Interpreting and managing pain

Previous work on urgent care has considered pain in a limited sense as a physiological correlate of a serious specific illness, such as a heart attack or major trauma (see Chapter 3), largely ignoring its psychosocial aspects, and pain has been examined little in relation to urgent care help-seeking more generally. We were surprised at how talk about pain dominated people’s accounts of their help-seeking behaviour. The role of pain in our participants’ decision-making processes was especially interesting given the almost complete absence of reference to pain in definitions of urgent and emergency care services (see Chapter 3).

Service users described how they evaluated the level of pain that they experienced, trying to decide if it indicated serious illness and could be used to identify a cause. They compared it with previous experience and assessed whether or not it was intolerable and if it was impairing their ability to perform everyday activities. They made contact with urgent or emergency health services when they experienced a high level of pain, particularly in conjunction with other symptoms they were worried about, such as shortness of breath or chest pains. High levels of pain were associated with high perceived risk; chest pain, for example, caused particular concern, first because the pain was very acute, and, second, because service users were worried about the possibility of a heart attack:

I woke up again at 03:15 and I could barely breathe and I had the most horrendous pains in my chest. And, I thought, ‘Oh God’. I mean, it really was not funny. It took me ages to get out of bed, stagger out of bed . . . I thought, ‘this is ridiculous’. But, the pain. And, it was so bad I was crying, you know, and I don’t do that normally.

P12, older

High levels of pain that impaired physical functioning, as in this example, affected breathing and movement, that caused crying signalled severity. Other physical responses to pain included ‘curling up in pain’. An important trigger for people making contact with health services was their perception that the pain was exceptional or different from what they had experienced before:

P20:

[In] putting more pressure on my left leg, I got a trapped nerve, which was terrible . . . You live and hope that it will improve each day and that, and nearer it got to Christmas it was obvious it wasn’t going to clear up. [I was in a] huge amount of pain! Shooting pain, shooting right down my leg. I couldn’t stand. It was unbearable. It was the worst sort of 6 or 7 days of pain that I’ve had for a long time. I mean nothing that I did seemed to you know, help it. It was excruciating sharp pain [ ].

Interviewer:

So you also mentioned that your husband was quite concerned in the period leading up to you going to [name of UCC]?

P20:

Well yes he was, because you know, I couldn’t do normal things . . . I mean on Christmas Day . . . we had to find something I could sit on the right level in order to do the cooking on the stove, because I just could not bear any weight on that leg.

Older

Awful pain . . . I was laying back on the sofa . . . and I couldn’t move, I couldn’t move an inch. I couldn’t have even grabbed a phone at that stage. It’s a pain that you can’t describe. I’ve never had a pain like it and I never want it again, but I did have it again.

P36, older

Some described how they usually managed painful symptoms using a ‘wait-and-see’ approach, but help was sought if symptoms persisted when services were available and accessible:

I was trying to manage it myself . . . so I think it’s not an immediate, sort of, first resort, it’s after you’ve tried things yourself and then you go to urgent care.

P88, younger

I think I just knew it was a chest infection because I’m usually, I don’t get ill that much and usually I’m like, ‘I’ll be fine, I’ll be fine’. But then when it got to a point I was, like, ‘no this is definitely, definitely too much’, so I went in.

P90, younger

Help-seeking for a recurrent health problem was precipitated by a change in pain level. P50, for example, had a history of cystitis but attended an ED because her pain seemed different from what she had previously experienced:

It was lower abdomen and it was causing me discomfort so I felt like I needed to urinate and I couldn’t. And I was having a lot of shakes and cold sweats. And, yes, really struggling with the pain and it didn’t feel normal. I’d had, you know, cystitis and things like that in the past. I get it quite often, actually . . . but it was unlike anything I’d had before, which I was worried about.

P50, younger

Pain described as ‘internal’, or that occurred in the absence of an obvious, visible injury or cause, provoked particular anxiety:

I think it’s a lot worse when you can’t see the pain. With a broken arm or a sprained thumb you can see swelling, you can see something is out of place. But when you feel something like a long, sharp, constant pain inside, you can’t see, you’re not used to it so it’s quite a scary thought because it’s just the unknown and it starts the whole, sort of, fear process and just spiralling of your thoughts of what it could be so you want to get that sorted.

P37, younger

Both urgent and emergency care services were considered appropriate help-seeking choices for severe pain. When asked to describe ‘an urgent care problem’, service users, across all population groups, named pain as significant. Urgent care services were viewed as being able to provide pain management or pain relief:

P38:

I think emergency would be life and death, like, compared to urgent [which] could be someone who’s in a lot of pain who needs pain relief . . .

Interviewer:

If I said to you, what’s urgent, you would say . . .

P38:

Pain relief, doctors, things that don’t . . . need to go to A&E. But things that could be dealt with at home, maybe.

Younger

Interviewer:

What would you describe as an urgent care problem?

P34:

Yes, so for example, if you have a massive toothache, and you don’t know obviously you can’t function because that’s very painful, so you would go. If it’s a night, night time, then you go and seek urgent health care just for strong pain relief or whatever they can do in there, I think.

East European

Advice from NHS 111 was useful for some who experienced unexplained pain, while others sought face-to-face help:

Like the kidney stones, or the strong abdominal pain, really excruciating pain . . . I thought ‘no, rather than rushing, or calling an ambulance and going up there, let’s phone this 111 number and see what they say first’.

P2, East European

P56a:

If you’ve got something that you couldn’t stop bleeding or you’ve got a terrific earache or something that was so painful, like poor little [name of grandchild] gets, you know, you’ve got to do something, haven’t you, if there’s no doctors available anywhere or you can’t . . .

Interviewer:

So you would go to a minor injuries unit for that?

P56a:

Definitely, yes, because . . . you never know with children, do you?

Older

People described how they made judgements about the likely cause of their pain, and whether or not it could be managed in the short term. This might mean waiting some time for the general practice surgery to open, and using GP appointments in cases of high levels of pain appeared to be more common in the older and the East European groups:

I had tonsillitis, and the pain was really bad and I phoned the doctors. Because it was my throat, so I knew it wasn’t something that I need to be . . . I knew it wasn’t the case of an urgent emergency case. Routine can also be quick; you can still be seen.

