Four patients took part in the focus group. Ten individual interviews were conducted (four in the presence of a spouse who was free to contribute). Details of the participants are summarised in Table 1. Strong opioid medication had been used for a median of 15–28 months (range = 8–108 months) and was initiated by the GP in 10 of the 14 cases. Four major themes emerged from the data.
Impact of pain
Chronic pain had made a profound impact on the lives of all the patients in the study and their partners and families. All participants consistently reported social isolation, limitations in activities of daily living, loss of a previous lifestyle, and perceived stigma. The pain made them miserable and unsociable and they were constantly frustrated by the things that they could not do and that others had to do for them:
‘It restricts my life to a great extent, socially I don't go out. Obviously walking is out of the question and I don't drink, well I never have done, but if I wasn't in pain I would drink. But generally taking part in activities, normal family life, I find that everyone else can go off and I'm left to mind the house, dogs, whatever.’ (Brian, focus group)
‘It's [the pain] made it bloody miserable, unsociable. That was the worst when I couldn't get out and walk or stand up, I couldn't do anything in the garden, or any damn thing, so that was one thing I'd lost.’ (Douglas, interview)
‘I live a different life really now you know, I just manage to get out to the kitchen and wash the plate and that's about all I can do you know now.’ (Alice, interview)
‘I want to decorate, because this place needs decorating, but if I start, as the wife just pointed out this morning, I'll end up in pain. I'll probably, no I will do, but at least I'll get a start and then as she said again, she will be the one that suffers, not me, it's her that will worry.’ (Ian, interview)
As well as feeling different participants thought they were often viewed differently because of their problem and that there was a stigma attached to that, or they were not valued as they would have been before:
‘But why do people assume that if you can't move or you're in a wheelchair or something, they think there's something wrong with your brain. There's nothing wrong with my brain. I mean I'm quite the ticket. [Laughs] We're here laughing, but people treat me as though I'm something out of Mars I think, they don't think I've got any brains but I have, it's not my head [laughs] … it's the bottom part of me that don't work, it's not my head.’ (Frances, interview)
The effect of the condition on their life was often an influence when it came to considering medication. This led to the consideration of taking stronger medication for the pain.
Attitudes to strong opioid medication
Three aspects of attitudes to strong opioid medication emerged from the data. The first was participants' initial reaction when offered the medication. When first offered strong opioid drugs the patients had mixed emotions. Some thought that it was a strategy of last resort and that they must be at the end of the line with their own illness:
‘So that's when the doctor said to me, what about morphine and I thought it sounded so end of the road – morphine, and he said, “no, don't be afraid of it a lot of people think this is the final thing to be on”, but he said it wasn't.’ (Laura, focus group)
‘It's a frightening word, isn't it? When you see it in the media, when you see it on the television, you think if you're taking regular morphine you must be in a pretty bad way, you know.’ (Katherine, focus group)
For others this was even more pronounced and they either thought that they must have another illness that the doctor had not mentioned, or that they had reached the final stages of their own condition and that morphine and its counterparts were only prescribed for dying people:
‘The first thing I thought about was, you only get given morphine if you're dying, umm, I used to be a carer like to cancer patients and I thought I haven't got cancer, so I was a little wary.’ (Belinda, interview)
‘When I was first offered it I, when it was first mentioned, I thought well I made the comments, but I thought they [opioid drugs] were for people that are terminally ill. I said, ‘now you're not telling me that this is terminally ill or have I got something else I don't know about that you've not told me.’ (Charles, interview)
One of the other common concern participants had was that they might become addicted to the drug. This was often influenced by what they had heard and seen in the media:
‘I don't want to become addicted, if I'm going to become addicted then as far as I'm concerned I'm a druggie, so I might as well not be here anyway, so I don't want to become addicted. You see what it does to people on the television, you know drugs, being addicted with cocaine and all that other stuff. I don't want to get into it like that and I assume you can from medical drugs, well you can because you see the programmes on the telly. You can get addicted by that, I don't want to get to that state.’ (Charles, interview)
‘I was afraid of becoming addicted … I thought if I take morphine and I become addicted to it, I'm going to be taking more and more and more and I don't want that to happen, because I fear once you become addicted to something you can't cope with normal life, you're not being fair to your family or anyone else if you do that. But fortunately so far I'm not that way … I try to take as few tablets as I possibly can.’ (Grace, interview)
The second aspect was the beneficial effect of the medication. All participants had reached a point where they were willing to try anything that might help. They also found that once they started the treatment the positive aspects often countered the negative first emotions as they experienced relief from pain and the newfound ability to resume a more ‘normal’ existence:
‘No just as long as I got rid of the pain, that was all I was interested in. Because I was getting a lot of pain then, a real lot of pain, well I do now but I'm lucky I've been alright so far.’ (Ian, interview)
‘Oh I was all for it, I mean anything to stop this awful, these terrible spasms I was getting in my legs. It was almost as though somebody had taken all the muscles and pulled, oh it was horrible, and I mean I was delighted to get anything to relieve, you know even a little bit. I would be very very upset if these were stopped you know, I dread to think. I just don't think I could survive without them, they really do help. (Alice, interview)
Some expressed their appreciation for opioids even more strongly and did not see any problems with it once they started taking it:
‘To be quite truthful it's the best thing I've ever taken and I'm glad really that I was allowed to take it because I know normally its only given to people that umm, are umm, seriously ill and I wouldn't put myself down as seriously ill. I just put myself down in chronic pain I suppose.’ (Charles, interview)
‘I didn't really have any views because I was suffering from pain so I was quite glad to have any tablets that helped to reduce the pain.’ (Harry, interview)
