Table 3 Illustrative quotations

The postsurgical journey

 Severity of postoperative pain

“The pain is horrendous. It is horrendous, you know, and I was, like I said, on my own. I mean I had friends coming in for the first few days and afterwards but you're sat on your own some days and you—I mean I, I think I've screamed about twice in my life […] but yeah, I mean the pain is—yeah, it's extremely painful” (Clive)

“I remember saying to [surgeon] when I last saw him and I said I’d rather have ten babies than ever have to go through this again, and he said you are not the first one to say that […] it’s so painful, it’s horrendous and it’s constant.” (Grace)

“I knew it was painful but I thought oh well for me I’ve got a strong pain threshold, but this has beat me ain’t it just […] it’s worse than childbirth because childbirth is over in a matter of you know minutes sort of thing whereas this goes on and on and on.” (Josie)

“It’s a most terrible pain that you aren’t prepared for in any way […] [was it sort of hours after the surgery or days, or weeks?] Months, mine went on until, well I suppose it started improving and subsiding a bit after about six months […] we had morphine [in hospital], although morphine didn’t seem to do anything, I was amazed how little effect any pain relief had, but I was able to do things, you know all the things that the physiotherapist said to do, even though it was incredibly painful.” (Deborah)

“I forgot it was as bad as this! [laughing] Then they bring you the crutches and they say right, come on you’ve got to walk a few steps now like, me and the girl [in] the bed across the road and she went, I forgot about this, did you?” (Chloe)

“Once it’s all gone you tend to forget the pain don’t you.” (John)

“I put there, 'Much more painful than I ever anticipated.' So that was the first couple of weeks […] [It sounds like the first bit was quite tough] It was, yes. It was. Because I've actually broken lots of bones over the years … I've had three children, I thought that my pain threshold was quite high […] [Does this top it all?] Well certainly it did, yes […] Because it actually is very hard. If it wasn't for these notes I wouldn't remember.” (Helen)

“I suppose thinking right back to the beginning I think more understanding of how it might be, you know. I think if I'd been given more information about the possible outcomes, how painful it might be.” (Helen)

 Endurance and the hard work of progress

“My knee is absolutely great. Really happy with it. I need the other knee done but it will have to be hanging off before I have it done. I think it needs to be really bad for you to appreciate the pain that you go through to get it better […] I would tell anybody, ‘Please have it done. It improves your life so much more.’ So definitely. As long as you’re willing to put in the work to – to do that." (Caroline)

“Had the pain been a lower level I could have managed it, but I couldn’t manage that level because for the whole time up to, for at least six months, I wasn’t able to sleep. I had to get up several times during the night and come down for ice packs and God knows what and, sort of move about. If I was still at all it just took over, so I had to move and do anything I could to distract myself and alleviate it.” (Deborah)

“The pain when you’re trying to bend it makes you cry but you’ve got to keep doing it and I don’t think [friend] did that you see and now she walks with a stick.” (Chloe)

“Yeah the physios were great but it was painful when I went there, I used to dread it because I knew it was going to hurt because they start saying ‘oh you need to do this and you need to do that’, and I wasn’t always good at doing exercises because it was going to hurt.” (Mandy)

“I got frustrated at times but then, you know, you've got to sit back and think, 'Well, this is part of the process and that's the end of it.'” (Clive)

"Probably reached the plateau. Yeah, the first six months was the hardest, that was for sure. But it’s settled down now, yeah." (Reg)

"I’ve been doing all the exercises that I was supposed to be doing, but I started going out and walking twice a day and it was just a complete turnaround. I think mentally as well. I felt I was really taking back ownership of my knee […] I felt, ‘Okay, the surgeon has done his bit and its sort of like his knee. He’s put the part in. He’s done this bit,’ but I suppose it’s – it’s also sort of like taking back part of my life […] So, I think because I had decided, ‘this is what I’m gonna do,’ that is where I felt like I was taking back ownership a bit more. ‘It’s my knee. I need to sort it.’" (Caroline)

 Low points

"I think if – if you’re gonna put the time in, but I did say, week 3, I felt like a tonne of bricks ‘cause everything just stiffened right up […] That was my real low point, where I thought, ‘Oh god. Is this it?’ but luckily enough that didn't last sort of too long, but that – that was a very low point, I have to say.” (Caroline)

"It wasn't the pain that got worse. It was the stiffness, which then was a sort of pain, but it wasn't the sort of pain of when you’ve just had the operation. As I say, it was only week 3, but to me that was quite a way on, it felt like at that time […] but yeah, it was the actual stiffness and the mobility side, I felt like suddenly I was going backwards [Was that what worried you?] That really worried me. I thought, ‘Why am I – why is this happening? I’m doing my exercises. This shouldn't happen.'" (Caroline)

“I've put here, 'The knee bend seems to be completely stuck at 90 degrees at four weeks. I feel weak, hopeless and depressed, not seeming to make any progress.' So, I think for those next few weeks it was tough […] So, four weeks I was really fed up, five weeks I'd started saying, 'Still little or no progress.' Six weeks a bit of improvement. I think at ten weeks I was telling my physio that I, I couldn't—I thought there was something really wrong with it.” (Helen)