P2, East European

I couldn’t get up in the morning, my back was killing me . . . I said [to a friend], ‘No . . . the breathing is agony and I’ve got a pain in my back around the side’ . . . but I had to drive home. There was no other way of getting back [ ] So, it was a 2-hour drive back here and I was fine driving, but, going around roundabouts . . . Nearly died every time because the pain was excruciating. Got home. Rang the surgery first thing the next morning, which was the Monday.

P12, older

Things described as ‘emergency problems’ were strongly associated with severe pain with an unknown cause. A decision to call an ambulance was made when pain was accompanied by other symptoms such as being unable to move:

P35a:

Well, he was static on the sofa, couldn’t move . . . He’d been like that for three quarters of an hour because I was out, and I came home and found him in a state of . . .

P35b (husband):

Pain.

P35a:

Shock and pain and, well, I mean the shopping got left out there, everything was left, and I just phoned 999 straightaway.

Older

Younger interviewees were more inclined to choose to attend the ED to manage pain, and often felt that there were no alternatives to the ED (sometimes because of the time of day, and sometimes because they did not know where else to go):

It just went so bad [hip pain/hypermobility] that there wasn’t any option other than to get the pain sorted at A&E. Which didn’t happen anyway, so I wouldn’t go back to A&E . . . I honestly don’t know what I’d do next time . . . I’ve pretty much said the next time that happens I would phone an ambulance because I’m just not getting the attention and the care I need at the moment.

P49, younger

Interpreting and managing anxiety

High levels of pain, and accompanying uncertainty about symptoms and what to do, often provoked anxiety or panic. Across all three groups, responses to symptoms were frequently described in terms of fear or anxiety, and interviewees articulated this using a range of words such as ‘panic’, ‘scary’ and ‘frightening’. When interviewees talked about panic in relation to the help-seeking behaviour of others this was often used to imply over-reaction, and irrational and/or selfish actions. By contrast, managing their own anxiety was presented as a legitimate reason for making contact with urgent care.

While anxiety was used to legitimise personal decisions to seek help from urgent care services, some service users reflected that their interpretation of urgency might differ from that of a health-care professional and they recognised that anxiety fuelled decisions about what to do ‘in the moment’. This recognition of the subjective nature of illness and the role that anxiety plays in rationalising health service use was more common in the older age group:

It might not be in their definition of a doctor’s emergency, whether they can do something about it or not, if they’re doing from a doctor point of view. But from our point of view, it’s a panic [ ] When calling 999 for my mum . . . just being too floppy to get up . . . It’s not a sort of medical emergency, in their book, in their definition. But it is something that . . . needs to be dealt with . . . And it is something that is pretty concerning . . . It’s just that there’s a sort of boundary thing, the definition. When we were living it, it’s just being in a, sort of, very frightening situation.

P18, older

A minority of service users, particularly in the younger age group, identified themselves as having an anxious personality type and being prone to worrying about their health, and they used this to legitimise their use of urgent or emergency care services:

P32:

Blurriness, particularly in my left bottom corner in the left eye, real irritation under my eyelids, a kind of scratchy feeling under my eyelids and just real discomfort. It wasn’t pain, just real discomfort, very dry . . . very dry.

Interviewer:

And how did it make you feel?

P32:

I think I have a tendency to worry a lot anyway, but when it’s your eyes, they’re a certain thing you can’t help but think about because you see out of them, so I was so aware of it all the time, and I felt a bit . . . I felt quite worried, definitely.

Younger

Older service users described ways in which they tried to manage anxiety, including self-talk (telling themselves that they would be OK) and behaviours (e.g. deep breathing):

‘I’ll get better, I’ll be all right. I’ll be all right, I’ll get better.’ But as time goes on, you realise your chest is getting tighter, OK, your breathing isn’t what it should be, and you’re sweating a bit through anxiety.

P7, older

They [999 ambulance] came almost immediately, then rushed me into hospital because my oxygen were right down low I didn’t hardly have any oxygen and they couldn’t control my heart and so they said you will have to go in. That happened about two or three times . . . and then it settles down when they give me the tablets and if I had it before that I could sit up and tell myself not to panic and do some deep yoga breathing to slow it down.

P24, older

Those reporting less anxiety tended to seek reassurance from urgent care services including NHS 111, but those experiencing more anxiety and high levels of concern about their health problem were prompted to seek help from emergency care. Contacting emergency services was a last resort chosen when they were highly anxious and did not know what else to do. However, for many older people, calling 999 or attending the ED was a first response to a problem when they were anxious and worried:

If you’re worried silly, it’s going to be A&E.

P28, older

Well I didn’t know what else to do at the time because I was in a state. Well not panic, but I was highly stressed and I thought I don’t know what to do so I just dialled 999 and they asked me what was wrong.

P19, older

Across all groups, service users gave examples of how anxiety could influence their judgement about a health problem. They described ‘freezing’ with panic and not being able to undertake basic self-care tasks, and not being able to remember or understand information that may have been given to them by a health service such as NHS 111:

Because your mind runs away with you when you’ve got something wrong, and you could think you got all sorts of things, and it might not be any of that.

P23, older

I’m 25, it’s pathetic. Usually I need someone to come with me . . . because sometimes you don’t listen. So, if you’re panicking or if you’re in pain I just don’t take in information so it’s nice to have someone there with you to be there.

P43, younger

People also talked about how they revaluated their experiences once they had received diagnostic information and they were able to acknowledge that their behaviour was partly driven by anxiety. They described their responses as an ‘over-reaction’, noting that they contacted emergency care when they might have more appropriately made contact with an urgent care service. Such ‘over-reaction’ was also linked to the social context, for example if someone lived alone or if the problem occurred at night. Younger service users were perhaps more likely to describe their help-seeking behaviour in these terms. In some cases, self-reflection prompted changes to help-seeking behaviour, such as seeking out information to manage their anxiety:

In my mind, the worst that could happen was losing my sight, which obviously now it seems like a big over-reaction, but at the time . . . I wasn’t aware of blepharitis and what it was . . . [Now] I think I always try and look up symptoms beforehand just to check if it’s something I can self-diagnose easily, and if not, then I’d be more open to going into urgent care.

