Abstract

Overview

In this chapter we describe a qualitative study that we undertook in parallel with the longitudinal cohort study described in Chapter 3. The main aim of this study was to improve our understanding of why patients with LTCs use unscheduled care. To do this, we carried out detailed interviews with HCPs who were involved in the care of patients with LTCs, and we also interviewed a subset of patients who were participants in the longitudinal cohort study. The work has been written up and published elsewhere.²⁷⁰

Our main objective from the original programme application was to identify personal reasons for use of unscheduled care including barriers to access for routine care, patients’ motivations, expectations and decision-making processes, and influences from families and relevant health-care providers.

Background

The health-care practitioners’ perspective

General practitioners and other HCPs working in community settings are tasked with implementing policies, including reduction of unscheduled care use by patients with LTCs.²⁷¹ At the time of this programme of research, the UK primary care Quality and Productivity indicators (as part of the GP contract) provided financial incentives to general practices to implement strategies to reduce the use of unscheduled care.²⁷¹

A number of different HCPs are involved in the provision of unscheduled care for patients with LTCs, including GPs, practice nurses (PNs), district nurses (DNs) and ED clinicians (Table 26). More recently, other roles have been created in response to a policy shift towards case management for people with LTCs.^21,272 These include ACMs, with nurse or allied HCP backgrounds, introduced to case-manage patients with complex problems, with the explicit aims of reducing emergency admissions through improved routine care and self-management.^9,271 Similarly, specialist nurses (SNs) in both primary and secondary care are seen as having a key role in the management of people with LTCs and preventing unscheduled care use.^272,273 The introduction of the new General Medical Services contract in 2004 allowed GPs to opt out of the responsibility for 24-hour care, leading to OOH doctors making more management decisions for patients seen outside routine hours.²⁷⁴

TABLE 26

Summary of the context in which different HCPs see patients

Previous research has explored HCPs’ views on the appropriateness of patients’ use of unscheduled care, or their perceptions of why patients use unscheduled care.^{196,210,225,275} However, it is not known what HCPs believe their roles and responsibilities to be in reducing unscheduled care use. As its first aim, this chapter reports the results of a qualitative study which explored HCPs’ perceptions of the reasons why patients with LTCs use unscheduled care, and the HCPs’ understanding of their own role in relation to reducing use of unscheduled care.

Methods

Recruitment

Health-care practitioners

Health-care practitioners from different professions and varying responsibilities in unscheduled care were given the opportunity to participate in the study. All HCPs were identified through either purposive sampling or recruitment through local networks (Table 27 and Figure 19). Information sheets were given to prospective participants, and informed written consent was obtained prior to commencing interviews. Although some participants were recruited through local networks, interviewers only interviewed participants with whom they had no prior relationship.

TABLE 27

Recruitment methods of HCPs

FIGURE 19

The Consolidated Standards of Reporting Trials (CONSORT) flow diagram demonstrating sampling and recruitment of patients and practitioners.

Patients

The sample of patients for this study was drawn from patients who had agreed to participate in the large, longitudinal cohort study to identify predictors of unscheduled care use, which was described in Chapter 3. The target patient population were patients aged ≥ 18 years with one or more of the four exemplar LTCs:

1. COPD
2. CHD
3. asthma
4. diabetes.

Six out of the 10 general practices involved in the cohort study were used for the qualitative study. Patients were identified using the QOF registers of general practices and invited to take part in the cohort study (see Chapter 3). The Consolidated Standards of Reporting Trials (CONSORT) flow diagram (see Figure 19) demonstrates that, of 939 patients across six different general practices who returned questionnaires for the cohort study, 474 (50%) consented to be contacted for interviews. From these consenting patients, the team strategically sampled 212 individuals on age, sex, type and number of LTCs, and different levels of self-reported use of routine primary care and unscheduled care use. The purpose was to achieve a variation of characteristics and to minimise sampling bias. Invitation packs including a patient information sheet (PIS), a reply slip, and a stamped addressed envelope were sent out to this sample of 212 individuals. A total of 67 participants agreed to be interviewed by returning a reply slip or calling the researchers directly; recruitment ceased when category saturation had been achieved, with the final sample comprising 50 patients. Informed written consent was obtained from all participants prior to commencing interviews. Patients were not known to the interviewers prior to the interview, and it was made clear on information sheets and in person what the study was about and that the interviewers were non-clinical and not involved in their health care in any way.

