This paper reports findings from a qualitative study into the immediate impact of social distancing measures on the lives of lesbian, gay, bisexual and trans (LGBT+) older people (≥60 years) living in the UK during the first lockdown of the COVID-19 pandemic. It draws on in-depth interviews with 17 older people and 6 key informants from LGBT+ community-based organisations, exploring the strategies used to manage their situations, how they responded and adapted to key challenges. Five themes emerged related to: (1) risk factors for LGBT+ older people and organisations, including specific findings on trans experiences; (2) care practices in LGBT+ lives; (3) strengths and benefits of networking (4) politicisation of ageing issues and their relevance to LGBT+ communities and (5) learning from communication and provision in a virtual world. The findings illuminate adaptability and many strengths in relation to affective equality and reciprocal love, care and support among LGBT+ older people. It is vital UK that the government recognises and addresses the needs and concerns of LGBT+ older people during emergencies.
The UK has experienced significant recent immigration from Eastern Europe following European Union (EU) expansion in 2004. Lincolnshire is a predominantly rural county in the East Midlands region of the UK with a large and recently arrived Eastern European population requiring healthcare, including urgent ambulance care. The Equality Act 2010 requires public bodies such as health services to provide access to high quality healthcare, while the Equality Delivery System seeks to ensure that UK NHS organisations comply with the legislation. This study aimed to explore the perceptions and experiences of ambulance staff attending Eastern European patients in Lincolnshire. Qualitative semi-structured interviews were conducted with 15 ambulance staff at locations across Lincolnshire. Purposive and maximum variation sampling ensured that participants were knowledgeable about Eastern European patients' use of ambulance care and covered a range of demographic characteristics. The data were analysed using framework analysis. Difficulty in accessing professional interpreters meant that some patients relied instead on family members. Some Eastern European patients brought back foreign medication from their country of origin, which ambulance staff could not understand. It was common for patients to not be registered with GPs because they were temporarily resident, did not understand how the UK healthcare system worked or preferred to go to their home country for treatment. By not registering with GPs, patients were sometimes transported to the Emergency Department for primary care conditions. The practical recommendations for service delivery improvements may be valuable for service providers and could be incorporated into future protocols. These include: having a glossary of key terms in Eastern European languages; simple packs explaining how and when to use the ambulance service translated into different languages where necessary; encouraging patients to register with GPs; and face-to-face meetings where the ambulance service inform the Eastern European communities about how to use their services.
Background: The UK has experienced significant immigration from Eastern Europe following European Union (EU) expansion in 2004, which raises the importance of equity and equality for the recent immigrants. Previous research on ethnic health inequalities focused on established minority ethnic groups, whereas Eastern European migrants are a growing, but relatively under-researched group. We aimed to conduct a systematic scoping review of published literature on Eastern European migrants' use and experiences of UK health services. Methods: An initial search of nine databases produced 5997 relevant publications. Removing duplicates reduced the figure to 2198. Title and abstract screening left 73 publications. Full-text screening narrowed this down further to 10 articles, with three more from these publications to leave 13 included publications. We assessed publications for quality, extracted data and undertook a narrative synthesis. Results: The included publications most commonly studied sexual health and family planning services. For Eastern European migrants in the UK, the most commonly cited barriers to accessing and using healthcare were limited understanding of how the system worked and language difficulties. It was also common for migrants to return to their home country to a healthcare system they were familiar with, free from language barriers. Familial and social networks were valuable for patients with a limited command of English in the absence of suitable and available interpreting and translating services. Conclusions: To address limited understanding of the healthcare system and the English language, the NHS could produce information in all the Eastern European languages about how it operates. Adding nationality to the Electronic Patient Report Form (EPRF) may reveal the demand for interpretation and translation services. Eastern European migrants need to be encouraged to register with GPs to reduce A&E attendance for primary care conditions. Many of the issues raised will be relevant to other European countries since the long-term outcomes from Brexit are likely to influence the level of Eastern European and non-Eastern European migration across the continent, not just the UK.