P32, younger

Managing risk

Illness work requires service users to assess the risks of action and inaction (e.g. seeking help vs. delaying or not making contact). Managing uncertainty and risk was a key aspect of most accounts in the interviews. For many participants, deciding what to do was not straightforward. Many reported debating – either with themselves or with family members – the best course of action to take. This illness work entails balancing anxiety with action. Fear of serious harm or death was often balanced with ‘bothering services unnecessarily’, and this illness work is undertaken in the context of moral decision-making and judgements about the availability and accessibility of services:

Yes, again reassurance. So . . . because you thought you won’t bother your doctor. Because I thought, ‘well, I won’t get an appointment with the doctor’.

P16, older

Seeking reassurance by consulting health professionals or talking to members of lay networks is also a way of managing risk and can be described as ‘safety netting’. Reassurance was sought to ‘make sure there’s nothing wrong’ or ‘being on the safe side’. NHS 111 was often the first port of call, particularly for the younger and East European interviewees. For some service users, this tactic was used in anticipation, as a pre-emptive action to ease anxiety and worry:

Well, I didn’t want another weekend of worrying about, you know, ‘what shall I do now’, because those nights when I couldn’t sleep, I just sat up in bed, in fact when I can’t breathe, I sit up in bed, and I was just sitting up in bed with the radio on, and sort of drifting in and out of sleep, on and off all night.

P26, older

For many service users, there was a moral tension between wanting to represent themselves as responsible citizens, who were confident in their ability to self-care and make rational judgements, and the desire to delegate illness work to health-care professionals. NHS 111 was valued by some as a service that could provide reassurance and advice, and it was used to check if they were ‘over-reacting’:

It’s 111, because they asked me about symptoms and then they can sense if I’m overdoing it [over-reacting] [ ] But if I can see that something is wrong and I don’t know . . . That’s why it’s easier to phone 111, because they know the symptoms. They know that if I’m overthinking, or if I’m worried too much.

P1, East European

Using an ED for reassurance was less common. For P16, there was a recognition that using the ED to obtain reassurance for less urgent problems may be construed as ‘abusing’ the service, but the immediacy of this service was attractive:

P16:

It feels reassuring, and if you’re stuck and you’ve sprained your ankle after a few drinks you go to A&E, don’t you? It’s part of our comfort blanket maybe, A&E. Yes, that’s why we use it . . . and it’s not that we’re abusing it, maybe we just feel safe. You feel safe at A&E because you know even though you wait . . .

Interviewer:

That you will be seen.

P16:

You will be seen.

Interviewer:

Get the reassurance you need, and you feel safe . . .

P16:

Yes, whereas maybe we should get the reassurance from the chemist, which is cheaper. Because it costs so much money, doesn’t it? To go to A&E.

Older

P61:

I would have gone to A&E directly.

Interviewer:

Why would you have done that?

P61:

I was not feeling well, so I just wanted to make sure there’s nothing wrong, so I would have gone straight to A&E.

Interviewer:

What was at A&E for you that you didn’t think you’d get at another service?

P61:

Just the immediate check-up.

East European

P76 suggested that she chose to attend the ED ‘to be on the safe side’. Her previous positive experience, the fact that the ED staff did not pass judgement (‘they were fine about it’), encouraged her to consider it again as an option (see Navigation work):

P76:

I have been to A&E before I kind of figured, if it is not life threatening then they probably won’t, like, do any more than go to your doctor’s appointment . . . The problem is because I don’t know, from my perspective, I don’t have any medical knowledge or anything. So I think if something is kind of wrong you should just follow up on it regardless of what you think because sometimes it can be serious and within 24 hours. So that I just wanted to be on the safe side basically. But then it is good to hear from them because they are, like medical professionals, they were fine about it.

Younger

Strong ties

Much illness work involved strong network ties. When a service user had direct responsibility for the health of others (e.g. caring for children or a partner) and when the frequency of interaction between people was high (e.g. living in the same household), these network ties exerted a strong influence on help-seeking. Many service users described a hierarchy of support for their decision-making when experiencing episodes of ill health:

Well it’d be you, wouldn’t it [husband’s name]? Then [our] daughter and then the GP.

P52, older

Illness work may be shared or done on behalf of others, and the responsibility of managing health risks was seen as greater when undertaking illness work on behalf of other family members:

Interviewer:

Do you generally go for your health appointments together; do you make appointments together?

P24a:

I always make them together with [husband’s name].

P24b (husband):

Otherwise I have to start remembering what has been said . . .

P24a:

[Interrupting] and he can’t. I always take him. He comes with me, with mine but he doesn’t come in with me because you get a bit confused.

Older

What’s the difficulty? It’s because they’re [parents] bloody wired in a different generation [They say] ‘Don’t need to go, I’m not calling the doctor, I’ll be all right’. And all that sort of stuff. And it’s just like, ‘basically, sorry, Dad, but you’ve banged your head, don’t know what’s happened, I’ve got to take you to hospital, as your son’. That’s it. Imagine if we leave it be to the morning, something happens in the night. I couldn’t face my sisters.

P11, son on behalf of father

Among the older age group, there were differences between married participants and single or widowed service users. For married participants, most illness work was done in consultation with their spouse and they tended not to seek advice or support from others:

Interviewer:

Do you look to your neighbours, or your daughter, or anyone else, for your care decisions or information and advice?

P82a:

Not really, do we? [Name], my daughter, tends to ring us if she’s got a problem.

P82b:

Yes, she does . . . It’s almost like confirmation of what she’s thinking.

P82a:

She just likes that reassurance.

P82b:

It’s a lack of confidence, really.

P82a:

But we’ve not really got anybody else that we would ring, have we? Not friends or family that . . .

P82b:

No, well nobody you can trust. That’s horrible for me to say, we know loads of people, but, you know . . .

P82a:

None of them are that close enough to . . .

Older

Interviewer:

And do you generally make your decisions about health care on your own or do you involve your husband, family, anyone else?

P39:

No, we usually talk about it, you know, between us.

Interviewer:

Yes? And what about neighbours? Do you involve anybody in . . .?

P39:

No!

Interviewer:

Like taking you places or anything like that?

P39:

No.