Results

Participant characteristics

Twenty-nine HCPs (Table 28) and 50 patients (Table 29) took part in a semistructured interview.

TABLE 28

Number of HCPs (further details not given to preserve participant anonymity)

TABLE 29

Sociodemographic characteristics of patient participants

Findings

Findings will be presented from HCPs’ and patients’ perspectives separately, and their implications discussed together. Illustrative data are given, with brief identifiers to help contextualise the data. For HCPs, the identifiers include a short acronym denoting professional status (see Table 28) and a number. For patients, this includes a number followed by a short demographic summary of the patient’s age, sex and LTC(s). Ellipses (. . .) signify omitted text. Square brackets denote explanatory text.

Health-care practitioners’ perspectives

Use of unscheduled care is understandable and necessary

All HCPs described unscheduled care use as an understandable and necessary part of care for patients with LTCs, and recognised exacerbations as a normal part of the disease process; for example, describing exacerbations as expected yet unpredictable:

People with chronic diseases it’s episodic isn’t it? So somebody might phone with an exacerbation of their COPD but the next one might be 8 months away and the next one 3 months after that.

HCP 10 GP OOH

General practitioners, PNs, and DNs discussed ways of managing exacerbations within primary care, but they recognised the limitations of their service, and the necessity of ED services for severe exacerbations:

He’d [COPD patient] been to hospital loads of times, but that’s not so much because he doesn’t know his disease I suspect, it’s ‘cause he’s just at the severe end and he’d end up at hospital anyway, but as I say, we started the treatment just to sort of, optimise the chances of not going in [hospital]. But there’s still a reasonable chance that he will go in.

HCP 17 GP OOH

Although some HCPs acknowledged a link between anxiety and breathlessness in a few individual patients with COPD, they attributed unscheduled care use overwhelmingly to clinical need and not to psychological or social factors. All ED doctors were explicit in describing unscheduled care use by patients with LTCs as legitimate:

The traditional definition of emergency care would be that it’s to provide care for any person who believes that they are suffering from an emergency condition, which requires either urgent investigation, or urgent treatment. So it’s defined by the patient.

HCP 11 ED doctor

They justified this view by referencing policies and protocols within emergency services that emphasise patient safety:

Our general policy, except with a few very minor exceptions, is that we do see everybody who comes and if you don’t do that, and turn them away, unless you turn them away to something that’s appropriate and timely, you can make mistakes.

HCP 23 ED doctor

General practitioners working in OOH services described this setting as inherently more risky than in-hours GP work because they lacked prior knowledge about individual patients. This affected their decision-making, as they could not draw on an understanding of a patient’s typical behaviour and they described prioritising patient safety:

I think that somebody who’s a diabetic or COPD or asthmatic who presents acutely (. . .) you don’t really have much information about them and you have got somebody who’s acutely unwell and oftentimes the safest thing to do will be to send them to hospital.

HCP 29 GP OOH

Unlike ED doctors and HCPs involved in providing routine primary care, ACMs and SNs were performance-managed against the policy aim to reduce unscheduled care use, and they discussed unscheduled care use as something that they were responsible for tackling. However, many described a tension between this policy aim and their beliefs about how best to support and manage patients. One ACM referred to the divergence between patient feedback, suggesting she was ‘doing a good job’, and perceived pressure to meet targets to reduce unscheduled care use:

You [ACM] felt you knew you were sort of doing a good job from the feedback that you got from the patient, but you never really felt like that when it came from your sort of performance. I mean you look at performance management, the difficulty with performance management is it doesn’t really capture, it doesn’t always capture good outcomes for patients. It captures good outcomes for, I suppose, finance. Well it can, it’s a difficult one because some of the, a lot of our stuff (. . .) is about prevention. Um it is difficult to capture prevention in the short term, isn’t it?

HCP 26 ACM

One SN reported spending time with patients to reduce unscheduled care use, but disclosed concerns that patients may become dependent on this service:

We do have a cohort of patients like that who will phone up purely for us to go out just to reassure them that they are fine (. . .) They will be phoning us on a Friday afternoon for that reassurance, ‘cos they know that we’re not here Saturday, Sunday. And a lot of that is anxiety-related, and maybe we perpetuate that because we go out and we say ‘Look, you’re fine, we’ve done all your obs [observations], you are fine. We have no concerns about you’. But if we didn’t do that, they would have gone to A&E and we might have stopped that visit over the weekend. So, I don’t know if we’re perpetuating it, or we’re avoiding other things happening, I don’t know.

