Sense-making strategies and help-seeking behaviours associated with urgent care services: a mixed-methods study

Article history

The research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 14/19/16. The contractual start date was in October 2015. The final report began editorial review in February 2018 and was accepted for publication in July 2018. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.

Declared competing interests of authors

Catherine Pope reports personal fees from UK higher education institutions, personal fees from the Norwegian Centre for E-health Research, personal fees from Macmillan, McGraw-Hill Education, John Wiley & Sons and the Authors’ Licensing and Collecting Society, grants from Health Education England Wessex and Health Foundation, other from University Hospital Southampton NHS Foundation Trust and other from the National Institute for Health Research (NIHR) Clinical Research Network, outside the submitted work. She is a member and Deputy Director of NIHR Collaboration for Leadership in Applied Health Research and Care Wessex, and a member of the Health Services and Delivery Research (HSDR) Researcher-led Panel. Joanne Turnbull is a current co-collaborator on another HSDR programme project (15/136/12).

Disclaimer

This report contains transcripts of interviews conducted in the course of the research and contains language that may offend some readers.

Copyright statement

© Queen’s Printer and Controller of HMSO 2019. This work was produced by Turnbull et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

2019 Queen’s Printer and Controller of HMSO

Rationale

In England, recent policy has called for a focus on providing urgent care services that ‘minimise disruption and inconvenience’ for patients. 1 Local and national policy has centred on guiding patients to ‘get the right advice in the right place, first time,’2 reducing unnecessary emergency department (ED) attendances by providing more responsive urgent care services and providing better support for people to self-care. 1–3 However, the proliferation of different services has created an evolving, complex urgent care landscape for people to access and navigate and this has implications for the decisions and choices that are made. Effective service provision requires a deeper understanding of the factors influencing people’s help-seeking and their choices about accessing care.

The aim of our study was to identify sense-making strategies and help-seeking behaviours that can help to explain the utilisation of urgent care services. We set out to develop a conceptual framework of sense-making and help-seeking that NHS managers and commissioners could use as a foundation for health care planning. This report presents our study of how the public, health-care providers, policy-makers and decision-makers define and make sense of the urgent care landscape. It explores how service users understand and seek help, looking in detail at their choices, how they access urgent (and emergency) care services and the ‘work’ that this may involve for patients and their carers. We focus on three groups:

1. health service policy-makers – for example health-care commissioners, civil servants, and politicians in local and national government

2. health-care providers and health professionals – the organisations that provide and deliver health services and the staff employed by those services

3. health service users – patients and the general public who access and use services.

The remainder of Chapter 1 explores the urgent care context and outlines the aims and conceptual framework for the study.

Urgent care context

In most developed countries, including the UK, the USA, Canada and Australia, urgent care services are often positioned in an ill-defined space somewhere between general practice and emergency care. 1,4–7 Urgent care services are designed to assess and manage unscheduled or unforeseen conditions that arise in the out-of-hours period (typically 18:30 to 08:00 on weekdays, and all day at weekends and on public holidays). 8 The UK Keogh review, for example, describes urgent care as ‘for those people with urgent but non-life threatening needs’ with the goal of delivering:

. . . care in or as close to people’s home as possible, minimising disruption and inconvenience for patients and their families

Contains public sector information licensed under the Open Government Licence v3.03

These services have evolved slightly differently across health systems and have different names, but the services offered reflect wider shifts in care provision, notably their enrolment of new technologies to support access and care delivery,9 increasing fragmentation and differentiation of services, and a consumerist approach10,11 characterised by an emphasis on patient choice. 12,13

In the UK, a range of urgent and emergency care service developments and policy initiatives have taken place since the 1980s14 (Figure 1). These have included changes to existing services (e.g. the growth of general practice out-of-hours co-operatives and the use of telephone triage in the 1990s) and the launch of new services such as the nurse-led telephone service NHS Direct (replaced by NHS 111), NHS walk-in centres (WICs), and minor injuries units (MIUs).

FIGURE 1.

Selected key developments and policy initiatives for the delivery of emergency and urgent care. Reproduced from Turner et al. 14 Contains information licensed under the Non-Commercial Government Licence v2.0.

Reproduced from Turner et al. 14 Contains information licensed under the Non-Commercial Government Licence v2.0.

A key intention of urgent care services is to act as a lever for managing demand, seeking to divert people away from overburdened and overcrowded emergency services. 1–3,15 Research suggests that between 12%16 and 40% of ED attendances can be described as ‘inappropriate’,17 and some 40% of patients are discharged from the ED without treatment. 1 This finding is used to highlight a potential mismatch between the purposes for which services are provided and how they are used. Much of the existing research exploring patient help-seeking predates the expansion in the range of urgent care services offered and the introduction of the NHS 111 telephone triage service, making our investigation into sense-making and help-seeking a timely addition to the evidence base.

How this study builds on our previous work and other work

The study reported here extends our previous research, Health Services and Delivery Research (HSDR) 08/1819/217, completed in 2010,18 and HSDR 10/1008/10, completed in 2012. 19 The first of these examined the use of a single clinical decision support system called NHS Pathways used in three urgent and emergency care settings, focusing on how call handlers triaged and managed patients seeking 999 ambulance services and/or out-of-hours urgent care. The second expanded on this to examine the work and workforce implications of NHS 111 and was able to look at the telephone service itself, the technologies used and the wider network of urgent care provided in primary care. Both of these studies provided a deep and detailed understanding of the new NHS 111 services and delivered insights into the provision of urgent and emergency care in the English NHS. The questions to be addressed by the study move beyond our earlier organisational focus to explain how patients seek help and make choices in the increasingly complex landscape of service provision. Our analyses of call-handling services suggested that patients and the public were confused and that there was considerable variation in their experiences and knowledge of these services. Although the NHS 111 telephone service was conceived to direct patients to the most appropriate service, there is limited evidence that this has been achieved,20 and we wanted to understand this from the perspective of patients and the public, as well as of health-care professionals and policy.

By analysing patients’ experiences of urgent care, we seek to understand both the work required by patients to make sense of and navigate health care (i.e. the work or effort required) and the ways in which changes in provision (including the use of new technologies such as NHS Pathways) have become routine and embedded (i.e. normalised) as strategies for managing health-care needs.

Research aims and objectives

The overarching aim of the study was to identify sense-making strategies and help-seeking behaviours that explain the utilisation of urgent care services. We set ourselves the following objectives:

1. to describe how patients, the public, providers (professionals and managers) and shapers (commissioners and policy-makers) define and make sense of the urgent care landscape

2. to explain how sense-making influences help-seeking strategies and patients’ choices in accessing and navigating available urgent (and emergency) care services

3. to analyse the ‘work’ (the activities and tasks) for patients involved in understanding, navigating and choosing to utilise urgent care

4. to explain urgent care utilisation and identify modifiable factors in urgent care patient decision-making.

Theoretical background to the study

The underlying conceptualisation informing the study is that service users, professionals and providers are working within a system of emergency and urgent care. Urgent care services are part of a complex landscape that includes general practice out of hours, WICs and NHS 111, and have considerable overlap with EDs and 999 services (as well as wider links with other services such as general practice, pharmacies, social care and self-care). Given the well-recognised overlap between urgent and emergency care help-seeking, it is relevant to consider urgent care in a wider context that includes ambulance services, hospital EDs and a range of designated urgent care services.

For the current study we drew on sense-making perspectives21 to help understand contested meanings surrounding urgent care and to see how this might influence people’s attitudes and behaviours around service use (objectives 1 and 2). Sense-making can be understood as individuals’ attempts to structure the unknown by putting things into ‘frameworks, comprehending, redressing surprise, constructing meaning, interacting in pursuit of mutual understanding, and patterning’. 21,22 These perspectives about sense-making have encouraged us to consider patient decision-making, help-seeking behaviour and choices in ways that avoid the simple binaries of ‘appropriate’ or ‘inappropriate’ service use.

The study was informed by the notion of the ‘work’ that people do in understanding, navigating and choosing to use urgent care (objective 3). There are many theories that have conceptualised patient work, such as that of Corbin and Strauss23 and, more recently, burden of treatment theory. 24 Previous theorising around patient work has tended to focus on chronic illness, but it is a useful means of understanding patient decision-making and behaviours concerning urgent care. Existing help-seeking models are explored further in Chapter 6.

Outline of the report

The remainder of this report is structured as follows. Chapter 2 details our methodological approach. Chapter 3 presents the findings from the literature and policy review. Chapters 4 and 5 present the findings from the empirical work. Specifically, Chapter 4 examines how different groups make sense of urgent and emergency care (objective 1), and Chapter 5 examines the help-seeking behaviour, choices and work that services users in accessing, navigating and using urgent care services (objectives 2 and 3). Chapter 6 describes the development of a conceptual model of urgent care help-seeking. Chapter 7 presents the discussion, conclusions, and implications of this work (objective 4).

Research design

The study used a mixed-methods sequential design consisting of three integrated work packages (WPs) (Figure 2). The first WP (WP1) comprised a literature review and four citizens’ panels with service users and health-care professionals. It aimed to describe and explain how patients and the public, providers (professionals and managers), and shapers (commissioners and policy-makers) define and make sense of the urgent care landscape (objective 1). The second WP (WP2) used serial qualitative interviews to examine the role of sense-making in patient help-seeking strategies accessing and navigating available urgent (and emergency) care services (objectives 1 and 2) and to identify and describe the ‘work’ for people of navigating and using urgent care (objective 3). In WP3 we integrated our analyses of these data to construct a conceptual model of urgent care help-seeking behaviour that explains urgent care utilisation and identifies modifiable factors that affect urgent care patient decision-making (objective 4).

FIGURE 2.

Diagram of the research objectives and study design.

Methods were integrated in two ways. The first was developmentally, such that the findings from one WP informed the design and analysis of subsequent components. The literature review complemented and shaped the focus of the study, as well informing the conduct of the subsequent data collection. The meanings and definitions of urgent care identified in the review were explored in the empirical data collection with service users (interviews in WP2) and with health-care professionals (the citizens’ panels in WP1). The literature review also informed the conceptual model (WP3). Second, the results were integrated by exploring convergence and contradiction in the findings derived from different methods, using this process of ‘crystallisation’ to provide a more comprehensive account than that offered by a single method. 25

Work package 1: literature review and citizens’ panels

Literature review

A structured review of the published literature from 1990 onwards was undertaken with the primary aim of generating meanings and definitions of urgent care from the multiple perspectives of policy-makers, service providers and patients/the public. This was informed by Weick’s sense-making perspective21,26 alerting us to the possibility of contested definitions and meanings of urgent care, which in turn can have implications for people’s attitudes and behaviours associated with the use of urgent care services.

The review included policy documents (and related grey literature) as well as empirical research literature published since 1990 relating to urgent and emergency care. Although not an exhaustive systematic review, it sought to examine the evidence in relation to the following questions:

1. How do service users (patients and the public), providers (professionals and managers) and shapers (commissioners and policy-makers) define and understand urgent care differently?

2. Does the way in which patients and professionals perceive urgency influence the way in which patients seek help for urgent care problems?