Older

Older participants without a partner often involved their adult children in illness work:

About 2 weeks ago, for some unknown reason, I had a nosebleed. I managed to stop it the usual way, pinch your nose and this sort of thing. Took about 10 or 15 minutes, maybe longer, to stop completely. Then it happened again for no apparent reason and we stopped that one. Then it was on a Friday morning . . . it started again and it wouldn’t stop. Fortunately my two sons were here because they live with me and the elder of the two phoned up 111 and they said go directly to A&E. So they took me.

P19, older

I would normally call my daughter if I had a [health] problem, because she’s a lot more reliable and a lot more . . . you know, takes control of things. But she sort of more or less runs the local old people’s home, doesn’t she? And so she, you know, she knows she’s up with all the doctors, sort of thing. She’s got no qualifications or anything . . .

P14, older

Younger participants also relied on close family ties (predominantly a parent, a partner or, sometimes, a sibling). Advice from others played a role in how pain was interpreted and helped to sanction decisions – in the case of P32 and P66 – to attend the ED:

I went to urgent care, A&E, about 3 weeks ago. I had a hip operation last year and the pain came back, and I was in quite a lot of pain [ ] I spoke to my sister on the phone quite a lot, and she said to me ‘if you can’t think because of the pain, [you’re] in a lot of pain, you should go to hospital’. I was sat with my boyfriend at the time and he helped me come to the decision. He said, ‘if you want to go, we can go; if not, we don’t have to’ . . . I think they could see how much pain I was in so they told me to go.

P32, younger

I actually called my dad for that one . . . I was like, ‘Dad, I’ll call you, and can you bring a first aid kit and just give me an opinion on whether you think this is a bad enough cut?’ Because I just . . . I didn’t know . . .

P66, younger

Younger participants were often reluctant to involve friends and weaker ties such as neighbours and community organisations when experiencing an illness. Although younger service users discussed illness with their friends, it seemed that they did not place much trust in their friends’ opinions, and instead parents were viewed as a more credible source of help:

My mum was really supportive, friends . . . a little less so, because I think it’s . . . you know, it’s just, especially at that age [18], and I don’t think anybody really, like, had much of a clue. Couldn’t really empathise properly with what I was going through, and you know. He’s just complaining all the time, ‘oh, he’s always ill. It’s probably just you know, just complaining about stuff. Attention and whatever’.

P65, younger

I think I would discuss it with friends. I’d be like, ‘oh, this is really annoying, this is’. But I wouldn’t look to friends with solutions. Like, I’ve been saying to people on my course at the moment, like, ‘the rash is really annoying’. And they say a million and one things, and then they become more annoying than the rash, because they’re like, ‘oh, it might be this’.

P9, younger

P76 was an exception; she described talking with a friend to assess symptoms and decide on the best course of action:

Like with [name of friend] who broke her arm. I sat down with her before we looked to call an ambulance and said ‘look how serious is it’, you know, pain scales, levels, where are you, kind of thing. And when she said she was in a lot of pain I just kind of thought ‘well, probably it is best to just call 111 and find out what we can do’.

P76, younger

East European participants relied heavily on strong ties (family and friends), and reported less wide-ranging social networks, in part because of their migrant status. Lacking geographical proximity to close ties, they connected with family and close friends by telephone:

OK, so I think the most important one would be my mum, as well as my closest friends. The least, would be work. Yes, [and] the internet.

P53, East European

In the case of P63, an extended family of parents, grandparents and aunts interacted and shared information about ill health, partly encouraged by shared experiences of illness in the family:

P63:

Yeah, well we all live close by so.

Interviewer:

Do you generally call on each other for health-care decision-making and stuff like that?

P63:

Yeah, we have had a bit of a year of it really. My aunty had . . . cancer in her kidney and then my dad last year, it turned out to be pericarditis . . . but obviously that [was] quite scary, crying because his chest was hurting very much because he couldn’t breathe. And I wasn’t around for that, I just got a phone call saying we were at A&E, Dad’s gone in [ ] This was during the period of time my grandmother had just come out of hospital as well and she knew because she knew . . . something wasn’t right because my dad was ringing her every day to see how she was, as well as popping round to see her in the morning . . . Like in times of need, I think everyone is there for each other pretty well, so that is good.

Younger

Close family ties with clinical expertise were particularly valued by all groups. When social networks included health professionals, these people were informally consulted to inform decisions about help-seeking:

I can definitely put my husband and mother [as sources of support], I would say. She’s a doctor . . . she’s not a GP, she’s a paediatrician.

P54, East European

My husband jumped out of bed, he’s actually a nurse; he picked him up [son], put him on the bed, raised his legs, but he wasn’t comfortable because his chest was hurting. If he sat up, he was dizzy, so we waited for about 20 minutes. It was quite a difficult situation because my husband, having some knowledge, was wondering what it could be.

P73, older

Some service users sought to avoid involving close ties in illness work. Interrogating the data, it became clear that this was common in parent–child relationships, either because younger people did not want their parents to worry, or, sometimes, because older service users did not want to worry their children. In these circumstances interviewees reported trying to cope on their own, using online resources or drawing on weaker ties:

It was bad, I could hardly breathe . . . I could see I was going blue and I thought I did not want to panic [my husband] so I was trying to cope with it. So in the end I did wake him up and I said I did not feel very well and I thought we ought to call the paramedics.

P24, older

I may use my mum sometimes but I just don’t really want to bother her because she’s just going to be so worried. So I would probably prefer to do this kind of online symptom checks. If there was something that I was really, really worried about and then the next thing would be if it was an emergency I would contact the GP.

P54, East European

Weak ties

Weaker ties, such as acquaintances and neighbours, played a part in older people’s accounts of help-seeking. Those who cared for a partner, were single or widowed, or were more socially isolated categorised weak ties as important. These personal networks included neighbours, pharmacists, tradespeople already providing services, local transport and amenities:

I’m very happy here, I wish I’d moved here before. Because we’ve got a very close-knit community . . . I can always ask people for help . . . I don’t feel awkward asking neighbours to do things because I do things back . . . I’ve got three paramedics living next door to me as well.

P55, older, widower

The neighbours are brilliant. They are so important as they are invariably there . . . or I could phone our really good friends who are a 10-minute drive away . . . then the GP. If I needed my son or daughter for anything that I, well, yes, if I needed them to come, I know they would come.