HCP 13 SN, specialist in COPD

Other ACMs and SNs described the difficulty of managing patients with multiple problems in a highly complex health-care system, and suggested that avoiding unscheduled care was not always possible despite HCPs’ best efforts. An example of this complexity is illustrated below; this ACM described intensive case management being undermined by the OOH service’s response to exacerbations:

I see [patient with end-stage COPD] probably two, three times a week. I’ve done as much as I possibly can, the GP’s very good, we’ve had about probably three family conferences (. . .) the out-of-hours doctors who don’t really know her (. . .) go in, see her and think ‘Oh my God, this lady’s really poorly, this should be done, that should be done’, even though it’s an ongoing thing.

HCP 21 ACM

In summary, all HCPs framed patients’ unscheduled care use as understandable in terms of the clinical course of LTCs. However, reducing patients’ unscheduled care use was described as a problem by some HCPs, reflecting their role in relation to unscheduled care policy. At one extreme, ED doctors described their role as treating patients safely, with no pressure to reduce unscheduled care use. At the other extreme, ACMs described a conflict between needing to reduce unscheduled care use because of performance management targets and providing what they perceived to be good clinical management.

Approaches to reducing the use of unscheduled care

Health-care practitioners discussed different approaches to reducing unscheduled care use, again reflecting their roles within the health system. Three main approaches were ‘optimising the system’, ‘negotiating the system’ and ‘optimising the patient’.

Optimising the system

GPs framed the problem of unscheduled care use in the context of the wider health-care system. They recognised that patients may need clinical care urgently, but discussed opportunities to reduce unscheduled care use by directing patients to other settings. They described potential system-level solutions, such as improved communication between primary and secondary care, in order to identify patients who were not using the system ‘correctly’:

Until I’m convinced that we’re getting all the information from casualty about who’s been, ‘cos although they seem to send us letters I’m not 100% sure that we’re getting all of them, until they make some clinical sense, because there’s absolute rubbish written on most of them and you don’t know which bit of bone they fractured or, really, was that serious or was it not. In fact the only way you can tell it was serious is they kept somebody in and then it’s probably not serious either.

HCP 7 GP

Similarly, this GP suggested improving triage mechanisms so that patients could be helped to understand which service to use for which problem:

Up until now I don’t think there’s been enough kind of triaging really (. . .) Some people are turning up [to ED] when in fact if they could just speak to somebody they might have had a different outcome.

HCP 12 GP

At the extreme, two GPs suggested fee-for-service as a system change that would discourage unscheduled care use:

At the end of the day it’s [ED and OOH services] free so why not [charge patients for attendance]? (. . .) Just makes you [the patient] think a little bit more about whether you really need some unscheduled care or not.

HCP 10 GP OOH

Negotiating the system

PNs, ACMs and SNs did not discuss trying to influence the way the wider health-care system worked. Frustration was common in their accounts, as they described a lack of clinical autonomy and professional power despite their responsibilities for addressing unscheduled care use. For example, they were not directly linked to the formal information flow about patients, to the extent that they might not know about patients in their care using unscheduled care, compromising their potential to respond:

No, often I don’t get to find out [if a patient has used unscheduled care] (. . .) The GPs would have a look at it [discharge summary], action it and then, you know, file it in the patient’s notes. (. . .) The GPs might ask them to come and see me for a review.

HCP 16 PN

This PN described advising patients about symptom control and about avoiding unscheduled care use, but she was not confident that this would be supported by other team members:

From my personal point of view I find it quite frustrating I suppose, in a way, that I’m probably about the only person within the practice that has a keen interest in respiratory disease. And sometimes it’s a bit of an uphill, an uphill battle. My barriers with clinicians sometimes are the patients are coming in being prescribed antibiotics, having numerous chest infections but they’re not then feeding them into me.

HCP 18 PN

To overcome their lack of formal influence, some PNs, ACMs and SNs described negotiating informal pathways. For example, one ACM used her informal links with secondary care to get information about patients:

You only know if the family ring up you know, the next day and say, oh by the way, they’ve gone in, or sometimes we’ll not know for days, that the patient has gone in (. . .) We just literally don’t know. It’s just by sheer luck (. . .) So, as soon as we find out, to improve communication, we go down, we go on to the wards, we speak to the staff, we write our details in their notes, please contact us, our phone number. Sometimes it works, other times it doesn’t.