Background There is an increasing need to assess the performance of emergency ambulance services using measures other than the time taken for an ambulance to arrive on scene. In line with government policy, patients and carers can help to shape new measures of ambulance service performance. Objective To investigate the aspects of emergency ambulance service care valued by users. Design Qualitative interview study. Setting One of 11 ambulance services in England. Participants Twenty-two users and eight of their spouses (n = 30). Results Users of the emergency ambulance service, experiencing different types of ambulance service response, valued similar aspects of their pre-hospital care. Users were often extremely anxious about their health, and the outcome they valued was reassurance provided by ambulance service staff that they were receiving appropriate advice, treatment and care. This sense of being reassured was enhanced by the professional behaviour of staff, which instilled confidence in their care; communication; a short wait for help; and continuity during transfers. A timely response was valued in terms of allaying anxiety quickly. Discussion and conclusions The ability of the emergency ambulance service to allay the high levels of fear and anxiety felt by users is crucial to the delivery of a high quality service. Measures developed to assess and monitor the performance of emergency ambulance services should include the proportion of users reporting feeling reassured by the response they obtained.
The problem The ambulance service has no information about what happens beyond the prehospital phase of care. This leads to process measures, e.g. response rates, being used as a proxy for quality of care. Research aim To develop better ways of measuring the quality and performance of ambulance service care. Methods Prehospital Outcomes for Evidence Based Evaluation (PhOEBE) is a five year National Institute for Health Research (NIHR) programme to develop better ways of measuring the performance, quality and impact of ambulance service care by: identifying and prioritising ambulance related outcome measures; creating a new information source by linking together routinely collected data; using the linked dataset to build predictive models to assess what aspects of care can predict good or poor outcomes (mortality and non-mortality) and measure the effectiveness and quality of ambulance service care; assessing the practical use of the measures and the linked data as a way to support quality improvement in the NHS; in order to provide better information about effectiveness and quality of care. We developed a data linking methodology that was acceptable to patients and complied with information legislation. Data from two participating ambulance services were processed and linked to other routinely collected data through the NHS Health and Social Care Information Centre's Trusted Data Linkage Service, which is a designated safe haven for health information. Conclusions It is possible to link ambulance service data to subsequent care information. The new database can be used to support audit and research and to measure the impact of any new changes and innovations in how ambulance services provide care, to ensure continued improvements for patients. Allied to this we used consensus methods to develop a set of outcome measures for measuring the quality and performance of ambulance service care, which will be tested within the linked dataset using predictive models.
Background Pre-hospital care in England is provided by ambulance services who deliver a diverse range of services to over 9 million patients a year but there is limited evidence about the effectiveness of this care. Historically ambulance performance has been measured by response times rather than clinical need or effectiveness. Progress on developing more appropriate performance measures is constrained by a lack of information about what happens to patients and their outcome after the pre-hospital component of care. If ambulance service information about patients could be linked to process and outcome data further along the care pathway then relevant measurement tools could be developed that allow a better assessment of the impact of pre-hospital care. The Pre-hospital Outcomes for Evidence Based Evaluation (PhOEBE) project is a 5 year programme of research funded by the UK National Institute of Health Research. Aims & objectives The aim of the programme is to develop new ways of measuring the impact of care provided by the ambulance service to support quality improvement through monitoring, audit and service evaluation. The objectives are to: 1) Review and synthesise the research literature on pre-hospital care outcome measures and identify measures relevant to the NHS and patients for further development; 2) Create a dataset linking routinely collected pre-hospital data, hospital data and mortality data to provide outcome information; 3) Develop new ways of measuring process and outcome indicators including building risk adjustment models that predict the outcomes using the linked data; 4) Explore the practical use of the linked dataset and the risk adjustment models to measure the effectiveness and quality of ambulance service care. Research plans The programme has 4 linked stages; 1. Synthesis of evidence on outcome measures and identification of measures for further development - review and assessment of the evidence base on outcome measurement for pre-hospital care and a consensus studies to identify measures relevant to patients and NHS staff. 2: Linking pre-hospital data with other patient data sources – creating a single dataset that links ambulance service electronic care records with routinely collected Hospital Episode Statistics (HES) and national mortality data. 3. Development of risk adjustment models for outcomes in patients attended by the ambulance service – using the linked data to develop risk adjustment tools that will allow patient differences to be taken into account and differences between expected and actual outcomes to be detected. Particular emphasis will be made to include the broad EMS population and not specific conditions as has been the case in the past. 4. Testing the risk adjustment models to assess if they can be used to measure effectiveness and quality – exploring the practical application of the measures by using them to assess if different ways of providing ambulance service care result in different consequences for patients. Outputs, outcomes and impact The programme will: • Provide a summary of relevant evidence on pre-hospital care outcome measurement • Develop a method for linking healthcare information into a format that can be used to support quality improvement, is acceptable to patients and complies with information legislation • Develop population based models for measuring the impact of pre-hospital care that can be used to monitor quality and safety, evaluate new service innovations and support quality improvement • Provide added value by using routine information and NHS infrastructure to operationalise the process and outcome models so that they will be of use across the NHS Progress to date The programme commenced in June 2011 and ends in May 2016. Two systematic reviews of measures used to measure the impact of ambulance service care (one policy literature and one research literature based) have been completed as has a qualitative study of recent service users to identify aspects of service they value. Potential measures identified by these studies were presented at a consensus conference and then further refined in a Delphi study to prioritise and identify measures for further development. Linked data is currently being created and the next stage will be the development of risk adjusted predictive models for the final identified measures.