Conducting the review

A review team was established to develop and manage the review (JT, GM and JP). We employed the expertise of an information specialist (Karen Welch) to undertake literature searching, and, with input from the team, Karen Welch developed the search strategy [using both free-text and database Medical Subject Headings (MeSH) terms where appropriate]. Joanne Turnbull, Gemma McKenna and Jane Prichard identified, screened and critically appraised the literature identified. Critical appraisal was guided by the Critical Appraisal Skills Programme (CASP) tools appropriate to different types of research designs. 27

Identification and review of key policy documents and grey literature

Our review focused on policy documents and other grey literature since 1990 because many of the developments in urgent care services occurred from the 1990s onwards (see Figure 1) and we focused on the literature that could shed light on policy for urgent or unscheduled care in the UK that also included relevant references to emergency care policy. The search of the SIGLE (System for Information of Grey Literature in Europe) database focused on formal, government-level policy and local-/practice-level policies and guidelines. Specific governmental and health websites were also searched. Key sources are shown in Table 1. Reports from individual urgent care centres (UCCs) and wider policy documents dealing with health-care delivery were included when relevant (e.g. NHS Plan in England, White Papers). In total, 60 documents and information sources were reviewed (last searched November 2017). The 44 sustainability and transformation partnerships proposals were not examined in detail but were briefly examined to confirm that they did not contain important information about urgent care that was not represented in the other documents obtained.

TABLE 1 - Key sources of policy documents

Type of organisation or body	Key sources
NHS organisations, Department of Health and Social Care and government sources	Department of Health and Social Care, NHS England, NHS Wales, NHS Scotland, Scottish Government Health and Social Care, House of Commons Committees reports, NHS Evidence, NHS Choices website
Royal colleges and professional associations	Royal College of Emergency Medicine, Royal College of General Practitioners, Royal College of Nursing, British Medical Association
Charities and independent bodies	The King’s Fund, The Patient Association, The Nuffield Trust, National Audit Office, Healthwatch England, Urgent Health UK

Primary documentary research methods were used28 to identify and compare policy and service provider meanings of urgent and unscheduled care. Members of the research team read the documents to identify definitions, and a spreadsheet containing research questions about the policy context and definitions of urgent care was used to extract, examine, summarise and synthesise key information and concepts (Table 2).

TABLE 2 - Questions underpinning the review

Theme	Questions asked in the data extraction
Policy context	What is the status of the text? Is it part of a wider text (e.g. a series of policy documents)? Who is the author? When was the document written? What other events were happening at the time? Who is the intended audience? Does it set a particular agenda?
Defining urgent care and examining meaning	Does the document explicitly define urgent care? If so, how does it define urgent care? What language is used to define or describe ‘urgent care’? What are the key words associated with it? What assumptions are made about what urgent care ‘is’ or ‘is not’? Have these changed over time? What did policy-makers aim to accomplish by introducing a new service or by making a change to the way urgent care was organised or delivered? What were the assumptions policy-makers made about patient behaviours (access and use of services) and their needs?

Identification and review of the research literature

Structured searches of the research literature were conducted in two stages. First, a detailed search on MEDLINE used a wide range of search terms and a combination of free-text and MeSH terms as well as appropriate subheadings (see Appendix 1). This initial search retrieved a large number of results and was refined to reduce the number of results. One early modification was to include the term ‘ambulatory care’ only if it was linked to urgent or unscheduled care as the term retrieved a large number of results related to hospital outpatient care rather than urgent care. The strategy combined terms relating to urgent care and non-urgent use of emergency care services (‘Set 1’) with terms that focused on patient experiences, for example patient help-seeking and decision-making (‘Set 2’), to produce a final search.

Targeted searches were then undertaken of MEDLINE In Process & Other Non-Indexed Citations, EMBASE, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), ProQuest Sociological Search and PsycINFO around urgent and emergency care use and help-seeking (see Appendix 1). Searching was undertaken in November 2015, and updated in September 2017 to identify additional relevant literature. Studies were included if they met the criteria outlined in Table 3. International evidence was included to consider alternative models of urgent care in comparable health-care systems.

TABLE 3 - Inclusion and exclusion criteria for the literature review

Criteria	Included	Excluded
Focus of study	Patient, health-care professional and provider perceptions of urgent and emergency care Patient decision-making, knowledge, beliefs, attitudes, expectations and experiences related to conceptualisations of urgent and emergency care	Evidence related to specific clinical interventions for specific conditions
Health service	Urgent care (e.g. general practice out of hours; NHS Direct; WICs; MIUs, NHS 111) Emergency care where focus is about the use of ED or ambulance service for ‘non-urgent’ or ‘primary care’ reasons	General practice Hospital care not related to the ED (e.g. elective admissions; outpatients clinics)
Type of study/publication	Qualitative and mixed-methods studies Quantitative studies of ED use that focused on non-urgent, ‘inappropriate’ use or on help-seeking behaviour High-quality literature reviews	Editorials; opinion pieces; letters Conference abstracts Low-quality/unstructured reviews Quantitative or statistical reports of rates of service utilisation, satisfaction or referral
Study setting	UK, Europe, USA, Canada, Australia, New Zealand	All others
Dates of publication	1990–2017	Prior to 1990
Language	English	Non-English

The final search retrieved 7634 results after deduplication. Twenty-six additional papers were identified through other sources (e.g. reference lists, general searching) (Figure 3). In total, 144 papers were included in the final review. Key information about the content of the papers was summarised in tables as part of the critical appraisal process against the questions in the CASP checklists, augmented with additional questions from Table 2. This aided the synthesis and identification of main themes.

FIGURE 3.

Flow diagram of search process using PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2009.

Citizens’ panels

A number of approaches to seeking public views is identified in the literature, including citizens’ juries and citizens’ panels. We drew on a modified citizens’ panel approach. One of the defining features of a citizens’ panel is to:

bring together a small group of people . . . and present them with a policy question. The panel listen to expert witnesses, examine the evidence, deliberate on the issues and arrive at a policy decision or set of recommendations.

p. 78829

The aim of this type of panel is to ensure deliberative and inclusive involvement directed at executing high-quality citizen contributions that can inform the policy-making process. 30 Citizens’ panels permit participants to ‘engage with evidence, deliberate and deliver recommendations on a range of complex and demanding topics’ (p. 6). 31 They provide an opportunity for citizens to challenge managerial and professional viewpoints and offer a chance for alternative perspectives to be explored. 32 We used citizens’ panels to examine urgent and emergency care policy and to deliberate on the provision of urgent and emergency care, and we asked the participants to help develop agreed definitions of urgent care.

Participants and recruitment

Guided by discussions within the research team and with our advisory board, we agreed that our main criteria for the selection of participants should maximise variation in the people and professions involved, drawn from the urgent and emergency care network of actors. Four separate panels were convened to debate and offer direction about how to define and conceptualise urgent health care. Our ‘citizens’ were drawn from (1) the Polish community, (2) a wider general population, (3) health professionals and (4) members of Clinical Commissioning Groups (CCGs). We purposively sampled to represent a range of perspectives and to include public, provider and policy-maker perspectives.

In our original research proposal, three panels (general public, health-care professionals and NHS commissioners) were envisaged. However, following a review of the literature, and discussion within the advisory group and research team, another panel was included comprising Polish participants. This offered an opportunity to include a group who could be characterised as more ‘marginalised’,29 and whom few previous studies had consulted on the topic of urgent care. It was also a chance to explore the views of recent migrants who have the unique experiences of two very different health-care systems. Our public panels (general population and the Polish community) reflected the populations also chosen for the more detailed qualitative interviews in WP2 (see Work package 2: the qualitative interviews).

Participants in the public panels were recruited via local community groups and networks (e.g. through community centres, local groups and organisations) and reflected the diversity of study setting (Table 4). They were recruited to act as citizens rather than as expert patients or patient representatives, and so they had varying experiences of health-care need and service use. Health-care professional and provider participants were recruited primarily from a single local NHS trust, along with some who were recruited from health-care education programmes at the university (see Table 4). The participants in the panel that was designed to elicit the views of those engaged in local policy-making and shaping were approached via CCG contacts and were representatives of local commissioning bodies (see Report Supplementary Material 1 and 2).

TABLE 4 - Characteristics of citizens’ panel members

Panel group	Number of participants	Characteristics of participants	Venue of panel
Mixed general public	12	6 female and 6 male	Community centre
Polish community	12	11 female and 1 male	University premises
Health-care professionals	14	10 paramedics, student paramedics and paramedic managers; 3 student nurses; 1 student mental health nurse	NHS organisation meeting room
NHS shapers and commissioners	3	1 commissioner and 2 representatives of local CCGs	University premises

In total, 41 participants took part in the panels. The shapers and commissioners’ panel had three participants because of some late decisions not to attend, but the three other panels had between 12 and 14 participants. Public panel members ranged in age from 18 years to ≥ 75 years. The panel format was face-to-face deliberation over 6 hours in a single day, except for the shapers and commissioners’ panel, which took 4 hours, reflecting the smaller number of members (see Table 4). Public panel participants were offered £120 to take part [calculated in line with National Institute for Health Research (NIHR) INVOLVE rates]33 as recompense for the significant time commitment required to participate.

Conducting the citizens’ panels

Each panel took place over one day and was designed to explore a set of questions informed by the literature review, which included:

• How would you like to see urgent care described and defined?

• Are there circumstances in which urgent care services are particularly appropriate (or inappropriate)?

• What benefits and risks do you think that urgent care services have for (1) patients and (2) health-care providers?

• What principles would you wish to see underpinning developments in the provision of urgent care services?

• What do you think are the key differences between urgent and emergency care?

• What range of services do you think come under the heading of ‘urgent care’?

• Do you think urgent care services – and perceptions of urgent care – have changed over time?

• As a group how would you describe and define ‘urgent care’?

The research team prepared a set of resources (drawing on web links, videos and other visual resources) and prepared activities designed to facilitate discussion (Figure 4). Prior to the panels taking place, four individuals (drawn from the public panels) acted as a panel advisory group. These individuals were asked for their feedback about some aspects of the panel (e.g. the use of some resources in some of the activities, and the format of some activities, such as whether or not to use small discussion groups). We sought their views (through a series of telephone and e-mail discussions) on the best ways to support and facilitate citizens’ discussions during the panel to ensure that panel members would be comfortable with particular activities and tasks.

FIGURE 4.

Urgent care citizens’ panels: process model.

All participants were sent introductory material including policy statements and findings generated from the literature review. Activities on the day included:

• brainstorming words associated with urgent care

• discussion of hypothetical scenarios or case studies derived from the literature review

• discussions about perceptions of different services prompted by pictures of urgent care and emergency services

• discussion and debate centred on the diagram of urgent care presented in the Keogh review. 1

Two members of the research team attended each panel to facilitate group discussion. One of the team (GM) led the facilitation and one of the team (JT) supported the day’s events. Members of the research team adopted a neutral role, facilitating participation to ensure that the discussion stayed on topic, and to derive recommendations and reach a consensus. Each panel commenced with an introduction to the study, and then introducing panel members to each other. Some activities took place in small groups, facilitated by Joanne Turnbull and Gemma McKenna. The panel were encouraged to question the researchers about the evidence. Activities also included a large group discussion and agreement on definitions of and terms for urgent care by the end of the day, facilitated by Gemma McKenna and Joanne Turnbull. Data generated from the panel were recorded in contemporaneous notes taken by team members and by audio-recordings, as well as some written data (flip chart summaries, diagrams, and sticky notes used in the discussions). Notes and transcripts of discussions were anonymised.

Work package 2: the qualitative interviews

Qualitative interviews were used to examine, in depth, the role of sense-making in help-seeking strategies and how the respondents accessed and navigated services, and to identify and describe the ‘work’ entailed in navigating and using urgent care (objectives 1–3). To obtain a rich description, qualitative semistructured interviews were undertaken with three carefully selected groups of service users who reflected a diverse range of experiences of urgent care need (see Selection and recruitment of interview participants). A second interview was conducted with a sample of participants to explore the items raised in more detail and to overcome some of the weaknesses associated with ‘one-shot’ interview studies. This use of serial qualitative interviews proved to be effective in building rapport and relationships between interviewee and interviewer, and to generate the kinds of private accounts that may not have been revealed in a single interview. 34 This design added a prospective dimension to the study, offering the respondents and researcher time and space to reflect on and revisit topics from the initial interview, and capture changes between the two time points. The first interview probed how interviewees distinguished between routine, urgent and emergency care needs, and understandings of service availability, and examined attitudes and beliefs about urgent care services. The second interview (conducted between 6 and 12 months after the first) examined, in more detail, interviewees’ experiences of using urgent care services in the intervening months (if at all) and explored the ‘work’ entailed when navigating and accessing care.

