Table 2 “Onset and the problem of recognition” quotations and themes

Recognition of infection

“I was annoyed, I was annoyed more than anything that I told so many people that I didn’t think it was right and I trusted that they knew better than me because I’m not a doctor or a surgeon” Hazel (1)

“Every time the answer was ‘it can take up to two years to get better’…so all this wonderful Nirvana I were expecting never came about” Hazel (1)

“Well just want to get right, get right, but um, it was gradually getting worse and worse and worse and at a different stage I thought ‘I’m not gonna get out of here’ I thought ‘I’ve come to my end’ cos that’s how I felt” Delia (2)

He said, “‘I’m not giving antibiotics. We give too much of that out.’ So anyway it got worse…and then the knee became very painful. I went back over the surgery and, I asked to see a different doctor, who took one look at it and said, ‘It’s very badly infected.’” Jimmy (1)

The professionals in there appeared to not take the infection seriously enough, and the GPs also – which are normally your first point of call, didn’t take it seriously. Jimmy (1)

Infection onset

“I can’t believe it just because I had no, during the day no inclination that anything was wrong with my knee at all… Really, really strange but I mean I don’t know if that’s how infections happen I don’t know, or if you have a build up to an illness, I never had a cold, I wasn’t ill.” Delia (2)

“…it was very painful. In fact, it was so painful, I couldn’t even walk for many months and it was decided I got an electric scooter.” Harry (1)

“I didn’t really know what was happening, because I just thought it was the poison coming out and I’d be better, you see, so I was wrapping it up and wrapping it up, and in the end I thought, ‘Well, you know, it’s not stopping. I better go and speak to the doctor…’” Derek (1)

“I was in horrendous pain and my knee was literally twice the size of my other one. [hmm] And I knew that couldn’t be right. And no amount of icepacks was making any difference. [no] And the painkillers. I was on about five different painkillers and I mean I’ve got a high pain threshold but I, I just, I just couldn’t get the pain, you know, I was climbing the walls, really.” Louisa (1)

I got out the bed one morning…went to walk to the bathroom and my knee just went, just let me down. Brian (2)

Preparing for diagnosis

“Well, I’ve always been very active and worked all my life, you can say, and I’m - I get up and go and I like to do things. I never thought I’d be wrong. I thought, ‘I’ll do the physio and I’ll do ...’ you know. It didn’t’ occur to me that it would go wrong.” Pam (1)

“They did (mention the possibility of infection). Yes, they did say that, but, they sort of, did it so gently and so lightly, ‘There’s always that risk, but, you know, things will be expected to run normally. We’re not expecting any problems,’ so this came as a bit of a shock to me, actually.” Margaret (2)

“Well, yeah, it was. I mean, I was really annoyed with [surgeon], because, when I went up to theatre to have it manipulated I was on the trolley, coming out of the lift into the theatre area, and he came to me and said, ‘If you’d put more effort in with the physios, there’d be no need for this.’” Peter (2)

I just thought, ‘This is nearly two years out of my life and at my age [yeah] it, it’s not on.’ After everything I’d been through as well previously with, you know, different operations [hmm]. I was fuming. I thought, ‘If I see the guy I shall hit him.’ Louisa (1)

“Well, you see, it seems like they’re in denial because they have this knowledge, they know how serious the infections are … some terrible stories.… But it seems like they let it get to such a bad state first of all before they do any of that. Whereas after, erm, joint surgery, if that’s how serious an infection can be, it ought to be acted on earlier on, really.” Jimmy (1)

“I paid privately to have a private consultation to see him … I needed to have some sort of answers fairly soon for my own peace of mind and, er, he arranged for aspiration and it came back fairly quickly, ‘You’ve got a, an infection’. So at least then to some extent I was quite happy because I knew what the problem was.”