Background Historically ambulance care quality and performance has been measured by response times rather than clinical need or effectiveness. This limits the evidence about the effectiveness of the care the ambulance service provides. The Pre-hospital Outcomes for Evidence Based Evaluation (PhOEBE) project is a 5 year research programme which aims to develop new ways of measuring the performance, quality and impact of ambulance service care that better reflect the care provided. Methods We held a 1 day consensus event with a multi-stakeholder group to identify and prioritise which features of ambulance service care are important and worth further development as measures of performance and quality. The day comprised a series of small group discussions to share opinions about measures identified from literature reviews and the opportunity for participants to add their ideas, together with a live vote to help identify and rank measures for further development. Time measures were considered in a separate online questionnaire. The results from the online questionnaire and Consensus Event were fed into a Delphi study. Results 43 participants attended the consensus event, representing a range of participant groups including patient and public, ambulance services, commissioners and policy groups. The top 5 outcome measures prioritised by the participants were: Accuracy of dispatch decisions; Completeness and accuracy of patient records; Accuracy of call taker identification of different conditions or needs (e.g. heart attack, stroke, suitable for nurse advice); Pain measurement and symptom relief; Patient experience. From the online survey of time measures the top 5 measures were Time of call to time of arrival at scene; Time symptoms start (e.g. chest pain) to time of treatment with balloon for heart attack; Time taken to answer the emergency call; Total time spent on scene; Incident or start of symptoms to calling the ambulance service Conclusions Using consensus methods we have identified a set of outcome measures that can potentially be used to measure the performance and quality of ambulance service care. Some of these measures fit with existing government targets, such as response times and time taken to answer the emergency call. However most measures are new ways of measuring ambulance service care and the importance of these measures and methods of measurement will be assessed as part of an on-going Delphi study.
Background Historically ambulance care quality and performance has been measured by response times rather than clinical need or effectiveness. This limits the evidence about the effectiveness of the care the ambulance service provides. The Pre-hospital Outcomes for Evidence Based Evaluation (PhOEBE) project is a 5 year research programme which aims to develop new ways of measuring the performance, quality and impact of ambulance service care that better reflect the care provided. Methods We held a 1 day consensus event with a multi-stakeholder group to identify and prioritise which features of ambulance service care are important and worth further development as measures of performance and quality. The day comprised a series of small group discussions to share opinions about measures identified from literature reviews and the opportunity for participants to add their ideas, together with a live vote to help identify and rank measures for further development. Time measures were considered in a separate online questionnaire. The results from the online questionnaire and Consensus Event were fed into a Delphi study. Results 43 participants attended the consensus event, representing a range of participant groups including patient and public, ambulance services, commissioners and policy groups. The top 5 outcome measures prioritised by the participants were: accuracy of dispatch decisions; completeness and accuracy of patient records; accuracy of call taker identification of different conditions or needs (e.g. heart attack, stroke, suitable for nurse advice); pain measurement and symptom relief; and patient experience. From the online survey of time measures the top 5 measures were time of call to time of arrival at scene; time symptoms start (e.g. chest pain) to time of treatment with balloon for heart attack; time taken to answer the emergency call; total time spent on scene; and incident or start of symptoms to calling the ambulance service. Conclusion Using consensus methods we have identified a set of outcome measures that can potentially be used to measure the performance and quality of ambulance service care. Some of these measures fit with existing government targets, such as response times and time taken to answer the emergency call. However, most measures are new ways of measuring ambulance service care and the importance of these measures and methods of measurement will be assessed as part of an on-going Delphi study.