Work package 3: integrating the analysis to build a conceptual model

Data analysis began alongside data collection, initially focused on the data generated during the citizens’ panels. We undertook a thematic analysis of these data, broadly following the stages described by Braun and Clarke,47 familiarising ourselves with the data, generating initial codes and categories and then identifying themes. To facilitate analysis and discussion among the team, grids and matrices were used to chart and compare the data, and this involved the wider research team, comprising fieldworkers, researchers and clinicians.

Qualitative interview data were analysed using a data clinic approach to share and interpret data collectively, building emergent themes and developing narrative and interpretive summaries. Core team members (GM, CP, JP, AR and JT) initially read and open coded a sample of transcripts independently, and these early codes were discussed and refined to form the basis for a coding scheme that was refined and developed and applied to all transcripts. We drew on a framework analysis approach,48 looking across cases and exploring similarities and differences (paying attention to contradictory cases). These analyses were informed by conceptual ideas drawn from previous research and theorising, including work on sense-making and patient work. As the analysis developed, the themes were refined using matrix techniques to facilitate further comparisons and interpretations. Emerging themes and interpretations were shared with patient and public involvement (PPI) and advisory group members to check the credibility of these and further refine our analyses.

To build a conceptual model to explain urgent care utilisation, we drew together the findings from the literature review, citizens’ panels (WP1) and qualitative interviews (WP2) by examining codes that:

1. described and explained different conceptualisations/definitions of urgent care

2. identified, characterised and explained sense-making strategies that influenced help-seeking choices and behaviours

3. identified and characterised the ‘work’ involved in understanding, navigating and choosing to utilise urgent care.

We created lists, and taxonomies, of influences that shaped choices and reported behaviours. We recognised that interaction with urgent care services was not simply produced by individual help-seeking behaviour but was also a collective phenomenon (such that narratives and processes are shaped by the views and behaviours of multiple participants), and we used this understanding to underpin our analysis. We then explored the identified factors, exploring how they were formed related to each other and to the contexts in which they operate. We continued to use comparative analysis to identify factors that appeared common across different data sources and different care contexts. As the analysis progressed we began to use mind maps, decision trees and logic models to map our interpretations. Our data clinics allowed us to revisit the data from WPs 1 and 2 to test emerging hypotheses concerned with how sense-making and help-seeking related to each other and to identify factors that might be modifiable, which provided the basic material for a framework from which a conceptual model of relational choices about engagement with urgent care was developed.

Ethics approval

The citizens’ panels comprised members of the public (recruited from community groups and local public networks) and health-care staff. This component of the study did not require NHS ethics approval, and was approved by the University of Southampton (Ethics and Research Governance Online, number 20217). NHS/HRA ethics review was required for the qualitative interviews (WP 2) as some participants were recruited via NHS organisations (REC reference number 16/EM/0329).

Policy definitions of urgent care

The current UK policy pertaining to the urgent and emergency care services landscape can be identified from the Urgent and Emergency Care Review. 1,3,49 This paints a picture of urgent and emergency care as a hierarchy of services that are distinct from one another. For those unable to self-care, the urgent care system is identified as providing services for serious health needs requiring quick attention, while the emergency care services are for those with the highest level of need who have more serious and potentially life-threatening conditions. This suggests a landscape of provision in which there is clarity around how the terms ‘urgent’ and ‘emergency’ are understood. However, closer scrutiny reveals that these concepts are ill-defined and inconsistently used. Few policy documents provide a specific working definition of what is meant by either an urgent or an emergency health-care ‘need’. 50–52 Instead, documents touch on these terms briefly when describing which services should be responsible for different needs,1,3 or, more often, there is simply an absence of a definition. 3,53–56

Provider and professional definitions of urgent care

Conceptualisations of urgent care from the provider and professional perspective place heavy emphasis on physiological definitions of urgent care and the extent to which these legitimise the use of services. Much of the research evidence is based on quantitative surveys of ED use rather than urgent care service use, and ‘urgency’ is discussed in narratives about the ‘inappropriate’ use of EDs and ambulance services. 71–77

Service user definitions of urgent care

Some research has examined service users’ help-seeking and decision-making in relation to both urgent and emergency care. From this we can extract some of the ways in which service users define and make sense of urgent care. Although perceived physical symptoms are important, other social and emotional cues, as well as service users’ beliefs and knowledge about health services, also influence the way in which service users define what is ‘urgent’.

Summary

‘Urgent’ or ‘emergency’? Confusing boundaries of care

We have combined the data from the panels and both interviews here to reflect participants’ initial understandings of urgent care. Before they took part in the panels or the interviews, most participants said that they had not explicitly thought about the concepts of emergency and urgent care. However, it is important to note that the research process itself challenged them to construct meanings as part of the data collection process. P9, for example, illustrates how the interview process prompted them to differentiate between urgent and emergency after initially they had viewed these terms as interchangeable:

If I mention urgent care to you, what would you think of?

I’d think of 999, or A&E, predominantly, I think, sort of, life-threatening is what I would think of.

And if I said to you emergency care, what would you think of?

I think of A&E again, but probably less 999. I don’t know why, I just think urgent is, sort of, then and there . . .

So, what do you think are the similarities and the differences between emergency and urgent care?

I don’t . . . Maybe they both involve, life-threatening as, sort of, an overview . . . I don’t know, thinking about it more, urgent sounds less like an emergency than emergency care.

Younger

The literature review of policy and research identified a clear hierarchy that placed emergency (broadly, life-threatening or serious events that need immediate attention) above urgent care (less serious conditions that require a less immediate response). Service users’ accounts were reasonably consistent with this policy view in defining ‘emergency’ and they talked about the seriousness of the symptom (life-threatening or very serious), how quickly help is required (immediately) and the response or service required (999 or ED response):

I hadn’t really thought about that before . . . well emergency I think it’s just the time scale. If it’s an emergency . . . it would needed to be dealt with now . . . but if it’s urgent it’s still, you still need it to be dealt with soon but you may live with it for a couple of hours . . . So for me emergency is the highest level of urgency and if it’s any lower level then I can either still go to A&E but wait to be treated or I could see an even lower urgency level then I can go to . . . the minor injuries unit or the GP at the lowest level.

P71, East European

Emergency is where life is threatened or health to a large degree is threatened and it has to be dealt with quickly and by highly qualified personnel I would say. Whereas urgent care there are things that still need to be attended to quickly but they wouldn’t be life-threatening.

P4, East European

For a minority of service users, the term ‘emergency’ was not necessarily associated with ED care:

Emergency care, probably something a bit less severe than A&E, but a lot of them . . . Again, there’s no real fine line, is there?

P28, older

However, defining ‘urgent’ was more challenging; there was less consensus and more uncertainty about the term. Although service users understood ‘emergency’ as a term applied to more serious, or life-threatening conditions, they also used the word ‘urgent’ to describe these health-care needs. Terms were often used interchangeably (by participants from all population groups):

Urgent care, I would think of, probably, well, an ambulance, A&E, you know, if it was urgent, yes. Otherwise it would be just a trip up the doctors to see what the problem is, you know.

Yes. OK. And if I mention emergency care, what do you think of?

Emergency care is, well, the same thing, really. Yes. I mean, if I could see there was a major problem with anything . . . well, if it really looked bad, you’d have to ring the 999, I think.

Younger

Reflecting our review of the policy literature, service users often described urgent care in relation to emergency care, using language such as ‘less urgent’ or ‘not an emergency’ to define urgent care:

Well I know that urgent care is not emergency. Emergency is life-threatening, yes? Or at least you think it’s life-threatening. I mean if somebody was in pain I definitely would think that it was emergency and they needed somebody now and then, now. But if it’s something that you thought could be not dashed off straight away I would think it was less urgent.

P29, older

A variety of different terms were used to describe urgent care. Descriptions of health conditions suitable for urgent care services ranged from ‘less serious health problems’ (e.g. ‘not critical’ or ‘minor’) to descriptions that indicated high acuity (e.g. ‘serious’, ‘life-threatening’ or ‘severe’). Similarly, when using a time frame to define urgency, the term ‘urgent’ elicited a broad range of responses ranging from ‘immediate’ to ‘be seen within a day’ (or ‘can’t wait until morning’). The public panels, particularly, suggested that ‘urgent’ need required ‘being seen there and then’, ‘immediately’, ‘instantly’ or ‘quickly’. However, when asked to suggest their own definitions of urgent care, the general public panel struggled to articulate how time factored into the need for health care:

I think I say ‘no time limit’ because once you’ve got time you get . . . if there’s a certain target once you put a time limit on it, that’s then a target . . . I mean that would have to make that a time period. Time in there, and we’ve got 24-hour care. So you’re all saying to me is around timing. That’s what we want to, to imply isn’t it? You know, it’s something that’s as soon as possible. Requiring urgent care.

CP5, general public panel

Several East European participants suggested that there was little distinction between the words ‘urgent’ and ‘emergency’ and that the terms did not directly apply to their experiences of other health-care systems. Participants from Poland and Hungary reported that both ‘urgent’ and ‘emergency’ would apply to emergency services:

Yes, [urgent might be] something that can’t wait for very long or maybe can wait longer than emergency [. . .] But maybe it’s because in . . . Polish I think we don’t have separate words for these two. Maybe that’s why . . . It’s language problem as well, but in Polish, emergency and urgent . . . urgent sounds pretty serious. So maybe that’s why we struggle to distinguish. I don’t know . . . linguistic problem.

P3, East European

We don’t use two different words, emergency and urgent. This is why for me it’s the same. Yes, not in health-care terms.

Yes, not in health-care terms. So for me it’s no different.

There’s no difference. And do you just have the term emergency in Hungarian? What would you call it . . . that would be perhaps a translation here?

So, emergency is more connected with danger, and urgent is something you have to hasten rapidly. Emergency is something that, emergencies, critical, like fire.

But not the hospital?

Yes, probably there is just one service in the hospital, like the ambulance maybe. Yes, but it’s all linked, so you don’t think the ambulance is separate. It’s just the thing that takes you from A to B and tries to preserve your life.

East European

Additional confusion was created through the use of the words ‘urgent’ and ‘emergency’ in different health-care services. For example, the words ‘urgent’ and ‘emergency’ are used in the context of same-day general practice appointments but were understood as different from ‘urgent’ or ‘emergency’ in the context of the ED. For some, daytime general practice was viewed as an urgent care service:

You’ve talked a little bit about [urgency] in terms of offering same-day appointments. Do you think that is urgent care, or do you think that’s something slightly different?

I would think that is urgent care, because . . . it is quick. It’s the same . . . it could be within a couple of hours . . . or even sooner. They sometimes say, ‘oh we can see you in half an hour’. Can you make it? . . . You can get that initial assessment really, really quickly.

East European

Right, I think if I need urgent care, I can phone up the surgery and get an answer and possibly get an appointment that day. If it is out of hours, then you dial 111 and you speak to a colleague on the end.

P7, older

The boundaries between types of health-care services were described as muddled and opaque. The range of services that the general public and health-care professional panels identified as potentially available for urgent and emergency care needs included expected answers such as 999 and the ED, NHS WICs, pharmacies, NHS 111 and general practice. However, panel members also talked about an extended network of specialist services such as mental health, end-of-life and hospice care, geriatric medicine, physiotherapy and dental services, as well as information and advice services, and non-health services including social services, the police, and patient transport. Services were often perceived as equivalent rather than hierarchical, and the boundaries between them were often viewed as flexible at best, or ambiguous. The general public panel struggled to define the boundaries of services.