P93, older, married carer with children far away

In the case of P55 below, older participants were often involved in the care of their elderly neighbours, and sometimes referred to these ties when making help-seeking decisions:

I went to a neighbour, and the neighbour did it for me. I knew she was a first aider. What I’d done, I’d run a knife into my hand and it was bleeding everywhere. I couldn’t stop the bleeding so I went to the lady next door but one and she sorted it all out for me.

P55, older

The younger group talked more about using social media and the NHS Choices website in help-seeking. They were often aware of the pitfalls of using the internet in terms of possibly exacerbating anxiety and providing unreliable information, and so tended to seek advice from the internet in combination with talking to other people:

I’d probably Google search or try the NHS one, and then if I couldn’t find anything that seemed reliable, or . . . even if I found anything I’d probably then call 111.

P65, younger

Run it by, I think, talking to other people. So if I was at my partner’s at the time, or at home with parents, talk to them about it. Probably, I don’t know if I should admit, but probably have a quick look on the internet. See what that says.

P63, younger

Comparison with others

Interview accounts compared people’s own use with that of ‘others’. As we noted in Chapter 4, other people may often be judged as time wasters, but individuals, as one might expect, justify their own use of services as rational, appropriate and responsible, even for apparently ‘less urgent’ symptoms. P13, for example, was extremely disapproving of others but admitted using the ED for a more minor issue. She legitimised this help-seeking behaviour by referring to the level of panic she experienced, but she was also one of the few interviewees to point out the contradictions in her stance:

I think people panic so much, they can have a little thing like ‘all right you’ve broken your arm, it’s going to hurt like hell, but it’s not a big deal, you’re not dying. It’s not major, so take yourself to the hospital, not A&E, because it’s not an emergency’ . . . You need to go to A&E when you are bleeding like severely, or there is a chance that something . . . could be fatal. You know, that’s what A&E’s for. Unfortunately we were there for something that really was not quite [an emergency] . . . I’m being really, really bad right now, but I panicked about it.

P13, younger

Responsibly using services, especially the GP service (‘not rushing off to the doctors’), was important to many interviewees:

Personally I’m one of these people, I won’t go to the GP unless I really have to and unless I’m near death I just don’t do it. So I think an emergency is literally if you’re really deteriorating quite fast or you’re put in a situation where you’re potentially putting yourself at risk, I think then you need to go to A&E.

P40, younger

I go to the GP quite a lot for valid reasons. I’m not one of those people that go there for no reason. But, like, I do go there quite a lot. I trust my doctor a lot I think he’s really good but if I needed medical help I’d probably go to him first unless obviously I’d like broken my leg or something then I would go to A&E.

P43, younger

P22 criticised others for using the ED for minor illnesses, but acknowledges that ‘others’ may make the same criticism of his actions. He provided an example of calling 999 for a non-life-threatening problem, all the while emphasising his attempts to be a responsible citizen (e.g. going to a WIC first) and indicating later in the interview that his son telephoned for an ambulance:

I take the local paper and the headlines on there is, they found out that [name of] accident and emergency, one in seven [people] shouldn’t be up there. Well I would say that is a very modest estimate, I’d have said one in three from my experience . . . I mean people go up there for the slightest things. Things they used to treat at home, they now go to A&E for [ ] I’d seen a chap who’d . . . He’d burnt his hand with a bit of drain cleaner. Well you know, it was only a little bit, it’s the sort of thing you’d put under the tap and, you know, see what develops as it were [ ] But I mean, they may look at me and say, ‘well, what’s he doing here?’ So it’s swings and roundabouts . . . My foot was hurting . . . then my son turned up. And I said, ‘well you know, you get us down to a walk-in centre’. But I couldn’t walk. And they couldn’t get me down the stairs you see. So my son phoned for an ambulance, 999 ambulance . . . then asked me what it was for and I explained I’d had a fall, and my foot . . . I couldn’t walk because of my foot and all that. He was ‘are you having breathing difficulties or chest pains?’ ‘No.’ ‘Oh right, so it’s not a dire emergency, let’s put it that way.’ I said, ‘No no, not at all, no, not at all. No, I can wait a bit’ . . . They eventually turned up. I had my accident about half past 10, we phoned about 11 o’clock and they came at half past 2.

P22, older

The notion that unnecessarily using care could deprive or delay care for others was perhaps more common among younger people. Sometimes interviewees said that they did not use services because ‘other people need care more than me’:

. . . the pain just shot up my back, so I presumed, ‘OK, I’ve done something to my back here’. And I ended up stuck on the floor. My mum phoned my doctor . . . she wasn’t at home . . . and the doctor prescribed me some painkillers over the phone. I didn’t get to see anyone at that point . . . Looking back now, I probably should have phoned an ambulance because I was unable to move but, again, my attitude is there’s people worse off than me, those people that need the ambulance for.

P49, younger

Sanctioning choices

Members of our participants’ social network helped to sanction or legitimise decision-making, and could alleviate the moral responsibility of decision-making for individuals. Participants gave examples of times when they had been reluctant to contact health services, but were persuaded to do so by others:

Perhaps what other people around you think, because I think sometimes I’m the kind of person that I know I tend to play down a lot of how I’m feeling, because I don’t like going to the doctor and I don’t want to go to hospital, but you know, in that moment my boss said ‘no, I think you need to call 111, you’re clearly not right’.

P68, younger

Younger service users were more likely to cite others (usually parents, but sometimes managers at work) as instrumental in making the decision to seek urgent or emergency care. P9 suggested that her parent had a tendency to over-react, and other younger people indicated that family members (usually parents) experienced high levels of anxiety about their child’s health problems:

P9:

I complain a lot [when unwell], but I generally, like, I just, sort of, get over it, and then don’t really . . . I’ve got quite a high pain threshold, I think . . . They [parents] were both quite shocked that something serious was actually happening [ ].

Interviewer:

And had you lost consciousness, or . . .?

P9:

. . . Yes. I think my mum was quite scared. She was probably more scared than I was.

Younger

In the following account, P51 describes her mother as a someone who has a tendency to ‘panic’ but then justifies her tendency to call on the emergency services as a sign of caring:

So you’d have some people who break their legs and then they’d be like, I might as well get myself there then. And some people, the first thing they’d do is call 999. So yes, I guess it’s just down to how much the person chills and stuff and how unchilled they are I guess [ ] I know like my mum would probably panic immediately kind of thing. She’d like . . . She’s very caring and stuff so if something’s wrong, BAM, kind of thing.