Background The scale-up of tobacco control, especially after the adoption of the Framework Convention for Tobacco Control, is a major public health success story. Nonetheless, smoking remains a leading risk for early death and disability worldwide, and therefore continues to require sustained political commitment. The Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) offers a robust platform through which global, regional, and national progress toward achieving smoking-related targets can be assessed. Methods We synthesised 2818 data sources with spatiotemporal Gaussian process regression and produced estimates of daily smoking prevalence by sex, age group, and year for 195 countries and territories from 1990 to 2015. We analysed 38 risk-outcome pairs to generate estimates of smoking-attributable mortality and disease burden, as measured by disability-adjusted life-years (DALYs). We then performed a cohort analysis of smoking prevalence by birth-year cohort to better understand temporal age patterns in smoking. We also did a decomposition analysis, in which we parsed out changes in all-cause smoking-attributable DALYs due to changes in population growth, population ageing, smoking prevalence, and risk-deleted DALY rates. Finally, we explored results by level of development using the Socio-demographic Index (SDI). Findings Worldwide, the age-standardised prevalence of daily smoking was 25·0% (95% uncertainty interval [UI] 24·2–25·7) for men and 5·4% (5·1–5·7) for women, representing 28·4% (25·8–31·1) and 34·4% (29·4–38·6) reductions, respectively, since 1990. A greater percentage of countries and territories achieved significant annualised rates of decline in smoking prevalence from 1990 to 2005 than in between 2005 and 2015; however, only four countries had significant annualised increases in smoking prevalence between 2005 and 2015 (Congo [Brazzaville] and Azerbaijan for men and Kuwait and Timor-Leste for women). In 2015, 11·5% of global deaths (6·4 million [95% UI 5·7–7·0 million]) were attributable to smoking worldwide, of which 52·2% took place in four countries (China, India, the USA, and Russia). Smoking was ranked among the five leading risk factors by DALYs in 109 countries and territories in 2015, rising from 88 geographies in 1990. In terms of birth cohorts, male smoking prevalence followed similar age patterns across levels of SDI, whereas much more heterogeneity was found in age patterns for female smokers by level of development. While smoking prevalence and risk-deleted DALY rates mostly decreased by sex and SDI quintile, population growth, population ageing, or a combination of both, drove rises in overall smokingattributable DALYs in low-SDI to middle-SDI geographies between 2005 and 2015. Interpretation The pace of progress in reducing smoking prevalence has been heterogeneous across geographies, development status, and sex, and as highlighted by more recent trends, maintaining past rates of decline should not be taken for granted, especially in women and in low-SDI to middle-SDI countries. Beyond the effect of the tobacco industry and societal mores, a crucial challenge facing tobacco control initiatives is that demographic forces are poised to heighten smoking's global toll, unless progress in preventing initiation and promoting cessation can be substantially accelerated. Greater success in tobacco control is possible but requires effective, comprehensive, and adequately implemented and enforced policies, which might in turn require global and national levels of political commitment beyond what has been achieved during the past 25 years.
Most differences, shortcomings and contradictions regarding voluntary informed consent for participation in clinical research relate to the South African-specific guidance documents, i.e. South African Guidelines for Good Practice in the Conduct of Clinical Trials with Human Participants in South Africa (2006) and Ethics in Health Research: Principles, Structures and Processes (2004). These documents do not fulfil all the ethical and legal requirements for voluntary informed consent for clinical research participation in South Africa. International guidance documents reflect the minimum of the ethical requirements for the conduct of clinical research. Country-specific documents should be updated and aligned with relevant legislative and legal principles of that jurisdiction to ensure that research participants are adequately protected. The South African-specific guidance documents therefore require revision to address these deficiencies.