HCP 21 ACM

A PN described making herself more accessible to patients so that they would contact her in a crisis rather than using unscheduled care services:

I just gave him [the patient] a bit of an open door, if he’d turn up at reception, which he’s done a couple of times, I need to see [PN] (. . .) Then often I’d squeeze him in and see him (. . .) I’ll make this appointment and come back and see me then but, in the meantime, you’ve got my phone number. And I speak to him on the phone.

HCP 16 PN

Optimising the patient

GPs, PNs, ACMs and SNs described changing individual patients’ behaviour as a key mechanism to reduce unscheduled care use, suggesting that they might teach patients to control their symptoms better. They described this approach as ‘self-management’:

Well of course you can make a difference, I see my role as instructing people, training them and trying to help them self-manage themselves, and part of self-management is when to seek advice, um, when they’re unwell (. . .) And, you know, I think if you can drill certain responses into people then, um, you know, eventually they will learn.

HCP 7 GP

Most HCPs who discussed optimising patients’ behaviour in this way described using educational strategies, predominantly giving information, rather than using behaviour change strategies:

Education, education, education. (. . .) Patient education for all um chronic diseases I think is so badly dealt with. (. . .) So these are why we manage you [to the patient], this is how we manage you, this is why we’re monitoring you. Um these are why we do your track, err your checks, your annual reviews, to check to your lung function to see if it’s deteriorating, to make sure you’re taking your medication properly because if you’re taking it properly, it’s gonna reduce the risk of infections.

HCP 16 PN

All GPs, PNs, ACMs and SNs discussed how their knowledge of individual patients was a way to understand where to focus efforts to optimise the patient, and thus reduce unscheduled care use. They described this knowledge as building over time as part of an ongoing HCP–patient relationship:

I think it’s just getting that they’re [the patient] confident in you and your ability and that you’ve got some sort of rapport going with a patient. And sometimes that does take quite a long time to build up that sort of rapport that you’ve got with a patient so that they trust you really, in a way. So to make changes it isn’t always easy but it’s something that you develop. And this is why I say nothing ever happens quickly, you’ve got to build that patient and get to know that patient and have that rapport.

HCP 18 PN

With PNs and GPs, this relationship could be sustained over time, but for ACMs, the time-limited nature of their interventions created an additional tension when working with patients:

So usually it’s [ACM service] about a twelve week period of interventions, so where people are referred to us, we go away and we work with them and just see what we can do to kind of improve the situation. (. . .) There’s a lot of people, even though you’re preventing hospital admissions and GP input, they phone you a lot, you know, and you can’t really discharge those patients.

HCP 4 ACM

Summary

• HCPs do not generally see unscheduled care use as a problem, describing it as inevitable for patients with LTCs.
• Attempting to reduce patients’ unscheduled care use was described as problematic by some HCPs, reflecting their role in relation to unscheduled care policy.
• HCPs approached reducing unscheduled care use differently depending on their role. ED doctors did not see it as their role to reduce unscheduled care use. GPs described optimising the system. PNs, ACMs and SNs described negotiating the system. Apart from ED doctors, HCPs described attempting to optimise the patient through behaviour change.

Patient perspectives

Unscheduled care use framed as unavoidable

Patients consistently described reluctance to use unscheduled care services; this reluctance was expressed as a desire not to feel a ‘burden’ on services:

I’d prefer not to be a nuisance, you know, and I’ll phone them [hospital staff] up and take advice, but I’d sooner not go round and bother people.

P23, male, aged 53 years, with asthma

Hospital EDs were seen as a ‘last resort’, a service to be accessed only when other options were exhausted:

I kind of think that hospital is the last resort where you’d, where you’ve been through the doctor, or whatever and that’s where you end up when you’ve got to have something done that the GP can’t do.

P09, female, aged 62 years, with CHD and diabetes

Patients recognised that need for help had to be unequivocally serious to justify using unscheduled care. Consistent with this, patients who used unscheduled care described doing so as unavoidable, using language such as ‘had to’, ‘got to go’, ‘I just knew’ or ‘I needed it’. There was no evidence of deliberation or uncertainty:

It’s not something, it’s not something you think about. I just knew I needed an ambulance there and then, I needed it as soon as possible.

P10, male, aged 64 years, with CHD

Likewise, when patients talked about instances when they chose not to use unscheduled care, they explained that their need was insufficiently urgent to require it, choosing to wait and attend primary care instead:

If it’s something that I consider is minor (. . .) like with getting certain aches and pains [in] my tummy like I have been having or something connected with diabetes, I know I can get it sorted in the proper hours rather than out of hours, you know (. . .). Besides that, I think I’ve got in the back of my mind ‘I’m not getting everyone up for me to go to hospital (. . .) when I can sort it out tomorrow’ type of thing.

