Constructing ‘exceptionality’: a neglected aspect of NHS rationing

The principle of exceptionality involves assessing whether a patient is sufficiently different from the generality of patients to justify providing a treatment, such as an expensive cancer drug, not approved for routine funding. In England, individual requests for certain high-cost treatments are considered by funding request panels that examine exceptionality alongside treatment efficacy and cost as the main criteria for funding. This was also the case in Wales until September 2017. Our paper draws on audio recordings of panel meetings and interviews in a Welsh Health Board to investigate how exceptionality was constructed in discussions. It focuses on the combination of different decision criteria in meeting talk, particularly regarding the discourses associated with efficacy and exceptionality. Exceptionality is a malleable category that raised questions about the evidence-based nature of panel decision making. For example, the paper discusses the use of subgroup data from trials and the difficulty of deciding how small a subgroup of patients should be before it is deemed exceptional. Determining exceptionality has been a key mechanism for deciding that a minority of NHS patients can still receive high-cost treatments not routinely provided for all. As a neglected rationing mechanism

The information gap for children and young people with acquired brain injury

© 2019 The Author(s). Statement of Purpose This study explored the information requirements of children/youth with an acquired brain injury. Methods An on-line survey (n=16), focus group (n=5) and in-depth semi-structured interviews (n=3) elicited the views of 24 children/youth with ABI. A priori thematic coding was used to analyse the data. Results Five themes emerged: stage and age, school, friendship and peers, delivery methods and information content. The desired information changes over time depending on age and time since injury. Children/youth want their friends and teachers to access information on brain injury. Children/youth want information delivered through a range of channels, including videos (featuring genuine case studies), apps and board games. Children/youth wanted information specific to their injury, information on brain injury more generally, and practical strategies for overcoming problems. Conclusions Children/youth with ABI were able to express views about their information needs, which change over time and include a range of channels

Differences in the quality of primary medical care for CVD and diabetes across the NHS: evidence from the quality and outcomes framework

Background: Health policy in the UK has rapidly diverged since devolution in 1999. However, there is relatively little comparative data available to examine the impact of this natural experiment in the four UK countries. The Quality and Outcomes Framework of the 2004 General Medical Services Contract provides a new and potentially rich source of comparable clinical quality data through which we compare quality of primary medical care for coronary heart disease (CHD), stroke, hypertension and diabetes across the four UK countries. <p/>Methods: A cross-sectional analysis was undertaken involving 10,064 general practices in England, Scotland, Wales and Northern Ireland. The main outcome measures were prevalence rates for CHD, stroke, hypertension and diabetes. Achievement on 14 simple process, 3 complex process, 9 intermediate outcome and 5 treatment indicators for the four clinical areas. <p/>Results: Prevalence varies by up to 28% between the four UK countries, which is not reflected in resource distribution between countries, and penalises practices in the high prevalence countries (Wales and Scotland). Differences in simple process measures across countries are small. Larger differences are found for complex process, intermediate outcome and treatment measures, most notably for Wales, which has consistently lower quality of care. Scotland has generally higher quality than England and Northern Ireland is most consistently the highest quality. <p/>Conclusion: Previously identified weaknesses in Wales related to waiting times appear to reflect a more general quality problem within NHS Wales. Identifying explanations for the observed differences is limited by the lack of comparable data on practice resources and organisation. Maximising the value of cross-jurisdictional comparisons of the ongoing natural experiment of health policy divergence within the UK requires more detailed examination of resource and organisational differences

Paradox as invitation to act in problematic change situations

It has been argued that organizational life typically contains paradoxical situations such as efforts to manage change which nonetheless seem to reinforce inertia. Four logical options for coping with paradox have been explicated, three of which seek resolution and one of which ‘keeps the paradox open’. The purpose of this article is to explore the potential for managerial action where the paradox is held open through the use of theory on ‘serious playfulness’. Our argument is that paradoxes, as intrinsic features in organizational life, cannot always be resolved through cognitive processes. What may be possible, however, is that such paradoxes are transformed, or ‘moved on’ through action and as a result the overall change effort need not be stalled by the existence of embedded paradoxes

Championing survival : connecting the unknown network of responders to address out-of-hospital cardiac arrest