There was confusion among public panels and from interview participants about what UCCs and MIUs were. Some regarded these as ‘another name for A&E’; although the commissioners’ panel suggested that the boundaries between urgent and emergency care were demarcated by the NHS 111 (urgent) and 999 (emergency) distinction, they also listed same-day GP appointments, MIUs, WICs and the ED as part of the urgent care system. The general public panel thought that pharmacies offered advice for ‘little ailments’ and were a place to ‘seek second opinion’ rather than occupying a clear position within the remit of urgent care services:

So ultimately it’s about providing services that are easier to access, that the public understand. We had a conversation here, didn’t we, about the confusion, and how do you know what to do. And actually, you know, if you’ve used services a lot you know what to do. But if you’ve had an urgent care incident, and you’ve only had one in the last 20 years, how do you know what to do? So it’s . . . For me it’s about getting policy and providers to do a bit more than stick an advert on the back of the bus.

CP6, general public, urgent care ideas exercise

Participants could articulate what particular services might be used for (e.g. NHS 111 for ‘non-emergency’ cases) but typically did not recognise ‘urgent care’ as an umbrella term for a range of services:

So 111 would be more toothache and a nosebleed and mum’s slight bleeding from her rectum . . . But an emergency is an emergency . . . yes, phoning the ambulance if there was somebody not breathing or passing out or . . .

Yes, so there’s urgent care centre, minor injuries, which you talked about with the sprains, and 111. So . . .

Urgent care - is that like an A&E or not? Is that . . . urgent care? I suppose that would be an A&E, wouldn’t it? I don’t know, I really don’t know . . . what the difference would be . . . is it a walk-in centre?

Older

Variation in what different UCCs, MIUs and WICs offer can create confusion for service users and the public. Health-care professionals acknowledged this confusion; indeed, often health professionals were equally confused:

I just think it’s so vague as well. I think that, you know, we have a problem with the definition of emergency, which people don’t tend to . . . [ ] The view of an emergency is so drastically different to a vast proportion of the public . . . And if there’s a vagueness around that, like, an urgent care centre, I mean, is even vaguer. And I don’t even think it’s just patients who don’t really appreciate what it is. I think, actually, the reality is most health-care professionals don’t really understand what an urgent care centre does [ ].

CP1, professionals’ panel

Now, if I struggle to know what unit will accept what, you know . . . They’re forever ringing up and saying ‘Will you see this?’ Because we don’t know what their agreement is, you know? Some will do X-ray, some can’t do X-ray. Some will, you know, be nurse-led, the other will be GP-led. So, I don’t know what hope we have.

CP2, professionals’ panel, urgent care services exercise

The East European panel offered a more restricted list of services under the umbrella of urgent and emergency care, but noted that access to an on-call doctor was important (direct access to doctors was something that recent migrants from Poland said that they had experience of). East European panel members were surprised to learn that policy-makers considered community pharmacies to be part of the urgent care network of services. In addition, interview participants from East European communities suggested that the ways in which services are named pose particular challenges for people whose first language is not English:

For people who come over here from a different country, they take names literally. They don’t see it as an umbrella of things, different services are available to them. They look at the name, and they see the name and they just associate the help with . . . Accident and emergency . . . Emergency, I need to be seen quickly, it’s critical, I need help . . . And then you’ve got out of hours. In the name, itself, it doesn’t have anything to convince you . . . that you would be seen quickly. Emergency, right I can be, sort of, fast-forwarded and be seen quickly. Out of hours, fine, they will see me, but God knows how long the wait will be because there’s no sense of urgency in the name, it’s just out of hours. Minor injury unit, again, injury, it sounds as if someone will take it more seriously than out of hours. So just the way you name things . . . To someone who doesn’t use them regularly, who has no experience of using them, they sort of put them in an order just depending on what they are called.

P2, East European

Both members of the public and health professionals felt that the term ‘urgent care centre’ was problematic: for many it was viewed as suitable for health problems that were ‘more urgent’ than those dealt with by NHS 111 or NHS WICs. Many believed that ‘urgent care centre’ was the name for an ED:

Urgent care centre, I think the word urgent you straightaway think that something is really wrong and you need to be seen straightaway. You think of all possibly the worst outcomes. Minor injuries I just associate with really long waiting queues, a lot of people in casts, a lot of broken arms, broken fingers – that’s what it says on the tin really, minor injuries.

P37, younger

Minor injuries? I don’t think I’ve . . . Oh no, I have been . . . Have I been to minor injuries? Urgent care? You mean accidents and emergencies?

P61, older

Minor injuries units seemed to be less well known, possibly because coverage of these across the country is patchy. The name ‘walk-in centre’ seemed to blur the boundaries of what is viewed as urgent because it conveyed notions of convenient access and not needing an appointment. For some service users, NHS WICs were a convenient alternative service to general practice:

The walk-in centre, to me, never seemed to be urgent care [ ] You’ve got your emergency service and then urgent care confuses me. Because those things aren’t urgent. They’re just us wanting to be seen quicker. You see, urgent, to me, if it was urgent . . . do we have urgent care clinics . . . do we have them? Have we got them in [name of city]? Have we? Where’s our urgent? [ ] Because I’ve never thought of [the walk-in centre] as an urgent care centre because . . . well, I suppose it is, isn’t it? Yes, but because it’s just a walk-in centre . . . I think that because it’s used by people who can’t get appointments at the GP.

P16, older

Walk-in seems so casual. Pop in and out if you want. But urgent, urgent care centre makes it seem . . . If I were to see those two things and you would say to me do you think these two are, you know synonymous or do you think they are, you know two totally opposite things I would probably say a walk-in centre and an urgent care centre seems two different . . . just by the words that are in the names . . . And then what was the third one?

A minor injuries unit?

No clue. I have no clue. Can you tell me?

Younger

NHS 111 was widely recognised by both citizens’ panel and interview participants, and most conceptualised it as a service for information and advice, or for signposting to other services. NHS 111 was not strongly identified as an urgent care service, and it appeared that the advertising of NHS 111 as a ‘non-emergency’ service contributed to this conceptualisation. Younger people in particular viewed NHS 111 as a service for ‘inquiries’ and ‘general health information’:

OK, great and what about the telephone service?

The telephone service 111 is more for inquiry type stuff than it is for emergencies.

Younger

If I was to say to you urgent care centre, a minor injuries unit or the 111 telephone service, what do you think the differences are between those three?

I think 111 is non-emergency I think isn’t it. And then you’ve got minor injuries which I guess is probably something you’d go for . . . I’m guessing it’s an A&E service which goes for minor, or possibly not A&E. Possibly not A&E. No, I don’t think it’s A&E.

Younger

Only a minority thought that NHS 111 was for more urgent or serious cases:

So 111 telephone service I think it would be very serious like maybe someone’s fallen unconscious or they’re unable to get out that sort of thing or, you know, if they’d had a fall or, yes . . . they can’t get to where they need to go or they’re not able to move them I think 111 is definitely the [service].

P46, younger

Moral positioning in making sense of urgent care

In making sense of the boundaries between ‘urgent’ and ‘emergency’ and between different services, people judged and positioned themselves relative to other people and behaviours. Service users often recognised or judged that other people misused services but then rationalised their own behaviour as legitimate, calling on notions of exceptionalism. ‘Others’ included both people known to them (often close family members) and people unknown to them (the general public). The latter were especially prominent in people’s sense-making narratives. Overall, while service users often described their own health service use and that of close family members and friends as legitimate, ‘others’ (i.e. the ‘general public’) were often characterised as ‘time wasters’, seeking help for ‘trivia’. The moral work entailed in making decisions about urgent care and its impact on help-seeking behaviour is explored further in Chapter 5.

Here we focus on how perceptions of legitimacy factor into sense-making. In the panel and interview data collection, we sometimes prompted participants for their views about other people’s use of urgent and emergency care services (we did this as neutrally as possible, avoiding value-laden language such as ‘inappropriate’).

‘Time wasters’ and undeserving cases constituted the construction of moral categories that framed people’s sense-making around what services were for. Medical trivia is a common theme in the wider literature and is often discussed in relation to ‘inappropriate’ service use. Trivia was characterised as illness that could be self-managed, could wait or could be seen somewhere else (e.g. coughs, colds, headaches), or conditions seen as self-inflicted or resulting from behaviour, rather than for reasons of medical seriousness (e.g. resulting from the use of alcohol or drugs). Disapproval was predominantly reserved for those who use the ED unnecessarily:

There was a girl when I was waiting who had cut her finger on Christmas Day, that’s why she was there. But they would be able to dress it and clean it. I mean, those sort of small traumas are not what I think A&E should have to deal with. Yes, I mean, I think it should be sort of really serious things, you know, people who’ve had a stroke or you know, somebody who’s had a coronary . . . that sort of thing . . . I mean, I certainly do not think that it should have to deal with people who have had too much to drink.

P20, older

In hearsay, in stories you sometimes hear about people who have got something absolutely piffling and yet they have gone to A&E or even called an ambulance.

And what would piffling be for you?

You’re coughing a lot or you have cut your finger on the tin opener or you have burnt your wrist on the oven shelf, you know really minor things, or you have got a temperature . . . a lot of people now apparently go to A&E because their child has croup and that I assume is because they have no idea what it is, and it is terrifying when you see it.

Younger

Behaviours such as alcohol and drug use that resulted in health service contact were often viewed as less deserving and irresponsible; however, occasionally service use was considered justified. Several younger service users had made contact with urgent or emergency services, often for a friend who was drunk, but these accounts often provided legitimisations, for example saying that this was a rare event, or, in the quotation below, suggesting that the presence of an underlying health condition might make attendance acceptable even when drunk:

What other things do you think people go to A&E for?

Being too drunk. That’s, being too drunk, OK yes I can imagine if you’ve already got a health condition that’s worsened by being too drunk then you might need to go to A&E but, you know if you’re paralytic go home and sleep it off. Go home and be sick, eat something, drink plenty of water and go to sleep. Don’t go to A&E.

Younger

Some interviewees also highlighted that ‘undeserving’ people make health services more unpleasant for others and may deprive others of the care that they need or are entitled to:

That has happened recently to a friend of mine, whose dad died . . . It’s very easy to call up a 999 in that situation . . . They shouldn’t have done, but they did. But then he ended up dying sort of on the other side of curtain, with somebody who’s . . . Some sort of drug-related problem. The nurse sort of grabbed . . . Have you, you know . . . ‘Have you got any drugs up your arse? We need to . . . Concentrate. Can you concentrate? I need to know if you’ve got any more drugs up your arse?’ And it was all awful while they were saying goodbye to their dad.

P18, older

He said they had been to a party and had some drinks so they wouldn’t be able to come down straight away. Don’t worry I said, I will look after her, we have called the ambulance; and the ambulance couldn’t come because they were dealing with drunks and drug addicts and they were full.

P24, older

This was also linked to beliefs that ‘others’ should take responsibility for their own health more generally:

Because the resources . . . so, how many people we know have been treated by NHS and people are getting older . . . but also I think people are not taking care of themselves from what I can see. And maybe it’s an exaggeration, but sometimes walking through [name of city] . . . I think that people are just not taking care of themselves. I don’t know whether the statistics can show that, but they just don’t look healthy and that is a difference I can see with going back to Poland. I think people look healthier there than here, and there is some responsibility on people themselves to actually look out for being hugely overweight, diabetes, and it’s just like some kind of responsibility is not there.

P54, East European

There was also some disapproval of people using urgent care services for minor ailments such as coughs and colds:

This is an education problem. I think this is most important. Because otherwise maybe lastly we go to the [urgent care] centre for ridiculous problems, like coughing or I don’t know what it is. Don’t call. If they know what they have to do, they stay at home.