P33, male, aged 61 years, with CHD and diabetes

Previous experiences shaped future unscheduled care use

Patients described how previous experiences of health crises and of health-care services shaped their judgements about needing unscheduled care and their decisions about which unscheduled care service was most appropriate. The key aspects of previous experience were prior negotiation of urgency with family or friends, or with health-care practitioners in primary or specialist care; the technological expertise of different health-care services; and the accessibility of services.

Negotiating and establishing urgency 

Patients’ understanding of what constitutes urgent need (and thereby justifies unscheduled care use) was based on previous experiences of exacerbations and the responses of family and friends and health-care services at those times. These experiences then guided patients’ future choices of when to access unscheduled care and of which unscheduled care service to use.

Some patients talked about other people as the key decision-makers in their use of unscheduled care. These were often family or friends, but there were instances of health-care practitioners fulfilling this role:

I said ‘oh I’m not bad’. Anyhow I was going worse, obviously, and I couldn’t get my breath and you know, I tried to get up and I felt really ill. And um, [my nephew] said ‘I’m sorry [aunt], but I’m going to have to get an ambulance.

P25, female, aged 80 years, with diabetes and COPD

The GPs have said that to me, ‘don’t come, don’t come here [to the GP surgery]. If you’ve got something, if it’s your chest, go to hospital, because I’m just gonna send you to hospital anyway.

P02, male, aged 57 years, with CHD and asthma

In these circumstances, the patient was not making the judgement to use unscheduled care alone: this decision was sanctioned or made by another, trusted, decision-maker.

Judgements of urgency emerging from previous encounters with health-care providers were then applied in future instances of help-seeking. Box 1 illustrates how practitioners reinforced one patient’s concerns about his health. A specialist judged his initial choice of primary care to be inappropriate, and the patient inferred that he should access hospital emergency services in future. The care from health-care practitioners at hospital thus established a pattern that favoured future use of unscheduled care.

BOX 1

How practitioner responses shape patients’ future judgements of urgency and need to use unscheduled care

Prioritising technological expertise over established relationships in time of crisis

Patients differentiated between routine primary care and unscheduled care services according to what they offered. Patients valued routine primary care as a source of personal relationships with practitioners:

I generally stick to one [GP] because he like gets to know your background and all your history and everything else, you know (. . .) but sometimes, like I said to you I just think what else can they do for me?

P27, female, aged 54 years, with asthma and COPD

Conversely, they valued unscheduled care services for their technological expertise, perceiving this to be unavailable in primary care:

They won’t do X-ray there [at the GP surgery], they won’t do, they’ll give you tablets. If I go to A&E they get everything there, everything to take blood, to take wee [urine], and then it’s sort me out there.

P07, female, aged 44 years, with diabetes

At times of urgent need, patients preferentially sought technological expertise. This often resulted in using EDs, but a few patients valued – and used – other services because of their perceived technological, and often disease-specific, expertise, as established in prior instances of help-seeking:

Researcher:

[If] you were getting really bad, um what do you think’s the first thing you would do?

Patient:

Um I’d probably phone [diabetic nurse at hospital] (. . .) just because I know she knows how to advise me on the [insulin] pump (. . .) That’d probably be first point of call.

P11, female, aged 39 years, with diabetes

Previous experiences of services established this belief that routine primary care was not the best site for disease-specific care:

My GP is a wonderful GP, but he’s not geared to look after diabetics (. . .) The GP’s a general practitioner, he knows an awful lot about a lot of things, but the diabetic clinic are specialists for that disease.

P44, female, aged 54 years, with diabetes

Conversely, experience of services that were responsive and technologically capable informed future help-seeking, as illustrated by Box 2. This patient’s prior experience of a severe exacerbation, and the safety afforded by the hospital’s equipment and facilities, ensured his choice of this service in future.

BOX 2

How previous experiences of technological expertise and accessibility shape future choice of service

In recent years, several services similar to routine primary care have been established in the UK to meet increasing demand, including walk-in centres and OOH primary care providers. Patients only rarely talked about using these services. When patients did mention them, it was as less preferred and often ineffective alternatives that lacked both the technological expertise offered by hospitals and specialist clinics and the trusted relationships offered by routine primary care:

[Walk-in centre] don’t do nothing to you, you just walk in and they look at you and they say go to your doctor, everything like that.

