Distress and pain are interlinked
All participants reflected on how distress and pain are inseparable from each other. Distress was seen as a reaction to, and impact of, persistent pain.
Impact of pain
People with pain described the impact of pain on every aspect of their lives. They reported feeling overwhelmed by the pain, not being able to perform daily chores or pleasurable activities, and becoming dependent on others:
‘Yes, because just some days, I just feel like I can’t even, you know do a load of laundry or cook dinner or, like simple things like that … ’
(Participant [P]16, female [F], aged 35 years)
Persistent pain and its consequences were felt to have an impact on mood:
‘If I have a bad day and all of it hurts, I can get quite upset. It does affect my mood. It irritates me that I can’t cut my toenails properly and when I’m in the shower. Like I say, it’s putting socks on and things like that. It just makes you so fed up.’
(P12, F, aged 45 years)
This impact of pain on patients’ lives was recognised by GPs:
‘They have very restricted lives quite often, they are very limited, they become very deconditioned, they are often having others in the family playing a caring role, even children. And there’s an overlap with fatigue and its quite severe emotional distress and they know we can’t make it better … ’
(GP15, male [M], aged 60 years)
Uncertainty
The Invisibility of pain experienced was felt to add to distress and the fear of not being believed, and thus add to the impact of the pain on relationships, including with healthcare professionals:
‘It’s so frustrating because you think are people just thinking I’m making it up. So, I suppose you know, the big aspect is I don’t do much at all.’
(P10, F, aged 48 years)
‘And that part is the hardest part, not just the fact you’re going through it, but that there’s nobody more willing to listen to you about it.’
(P4, F, aged 39 years)
People with pain also expressed uncertainty about the future, whether the pain would continue, and if recovery would ever be possible:
‘He [GP, during consultation] left me one long thought that as you get older it will get worse, so what I’ve been suffering, the increasing intensity and frequency over the last 20 years, will not stop, it’s going to carry on and [yeah] the frightening thing is I don’t know if I’ll get to the stage where I begin to lose control over what I do.’
(P9, M, aged 71 years)
Pain, distress, and depression
Most participants described a cyclical and interactive relationship between pain and distress:
‘There are people who unfortunately have a debilitating condition in which pain is an issue and if pain isn’t controlled then you go down this downward spiral of pain is not controlled, it makes your mood worse, which again will make your pain worse and then you kind of end up in a black hole where you’ve got two problems, pain, and a mood disorder … so it’s kind of like what came first, the chicken or the egg.’
(GP5, F, aged 36 years)
Some GPs suggested that there was a linear relationship between distress and depression, offering a window of opportunity to intervene:
‘So, you’ve got a pain, you’re fearful about what it is, it’s not going away so you’re worrying about the future and therefore that causes distress. And if that’s not addressed quick enough then it becomes depression because it’s not been resolved.’
(GP10, F, aged 60 years)
Some people with pain recognised that they might have an underlying vulnerability to distress and depression:
‘Well, I think that it’s taken some time to kind of work out, because I’ve always had poor mental health, I’ve had chronic pain since my mid to late twenties. The depression was already around before then, so you have to kind of unpick what is causing the depression or exacerbating the depression.’
(P11, M, aged 55 years)
GPs described how symptoms owing to pain, distress, and depression overlapped, making it challenging for them to differentiate depression and distress:
‘I don’t think there is a clear distinction. I think it’s a spectrum. So, distress merges into depression. There’s not a hard and fast distinction.’
(GP20, M, aged 65 years)
‘Often, it’s more of a blurred situation and there may be elements of both … I think it’s just something as a practitioner you need to be aware of whenever you’re having these consultations so you make sure you can at least explore that as a possibility. I don’t have a way of distinguishing specifically the two.’
(GP2, M, aged 46 years)
These uncertainties are then played out in the primary care consultation.
Being stuck
People with pain described ‘getting stuck’, seeing no way forward:
‘You don’t see any way forward, there’s no solution to the problem so obviously it’s a mental reaction, you know, you are not in control because the pain is overriding everything so they [people with pain] want the pain to go away and they can’t find a way of it going away, so they become distressed and depressed with it as well.’