P51, younger

This indicates some of the complex reasoning behind decisions to seek help. In addition, interviewees provided accounts of occasions when help-seeking for an apparently trivial matter had been vindicated when their symptoms had been found to indicate something serious:

[My] mum used emergency services because when mum was pregnant with her, she felt something was wrong. She used the emergency. She called someone and they come up, and told her she had to have an emergency caesarean. Even though we take the mick out of her for being a hypochondriac . . . It turned out to be right that time, and we felt a bit, like, ‘no, Mum, there’s nothing wrong’. OK, there actually was something wrong. We felt quite bad about that.

P38, younger

Entitlement

Some service users felt entitled to use health services. Older and East European interviewees in particular sought to justify their entitlement; they suggested that they were not sick very often, did not use services unnecessarily, and contributed to the health service via taxation. Older people were the most likely to articulate the view that they felt they had a right to use the NHS because they had ‘paid into it all our lives’. This sense of entitlement was particularly strong when a service user perceived that they had been treated as a time waster or that they had not received the care that they had wanted:

I thought, ‘hang on a minute, you know, he might be older, but we paid all our life into this’, you know, and we’ve never asked for anything very much from the National Health, and you’re made to feel as though you’re not wanted, you know.

P23, older

I don’t think, at 82, I should have to wait seven and a quarter hours to see a doctor when I’m in pain. And, it’s obvious one was in pain, because you can cry with pain, and I certainly was crying with pain. I mean, I really didn’t know what to do with myself, other than sit.

P12, older

I am not really a sickly person so I don’t get sick at all. The only time I go to doctors is for smear tests or travel, to have vaccinations. So I don’t go to doctors at all. So I think they knew it must be something I’m really worried about to arrange for an emergency.

P54, East European

The sense of entitlement from paying in via taxation, or, as in the case below, from working in the NHS, extended beyond the discussion of urgent and emergency care help-seeking. For example, this East European interviewee explained why she felt that she should be able to access NHS care:

We tried to get to do regular checks because in Hungary, we used to go, yearly check-ups [for skin cancer] to see what has to be checked because he is, you know, he has loads of spots . . . So we said it’s bonkers to go back. We are paying national insurance. I am working in the NHS, both of my daughters work in the NHS. It’s bonkers that we can’t have this care here. We got a referral after a long while from GP to see a skin specialist in community care, and he was really rude. He said, you know, ‘you don’t have anything major to worry about; you shouldn’t be wasting NHS time’.

P33b, East European

These ideas about entitlement also linked to those concerning fairness – and service users were especially upset when being responsible was not rewarded. The sense of injustice was acute following a negative experience with urgent or emergency care (e.g. when they had been made to feel like time wasters). P55, for example, felt that she had been treated as a nuisance because she was elderly. She perceived that others were able to gain access to care by being more demanding (or more charming):

I’ve been to the walk-in centre . . . Well, I’m not very impressed. You have to wait a long time . . . if you’re an old biddy, they don’t want to know [ ] I went up there one Sunday morning because I knocked a pan of water over my hand and it was all wrapped in a towel and everything. I walked in and I was shaking. I was upset, I was crying. [The nurse said] ‘what’s the matter with you then?’ So I said, ‘well, I’ve scalded myself, I think’ . . . She said hour and a half [waiting time]. So I said, ‘OK, thank you’ . . . Then this young man came in and she said ‘what are we going to do with you here?’ And this happened three times. ‘And, oh, I’ve got a cough. I’ve had it for 3 days.’ ‘Oh, well, we’ll see if we can get a nurse’ . . . Maybe it’s just me but . . . three young men all got charm and I got, ‘well, you’re just a bloody old nuisance’ [ ] It’s my generation. You don’t make a fuss . . . You assume that the system works and that you will eventually be seen. But it strikes me that the louder you shout, the quicker you get heard nowadays [ ] It seemed to me that they’d come for rubbish [to the UCC]. You know, one had got a cough and the other one had not been feeling very well. Probably got a hangover, you know? It seemed quite trivial for me sitting there with a scalded hand. I would have thought that was more of a priority than somebody with a cough.

P55, older

Similarly, P24 was upset and defensive about his experience with the ambulance service and his perceived wider portrayal of the elderly in society as being demanding and high consumers of health care. Again this interviewee drew on the idea of entitlement and having paid for services:

I was completely confused in the end the way they spoke to me [paramedics] . . . he was quite bolshie and I thought ‘well, we started with the NHS in 1948 and we have gone through our lives, we have paid for it and we have not bothered them as much as some people do, we have been pretty healthy’, haven’t we darling?

P24, older

Although not a commonly expressed view, a small minority of elderly service users held the belief that others (notably students and migrants) placed additional demands on pressurised services, thereby depriving them of the health care that they felt entitled to:

I’ve got nothing against students but they are clogging up the system . . . Is it a walk-in place down at the [name of area]? [ ] Why can’t they make that into a student surgery? [ ] Loads of them live around there . . . But it would be a point where they would go, rather than clog the surgeries and [name of ED], of their own.

P23, older

The younger group were much less likely to express individual entitlement although a few suggested that young people were marginalised by health services:

I should think that health-care systems around the world differ quite a lot, like Canada is a lot more efficient than in the UK, even in Australia they seemed a lot quicker in getting you seen. The UK is a bit slow, they just seem to ignore young people. They always put other people first, so they do not give us the services that we need.

P62, younger

Availability

Service availability is contingent on time (i.e. the time of day that the symptom occurs in relation to the time that particular services are available). Service users need to know opening hours, as well as what is offered at each service, in order to navigate the system:

I’m not sure if minor injury unit is open 24 hours, but for me that would be strictly what is the issue. So let’s say he [son] had a fall from stairs and you could see a fracture or whatever, it depends what time. I guess . . . Minor injury is not open during the night so I would probably call first A&E, ask them first.