P17, male, aged 77 years, with CHD and COPD

We go to A&E or I go and see my GP. It’s very rare I use the emergency doctor (. . .) Because, again, the emergency doctors, ‘cos they’re restricted to what they can do as well, a lot of them’ll say to you ‘Well, you know, go to A&E’, because I have a bad heart and I’m diabetic and everything else.

P45, female, aged 41 years, with CHD, diabetes and COPD

Judging accessibility of services

Patients experienced numerous barriers to unscheduled access to primary care at their general practices. Barriers described were mainly organisational, including limited opening hours, poor or delayed availability of named practitioners, gate-keeping practices by reception staff, and restrictive appointment systems:

Sometimes I don’t have the money to go up to see my doctors, and to see my doctor you have to be there at, like, 8 o’clock, half past eight because there’s a queue (. . .) It doesn’t open on 9 o’clock but there could be (. . .) 15 people stood outside waiting to go in to see [the doctor].

P40, male, aged 57 years, with COPD

Some patients, like P40, found travelling to primary care practices difficult because of a combination of ill health, inability to afford taxis and poor public transport. When patients talked about walk-in centres and OOH primary care providers, they were described as more accessible than routine primary care, as the barriers around appointment systems and travel tended to be reduced:

Very, very rare have I phoned up the doctor and been able to get in, you know what I mean, like, you know, to see my GP within 2 or 3 days. It’s nearly always next week, or the week after or whatever, so you need the err, you need the out-of-hours doctors really to help you out for them situations.

P24, male, aged 59 years, with asthma

Out-of-hours doctors who could perform home visits, and walk-in centres based in central locations with good transport links (in city centres or at hospitals) reduced the resources required for access:

The [out-of-hours service have] come out and seen me [at home].

P23, female, aged 53 years, with asthma

However, although some patients described these services as accessible, we saw above that patients thought them unable to meet their needs. The hospital ED, by contrast, was seen as both readily accessible and providing technological expertise:

[At the hospital ED] I always get seen to straightaway, no matter what (. . .) Once when I’m there, I know I’m alright, because I know they can pinpoint what it is and what’s doing it.

P02, male, aged 57 years, with CHD and asthma

The accessibility of a service therefore influenced patients’ use of health care both in the event of non-urgent need and in the event of urgent need. Routine primary care was seen as least accessible, requiring the most effort to use, whereas the hospital ED was the most accessible, with the additional benefit of readily available technological expertise.

Summary

• Patients described a reluctance to use unscheduled care, preferring to wait until they could see routine providers with whom they had established relationships.
• When patients reported using unscheduled care, they described feeling that they had no alternative in the face of urgent need.
• Patients’ judgements that they needed unscheduled care, and their choice of unscheduled care provider, were influenced by previous experiences of health-care services and practitioners.
• Family and carers play an important role in determining when patients access unscheduled care.

Discussion

Owing to the high financial costs of unscheduled care services and the increasing burden of LTCs, reducing unscheduled care use by patients with LTCs is a major policy priority across all levels of the UK health system and internationally.^270,277,278 This chapter reports the first study to explore the perceptions of a range of HCPs and patients about unscheduled care use in people with LTCs.

Across our sample of different HCPs involved in the provision, and reduction of unscheduled care use for patients with LTCs, unscheduled care use was viewed as a necessary component of care, with exacerbations recognised as inevitable in patients with LTCs. Thus, ED doctors did not see it as their role to reduce patients’ unscheduled care use. However, some HCPs saw unscheduled care use as a failure to meet policy targets, on which they were performance managed. Thus, GPs discussed the need to optimise the system to direct patients to more appropriate services, and PNs, ACMs and SNs, driven by policy targets to reduce unscheduled care use, described mitigating their relative lack of power and influence by negotiating the system. Most HCPs also described maximising their resources by using consultations with patients to attempt to enact behaviour change and reduce unscheduled care use. However, they only described information giving, and there is little evidence that this is effective in changing behaviour. Therefore, approaches to reducing unscheduled care use depended on the HCP’s role.