P33, East European

I’d like to know what priorities each service treats. I mean, some people must ring up 111 for a headache or something stupid like that. Well that should be made quite clear, that you go to your doctor if you’ve got a headache or any minor cut or anything like that. You don’t ring them and waste their time because you get people who have had too much to drink and they’ve fallen over and they think, ‘oh well I’ll ring the hospital or ring the walk-in centre or whatever is available’. Whereas they could just as well wait until the next day. I feel very sorry for these people [health services] because they’re overstretched all the time by a lot of idiots.

P36, older

There was a perception among the older participants interviewed that other people may lack the necessary knowledge or skills to understand, articulate and interpret health problems, which leads them to make unnecessary contact with health services. Older interviewees used this kind of account as a prelude to a presentation of him- or herself as someone who understood how to use services responsibly (a theme to which we return in Chapter 5):

I think other people get worried . . . Basically, they don’t have the same type of knowledge in their heads that I have, so therefore I think their worry and anxiety is more profound . . . I think it’s worry and anxiety possibly to do with their condition and possibly lack of . . . lack of knowledge . . .

P7, older

I think I have used the 111 on one occasion . . . I would like to think that my husband and I are relatively articulate people, so that we can say what they would need in order to give us information back, but a lot of people couldn’t describe things or would be too stressed, in too much of a panic you know, to handle that.

P20, older

Some were more sympathetic:

You know, we’re not simple people but there are a lot of simple people in the . . . in the world that are even worse off than we are who can’t navigate anything, or maybe they find it easier because they just go and camp outside until somebody looks after them.

P5a, older

However, younger service users were singled out as lacking the education or knowledge to make the right decision, and were considered ‘hypochondriacs’ or ‘attention seekers’. Interestingly, this characterisation of younger service users was often made by those in the younger group:

I think people need reminding of that because I think this generation is full of hypochondriacs. I think they just need to chill out a little bit and educate themselves instead of thinking that, you know minor flu is going to kill them and they need to go sit at A&E. I think it’s a shame that people do that because, like my mum for example has got so many health problems and she’s had to wait because of time wasters, I shouldn’t really say time wasters, but people who are not educated enough for, people that just go there for the attention. Sometimes I’ve found . . . I have personally known people that have gone and there’s not actually been anything wrong with them. They’ve just wanted some attention.

P45, younger

One of things that drives me mad is when you’ve got people there with viral infections that go to A&E . . . You do see it when you go into the waiting room, people taking up time they don’t necessarily need to be there [ ] Usually panicked mothers, to be honest. Yes, mums that are very scared about their children. And also probably young teenagers. And I think a lot of it as well is teenagers who just need a bit of attention, maybe not necessarily for health conditions . . . I’ve seen a lot of people that definitely don’t need to be there and a lot of minor cuts that could probably be done at [MIU].

P49, younger

There was also a belief that others had unreasonable expectations or used services because they were lazy:

For some people it’s just easier, it’s a, kind of, laziness, they think I’d rather go there and wait than go through the palaver of having to make an appointment in the surgery.

P4, East European

Inappropriate service use was linked to perceptions of the consumer society: the idea that people ‘expected’ services to be available 24/7 (i.e. 24 hours a day, 7 days a week) in the same way that many shops and services are:

I think people want things to happen straight away. I think everything’s instant, so if I want something, like, from Amazon I’ll get it straight away; so in the same way people want the doctor to be available 24 hours a day. And I think they abuse . . . I do think they abuse the out-of-hours service. And listening to people talking about the surgery, I think their expectation of what they can get from the NHS and social services isn’t there. I think there’s an expectation but you can’t bridge that gap so everybody’s going to be disappointed; so they go in disappointed, they go in angry.

P16, older

I get really mad when people, like, slate the NHS and A&E because they think they’re the only person with something wrong with them when there’s so many more people who are way more serious [ ] So, because actually there was a time my nan had cancer and she was, like, dying. And she couldn’t breathe and I phoned . . . 999 and they got us in and we went straight in and someone [another patient] was so mad that we’d gone in but she was, like, dying, like. But they were just sat in A&E and they were really mad. And I was just, like, ‘how can you even do it, like, it’s just non-urgent selfishness’ [ ] I think they’re quite selfish in the way that they want to be seen, they want to be seen first. And that’s why you get, like, the arguments in A&E . . . because people think that they’re so much poorlier than someone else. It’s more do with, like, the lack of knowledge and understanding and not knowing that other things are available.

P43, younger

Reimagined boundaries of urgent care

The two themes presented above have demonstrated the confusion and moral positioning at play in people’s sense-making about urgent and emergency care. Sense-making is rendered problematic because of a lack of clarity about the definitions and boundaries between urgent and emergency health needs and care services. This is complicated further by the moral positioning that features in sense-making, which serves to reinforce understandings and legitimise one’s own help-seeking while marking out others as inappropriate services users.

The final theme from our data about sense-making is drawn from the exercise in the citizens’ panels where we asked participants to look at the ‘Keogh triangle’,1 a diagram used to depict the urgent and emergency care service landscape (Figure 5). We asked them to consider the range of services that should be included and the routes to accessing these services, as well as the visual representation.

FIGURE 5.

The ‘Keogh triangle’: proposed look and design of the new system. Figure reproduced with permission from NHS England (2013). 1

Figure reproduced with permission from NHS England (2013).

When asked to redraw or adapt the diagram to match their sense-making about urgent and emergency care, the panels’ pictures looked very different (Figure 6). Some groups, such as the commissioners, clearly ‘knew’ this visual representation, but we asked the panels to discuss this representation and reimagine it.

FIGURE 6.

Panels’ representations of the urgent and emergency care system. (a) Commissioners; and (b) general public 1.

One general public group reproduced the inverted triangle used in the Keogh visualisation, but, like the commissioners’ panel, they began to edit this during the discussion as they considered which services should be identified as urgent care. Both these groups were keen to explore a range of ways to access services:

I think it’s more important to have the definitions of urgent and emergency rather than the outcomes. So that people understand when they should be calling and which service to be calling. We sort of did it . . . And obviously panic is quite subjective, but green being sort of like, oh I’ve got a cough not . . . Like I’m OK, I can make it through. Amber being a bit like, OK, I’m a bit panicked by this, I’m worried, and you know, to being like I’m really, really panicked, whether it’s . . . Which is obviously pretty subjective, but as a general rule.

CP1, general public panel, discussion on Keogh diagram exercise

The discussion around this panel task confirmed that people wanted much clearer information about what different services did to inform their sense-making. Rather than using relational language, they favoured specific examples of the kinds of illness and injury that would be treated at each service. Several public panel members were confused about the placement of the ED at the base of the diagram and felt that this, and the bold red used, drew attention to this service and perhaps encouraged people to attend. This was particularly confusing in the light of the fact that the lines at the top of the diagram (denoting 111 and 999) placed 999 above 111 (the reverse of the diagram):

In the diagram but not with the fonts and I didn’t like the lines at the top. That’s forcing you to use 999 first.

OK, it sends the wrong message?

Yes.

Would you all agree with that?

Yes [it would be better] on the side.

Or even underneath it.

Underneath, yes.

East European panel, discussion on Keogh diagram

In their reimagined drawings, some groups drew traffic lights and other representations that attempted to help make better sense of where to go (Figure 7):

So we thought we’d have a traffic light system which was red, amber and green. With special leaflets for people who’re colour blind. And so the green will be the GP and the internet where you have time to think, you just go, have a little think about it, I’m not too . . . Or perhaps I . . . Perhaps I better see the GP on Monday or whatever. Or the internet reassures you, whatever it might be. So less important, but in green, we’re not sure where to put it.

CP4, general public panel, discussion on Keogh diagram

FIGURE 7.

Panels’ reimagined representations of the urgent and emergency care system. (a) Professionals 1; (b) general public 2; and (c) general public 3.

Two groups also specified a role and place for self-care and wanted this to feature prominently in the diagram to support people’s decision-making:

We felt definitely there needed to be more emphasis on this [self-care is in a separate bubble]. In fact, at first [panel member name] didn’t even notice that it was there. So we were saying if that was going to be the flow chart, you should have to go through self-care before you even get the option to go to emergency or urgent.

CP2, professionals panel, discussion about Keogh diagram

The East European panel provided insights into their understandings of different services. Some members suggested that they did not trust telephone services (such as NHS 111) and wanted to see a doctor face to face, which prompted them to seek help at A&E:

We don’t trust phone calls. We don’t use them. Quite often, we don’t communicate well enough to explain what’s happening and take the message from the doctors on the phone. They don’t have Polish speakers or any other languages, you know, on the 111. So that’s why they don’t call and they would like to see a doctor, because the doctor will explain. If they cannot explain, they draw it or they show it on a picture. So then she knows.

CP3, East European panel, discussion about services map

However, in the interviews several East European participants reported that they understood that NHS 111 provided help and advice about urgent health conditions and said that they would use the service. Some of these panel participants also mentioned that language barriers, as well as more direct experiences of racism, influenced their choices about accessing care. These experiences, combined with experiences of the health-care system (e.g. in Poland) and less knowledge of the NHS, led them to read the triangle map of service provision in very different ways. This was an unexpected finding that alerted us to cross-cultural differences in sense-making about urgent care.

Summary

Our exploration of sense-making about urgent and emergency care confirmed that the boundaries between urgent and emergency care are ill-defined and that there is considerable confusion about the appropriate use of the many services on offer. The general public, health-care professionals and service commissioners share this confusion, and this may explain why they find it difficult to navigate this service landscape. Given that the policy review revealed a lack of specificity in defining ‘urgent’, it is perhaps not surprising that the public struggled to articulate what urgent means and to make sense of the care options available. It was interesting that professionals and commissioners also shared this confusion at times. Our panels and interviews suggest that, unlike emergency, the term ‘urgent’ is particularly problematic: it holds little meaning for most people. The term ‘urgent care’ is often used interchangeably with ‘emergency care’. Although much of the policy surrounding urgent and emergency care is predicated on the notion that ‘urgent’ sits neatly between emergency and routine and is clearly distinct from these, the public, in particular, struggle to distinguish it from emergency or routine care in this way.

Although the public in our panels and interviews often found it difficult to articulate the differences between urgent and emergency care, they had strong moral views on the kinds of illness and injury, and the kind of person, deserving of ‘emergency’ care. Although the public recognised a range of contingent factors and special cases that influence people’s help-seeking, their sense-making with regard to emergency care tended to be judgemental and polarised. Fewer moral judgements were made about the ‘misuse’ of urgent care services, perhaps reflecting the lack of clarity about these. This moral positioning is further explored in Chapter 5, when we examine the moral work that service users do when choosing urgent or emergency care.

The panels demonstrated that the public sought a clearer sense of service priorities. Their redrawings of the Keogh diagram attempted to capture a triage system that might help navigate a confusing landscape and aid sense-making about urgent care. Although the Keogh diagram reflects the policy rhetoric that expects people to use NHS 111 as a gateway to urgent care, the public members of our panels and our interviewees were still less familiar with this model. Sense-making about urgent care is varied and complex, and our findings suggest that we cannot simply assume that providing a signpost in the form of NHS 111 will direct patients to the right service at the right time. Chapter 5 of our report examines the data about how sense-making influences people’s choices about which service to use, and probes more deeply into their experiences of help-seeking and the work involved in accessing, navigating and using urgent and emergency health services.

Introduction

This chapter examines the choices that service users make and the work that they do when seeking help for an urgent health problem (objectives 2 and 3). We also develop a typology of types of work involved in help-seeking: ‘illness work’, ‘moral work’ and ‘navigation work’. This work informs individual sense-making (how people think and feel) and help-seeking behaviour (actions). We also show how help-seeking is influenced by a wider set of psychosocial and contextual factors.

