by elicited autobiography and how the narrative approach has been used in research more broadly. Drawing on fieldwork undertaken in Manchester, UK and Auckland, New Zealand we then demonstrate how this approach has helped us to map out and unpack the career journeys of mental health activists working within and across the voluntary and statutory sectors. Through our autobiographical narratives we illustrate how this approach has enabled us to elicit important insights into the triggers and trajectories underpinning mental health activism and how events and moments in time have provided critical junctures in these trajectories. We consider places as sites of significance in activist career paths; and as central to the researcher-participant gestalt within which the autobiography is elicited and recounted. The autobiographical process, we suggest, offers reflective insights into mental health activism that might not otherwise be gained using more conventional methodologies. [Copyright &y& Elsevier]

Within the context of rural civic participation, three different types of trust are described, based on Simmelian-related constructs: personal trust, system trust and instrumental trust. Each has two components, a justification and a leap of faith. These vary in proportion according to degrees of knowledge held. Shifts in public domain decision-making have changed the emphasis of different types of trust. In using constructs of social capital to explore rural decision-making, bonding social capital is seen to cohere around notions of personal trust, bridging social capital around system trust and contested social capital around instrumental trust. In rural decision-making it is suggested, drawing from case study evidence in Gloucestershire, that personal trust is becoming increasingly important because of the localisation of decision-making and ambiguities in representation. A greater reliance is also being placed on system trust because of increasingly complex decision-making structures. While in principle instrumental trust can be ameliorated through access to knowledge and information, increasingly, the volume of information is problematic, and decision-makers are relinquishing their knowledge to ‘experts’. [ABSTRACT FROM AUTHOR]

Objectives: CLEF is an MRC sponsored project in the E-Science programme that aims to establish methodologies and a technical infrastructure for the next generation of integrated clinical and bioscience research.Methods: The heart of the CLEF approach to this challenge is to design and develop a pseudonymised repository of histories of cancer patients that can be accessed by researchers. Robust mechanisms and policies have been developed to ensure that patient privacy and confidentiality are preserved while delivering a repository of such medically rich information for the purposes of scientific research.Results: This paper summarises the overall approach adopted by CLEF to meet data protection requirements, including the data flows, pseudonymisation measures and additional monitoring policies that are currently being developed.Conclusion: Once evaluated, it is hoped that the CLEF approach can serve as a model for other distributed electronic health record repositories to be accessed for research. [ABSTRACT FROM AUTHOR]

Objective: To improve patient experience of chemotherapy‐induced peripheral neuropathy (CIPN), it is crucial to identify how patients develop their understanding and perception of CIPN. A wider understanding of the experiences of clinicians who provide CIPN information and support is also needed. This study explored clinician and patient experience of the provision of care, information and support for CIPN. Methods: Data were collected between July and November 2019 using multiple qualitative methods. Non‐participant observations were undertaken in colorectal and breast cancer clinics and at clinician stations, including the observation of chemotherapy consultations between patients and clinicians. Semi‐structured interviews with people with cancer and clinicians were also conducted. Data were analysed using inductive reflexive thematic analysis. Results: Three major themes emerged: (1) CIPN is a hidden chemotherapy side effect, (2) assessment and management of CIPN is disconnected and (3) patients and clinicians expect openness in CIPN symptom reporting, information provision and management. Conclusion: Findings show the need to address the lack of patients' overall familiarity with CIPN. Echoing earlier studies, our findings suggest that knowledge and understanding about CIPN among clinicians are limited or lacking. These insights from patient and clinicians' CIPN experiences can inform future interventions that may address the genuine needs of patients and enhance CIPN support. [ABSTRACT FROM AUTHOR]

The launch of the East India Company in 1599 relied on the engagement of an investing public. Despite this, little is known about how and why ordinary individual investors chose to invest in the corporation or what institutional frameworks supported them. While the later 'financial revolution' would radically alter the relationship between the state, investors, and financial organizations, this process does not adequately explain the earlier development of an investing public. Using a newly developed dataset of members' familial, neighbourhood, civic, and business connections, this article reconstructs the social networks of East India Company investors in 1599. This analysis reveals that the company was formulated within an intensely interconnected investment environment – linkages that were used to distribute information and provide access to seemingly illiquid markets. Social networks played a key role in how people decided about where, when, with whom, and how much to invest during the expansion of investment opportunities in early modern England. [ABSTRACT FROM AUTHOR]