Consistent with HCPs’ views, patients viewed unscheduled care services as one of several health-care options available to them, complementing routine care, and using unscheduled care was not necessarily seen as a failure of self-management or routine care.¹⁸⁵ Patients drew on previous experiences of services and practitioners when choosing how to respond to illness exacerbations. The choice of unscheduled care compared with routine primary care was shaped by patients’ perceptions of urgency, which were in turn influenced by previous responses from health-care practitioners,²⁶ and by involvement of friends or family. Choosing between different unscheduled care providers was also shaped by perceptions of those services, formed by previous experiences of their accessibility and technological expertise. These findings, from patients’ detailed accounts of specific instances when they decided to use or avoid unscheduled care, therefore confirm and expand on previous qualitative evidence from studies in which patients were asked about their use of unscheduled care in more general terms.¹⁸⁵

Two theoretical concepts from the health-care access literature, hitherto unapplied to the problem of unscheduled care use in people with LTCs, provide an interpretive framework for understanding how patients make choices between health-care services.^279,280 The first, ‘candidacy’, describes how access to health care is framed as often requiring work for patients to achieve, and eligibility to access care is continuously negotiated in patient–practitioner interactions.²⁷⁹ Developed from interpretive synthesis of literature on access to health care in socioeconomically disadvantaged groups,²⁷⁹ the concept has been applied to health-care use in other vulnerable populations.^281,282 The second concept, ‘recursivity’, describes how future demand for services, and the process of help-seeking, is determined by a patient’s previous experiences.²⁸⁰

The establishment of candidacy was evident in patients’ accounts of interactions with practitioners in both primary and secondary care services. Figure 17 describes a pivotal instance of health care in response to palpitations (perceived fast or irregular heart beat) wherein the specialist and hospital staff ratified the patient’s decision to use unscheduled care. Negotiations of candidacy were sometimes bypassed by family and friends who acted on behalf of patients. Patients were sensitive both to practitioners’ responses to a request for help, and to the responses of family and friends; both recursively shaped patients’ candidacy when making future health-care decisions, demonstrating that help-seeking is a social process involving more than just patients’ decisions.

Recursivity was seen in patient accounts of how they chose between health-care services, particularly in the choice to use unscheduled care. They framed these choices by drawing on previous experiences of help-seeking. Although patients described using unscheduled care as inevitable, their judgements of urgency and their understanding of why unscheduled care use was ‘inevitable’ were socially conditioned, arising out of previous encounters with health-care practitioners, family and friends, and particular services. Box 1 illustrates recursivity in how the judgement of urgency, and ultimately candidacy for accessing care, is established through previous encounters. Similarly, Box 2 illustrates how previous experience of particular qualities in a health-care service (in this case, easy accessibility and technological capability) ensures future reliance on that service for similar problems. That is, previous experiences of a service can build a foundation of trust, which strengthens patients’ confidence in choosing that service in future.

When considered together, the concepts of candidacy and recursivity highlight that the key determinants of patient choice of health care evolve over time and through social interactions, with future health-care use contingent on prior service responses to patients’ requests for care, and on previous experiences of the social process of care.^279,283 Patients rely on the knowledge they develop through previous experiences of services and practitioners to choose between services and to establish their candidacy for accessing services. The HCPs talked about changing individual patient behaviour as part of an ongoing relationship. This approach would fit well with the way patients make decisions, if the patient–practitioner relationship also addressed the wider health-care experiences of the patient. The HCPs highlighted difficulties with the lack of consistency across services in terms of responses to patients. In the case of the ACMs this lack of consistency undermined attempts to reduce unscheduled care. Patients make choices dependent on their knowledge of and confidence in the services they have used before, and judge their candidacy to use services based on previous responses. If services are inconsistent, this can make patient decisions more difficult and patients are likely to prioritise based on the most salient and positive service experiences.

Patients experienced barriers to using primary care in times of urgent need, and this recursively shaped future choices between services. ‘Permeability’ offers a way to conceptualise the impact of these barriers.²⁷⁹ Highly permeable services require less work and fewer resources from patients who access them, for example EDs in the UK, which are open at all times. The permeability of emergency services is reinforced by ED doctors, who believe that their role is to see all patients regardless of need. A service that seems accessible may in fact be impermeable to particular patient groups.²⁸¹ For example, despite general practices being locally available, with designated systems for urgent access, patients in our study described that they were, in fact, impermeable because of factors such as receptionists’ gate-keeping, and travel cost or mobility problems. In our study, the combination of high permeability and technological expertise led most patients to choose the hospital ED in times of perceived urgent need.