(P5, M, aged 62 years)
While some GPs conceptualised pain-related distress as a medical disorder needing treatment, others suggested that distress was a normal response to pain. Many GPs, however, expressed ideas of ‘therapeutic nihilism’, with limited options available to them to manage patients with persistent pain and distress:
‘I think the problem [is] there isn’t a lot that we can do really, so apart from making sure that you know people have had all the tests they’ve meant to have had, for things that we can fix, making sure they’ve been referred to the pain clinic, and that we’re trying appropriate medications, thinking about their mental health, there isn’t a lot that we can do. And I think you know in that way we kind of quite similar maybe to the patients, this condition as well, there’s not a lot they can do to make things better. ’
(GP13, M, aged 41 years)
GPs recognised that patients could be dissatisfied with consultations, which in turn led to the GP feeling frustrated:
‘And I guess with if we’re talking about pain or chronic pain … they want their pain to go away and that’s not always possible with chronic pain at the moment, let’s say. And so, we end up kind of having this conversation that doesn’t go anywhere because both parties are probably sort of quite dissatisfied of where, there’s not much progress actually made. And what happens essentially is they probably will go to another GP, for example, try their luck and the same story starts again. So yes, this is quite frustrating, I’d say at times.’
(GP8, M, aged 44 years)
Some people with pain reported limited expectations of what could be done to help them manage their pain and deal with their distress:
‘. .. I think the doctors have sort of given me everything they can. Chronic pain [clinic] has said they’ve done as much as they can. So, I’ve gone through all their programmes and stuff like that, so it’s just a case of they just check up on my meds and things like that. So, there’s nothing much else.’
(P10, F, aged 48 years)
Moving forwards
Being believed
Patients contrasted experiences of being dismissed by GPs with more positive consultations, which included feeling that they were listened to and believed by a GP whom they trusted:
‘I felt brushed off by my GP, he didn’t have any other solutions other than giving me drugs which he knows I don’t like. ’
(P17, F, aged 74 years)
‘Well, my GP is good she does really understand, she knows how, she’s been with me for the last few years, so she understands. But I can understand … you can’t do miracles, I understand that … ’
(P20, F, aged 59 years)
GPs understood patients’ desires to be heard and believed, and illustrated how listening could be used as one of the strategies to manage patients with persistent pain:
‘I think kind of explaining to the patient that you can see the impact it’s having on them and that you know you believe them, that they’ve got this pain and it’s severe and it’s not getting better, I think that helps, at least you care … ’
(GP13, M, aged 41 years)
The importance of being treated empathetically as a person was highlighted, along with discussing and sharing uncertainties:
‘If you speak to people and they’re sympathetic to you, it is a help … you know but I appreciate that not everyone would have that.’
(P5, M, aged 62 years)
GPs described how they needed to work with the patient to unpick these uncertainties and deal with their own to move on:
‘I think obviously when we talk to the patient if they just say that, if they’re fixated just on the pain and the body so that’s a primary symptom, then I find that more a sort of distress with the chronic pain. If they tell me that there’s other symptoms you know they’ve got poor appetite, poor energy, poor concentration, some of the symptoms, that will open the door for doing, you know looking at the PHQ-9 and assessment for depression. Just really how they present … and I’m further questioning what other symptoms they allude to.’
(GP21, M, aged 46 years)
Regaining control
Coming to terms with or accepting pain was seen as important by people with lived experience of pain:
‘... the way that I try and become more positive is just to carry on and get on with whatever it is. I suppose it makes me feel like I still accomplished whatever it was I was going to accomplish.’
(P12, F, aged 45 years)
GPs emphasised the importance of encouraging patients to accept the pain and subsequent distress to move forwards:
‘What most people would recognise as an acute stress reaction to something, because most of us, you know, something happens, yeah, we get upset about it, we get stressed about it or whatever, acutely, and then we kind of stabilise after a while and I wouldn’t say we get used to it but you kind of … I don’t know what term I should use, but you kind of just accept and then you move on, and it doesn’t become so intrusive.’