This article explores the response of the Science and Engineering Library team at Manchester Metropolitan University to the Covid-19 pandemic. It examines how the team's experience supporting distance-learning programmes acted as both a dress rehearsal and a road map for Library provision during the pandemic. In particular, the changing role of staff members whilst operating in the Covid-19 setting is carefully reflected upon. The article is structured into three sections, discussing support for distance-learning programmes, distance learning and Covid-19, and the changes Covid-19 prompted within the team's operation. [ABSTRACT FROM AUTHOR]

Background: The convergence of neuroscience, genomics, and data science holds promise to unveil the neurobiology of psychosis and to produce new ways of preventing, diagnosing, and treating psychotic illness. Yet, moral challenges arise in neurobiological research and in the clinical translation of research findings. This article investigates the views of relevant actors in mental health on the moral challenges of accessing neurobiological information in the context of psychosis.Methods: Semi-structured individual interviews with two groups: researchers employed in the National Health Service (NHS) or a university in England (n = 14), and mental health professionals employed in NHS mental health services (n = 14). This article compares results in the two groups (total n = 28).Results: This article presents findings around three conceptual areas: (1) research ethics as mostly unproblematic, (2) psychosis, neurobiological information, and mental health care, and (3) identity, relationships, and the future. These areas are drawn from the themes and topics that emerged in the interviews across the two groups of participants. Researchers and health professionals provided similar accounts of the moral challenges of accessing-which includes acquisition, communication, and use of-neurobiological information in the context of psychosis. Acquiring neurobiological information was perceived as mostly unproblematic, provided ethical safeguards are put in place. Conversely, participants argued that substantive moral challenges arise from how neurobiological information is delivered-that is, communicated and used-in research and in clinical care. Neurobiological information was seen as a powerful tool in the process through which individuals define their identity and establish personal and clinical goals. The pervasiveness of this narrative tool may influence researchers and health professionals' perception of ethical principles and moral obligations.Conclusions: This study suggests that the moral challenges that arise from accessing neurobiological information in the context of psychosis go beyond traditional research and clinical ethics concerns. Reflecting on how accessing neurobiological information can influence individual self-narratives will be vital to ensure the ethical translation of neuroscience and genomics into mental health.Trial Registration: The study did not involve a health care intervention on human participants. It was retrospectively registered on 11 July 2018, registration number: researchregistry4255. [ABSTRACT FROM AUTHOR]

Allied health professionals (AHPs) working with children need the appropriate knowledge, skills and experiences to provide high‐quality care. This includes using research to drive improvements in care and ensuring that knowledge and practices are consistent and build upon the best available evidence. The aim of this work was to understand more about the shared behaviours and opinions of health professionals supporting children's foot health care; how they find information that is both relevant to their clinical practice as well as informing the advice they share. A qualitative design using semi‐structured, one‐to‐one, telephone interviews with AHPs was adopted. Thematic analysis was used to generate meaning, identify patterns and develop themes from the data. Eight interviews were conducted with physiotherapists, podiatrists and orthotists. Five themes were identified relating to health professionals: (a) Engaging with research; (b) Power of experience; (c) Influence of children's footwear companies; (d). Dr Google – the new expert and (e) Referral pathways for children's foot care. The findings indicate that the AHPs adopted a number of strategies to develop and inform their own professional knowledge and clinical practice. There could be barriers to accessing information, particularly in areas where there is limited understanding or gaps in research. The availability of online foot health information was inconsistent and could impact on how AHPs were able to engage with parents during consultations. [ABSTRACT FROM AUTHOR]

Can personal digital assistants such as Amazon Alexa help to improve patients' adherence to their medicines? Here, the authors discuss the potential and the limitations of this technology, and describe their pilot study in patients with diabetes and other underlying health conditions. [ABSTRACT FROM AUTHOR]