In seeking to reduce unscheduled care use, health-care policy defines patients as in need of education to use services effectively, or suggests the need for reorganisation of health-care systems to reduce use of costly emergency care services, especially the ED.²⁸⁴ This ‘deficit’ model also dominates previous research investigating unscheduled care use, with research focusing on characteristics of the patient^20,278 or the health-care system^20,285 that increase unscheduled care use. In this study, the GPs hinted at a deficit model of patients, suggesting changes to the health-care system such as triage and fee-for-service to force patients to use the system more appropriately. In contrast, this qualitative work demonstrates that patients understood the array of unscheduled care services available and were discriminating in their use of them, influenced primarily by previous experiences of services that recursively shaped their future health-care choices. It contributes to a growing body of research emphasising the social processes of help-seeking, and the expertise patients bring to decision-making around health-care use.^286,287

When patients with LTCs feel vulnerable in health crises, it is their previous experience of services that shapes their perception of candidacy and thus their choice of service to access, with patterns of under- or over-use of services becoming established recursively based on these responses. This is consistent with the ACMs and SNs who described making their systems permeable so that patients used them instead of unscheduled care. However, this does have implications for the short-term nature of their services and what happens once patients have learned about these services and are then excluded from using them following discharge.

Both HCPs and patients recognised the limitations of availability and accessibility of primary care and the need for unscheduled care as a last resort. As previous experiences of health-care practitioners and services have a recursive influence on patients’ health-care decisions, it may be that better management in primary care, utilising pre-existing practitioner–patient relationships to address health-care use, and improved access to primary care for patients with LTCs could reduce the frequency with which patients feel they need to draw on the last resort of unscheduled care.

There were several important strengths of the above study. The patient sample was large and heterogeneous, and patient interviews covered a broad range of health-care service use, asking about decisions to use or not use unscheduled care. The HCP interviews likewise included a broad range of practitioners from across the health-care system, and data collection and analysis were conducted by researchers of different professional backgrounds, which reduced the possibility of some form of professional bias.

Limitations

The study also had several limitations. It was undertaken in north-west England and patient participants had to opt into the study when they completed the baseline questionnaire from the cohort study. The participants were therefore a self-selected group. The participants’ recall of unscheduled care use may have been limited and there was a limited ethnic diversity in our sample. These limitations mean that caution should be applied when applying the findings to other geographical and cultural settings. The practitioner group was somewhat smaller than the patient group, and some professional groups within our sample were under-represented because of difficulties in recruitment (e.g. PNs and ED doctors). For those professional groups which are under-represented, it may be that there are other perspectives on unscheduled care use that have not been captured in this study and, therefore, further research may be required to test the findings of this research.

Conclusions

Health-care practitioners do not generally see unscheduled care use as a problem, describing it as inevitable for patients with LTCs. Patients similarly described feeling that they had no alternative but to seek unscheduled care in the face of perceived urgent need. Patients’ judgements that they needed unscheduled care, and their choice of unscheduled care provider, were influenced by previous experiences of health-care services and practitioners, in particular of the ED, valuing the ease of access and technical expertise available there. Although most HCPs saw it within their role to reduce unscheduled care use, the ED doctors we interviewed did not. They reported that attendance by patients with LTCs at EDs was legitimate. This is likely to reinforce help-seeking at EDs by this group of patients. Apart from ED doctors, HCPs described attempting to change the behaviour of the patient, but described limited strategies to do so. In addition, GPs described the need to optimise the system in which patients have to seek help, whereas PNs, ACMs and SNs described negotiating (and often bypassing) systems that constrain them and the care they perceive they can offer patients.

In all the interviews we conducted, there was very little consideration, by either HCPs or patients, of any psychosocial factors that may influence care-seeking. Although the quantitative data from our prospective cohort study identified depression, life stress and living alone as important independent predictors of unscheduled care use, neither patients themselves nor HCPs appear to be aware of such influences. Contacts with unscheduled care are framed almost entirely in terms of a physical context, both at the time the person decides to seek care and on reflection, after care has been sought.

Although, undoubtedly, physical health reasons are crucially important in decision-making about seeking unscheduled care, other, perhaps more subtle, contextual factors (e.g. the fact someone lives alone or is feeling very low) fail to be recognised. Even if HCPs have the opportunity to influence patients’ behaviour, the absence of any kind of dialogue or discourse about psychosocial factors, suggests problems of this nature will remain unchanged.

In the next chapter (Chapter 6), we explore this question further, by investigating what happens in consultations between HCPs and patients with LTCs to see how, if at all, psychosocial factors and planning for action during exacerbations of illness are addressed in routine primary care.