Illness work

Illness behaviour – how people monitor their health, and define and interpret their symptoms – is well documented in the literature191–194 (see also Chapter 6) and has been explored in relation to urgent care129,135,137,195 and emergency care. 150,153,196 The concept of ‘illness work’ has primarily been used in the context of chronic conditions research to refer to ‘diagnostic-related work, regimen work, crisis prevention and management, and symptom management’. 23 We suggest that it also occurs in relation to urgent care needs. People need to interpret and make decisions about the meaning and the severity of symptoms; manage physical symptoms, psychological states and possible risks; decide if access to medical care is needed, and if so, how soon; and decide which service is required. Illness work takes place at the individual level and within a social network that may include family, friends and neighbours.

Moral work

We use the term ‘moral work’ to capture ideas in the data about ‘being a credible patient’201 and what constitutes an appropriate or legitimate user of health care180 and being a responsible citizen in medical encounters. 10,202 This moral work is closely linked to illness work and navigation work in help-seeking, and, like illness work, it operates at an individual and social network level.

Navigation work

To help us think about what is involved in navigation work – that is, the processes of choosing and accessing particular care services – we drew on Penchansky and Thomas’s dimensions of access. 186 In particular, we focused on availability and accessibility, as these themes stood out in the data in relation to urgent and emergency care. We sought to explain how service users made choices between what is available (the type of services and the resources, e.g. staffing and technology), what is accessible (how easily the service user can physically reach a health service) and how they are ‘accommodated’ (how services are organised and configured, e.g. opening hours). We also recognise that navigating health care is informed by previous experiences, knowledge and perceptions about illness and about services and the acceptability of these. We therefore also draw on the concept of ‘recursivity’, which describes a service user’s experiences of health services and their future help-seeking. 128,203 Navigation work thus combines sense-making (based on experience, knowledge and perceptions of risk) and help-seeking behaviours (following a pathway through a care landscape). As with illness work, this takes place at an individual level (service users draw on their personal knowledge, experiences and perceptions) and within a social network that supports action directed towards seeking help.

Wider social contexts

We have shown that urgent care help-seeking, as described by our interviewees, entails three different kinds of work: illness, moral and navigation work. Although much of the work is performed by individuals themselves, choices are influenced by members of social networks: both strong and weak ties. These influencers can facilitate help-seeking work and shape patterns of service use. Alongside these network effects, we also identified a range of contextual factors that shaped help-seeking. The next section explores some of these features of people’s social contexts that were most prominent in the interview accounts and that appeared to influence help-seeking. These included living arrangements, work commitments, mobility and access to transport, and language. In the discussion that follows, we highlight how these factors influence help-seeking and note too how they can be mediated by the time of day in which help is needed.

Summary

This chapter has presented data about the three related, but distinct, types of work that appear to shape what people think and do when they experience an urgent health-care need. We have suggested that these types of work operate at an individual level and within social networks, but how this work gets done is highly dependent on people’s social context (notably living arrangements, work commitments, mobility and access to transport, and language) and on time (the time of day when help is needed).

Illness work involved interpretation of and decision-making about the meaning and the severity of symptoms, the management of physical symptoms and psychological states and the assessment and management of possible risks. This is used to decide if access to medical care is needed, and, if so, how soon, and which service is required. In our analysis we focused on responses to symptoms that seemed most distinctive as prompts to urgent care help-seeking. We summarised these as ‘pain’ and ‘anxiety’. We contend that subjective interpretations of pain are inextricably linked with emotional responses to illness, characterised as anxiety, and together these drive decisions about help-seeking. When anxiety was high, people reported bypassing more considered decision-making processes, frequently heading to the ED. Service users accessed both urgent care and emergency care to access pain relief or management. Younger service users particularly were equivocal in their service choices to manage pain, considering both urgent and emergency care. The dominant role that service users give to pain and anxiety in urgent care help-seeking is in stark contrast to the absence of these in policy definitions of urgent and emergency care.

Key to illness work is the interpretation and management of risks to health, and, in response, reassurance (rather than diagnosis or treatment), or ‘making sure nothing is wrong’, was a main reason for urgent care help-seeking to manage their anxiety. This was particularly prominent in choosing NHS 111. Illness work was often carried out across social networks to help make sense of symptoms and determine whether or not people should seek help. When people were making decisions on behalf of others, the risk threshold for seeking help was lowered. We also found that there were some differences between groups in relation to how they used their social networks. Older service users and East European service users who were married involved their spouse in illness work. Older people living alone tended to draw on a wider range of family, friends and neighbours than East Europeans, who tended to draw on closer family ties (parents or siblings). Younger participants tended to include their parents in illness work, but were less likely to involve friends.

Help-seeking was guided by moral work: the moral positioning, legitimation and sanctioning work done by service users. There are obvious tensions for services users in receiving the clinical reassurance, advice and treatment they desire to manage their anxiety but ensuring that their use is ‘legitimate’. Service users were keen to portray themselves as responsible users of services (someone who did not waste scarce resources, overburden already busy services or deprive others of care who might really need it). Not accessing services unnecessarily or at all, self-care, and tolerating symptoms were used to construct identifiers of being a ‘coper’, that is, someone who is self-reliant. Service users feared negative reactions from others, particularly from health professionals (although few reported being ‘told off’ when they acknowledged that their use might not have been appropriate). In addition, narratives of seeking to avoid ‘bothering the doctor’ were common. Social networks played a key role in sanctioning decision-making, and comparison with ‘others’ was a key part of moral work. There was often an emphasis on how others were instrumental in persuading them to use health services (against their own judgement). For younger people in particular, other people played an important role in sanctioning their choices. Older people were more likely to feel a sense of entitlement or a sense of unfairness when they had not been rewarded for being a ‘good patient’ (e.g. using services responsibly, paying taxes, not getting sick very often).

Navigation work – the choosing and accessing of services – relates to what is available and accessible. This very much depends on the knowledge and experience of an individual and on the knowledge and experience shared across service users’ social networks. What is available, accessible and acceptable is contingent on time. One of the strongest drives of patient help-seeking was weighing up waiting time and the convenience that different services offered, particularly for younger and East European groups. What was apparent was that people commonly chose the ED because it was convenient (e.g. it offered a shorter waiting time). For many, urgent and emergency care services were equivocal; decisions about where to go were frequently not based on perception of clinical need alone but, rather, were strongly influenced by convenience.

The illness, moral and navigation work evidenced by our participants is not done in a vacuum; rather, it is embedded in social contexts. There are myriad factors at play here, but family arrangements (e.g. living alone, caring responsibilities), work commitments, mobility and access to transport, and language were key. In turn, all of these factors are mediated by both time of day when help is needed and people’s access to social support.

In this chapter we have highlighted some features of the three population groups around their illness work, moral work and navigation work. Much of the work involved in help-seeking was similar across different user groups. For example, pain and anxiety were common reasons for help-seeking and all service users made similar moral distinctions between their own service use and that of others. However, there were also differences across groups, such as how social networks were used. In Table 10 we summarise the main group differences and similarities.

Chapter 6 describes how we synthesised the analyses to develop a conceptual model of urgent care help-seeking (WP3).

Help-seeking models in the literature

Numerous theories and models from a range of disciplines have been developed to conceptualise illness behaviour, decisions to seek help from health professionals and access to health care. 192 These include microsociological conceptualisations of illness behaviour,204,205 through meso-level psychosocial models to macro-level cultural, demographic, geographic, economic, structural, and service organisation and accessibility factors. These conceptualisations provide frameworks to help us understand how people interact with others and within social contexts to obtain assistance with their health-care needs in terms of understanding, advice, information, treatment and general support.

Social psychology approaches, underpinned by theories of cognition, decision-making and learning, have described cues or triggers for help-seeking. The health belief model, for example, describes psychological and motivational determinants of health service use. These include internal and external cues to action (e.g. pain; interference with everyday life); the readiness to take a particular course of action and the perceived risks and benefits from health-care use. These may be modified by demographic and individual factors such as gender, personality and social class. 206 One of the most extensively referenced sociobehavioural frameworks for studying access to health services is that of Andersen and colleagues. 207–210 Andersen and Newman in 1973 described the inter-relationship of the need for health services with individual-level determinants of utilisation and the organisation of health services and social norms in health-seeking behaviour. 207 These ideas were developed into a behavioural model of access to care208 and adapted in subsequent papers. 210,211 The framework takes health policy as the starting point for determining access, which directly influences the supply of health care. Within the framework, individual determinants of access are grouped into predisposing characteristics (e.g. age, sex and education); enabling determinants – the means by which people use health services (e.g. income, place of residence or supply of service); and need (current health status). The key limitation of these models is that they downplay the importance of social context, wider social influences, networks and processes. Andersen’s behavioural model focuses on outcomes rather than help-seeking as a (social) process. 203 Our findings in Chapter 5 reflect some of the determinants in Andersen’s model, particularly in what we have characterised as illness work, and we extend some of these ideas, particularly around risk work as part of illness work. However, we found that people’s social networks also played a key role in illness, moral and navigation work.

Medical sociology presents help-seeking as a social process,191,198,199,212 explaining how social and contextual influences may prompt or delay help-seeking. Early work by Freidson emphasises how interactions with others in lay referral networks shape help-seeking behaviour. 213 In an influential article, Pescosolido devised a framework termed the social organisation strategy focusing on socially constructed patterns of decisions. 198 It derives from four basic assumptions: the actor is social and pragmatic rather than isolated and consciously rational; the focus is individuals’ patterns of interaction with others; the unit of analysis is the network; and the context includes time and place, representing substantive and structural networks. In this way, it acts as a ‘middle tier between micro and macro-systems’. 192 One of its key strengths is that it recognises a wide range of options for health care, advice and resources. Although in the present study we have, to some extent, attended to micropsychosocial processes of individual sense-making and decision-making, what is important in our model is how individual actions combine with social networks, process and structures to create distinct types of health-seeking work in the context of urgent care.

The process of developing the model

A conceptual model can help us to organise our thoughts and identify a common set of influences that are strongly associated with choosing and using urgent care. Conceptual models are commonly informed by theory but based on empirical evidence so that they are directly applicable to the context and setting being studied. Here, the phenomenon under study is the way in which people make sense of, and seek help from, urgent care services.

The analysis of qualitative data that formed the basis of building a conceptual model was outlined in Chapter 3 (WP3). Using data from the full set of qualitative interviews, the core team (GM, CP, JP, AR and JT) held regular data clinics to examine the transcripts, codes and themes that captured people’s individual choices and reported behaviours, as well as the social processes and networks at play. We used spreadsheets containing the preliminary coding frame, mind maps, decision trees and logic models to map our interpretations. The data were grouped, regrouped and revised into inter-related themes and subthemes to form a final coding framework and a draft of the conceptual model. The core team discussed and worked through how sense-making and help-seeking related to each other and to identify factors and choices that might be modifiable.

We have characterised the underlying and mediating mechanisms through which these factors shape sense-making (thinking, feeling) and help-seeking (action) at the individual and social network level, and explained their operation. We have considered influences that are common across different service user groups, and have identified contingent factors that are specific to each of the service user groups. These are expressed as a set of theoretical constructs mapped onto a conceptual model. Once finalised, associations between components of the model were explored and a visual representation of the conceptual model was developed to show the relationships between them.

The model of urgent care sense-making and help-seeking

From our empirical data we have developed an integrative model of urgent care sense-making and help-seeking behaviour to help us understand variations in health-care utilisation in the context of urgent care. This builds on extant concepts of help-seeking and patient work. The overall structure of the model emphasises that work informs the interaction between what we think and feel about illness and the need to seek care (sense-making), and action, the decisions we take and how we use urgent care (help-seeking). The way in which sense-making leads to help-seeking is influenced by a set of social contextual factors and time.

