Background
Methods
The sample
Men (%) | Women (%) | Total (%) | |
---|---|---|---|
(n = 29) | (n = 14) | (n = 43) | |
Age group at interview (years): | |||
30–49 | 4 (14) | 3 (21) | 7 (16) |
50–69 | 16 (56) | 7 (50) | 23 (54) |
70–89 | 9 (31) | 4 (28) | 13 (30) |
Ethnicity/Nationality: | |||
White | 27 (93) | 13 (92) | 40 (92) |
Asian British | 2 (7) | 1 (7) | 3 (7) |
Living arrangements: | |||
Living alone | 2 (7) | 4 (29) | 6 (14) |
Living with one other person | 20 (69) | 6 (43) | 26 (60) |
Living with more than one other person | 7 (24) | 4 (29) | 11 (26) |
Current work status: | |||
Retired | 16 (55) | 9 (64) | 25 (58) |
Full-time work | 6 (21) | 5 (36) | 11 (26) |
Part-time work | 5 (17) | - | 5 (12) |
Student (higher education) | 1 (3) | - | 1 (2) |
Not working for health reasons | 1 (3) | - | 1 (2) |
Time since diagnosis (years): | |||
1–5 | 4 (14) | 6 (43) | 10 (23) |
6–10 | 2 (7) | 4 (29) | 6 (14) |
11–15 | 6 (21) | 3 (21) | 9 (21) |
16 or more | 17 (59) | 1 (7) | 18 (42) |
Age group at diagnosis (years): | |||
< 30 | 1 (3) | 1 (7) | 2 (5) |
30–49 | 19 (66) | 4 (29) | 23 (53) |
50–69 | 9 (31) | 7 (50) | 16 (37) |
70–89 | - | 2 (14) | 2 (5) |
Attacks in past 12 months: | |||
0 | 10 (3) | 4 (29) | 14 (33) |
1–4 | 16 (55) | 6 (43) | 22 (51) |
5–9 | 1 (3) | 1 (7) | 2 (5) |
≥ 10 | 2 (7) | 3 (21) | 5 (12) |
Data collection
Data analysis
Results
“So I know gout’s never going to kill me, right. So I don’t want to be taking – I don’t want to be rattling around full of tablets all the time.” (Andrew)
“… it does take a period of adjustment to actually, you know, ‘I’m going to be doing this for the rest of my life’, rather than, ‘I’ve got something in the background which flares up occasionally.”
“The doctor said if you don’t take any medication it will get worse and it can affect your joints, I mean permanent damage. So I had no choice, I have to take the medication.” (Vinay)
“Don’t realise when you get it, the effect that its having on you, and I had some quite severe attacks in my hands as well as my feet, and that’s left me now with permanent damage, which I didn’t realise was going to happen.[…] The pain goes away but the effects of the attacks of the acid and crystals doesn’t go away, it remains there.” (George)
“If I have a headache I just put up with it [laughs] whereas I’ve got friends who will swallow any manner of things, you know, just to avoid a pain of some sort or another. It’s just the way I am.” (Gail)
“Well I didn’t really want to be on medicine for the rest of my life, which is what they were suggesting. ” (Linda)
“I’ve been allowed to be in charge of my own destiny. To be fair, the doctor has probably mentioned it before last year […] he hadn’t just left me for ten years […] But I suppose because of the way I am, I am so anti taking things that probably it was a case of me coming round to accepting that I didn’t have any other options. But, as I say, it’s always easier to be wiser after the event […] maybe the medication would have been a better option a bit sooner, in my experience”.
“I think I read somewhere that the current thinking on gout is that if you’ve had so many flare-ups – I don’t know what the number is – that the next step is medication.”
“Last year, I was getting too many instances and it was spoiling things, because I have a hobby that I enjoy and if I’d got gout I couldn’t pursue it until the gout had gone. And I actually came round to thinking that I needed to do something more about it than just trying to manage my diet and dealing with episodes when they occurred.” (Gail)
“Started on 100 mg first and it didn’t improve. And I was taking the painkilling tablet at the same time. But when I was taking the 100 mg, your mind thinks […] ‘Why am I taking?’ It gets worse. ‘Why is it getting worse?’ And it gets frustrating and you go to the doctors and he ups it to 200 and it still doesn’t go away and you’re still taking the painkiller. And he ups it again to 300 and it was still…. It just seems like it gets a balance and it’s very difficult to understand why, what’s actually going on.”
“Every time I went on it I had a flare-up of gout, which they told me to expect, but it was so bad that I just wanted to get off it. […] They sort of explained, you know, how the chemicals work, and it’s normal to get a flare-up but it will go. But I suppose I wasn’t patient enough to deal with that.” (Linda)
“When my attacks became more frequent, I went back to the GP to ask for a referral back to the rheumatologist to discuss, you know, ‘Is this the time to start allopurinol?’ And my GP initially refused to refer me, he said we didn’t need to - ‘I’ll just put you straight on allopurinol’. And I remember, sort of having a conversation, ‘Well, actually, you know, I’d like to discuss….’ Because I didn’t like the idea at the time of going on a medication for the rest of my life. […] It is a shift in the way of thinking about the illness that you’ve got. The prospect of ‘I’ve got to take this for the rest of my life’, is, it was very difficult to adjust to. And I said that to my GP, and he matter-of-factly said, ‘Oh, lots of people take tablets for the rest of their life’. [Adam]
“I think when you’ve had a diagnosis, it would be really helpful to sit down quite quickly with a doctor […] to actually talk through what your options are…” (Linda)
“… so I think you need that sort of an approach to try and help the person understand and get it under control. So it’s like a joint effort over a period of time, rather than just a one-off visit after you’ve identified the problem.” (Henry)