“For the first four or five weeks, I really felt I was making progress. I was full of optimism. I was walking around the garden with very little pain really […] I had plenty of movement in it and I was thrilled to bits. We went out for the day […] We didn't overdo it, but that was the first time it blew up like a balloon and got all hot and red, and I told them about that at [STAR clinic] and I mean they showed me the X-ray and they said, 'The X-rays looks—it's all in perfect position.” (Nora)

“Yes because when you’re doing it at first they give you exercises […] and like they say you’re doing it so far […] but to make it go far enough you’ve got to push it that bit further and that bit further and that bit further all the time and it gets to a point where it stiffens up and you don’t want to do it, and I think you’ve just got to get by that barrier because then it gets easier, easier to do.” (Chloe)

Experience of the STAR care pathway

 Acceptability of the STAR assessment clinic

“I’m not sure, there were occasions where I wasn’t sure where the clinic stopped and the other one started.” (Bernice)

“It just seemed perfectly normal, really, that, you know, you'd have x-rays and they said they were okay, and physio said it was okay and so it was—yeah.” (Helen)

"I was told that I might get extra help with the STAR Clinic but I'm not really sure what extra help I've had through, through the STAR Clinic really […] I mean whether because I was taking part in it… I had the referral to the Pain Clinic or whether I would have the referral to the Pain Clinic anyway, I don't know." (Nora)

“Loads of questions, saw a physiotherapist, they took blood […] I had loads of x-rays and someone wasn’t happy with some of the x-rays, so I had to go back down and have more x-rays. They were looking at it proper like you know […] it was a thorough examination. And very pleasant, nice cuppa tea, being fussed over, yeah I mean I must have done an hour’s interview with the physiotherapist because she recommended the physiotherapy.” (Graham)

“I was really quite impressed with it and I actually found it really useful because I felt as if I’d got somebody to go and ask questions to … it was really nice because I had a bit of an MOT in a way and … I just thought I’ve actually had a bit of a check-up but it was really good to be able to talk to her about you know things about my knee that I was concerned about … I know I was there quite a long time with her and they called me back for another blood test because there was a bit of infection or inflammation which I mean it was still inflamed anyway so that was… but I just felt as if I was well looked after so…” (Mandy)

"I was made really welcome […] So, erm, I had a cup of coffee and taken down, I had a cup of chocolate. Straight in and, you know, no waiting in the waiting room, all this. Really nice, and I tried to answer as many questions as I can and, which I did and there was a lot of questions, you know. Quite a few questions. No, very good and, er, told me they’d see me again and such, or you, I’d be hearing from them you know. Kept all the information in me folder, all the feedback and everything […] I had, yes, blood tests done. I had an X-ray done and they showed me them all afterwards and everything with it because they knew I was a nurse, you know, and they showed me the X-rays." (Elizabeth)

"It seemed to be run very efficiently and everything, so, erm, you know, I was quite happy. I didn't find it overly intrusive time-wise, or anything like that, ‘cause that was one of my worries, when I was going to the hospital first of all I thought I had to go to the hospital several times and they said, ‘No, no, no.’" (Caroline)

 Perceived benefits of the STAR assessment clinic and follow-up calls

“It’s sort of gave me encouragement to sort of well, these other people are looking after me as well and treating me. They are kind and I felt there was a, I needed to get myself right and do what little things they suggested, you know, and then, you know, you, mentally you, I felt more possible.” (Elizabeth)

“[It was] just like talking really, mainly, just talking. Put me mind at rest with things as well […] Because I was in a lot of pain at first, but they did help with talking, when they were talking to me and they could let me ask questions as well, which was good, yes.” (Anne)

“They were spot on. They asked some good questions, you know and they listened which you know – so.” (Andy)

“[the follow-up phone calls that you had, how did you find those?] I mean it was fine; it was someone checking up on me really. You know, from an orthopaedic clinic you don’t really get anything […] I mean they were very good because when I first went they did arrange an x-ray, they did arrange physio and beyond that I didn’t really need anything else. And they’ve rung me up several times to see how I am, I can’t fault it really.” (Rose)

“I would have gone to the hospital you know, thinking there was really something wrong, but he just tried to reassure me and you know and they’ve all put it down to muscle… muscular nerve pain, that’s what I believe, the impression I seemed to get so… […] I say that was the first and only time I’ve ever rang [ESP] apart from him just ringing me and checking me, checking how I was you know which was very nice because I didn’t expect that to happen at all.” (Grace)

“It’s not attached properly [the knee prosthesis] so it’s slightly different from other people who are just experiencing continuous pain for no obvious reason and I feel fortunate in one way that I know what’s the matter because you do need to know what’s the matter don’t you otherwise you think you are going mad in the end […] there was a suggestion of having another replacement, I just couldn’t face it so I’m happy to go… you know I can manage this, it’s painful but I’d prefer to manage this because it is manageable pain.” (Deborah)

“I think we’re finding out about this alignment. Yeah and I thought it was just me you know, not taking to the knee properly and it could’ve been that not doing its job. Yeah, I thought they come over spot on, you know what I mean? It were very good and I’d do it again.” (Andy)

“Probably gave me confidence that it weren’t me because you think like the information you think it’s your fault because you’re not doing something right you know what I mean? Although you’re doing your exercises you have no yard stick to measure anything to so you don’t know so when I went to see him and he said well it’s brilliant, your leg is brilliant, carry on with what you’re doing.” (Chloe)