From our analysis (see Chapters 3–5) we have built a typology of the work that people do in thinking about illness in relation to urgent care. We have conceptualised three related, but distinct, types of work that take place at both the individual level and the social network level in relation to urgent care sense-making and help-seeking (Table 11).

Having delineated the typology, the next stage in the development of the model focused on describing the way in which these three types of work interact to determine how people make sense of urgent care (Figure 8). Sense-making is what the individual thinks and feels about a set of symptoms (e.g. their cognition, affect, motivation to act). This is informed by their past experiences and knowledge of symptoms and services but also by their social networks. Individuals draw on their social networks to engage in different types of urgent care work, but these also shape how people make sense of urgent care. Social networks conduct and spread information, social norms, attitudes and beliefs to influence urgent care sense-making in a myriad of ways such as helping in risk assessment, providing reassurance and guidance, and sanctioning views, and, in so doing, influence help-seeking behaviours. This complex interplay between individuals and their social networks makes individual differences in sense-making inevitable but also reveals how group-level differences may emerge as factors such as experience, social norms, language and access to knowledgeable networks come into play.

FIGURE 8.

Model of urgent care help-seeking.

What is particularly interesting about urgent care is that there is no universally agreed, precise definition of ‘urgency’. It is often described in generic or relational terms (see Chapters 3 and 4) and, in everyday talk, ‘urgent’ lacks consistent and clear meaning. The sense-making that people undertake is therefore both based on lay knowledge/interpretation of illness and of health services, and (mis)informed by imprecise definitions of ‘urgent’. It is in this context that an individual has to recognise illness and interpret the meaning of symptoms, how they feel and what to do about it, if health care is needed and what level of urgency or service is required.

Our concept of illness work builds on that of Corbin and Strauss,23 which we have extended to include assessment of risk, decisions about what is being sought (e.g. reassurance, treatment) and what level of care is needed. Alongside this, our interpretations of illness are considered in the light of an individual’s moral position on the use of health services. People made sense of urgent care in assessing their illness in relation to thinking, and making judgements about when urgent care is ‘appropriate’. This is related to decisions about the severity or concern about illness (illness work) balanced against a need to legitimate their use. Assessing legitimacy of service use shapes people’s views about what urgent care ‘is’ and what ‘it is for’. This work also involves assessing a range of urgent and emergency services. Moral work involved situating or legitimating urgent care use in preference to emergency care use. Calnan150 highlights a useful distinction in lay evaluation: specific experiences and reasons, and more general lay images of health and health care, which is useful for thinking about moral work. People’s thinking and moral evaluations come from both individual moral evaluations of specific symptoms in relation to specific experiences of services and evaluations that are constructed by comparison with ‘others’, for example not wasting the doctor’s time as other people might (see Chapter 5).

The final aspect of work is navigation work. People make sense of urgent care by understanding the range of possible services and understanding what is available, accessible and acceptable from different services. As we have highlighted above, urgent care in the UK does not have a clear meaning or definition. Furthermore, urgent care is not a single service with a single identity. It is a collection of different services, offering slightly different things for different purposes. People’s knowledge and experience of this landscape shapes their understanding of what urgent care ‘is’ and what it can provide. We used some aspects of Penchansky and Thomas’s dimensions of access186 on availability and accessibility of urgent care and extended these to acknowledge how sense-making is informed by previous experiences, knowledge and perceptions about illness and about services and the acceptability of these. We also draw on the concept of ‘recursivity’ to emphasise how a service user’s experiences of health services shapes and informs their future help-seeking. 128,203 People make sense of what is ‘urgent’ by recursively drawing on their own experience and knowledge (or sometimes that of others). Navigation work takes place alongside illness and moral work to shape people’s understanding of urgent care, and this in turn shapes help-seeking.

The second stage of the model captures how help-seeking (i.e. the actions that people take in terms of their behaviours, decisions and choices) is influenced by how they make sense of urgent care, and by social context and time. Deciding to act (seeking help) is informed by making sense of illness, and of one’s moral position, and by personal and networked understandings of the urgent care landscape. Help-seeking involves comparing the options, assessing, and synthesising information to evaluate the direct or indirect benefits and costs of alternative choices. Deciding to act involves balancing these (sometimes competing) types of work against each other. For example, a choice of service may involve balancing what is being sought (e.g. reassurance) against moral positioning (views about what is appropriate for a particular service). Thus, help-seeking involves weighing up the risks and seeking reassurance to manage those risks, but also a desire to act as a responsible service user. Although there may be strong motivation to be a ‘legitimate’ user of a particular service, this can be ‘traded off’ against what is most accessible or convenient at a particular time or in a specific context.

The third stage of the model shows how, between sense-making and help-seeking, choices and action, the individual is influenced by social context and by time. Help-seeking is the result of individual, social and structural/organisation practices,214 and the conceptual model we propose emphasises the individual (micro) aspects of sense-making and help-seeking while also accounting for the wider social network and social structure influences. We have demonstrated how sense-making and help-seeking are influenced by social networks and that these networks play a role in illness work (e.g. helping decide how to manage risk), in moral work (e.g. how others can trigger help-seeking by sanctioning health service use)199 and in navigation work (e.g. supporting action directed towards seeking help). Action to seek help is also contingent on the social context, at a given time of day, and together influencers may facilitate or inhibit support-giving and help-seeking. Social context influences the individual’s access to information and social support, including practical support (e.g. transport to services),200 and again this varies with time of day. For example, help-seeking may be facilitated (or, at least, there may be more choices available) for those who live with a partner, own a car or have more flexibility in their working hours. Those who live alone, or who rely on public transport or on other people for a lift, may make different choices. Time of day influences the social context in terms of what help is available and how people feel about asking for help (e.g. at night people worry about burdening others).

Although the model is necessarily presented as linear, there is a feedback loop from help-seeking (action) back into sense-making to illustrate how experiences of help-seeking consolidate or reframe sense-making in a reciprocal relationship. For example, an individual who experiences care positively when using a particular service is likely to use that service again.

In summary, our model suggests that sense-making (thinking, feeling) and help-seeking (action) is a function of illness work, moral work and navigation work (at the individual and social level) but is influenced by social structure and time.

How patients, the public, providers and policy makers define and make sense of the urgent care landscape (objective 1)

We showed that the terms ‘urgent’ and ‘emergency’ as categories of care are not clear in the policy literature, although there was some consensus across policy and provider perspectives regarding the physiological factors that feature in conceptualisations of urgent care. Definitions of urgent were ‘relational’ and focused on comparing urgent care with emergency care. For service users, their construct of ‘urgent’ was more complex, ambiguous and subjective, and was shaped by the help-seeking work that they do [see The ‘work’ of urgent care and the way in which sense-making influences service users understanding, navigating, and use of services (help-seeking strategies) (objectives 2 and 3)]. Initially, most interview participants did not see a distinction between the terms ‘urgent’ and ‘emergency’. Only when asked if there was a difference were interviewees likely to define ‘emergency’ as ‘more serious’ than ‘urgent’.

Policy1–3,51,185,215 and existing research67 has previously identified that people are confused about which services to use, but we found that there is a clear mismatch between how policy and the public conceptualise ‘urgent’. O’Cathain et al. 67 found that people can describe emergency care more easily than urgent care, but there is little in the literature that explains how people think about urgent care. We argue that, although ‘urgent’ care is a term that is used widely, and may have particular meaning for providers and policy-makers, this is not the case for service users. Our citizens’ panels and interviews suggest that, unlike emergency, the term ‘urgent’ is particularly problematic: it holds little meaning for most people. Although many service users understand that services such as NHS 111 or WICs are for less serious symptoms than the ED, they may not assign the label ‘urgent’ to these sorts of services.

In policy, it is often implied that urgent care has a single identity, but this term covers a range of services, which appears to contribute to why service users do not have a clear understanding of it. This raises the question of whether the range of services (e.g. WICs, MIUs, NHS 111) are too broad and too disparate, in terms of when they are available and what they are able to assess and treat, to be meaningfully grouped together under the banner of ‘urgent’ care services.

For service users, there is a lack of urgent care identity and a lack of clarity about what urgent ‘is’ and what it is intended to provide. Historically, service provider definitions of ‘urgent’ reflected those of out-hours services, for example medical problems that ‘cannot wait until morning’. 68 More recently, definitions of ‘urgent’ have focused on descriptions that include ‘not serious’, ‘minor’ illness or injury or ‘urgent but not life-threatening’. These definitions potentially broaden notions of urgency to include more minor – and possibly more routine – health concerns. Our findings have drawn attention to the ways language is used to describe urgent care and how it is presented by health services providers and policy-makers. Lack of clarity may lead to ‘overuse’ of some services41,79,97,147,175,216,217 as people conflate urgent with emergency services and then make decisions about where to seek help in idiosyncratic ways. For example, in our study we report that some used the ED because it was convenient, and this perception is likely to be further exacerbated when primary care services are hard to access in a timely way. Lack of clarity around what ‘urgent’ means to service users may also lead to delays in help-seeking218 and we suggest that some groups (e.g. older people) may wait longer to access care.

Using urgent and emergency care services when seeking reassurance about symptoms was very common in the accounts we obtained from the panels and interviews. This encouraged us to extend our concept of illness work to include how people manage risk when making sense of and using services. Our findings suggest that urgent care services are often seen as offering reassurance and ‘peace of mind’, which may contribute to high levels of satisfaction, but this may not always be the purpose they were intended to serve. The notion of risk in acute help-seeking has not been particularly prominent,137,219 although previous research has considered urgent and emergency service use is seen as a way to manage anxiety. 157,219,220 NHS 111 explicitly offers reassurance, advice and information, and survey research suggests that the majority of those who use this service (86%) fully complied with advice and that nearly three-quarters were satisfied with the service. 221 The position of NHS 111 is somewhat contradictory: on the one hand, it is branded as an ‘urgent care service’, but on the other, it plays this wider role, offering ‘non-urgent’ reassurance, and more general health advice and information. This extended remit may contribute to ambiguity about the term ‘urgent’.

NHS 111 has been presented as a service that can signpost people to other services and provide support for people to self-care. Our findings suggest that service users make contact to sanction, signpost and seek confirmation about what to do next, but many go on to use another urgent or emergency service. The ability of NHS 111 to substitute for other services may be compromised by this help-seeking behaviour. Indeed, using NHS 111 before attending another service may be reinforced by adverts and health education; for example, the NHS self-care week in 2017 promoted NHS Choices as a website that offered information about losing weight, stopping smoking and eating more healthily but also suggested that:222

If you’re worried about an urgent medical concern, call 111 and speak to a fully trained adviser.

© Crown copyright. Contains public sector information licensed under the Open Government Licence v3.0222

This advertising provides normative messages that the remit of NHS 111 includes non-urgent and general health information and advice, rather than urgent care specifically, and further blurs the boundaries between urgent and emergency care. It also signals that NHS 111 is positioned as a gateway to other services (such as ED), which patients and the public may understand more clearly.

Our findings suggest that service users wanted a clearer sense of service priorities. In the panels, redrawings of the Keogh diagram attempted to capture a triage system that might help navigate a confusing landscape and aid sense-making about urgent care. Although the Keogh diagram reflects the policy rhetoric that expects people to use NHS 111 as a gateway to urgent care, the public members of our panels and our interviewees remain less familiar with this model. NHS 111 has the potential to prevent patients using other services unnecessarily (i.e. it could ‘shut the gate’) but this would require people to both understand and accept NHS 111 as the starting point for seeking urgent support. However, in a context in which people do not understand the term ‘urgent’, where their sense-making does not match policy-makers’ vision of service use and where people are free to access other health-care services directly, this ambition will be hard to realise. Sense-making about urgent care is varied and complex, and our findings confirm that we cannot simply assume that providing a signpost in the form of NHS 111 will direct patients to the ‘right service at the right time’.