‘No, as far as I am concerned it's all good points because it's helping with my pain, so you know I can't see any bad points in it, because it does help with the pain.’ (Harry, interview)
While others still had reservations, but appreciated the drugs for what they were able to do:
‘It's a bad thing (morphine), but I think it gives you back your independence.’ (Belinda, interview)
The third aspect was dealing with side effects and developing a balance. Constipation was an infrequently mentioned side effect and only five of the 14 participants were taking regular laxatives. The more challenging side effects appeared to be sedation, nausea, and impaired mental functioning. Participants described a tradeoff between getting ‘good enough’ pain control and an acceptable level of medication-related side effects:
‘It's, it's got a good and bad side, morphine. Umm, the advantage is, I only take it if its severely, severe pain where I cry. When I take it, it works really, really well but it makes you feel rather sick, umm, rather spaced out and thinking wise, umm, it outcomes more on the other, do I want to be sick or do I want to cry with pain? So I'd rather be sick but it is a very, very good painkiller.’ (Belinda, interview)
‘The side effects of it, and it did have side effects, for oh, a good 2, 3 weeks, I sweated, I was hot I was cold, I flushed, I couldn't rest, you never did see hot flushes like I had with those tablets, and I said to him [the GP] I've got to persevere and I did but they did have side effects. I'd read it in the book, in the thing, that once you take them you don't come off it unless you see your doctor first and then he will take you off them. But even now I get sweats now and again, I don't know if it's the tablets or what it is, but I get sweats.’ (Frances, interview)
The relatives of participants also noted the benefit of improved pain control:
‘Well since you've got the morphine down a bit and you can get about a bit more, well you do get about a bit more, you're all, I mean OK it still hurts, but you do make the effort.’ (Wife of Julian, interview)
However, the participants also were keen to reduce medication when at all possible to decrease side effects and to show they were not addicted to it:
‘I've been able to reduce my morphine which has cleared my head, because I was so drugged up I was very near to committing suicide.’ (Julian, interview)
‘I don't want to do that [take more morphine]. I want to stay on as little as I possibly can because there might come a time when I need more and I don't want to be on high doses. I've always tried to keep it at a minimum amount of tablets each day. But if it gets beyond what I can cope with then yes, I will give in and I'll take extra tablets.’ (Grace, interview)
At times though they were reconciled to needing to take the dose that helped and not to worry too much about the side effects:
‘Take the stronger pain killer to get rid of the pain, and don't worry about the side effects and it hasn't been too bad, but I do find if I don't take them then it's a wasted day because you just sit in agony.’ (Katherine, focus group)
Coping strategies
All participants described coping strategies that they developed themselves that they learned from outside influences, such as pain clinic courses and support from the GP. One of the most commonly used techniques was of distraction and trying to occupy themselves to forget the pain:
‘Yes, being involved, at least even in your worst state there's something you can get out of reading and learning about something else.’ (Laura, focus group)
‘I'll do what I can when I can and that's how I'm going to live. And I've done that since. Once I was able to accept that then that was it, I was a lot better afterwards.’ (Grace, interview)
Of the seven patients who had attended a specialist pain clinic, all but one were appreciative of the service. Learning that others were in the same situation, that pain itself does not always equate with physical damage, and that pain and depression often co-exist were seen as helpful concepts. Learning relaxation techniques and the concept of ‘pacing’ also helped:
‘Like I say, the best thing to come out of it for me was learning how to relax because I couldn't relax. I was very tense, very, very tense, so if something was to go wrong I was always tense. I used to sit all tense and at least I can relax now, which I couldn't before, so yes, the pain clinic was really, really good.’ (Charles, interview)
‘It did make me realise that pain and depression do work together. (Belinda, interview)
Relationship with the GP
Another major theme that emerged from the data was of the importance of the relationship of the patient with their GP. All participants were in regular contact with their GP. They placed particular importance on ease of access, the doctor having time available, and the ability to listen and explain as well as continuity of care by the same doctor. Being able to have time to explain themselves and to be made comfortable was one of the first preferences:
‘I always find she [my doctor] will make time, it doesn't matter whether she's running late or not, she will make time to sit and listen to what you've got to say.’ (Katherine, focus group)
‘Yes it is important because I feel that I can go up to him and I can speak to him, and I can ask him different things, and I can tell him. You know what is wrong — its embarrassing sometimes but if you don't tell him he's not going to know and I've come to the conclusion that if I want him to know anything I've got to tell him, because otherwise he's not going to know what he's treating me for is he? But I think he's wonderful, I really do.’ (Frances, interview)
This was also reflected by some of the relatives participating in the interviews:
‘We find that we can talk to him and he talks back softly to you and he explains things.’ (Husband of Frances, interview)
Being understood as a person as well as knowing about the condition was considered important:
‘Well, if you have a GP who knows you and knows what you're like as a person, I think they can understand better how you're feeling.’ (Grace, interview)
The GP was also seen as being the professional who was always around even when they had been through other clinics:
‘I mean really, when you have finished with all the specialists and the consultants your GP is your main contact, he is your back up really. Yes it is important.’ (Harry, interview)
Although the participants generally described good relationships with their GPs and a feeling of being understood and cared for, they sometimes felt they could not tell their doctor all that was troubling them. At times they concealed the severity of their pain and did not want to be seen as wasting the doctor's time:
‘I don't break down in front of him, I can't, I can't. As I say I put on a brave face, but he just really doesn't know what I'm going through, he really doesn't. But I can't tell him. There's no way I can say to him how I am, I can't tell him.’ (Frances, interview)
‘I always try to make out that I'm better than I actually am. I think it's a mistake to do it, but I don't want to give in.’ (Grace, interview)