(GP5, F, aged 36 years)
People with pain described the need to be optimistic to deal with their current situation:
‘You know when you spiral down a little bit then you start thinking of all the negative reasons of everything. If you looked at the positive stuff, then perhaps you wouldn’t be in that frame of mind.’
(P21, M aged 54 years)
GPs highlighted the significance of fostering ‘optimism’ within patients living with persistent pain and distress to open possibilities for people with pain to adapt to their current life situation, rather than focusing on what has been lost:
‘I try to be positive because I want them to be exercising and I want them to be doing what they can to help this rather than accepting this as some form of negative, debilitating problem that they’ve just got to take loads of pain relief.’
(GP2, M, aged 46 years)
People with pain described working on constructing a new identity, which included accepting their pain, and giving a sense of adapting to and restoring a new life:
‘I still have, what do they call it when you have pain, the triggers, you know it [pain course] taught me to avoid the triggers, it taught me to deal with the triggers so when you get a really, really bad phase that you go through on how to deal with all of that psychologically and physically. So, I just have to live with it [pain] and do what I was taught to do, you know, and I thank goodness that I went on that course.’
(P19, F, aged 66 years)
Agreeing solutions
GPs emphasised the importance of having an established relationship with the patient:
‘I would say that’s the first and the most important thing and having continuity of care with the same doctor or the same clinician and not seeing a different person every time. It should be someone who really gets to know the patient and understands their point of view and the patient then, over time, gets to know and trust that doctor. I don’t think you can do it in one consultation.’
(GP19, M, aged 48 years)
People with pain stressed the need to work with their GP to develop and agree a management plan to deal with both pain and distress:
‘It’s only because I spoke to my GP recently and she was just like saying how was I and stuff and I was just talking about stuff and she said, “Right, you really need to be recommended to the mental health team, are you happy with that?” And I was like, “Well yeah, I don’t mind”.’
(P10, F, aged 48 years)
Key to moving forwards was trying to distinguish between distress and depression and plan management accordingly. Some GPs described how identifying a cause for low mood might help them to distinguish between distress and depression:
‘Distress is when I think you know there’s something that’s happened specifically and the distress or the emotional upset is related directly to that thing. Depression is more when it becomes more generalised, you feel you are not winning with every aspect of your life and everything is … and there may not be a specific reason for it and it’s prolonged, you know, it goes on beyond what most people would recognise as an acute stress reaction to something.’
(GP5, F, aged 36 years)
Other GPs described how they based their management decisions on whether there was a previous history of depression:
‘… I don’t know whether they feel helpless and hopeless and that leads to clinical depression, or they have got a pre-existing low mood that makes their pain threshold low.’
(GP6, M, aged 38 years)
Some GPs said they considered severity of symptoms to be central to distinguishing between distress and depression in the context of pain. It was common for these GPs to mention the use of severity scales such as the Patient Health Questionnaire-9 (PHQ-9) to help them make that distinction.25
‘So that kind of usual like screening questions for depression really. And then if they said, oh, like, the answer to those questions was yes, then you can assess more and there are some scoring questionnaires we can use for depression if we want to, like the PHQ-9 … ’
(GP13, M, aged 41 years)
Once this distinction was made, GPs described how they were more certain in offering support and negotiating a management plan:
‘I also use treatment as a way of differentiating whether something is becoming … is more of a longstanding problem or not, so if people are responding to the treatment and becoming more active, less distressed on the second occasion, that’s more of an indication to me that this is something that can be treated. When people come back and it hasn’t made a difference and they’re saying that you know they haven’t managed to change how they think or how they behave, then that’s more of a trigger for me to be thinking oh this is something more of a depression.’
(GP7, M, aged 60 years)
The findings were discussed with the PAG and drawn together in Figure 1, which represents a framework to support the primary care consultation.
Figure 1. Framework to support patients with persistent pain within the primary care consultation