Judgements of ‘appropriateness’ of service use have tended to reflect policy positioning of services and professional attitudes (see Chapter 3), particularly in relation to ED use. 121 This has tended to focus on ‘blaming the user’ for poor choices, but our findings raise questions for the health-care system that has repeatedly failed to guide people to the ‘right place’. Our work shows that service users were aware of strong messages about choosing between available services and using them ‘appropriately’, particularly for ED. This finding has been noted elsewhere. 223 However, service users frequently rationalise their own use of services, a finding that is consistent with that of Adamson et al. 180 Interestingly, we observed that fewer moral judgements were made about the ‘misuse’ of urgent care services than of that of ED. This may reflect a lack of clarity, as described above, or the perception that services such as NHS 111 provide a much wider remit than urgent care alone. We discuss this further in the context of moral and navigation work in the next section.

The ‘work’ of urgent care and the way in which sense-making influences service users’ understanding, navigating and use of services (help-seeking strategies) (objectives 2 and 3)

We identified three distinct types of work (illness, moral and navigation work) that influence how people make sense of urgent care, and in turn, how and where they seek help.

The way in which service users involved in our study interpret symptoms largely concurs with existing literature. 129,135,137,157 However, a dominant theme in our analysis of illness work was the way in which the interpretation and management of pain was a key reason for seeking help from both emergency and urgent care. While there is relatively little attention given to pain in the policy literature, research has noted that pain is an important reason for attending the ED. 224,225 In addition, a recent study has suggested that those who attend ED because of pain tend to be ‘vulnerable, complex and report significant worry and anxiety’. 224 Although not all of our participants could be described as vulnerable or complex, we have also drawn attention to the role that anxiety plays in help-seeking.

Another key theme in our analysis was the role that services play in reassurance and managing risk. We extended the concept of illness work to include the management of risk.

The role of risk in help-seeking for acute illness has not been particularly prominent in the literature but seeking reassurance from health services has previously been identified,137,219,226 particularly in the context of parents’ help-seeking about their child’s illness137,227 but also more recently in the context of NHS 24 service use. 219 Some studies have identified a risk-averse culture in some urgent and emergency care services, for example in ED clinical decision-making (‘better safe than sorry’224) or in the algorithms underpinning NHS 111. 228 The ways in which services are organised may share risk with service users229 and influence help-seeking behaviours. Our findings concur with those of Doyle,219 who suggests that ruling out risks is a significant feature of urgent care help-seeking: checking that they were ‘doing the right thing’ was a main reason for people making contact. Seeking reassurance is an important part of urgent care help-seeking but this raises questions about the role of urgent care. Is it to assess and treat ‘urgent’ symptoms or is it to provide a wider range of advice and information?

Our findings suggest that people engage in complex moral reasoning when making sense of and using services, and we have extended some of what is already known about moral reasoning to highlight this as a key aspect of help-seeking work. Service users had strong moral views on what kinds of illness and injury and what kind of person deserves ‘emergency’ care and were highly sensitive to ‘inappropriate’ help-seeking. They wished to present as responsible citizens, and feared ‘bothering the doctor’ and criticism from health professionals. This moral work influenced their choices when seeking help. Many people articulated the moral aspects of their help-seeking; they considered the likely impact on staff workload and the opportunity costs of using resources in place of those more deserving, in ways that reflect findings elsewhere in relation to urgent, emergency and GP care. 10,157,163,202,223,230 However, consideration of appropriateness is often externalised so that the moral rules are applied to others (often characterising others as ‘time wasters’, seeking help for ‘trivia’) and not to oneself. Some groups, for example the older age group, rehearsed notions of stoicism or of being ‘someone who copes’180,231 to identify appropriate service use, in comparison with ‘others’ who were less resilient, less knowledgeable or more selfish. While these sentiments were offered in the context of discussions about emergency care, we observed that fewer moral judgements were made about the ‘misuse’ of urgent care services. We conclude from this that moral work may be less influential when considering urgent care help-seeking.

Service users make decisions in the light of the choices that are (or are perceived to be) available and accessible at any given time of day186,203,223 and on how they feel about these (acceptability). Available urgent care services are highly variable; for example, there is inconsistency in what is open, and at what times, in different areas of the country. This is complicated further as services that people have previously relied on are shut down or reconfigured. Road and transport links may influence accessibility, and can mean that a hospital with an ED is nearer or more accessible than a ‘local’ UCC. Previous research supports that those who live closer to services have higher rates of use127,232,233 but our work suggests that proximity may be temporal as well as geographical (e.g. the hospital may be ‘nearer’ at night because of car and motorway access). These features of access are socially patterned: older people, for example, relied on others for support (e.g. transport) more than other groups. We also showed that the lack of a consistent landscape of care makes understanding, and using, services difficult, especially for some groups; for example, East European groups have a different set of experiences in their home country (e.g. no urgent care services) so their sense-making may not transfer to the UK system.

One of the strongest drivers of service choice was the perception of the amount of time it would take to be seen (waiting time). Routine primary care was described as the least accessible form of care in this respect when compared with urgent care and the ED. Here, we can see how navigation work extends beyond choices between urgent and emergency services: many people report using urgent care (and sometimes the ED) because they cannot access a GP appointment. This finding is supported by research that has demonstrated that patients registered with practices that are open fewer than 45 hours per week attend the ED more often. 234 Furthermore, what is apparent from our data is the extent to which convenience drives people’s choices. For many, urgent and emergency care services were equivalent, not distinct, services, and people’s decisions about which to use were not based on perception of clinical need alone but rather were influenced by accessibility and waiting time considerations. Service users, particularly younger ones, sought to maximise the use of their own time (e.g. by choosing services with the shortest expected waiting time, choosing what time was best to access them and/or by choosing services that were more conveniently located). This navigation work involves both finding one’s way and trading off choices about the availability, accessibility and acceptability of services. Although many do not take the decision to consult health services lightly, they also want to use the most convenient service. Convenience is thus a legitimate reason, and important determinant, for using a service.

Our model proposes that sense-making work takes place at both the individual level and the social network level, and that context and time shapes people’s help-seeking. We have shown that individuals often drew on social networks to support illness, moral and navigation work. The use of lay networks in illness work and sanctioning choices are well documented in the help-seeking literature. 197,213 There is a suggestion that weaker social networks may encourage service use; indeed, NHS 111 and its predecessor NHS Direct may substitute for stronger lay networks. 235 We observed that service users often draw on weak and strong ties in social networks for illness advice, but do so in conjunction with making contact with health services. Services such as NHS 111 have not replaced the social network, but have instead become part of a wider network of complementary support to draw on. In addition, social context influenced the way in which help was sought, so that family arrangements (e.g. living alone, caring responsibilities), work commitments, mobility and access to transport, and language also facilitate (or hinder) choices about and access to care.

Modifiable factors in urgent care patient decision-making: implications for urgent care (objective 4)

The proposed conceptual model helps us identify, explain and describe potentially modifiable components of help-seeking (see Chapter 6). Our research suggests that there may be implications for urgent care provision and utilisation. These are summarised below.

User involvement, dissemination and impact

Recommendations for future research

Our study has added significantly to the knowledge base by exploring the perspectives of policy, providers and the public in conceptualising urgent care, and by explaining how understanding, navigating and using urgent care requires significant ‘work’ for service users. As such, our research recommendations are as follows.

Conclusions

The literature about illness behaviour and help-seeking is sizable and raises the question of why we might need more. 249 However, there are still some gaps in our understanding. First, policy and research has highlighted the complexity of urgent care and how provision has changed significantly over the last 20 years. There has been less focus on complex systems that include a range of service choices and newer forms of provision, such as NHS 111. This study was a timely opportunity to empirically investigate how people make sense of care, the work involved in understanding, navigating and choosing, and their use of it. Second, much of the previous research evidence has had a stronger focus on experiences of help-seeking for chronic rather than acute illness and on the management of minor illness and injuries with self-care. 249,250 Third, as Adamson et al. 180 point out, there is little research that examines how service users view ‘appropriate’ service use and the impact that this may have on help-seeking behaviour.

We have drawn quite heavily on older concepts of illness work that have previously been applied to people with chronic illness rather than those with acute health-care needs. We conclude that help-seeking is complex and is influenced by individual and social factors. Re-examining what these older studies can tell us about the nature of patient work in the context of urgent and emergency care has informed our model of urgent care sense-making and help-seeking. This study has been the first to examine in detail how service users are making sense (or not) of the urgent care system across a large data sample and how this is informing their decision-making around their urgent care needs. It has also included a group (East Europeans) about whom there has been little research to date. Recognising that there may be different or additional work for some groups may help design services (and guidance to using services) better in the future.

As expected, we identified a mismatch between policy providers’ and public understanding. Much of the policy surrounding urgent and emergency care is predicated on the notion that ‘urgent’ sits neatly between emergency and routine; however, service users in particular struggle to distinguish it from emergency or routine care in this way. We have drawn attention to the role of risk management in illness work, and developed a concept of ‘navigation work’, alongside moral work. From our empirical data, we have developed a new model of urgent care sense-making and help-seeking behaviour, which places greater focus on work at both the individual and the social levels, encouraging us to think about patient work more broadly. We emphasised that individual work takes place in a social and structural context where there is a range of influencing variables that shape both sense-making and help-seeking. The model aims to frame the interaction between thinking (sense-making) and action (help-seeking) and the work that may be involved (for individuals and their social networks) in accessing urgent care health-care systems. Crucially, as proposed by the model, this individual phenomenological approach is situated within the wider context. This pushes us from examining individual phenomenological study of everyday experiences to understanding the complex network of interactions that drive behaviour. The model helps us understand variations in health-care utilisation in the context of urgent care and has implications for policy and practice as it stresses the importance of the individual and their social networks in their roles as interpreters of illness, moral decision-makers and service navigators.

Contributions of authors

Joanne Turnbull (Lecturer, Health Services Research) led the research and the preparation of the report and was involved in the conceptualisation and design of the study, data collection and analysis and data interpretation.

Gemma McKenna (Research Fellow, Health Services Research) was involved in recruitment, data collection, analysis and interpretation of the data and assisted with drafting and revising of the report.

Jane Prichard (Senior Lecturer) was involved in the conception and design of the study, and the analysis and interpretation of data, provided psychological perspectives and assisted with drafting the report.

Anne Rogers (Professor of Health Systems Implementation) supported the design of the study and contributed to the analysis and interpretation of the data. She commented on drafts of the final report.

Robert Crouch (Consultant Nurse) supported the delivery of the study by liaising with NHS services, supporting access to acute trust and pre-hospital services for sampling, and advising on clinical and service provider aspects of the analysis. He commented on drafts of the final report.

Andrew Lennon contributed a perspective as urgent care service provider, liaising with other providers and supporting sample recruitment. He advised on primary and urgent care service and organisation delivery.

Catherine Pope (Professor of Medical Sociology) was centrally involved in the conception and design of the study and the analysis and interpretation of the data. She played a key role in the development of the typology and conceptual model and was also involved in the drafting and revising of the report.

Publications

Pope C, McKenna G, Tunbull J, Prichard J, Rogers A. Navigating and making sense of urgent and emergency care processes and provision [Published online ahead of print January 10 2019]. Health Expectations 2019.

Turnbull J, Pope C, Prichard J, McKenna G, Rogers A. A conceptual model of urgent care sense-making and help-seeking: a qualitative interview study of urgent care users in England. BMC Health Serv Res 2019;19:481.

Data-sharing statement

All qualitative data generated that can be shared are contained within the report. All data queries and requests should be submitted to the corresponding author for consideration.

Disclaimers

This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health and Social Care.