P67, East European

There was considerable confusion among interviewees, as there had been in the citizens’ panels (see Chapter 4), about what sorts of illnesses and injuries could be dealt with in urgent care. There appeared to be more confidence among interviewees about what services an ED would provide. This was often seen as a ‘one-stop shop’ where a range of specialist facilities could also be accessed. Choosing to attend an ED was a way to maximise the chances that the facilities needed would be available, thereby avoiding the risk of a potentially wasted journey:

If you’ve broken a leg, say, you need it to be not made worse. It needs to be positioned and put in plaster, so your average GP surgery’s not going to be able to do all that . . . If it requires an X-ray, then you clearly . . . I believe the minor injuries [unit] have X-ray facilities . . . but is that known? I think a lot of people go to A&E because they assume or know that they’re going to need an X-ray, but X-ray facilities are available [elsewhere].

P21, older

P70:

It’s a nuisance to get to the hospital because it is an hour away but once you are there . . .

Interviewer:

It’s all there.

P70:

At the hospital [laughs].

Interviewer:

So here in, like, town, there are different services taking place at different places and . . .

P70:

Yes and that’s a bit of a pain.

Older

However, the ED might also be avoided by those who perceived it as a busy or an unpleasant environment. Urgent care was sometimes described as a more comfortable, less crowded environment (even if its waiting times were similar to those of the ED):

P5a:

I think I prefer to go to one of the drop-in centres, rather than up to [ED] because that’s . . . it’s usually overflowing, isn’t it, with people waiting to be seen . . . It’s a pleasanter experience, anyway, I have to say, certainly at [WIC]. The [name of WIC] is a bit dire, I suppose . . . it’s rather cramped, and you probably . . . sometimes you can’t get a seat, so . . . it’s just it’s usually crowded, people coughing and spluttering all over the place, kids screaming. I shouldn’t complain about that. It’s just, you know, not a very pleasant environment.

Interviewer:

Yes, and what’s your understanding of the difference of the care that you might receive at A&E as opposed to the walk-in centre?

P5a:

. . . I’ve not experienced any difference in the standard of care, so whenever I’ve had to access these places, it’s always been OK; apart from waiting, car parking at [WIC] is a pain. The . . . car parking at [ED] is not very good now, either.

Older

Some accounts highlighted a lack of confidence in the health-care professionals at particular services, opinions formed from experience and knowledge shared in people’s social networks. When service users felt that they had not been listened to or not taken seriously, this did not deter them from seeking help, but it might change which service they chose:

When you came in the reception and you start speaking with foreign accent, these old ladies are a bit like this to you and they’re, OK, OK. And they talk to you like you are an idiot, if you know what I mean.

P3, East European

I think the difference with the 111 service is you’re talking to somebody on the end of a phone. And sometimes, they’re so harassed that they don’t really . . . I won’t say they don’t listen properly, but they never seem to come over quite right. Whereas, if you go to the walk-in centre . . .

P23, Older

One of the strongest drivers of service choice was the perception of the time it would take to be seen (waiting time). Routine primary care was seen as the least accessible form of care compared with urgent care and the ED. What was really prominent from the accounts was that many service users did not simply choose a service that they knew; rather, they considered several services and chose the one likely to offer the shortest waiting time (often based on previous experience). Service users who had experienced lengthy waiting times in the ED were more likely to use urgent care in the future. What is interesting here is that these accounts of future use were based on an assessment of waiting time rather than on an assessment of severity. Thus, for some the ED was not seen as an ‘inappropriate’ choice, but it would be rejected as less efficient:

They were really good there, as in minor injury unit, or out of hours. So next time, and the queue was shorter, so next time, maybe rather than going straight up to the A&E, I will consider using the minor injury unit.

P2, East European

I still don’t know that I would go to A&E because I know the waiting times are horrendous so I am not sure if I wouldn’t try somewhere else first like a walk-in centre because maybe they would be able to help him there.

P31, East European

However, for others, particularly younger participants, the ED was regarded as the most convenient choice and appeared to offer a prompt service. Choosing to use the ED was about convenience rather than clinical need, with some service users reporting choosing to attend the ED when it was likely to be less busy. The model of the patient as consumer was apparent in such accounts; indeed, one used the consumer term ‘served us’:

The A&E was very calm, they served us pretty quickly in like half an hour or so.

P46, younger

As for things like A&E, for minor injuries, that’s just, sort of, a gamble really. If you think something is not all that wrong but you still need to go to A&E, having the luxury of picking and choosing the time, like go in the early hours of the morning because that might be a bit emptier, you’ll be seen quicker. But for something serious you don’t really have that luxury, so you could be going in whenever and it could be really busy or you could get lucky and there will be no one. Generally there’s usually some sort of wait just to get through admin work.

P37, younger

Anyway, sounds a bit like the emergency clinic, well it is emergency clinic isn’t it, and they asked him all sorts of questions, fill in all sorts of forms and then said go to the accident and emergency clinic. Well he didn’t because he said ‘I’m not going up there this time of night’, it was sort of 10:00 [pm], so he says ‘I’m going in the morning’.

P29, older

To help them assess the availability of timely care, some participants sought out information about waiting times. They looked up information on the internet [some urgent care services use Twitter (www.twitter.com; Twitter Inc., San Francisco, CA, USA) to inform people of their waiting times] or telephoned the ED to enquire about the waiting time before travelling. When P67 did this, she was advised to attend later when it might have been less busy, which can be seen as reinforcing the use of the ED for something that ‘wasn’t that serious’:

P67:

I remember with the knee, that was I think Friday or Saturday night, so we actually didn’t want to go to A&E because you obviously spend like, sometimes a few hours and it wasn’t that serious, but you never know if you can just do something, you know by just walking if that will get worse, so we like just rang them up and said what is the approximate waiting time and they tell us.

Interviewer:

So you called the A&E ahead?

P67:

Yes. And we just asked them and they say . . . I think we asked them in the afternoon and they say it is busy but you can try later on and then we just asked them again and we said that it’s OK or something like this.

East European

I’ve obviously looked at the minor injuries unit when I hurt my ankle, but chose not to use that because of the delays. But, apart from that, I’m not really aware of anything else that’s, sort of, out there.

P9l, younger

Some decisions were made to optimise service users’ own time; for example, urgent care attendance was sometimes co-ordinated with other activities:

Well, I didn’t feel resentful because it was better to have that service even though you had to queue up . . . But if I was there with my son, I would go and do some shopping and he would keep the place. It’s, like, you had to think creatively but it was doable.