Early intervention for out-of-hospital cardiac arrest (OHCA) presents a challenge for Emergency Medical Services (EMS) across Europe. Strategies designed to address this include education and training initiatives for citizens and building CPR skills capacity and awareness amongst health care professionals. However, there is a need to improve access to volunteer first responders who can commence CPR and defibrillate before the arrival of EMS. In the UK, initiatives such GoodSAM have integrated crowdsourcing technology with ambulance services to allow them autonomy in alerting responders to OHCAs which is parallel to an EMS dispatch. These services are building capacity to improve the initial ‘call for help’ and time to commence CPR and defibrillation if indicated. The next step is to identify and implement appropriate methods for public engagement, involvement and eventual networking of resources with statutory bodies such as local EMS. As crowdsourcing volunteer responders is at an early stage, there is a need to determine whether crowdsourcing is associated with patient outcomes, what its impact is on those responding to OHCA, whether it facilitates or impedes current services, and whether it is a safe and cost effective way to involve citizens to intervene in the community during cardiac arrest or other medical emergencies? Addressing such issues is likely to provide further insight into the role and effectiveness of new technologies and their potential impact on the wider community

A national analysis of trends, outcomes and volume-outcomes relationships in thyroid surgery

OBJECTIVES: Thyroid conditions are common and their incidence is increasing. Surgery is the mainstay treatment for many thyroid conditions, and understanding its utilisation trends and morbidity are central to improving patient care. DESIGN: An N=near-all analysis of the English administrative dataset to identify trends in thyroid surgery specialisation, volume-outcome relationships, and the incidence and risk factors for short- and long-term morbidity. MAIN OUTCOME MEASURES: Between 2004 and 2012, 72594 patients underwent elective thyroidectomy in England. Information about age, sex, morbidities, thyroid disease and surgery, adjuvant treatments, and complications including hypocalcaemia and vocal palsy were recorded. RESULTS: Mean age at surgery was 49±30 and a female predominance (82%) was observed. Most patients underwent hemithyroidectomy (51%) or total thyroidectomy (32%). Patients underwent surgery for benign (52.5%), benign inflammatory (21%), and malignant (17%) thyroid diseases. Thyroid surgery grew by 2.9% a year and increased in specialization. Increased surgeon volume significantly reduced lengths of stay: the proportion of length of stay outliers fell from 11.8% for patients of occasional thyroidectomists (50 thyroidectomies a year). Post-discharge vocal palsy and hypocalcaemia occurred in 1.87% and 1.58% of cases respectively. High-volume surgeons had a reduced incidence of vocal palsy and volumes >30 were consistently protective. CONCLUSIONS: Thyroid surgery is increasingly specialised. High-volume surgeons achieve lower complications rates, including lower vocal palsy rates, and length of stay. This article is protected by copyright. All rights reserved

'Did not attends' in children 0-10: a scoping review

Patients who do not attend (‘DNA’) health appointments have been identified as a service problem incurring significant costs to the NHS. In order to explore the causes, effects and costs of child DNAs, we carried out a scoping study to map the literature and identify gaps in the research. Given the breadth of issues underpinning DNAs, a scoping study, including research studies, audits, policy documents and conference abstracts, was the most useful way to map the field. To foster public and patient participation, we sought advice from parents participating in the National Children's Bureau's Family Research Advisory Group. From a pool of 1997 items, we found few UK studies with non-attendance of 0–10 year olds as a primary focus, though many more incidentally reported DNA rates. Overall, four topics predominated: the conceptualization of DNAs; the correlates of non-attendance; initiatives to reduce non-attendance; and the relationship between non-attendance and safeguarding. The Family Research Advisory Group identified broadly similar issues, but with a stronger emphasis on communication and practical matters. While there may be circumstances where failing to attend appointments makes little or no difference to a child (or even benefits them) it is likely that there are children whose health or well-being are compromised as a result of failing to attend appointments. Both ‘over’ and ‘under'-attendance can be a source of anxiety to health professionals. Areas where further work is needed include robust evaluation of the effectiveness, cost-effectiveness and maintenance of measures to reduce DNAs and a better understanding of the relationship of safeguarding to non-attendance

Developing new ways of measuring the quality and impact of ambulance service care: the PhOEBE mixed-methods research programme