P4, East European

In all three groups, urgent care was viewed as an available and more convenient alternative to visiting the general practice. Urgent care services facilitated access and, unlike GPs, did not require an appointment. P1 disliked the lengthy waiting times at the WIC, but she used it when she was unable to obtain a GP appointment:

It’s more difficult to go to walking in centre because most of times you wait, because most of times you’ve got some procedure where you need to go. You fill in loads of forms and definitely it will take you at least 2, 3 hours. So if that would be something that you don’t have an option to go to your GP [ ] I think the walking-in centre is good if you can’t get your appointment at GP.

P1, East European

Other service users arranged care around working patterns. A small number of service users said that they used NHS 111 to bypass the GP. P13 justified working around the system in this way by suggesting that this was also better for the GP by ‘saving the doctor’s time’. This was a particularly common feature of accounts by East European and younger participants, who were more likely to be negotiating health care in the context of paid employment, studying and family commitments:

When I used them for the first time, walk-in centre. I don’t remember how I found out that I can use it for like, yes, the urgent problems, but without going through the process of making an appointment with the GP, because it’s easier, accessible than the GP.

P3, East European

P13:

I’ve started taking them [children to the UCC] which is so much easier than going to the doctor . . . I could start work at 14:00 like today, and if it happened today I’d get on the phone now . . . It’s fantastic. Because of work I wouldn’t have time to wait for a doctor’s appointment. You don’t have time to phone your doctors because you can’t ever get through . . . I don’t want to sit in discomfort, so for me that is the easiest way to go about it. And they are so helpful . . . If phone the doctors up I have to wait for an appointment, probably 2 weeks, then you have to go and do a sample, then they have to test it and . . . It’s too much. Why would I go and do that when I have this option which is fantastic? It’s brilliant [ ] Like UTIs [urinary tract infections] and stuff you need antibiotics so it’s the longest thing to attempt to phone up the doctors and wait 2 weeks for a doctor’s appointment. I can’t do that because it hurts so bad, so I phone up 111. They are so good . . . I say ‘I phoned you not long ago, and I complained of this and now I’ve got it again, can you please get a prescription sent to my pharmacy so I can have antibiotics because I just can’t work, you know, it’s really hard’. And they are fine about it . . . And he does literally within the hour . . . ‘fine, yes, we’ll get a prescription faxed over’ . . . Which is the best way ever . . .

Interviewer:

So you’re not needing to use primary care. So you’re not going to your GP?

P13:

No, why would I want to waste their time when I can do it this way?

Younger

P47a:

Always . . . 2 hours waiting in the walk-in centre that’s why . . .

Interviewer:

That’s why you don’t go back?

P47a:

Yes we don’t go back . . . If we need to see a doctor we just call 111. Wait 2 hours at home because then we can sort of he can play and get busy around here instead of get bored at the walk-in centre . . . So it’s better to sit here wait for the call and then go to the [UCC] spend half an hour, 40 minutes and that’s it.

East European

Accessibility

Urgent care centres and WICs are typically located where they are accessible and convenient (e.g. in town centres). Participants rarely commented on the ease of access to these (P20 below is one of the few exceptions):

Well until quite recently we did use occasionally the [name] walk-in centre. I mean, we were obviously very against that closing . . . Obviously it was very handy for us because it’s walkable.

P20, older

For many service users, proximity drives their choice of where to go. Help-seeking decisions are primarily driven not by seriousness but by how accessible services are. Younger participants particularly chose services that were closest and offered the shortest wait:

Even if it is something quite severe like a possible broken arm I would call that a minor injury and I might go to, I would go to that drop-in centre if it was out of hours. But I might equally go to A&E if it wasn’t out of hours. I don’t know, it depends on which was the nearest I suppose.

P75, younger

Younger participants also suggested that they felt reassured by living close to an ED:

It’s really positive because you’ve got it right round the corner. So, it’s a bit more reassurance that if I am ill I’m literally 5 minutes away from the hospital and I can get there . . . Air ambulance goes over so you’ve got that big kind of centre near you and it’s kind of a regional, you know, trauma unit. So, you know you’re in safe hands and it’s right round the corner.

P59, younger

Interviewer:

Do you think about the time of the day, access . . . transport . . .

P32:

Definitely, I think about geography and how close I am to certain services, so if the hospital is closer than others [services] or a doctor’s surgery . . .

Interviewer:

It is the convenience isn’t it.

P32:

Yes, the convenience and I think, I personally think with A&E, Monday is quite a busy day because everyone waits the weekend . . . Mondays are really very busy. I work 9 to 5 so I would probably try to do it out of hours if possible or over my lunch break.

Younger

Some recognised that using the ED for more minor medical problems was not the most appropriate choice, but said that the difficulties of travelling justified their decision:

But I knew it wasn’t really the correct place, I wanted a walk-in centre but there isn’t a convenient one for here. I mean, there’s the one in Gosport but trying to get into [name of MIU] is murder, and the other one is [a different MIU]. It’s so far away you could die on the way.

P22, older

NHS 111 was popular with younger participants. Telephone access overcame difficult or inconvenient journeys and offered the additional benefit of avoiding unnecessary and unpleasant waiting:

I guess 111 . . . you ring them up and they kind of assess you on the phone. So, it is almost like you do not have to go all the way to them in hospital or anywhere like that you can just ring them up and then they could tell you on the phone what to do. And I think that is quite good because sometimes you don’t really need to go all the way in. Also for me when I went to A&E myself, maybe like talking on the phone beforehand would have been a better option because when you are in A&E you are around so many people who have different problems and a lot of it is people on drugs, or drunk or they have injured themselves doing that and it is just a bit, like, it is a bit overwhelming for the A&E, especially if you have got something fairly minor.

P76, younger

However, others – notably this East European interviewee – preferred a face-to-face rather than a lengthy telephone assessment:

P3:

I know when you are not too bad, it doesn’t matter that you wait 2, 3 hours. But if you are really in a critical condition and you still have to go through this telephone interview, very detailed one, you know, someone can die at this, in the meantime [ ] It was fairly easy to access walk-in centre, for example. You just need to walk there if you are able to walk, yes. But I found it a bit more difficult to access GP out of hours.

Interviewer:

OK, what was difficult about that?

P3:

The telephone interview they take you through.

East European