Background Ambulance service quality measures have focused on response times and a small number of emergency conditions, such as cardiac arrest. These quality measures do not reflect the care for the wide range of problems that ambulance services respond to and the Prehospital Outcomes for Evidence Based Evaluation (PhOEBE) programme sought to address this. Objectives The aim was to develop new ways of measuring the impact of ambulance service care by reviewing and synthesising literature on prehospital ambulance outcome measures and using consensus methods to identify measures for further development; creating a data set linking routinely collected ambulance service, hospital and mortality data; and using the linked data to explore the development of case-mix adjustment models to assess differences or changes in processes and outcomes resulting from ambulance service care. Design A mixed-methods study using a systematic review and synthesis of performance and outcome measures reported in policy and research literature; qualitative interviews with ambulance service users; a three-stage consensus process to identify candidate indicators; the creation of a data set linking ambulance, hospital and mortality data; and statistical modelling of the linked data set to produce novel case-mix adjustment measures of ambulance service quality. Setting East Midlands and Yorkshire, England. Participants Ambulance services, patients, public, emergency care clinical academics, commissioners and policy-makers between 2011 and 2015. Interventions None. Main outcome measures Ambulance performance and quality measures. Data sources Ambulance call-and-dispatch and electronic patient report forms, Hospital Episode Statistics, accident and emergency and inpatient data, and Office for National Statistics mortality data. Results Seventy-two candidate measures were generated from systematic reviews in four categories: (1) ambulance service operations (n = 14), (2) clinical management of patients (n = 20), (3) impact of care on patients (n = 9) and (4) time measures (n = 29). The most common operations measures were call triage accuracy; clinical management was adherence to care protocols, and for patient outcome it was survival measures. Excluding time measures, nine measures were highly prioritised by participants taking part in the consensus event, including measures relating to pain, patient experience, accuracy of dispatch decisions and patient safety. Twenty experts participated in two Delphi rounds to refine and prioritise measures and 20 measures scored ≥ 8/9 points, which indicated good consensus. Eighteen patient and public representatives attending a consensus workshop identified six measures as important: time to definitive care, response time, reduction in pain score, calls correctly prioritised to appropriate levels of response, proportion of patients with a specific condition who are treated in accordance with established guidelines, and survival to hospital discharge for treatable emergency conditions. From this we developed six new potential indicators using the linked data set, of which five were constructed using case-mix-adjusted predictive models: (1) mean change in pain score; (2) proportion of serious emergency conditions correctly identified at the time of the 999 call; (3) response time (unadjusted); (4) proportion of decisions to leave a patient at scene that were potentially inappropriate; (5) proportion of patients transported to the emergency department by 999 emergency ambulance who did not require treatment or investigation(s); and (6) proportion of ambulance patients with a serious emergency condition who survive to admission, and to 7 days post admission. Two indicators (pain score and response times) did not need case-mix adjustment. Among the four adjusted indicators, we found that accuracy of call triage was 61%, rate of potentially inappropriate decisions to leave at home was 5–10%, unnecessary transport to hospital was 1.7–19.2% and survival to hospital admission was 89.5–96.4% depending on Clinical Commissioning Group area. We were unable to complete a fourth objective to test the indicators in use because of delays in obtaining data. An economic analysis using indicators (4) and (5) showed that incorrect decisions resulted in higher costs. Limitations Creation of a linked data set was complex and time-consuming and data quality was variable. Construction of the indicators was also complex and revealed the effects of other services on outcome, which limits comparisons between services. Conclusions We identified and prioritised, through consensus processes, a set of potential ambulance service quality measures that reflected preferences of services and users. Together, these encompass a broad range of domains relevant to the population using the emergency ambulance service. The quality measures can be used to compare ambulance services or regions or measure performance over time if there are improvements in mechanisms for linking data across services. Future work The new measures can be used to assess different dimensions of ambulance service delivery but current data challenges prohibit routine use. There are opportunities to improve data linkage processes and to further develop, validate and simplify these measures. Funding The National Institute for Health Research Programme Grants for Applied Research programme

Assessing relative spending needs of devolved government: the case of healthcare spending in the UK

The system used to allocate resources to the UK's devolved territories, known as the Barnett formula, takes no account of the relative expenditure needs of the territories. In this paper we investigate the prospects of developing a needs based model for allocating healthcare resources to Scotland, Wales and Northern Ireland. We compare the method used by the National Health Service in England to allocate resources geographically within England with the method used by the NHS in Scotland to allocate resources to territorial Health Boards. By applying both approaches to the UK's devolved territories, we are able to examine similarities and differences in the two methods, and explore implications for an assessment of the relative healthcare expenditure need of each territory. The implications for the way in which revenue is distributed to Wales, Scotland and Northern Ireland are discussed