Men and women discussed their diagnosis and treatment with GPs or specialists (rheumatologists), though a few had talked about gout with other health professionals like nurses, dieticians and chiropodists. Interactions with health professionals were often positive, many people saying that their GP or specialists were supportive, helpful and reassuring.
Jeff’s GP gives him all the support he needs. He feels he can ask questions and talk through options.
Jeff’s GP gives him all the support he needs. He feels he can ask questions and talk through options.
Age at interview: 74
Sex: Male
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If I have got a problem with the gout, I ring up and make an appointment with the GP and he's, he's right onto it and, he knows and he gives me all the support I feel require, you know, and I can go there and talk with him and say, "Well, this is happening and I've taken this pill," be it the new one. "It doesn't seem to be working." "Okay, well let's look at the strength." These are 500 milligram I think. This is just an example. If I want - if I was found the tablets weren't taking away the gout or the pain of the gout, I can go to him and say, "I've had this effect. It's not clearing it away as quickly as I would hope. What about changing the strength of the tablet, be it up or be it down?" you know. And he's, he's quite prepared to listen to you and, and take the appropriate action.
People often acknowledged how difficult it must be for GPs to advise and treat patients with a wide range of issues, but sometimes felt that their doctor’s knowledge of gout could be better. Some felt that GPs should refer people to specialists if their own knowledge of gout was limited. Others wished that their GP had referred them to specialists earlier rather than trying to find a solution themselves. Simon felt that his treatment was ‘a bit trial and error’ at times. Several people were dissatisfied with interactions they’d had with doctors in Accident and Emergency (A&E). Arthur felt that his first (incorrect) diagnosis was ‘just really a shot in the dark’. Jean’s diagnosis was complicated because her GPs were unsure if it was possible to get gout with artificial toe joints. Some people felt that seeing a different GP each time caused problems because they gave different advice.
Simon’s appointments were with different GPs each time. He felt that they had a poor understanding of gout.
Simon’s appointments were with different GPs each time. He felt that they had a poor understanding of gout.
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Unfortunately, I’ve struggled to see the same GP each time, which I think is one of the issues - that I’ve always been able to get appointments, but not necessarily with the same people, and so you often start again. I actually don’t feel they have a great un – I think they understand what gout is, but I don’t think they have the understanding from a patient’s perspective. To me it’s like, “Well, you’ve got gout. I’ll give you this drug. Bye-bye. Please don’t come back.” That’s the feeling I get. And when I, I think I’m a disappointment when I come back and say, “Well, it’s not really better.” I think that really is – I think that’s my feelings about it.
How many GPs, roughly, do you think you’ve seen in relation to your gout?
Five or six.
So at the point when you were in your third sort of episode, when it was going on for quite some time, you were seeing different….
Yeah. Each time I went, I saw somebody different who seemed to take a – it was like, “That drug’s not worked; I’ll give you one that will work.” That was the message I got every time.
Some people felt that their doctor understood how painful gout could be. Others thought that it was impossible to understand the pain unless you had gout yourself. People sometimes felt that doctors or practice staff were unaware of how urgent it was for them to have an appointment if they needed painkillers or anti-inflammatories during an attack. Paula thinks her GP did not realise how bad her symptoms were because she could never get an appointment when the pain and inflammation were at their worst. Others, though, found they could get appointments quickly and easily.
When he needs time off work, Runibunar worries that his GP will not believe how intense and limiting his pain is.
When he needs time off work, Runibunar worries that his GP will not believe how intense and limiting his pain is.
Age at interview: 38
Sex: Male
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I find a lot of support with my rheumatologist but sometimes, you know, I cannot - I cannot take away from me that sometimes if I had an attack and go to the GP and ask for an off sick note, sometimes - which is I really don’t want because I really treasure my job as well - sometimes you’re a bit worried that they're just thinking that you're not really in pain, you know. Because there's people, I know that they know, but the thing is I'm not - I'm not…it's just like I'm quite worried as well that getting some, those kind of things that they consider me not fit to work, I really have to explain it to them always, every time I go to them, every time I went to them, I really need to explain them that, “I can't really handle to go to work so I need an off”. I don't know what they will think of me but the thing is, it’s the real thing, yeah, because I'm not only working - I'm not working at a table, in a - in a job that involves you only going to sit, but I need to work which I really have to do physical things inside a warehouse, so…it's quite - affecting me as well. Yeah.
So you worry that your GP doesn't…
Won't believe me.
…doesn't believe you?
Yeah, yeah. I always think of that, that my GP won't believe me, that I was really in pain, that I was only making an alibi or something like that.
Several people thought that managing gout effectively was a ‘low priority’ for GPs or that they were ‘not interested’ because it is not ‘life-threatening’ and not a ‘sexy disease’. John thinks that doctors are now more aware of gout and take a greater interest in it. One man thought that his GP needed more training on gout. Eddie’s doctor told him that very little research had been done on gout. Some people felt their doctors were only thinking about relieving the pain of attacks and not preventing them.
Tony thinks that some GPs still assume gout is always self-inflicted and they put too much emphasis on lifestyle as a cause.
Tony thinks that some GPs still assume gout is always self-inflicted and they put too much emphasis on lifestyle as a cause.
Age at interview: 65
Sex: Male
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I could easily see why people who aren't aware of the causes of it actually making that sort of comment, that sort of diagnosis. That I think ought to - that ought to change. Yeah. Because there's - there's an assumption as well always when you’ve sort of got - when you’ve had a bout of gout that it's - that it's down to drinking too much. That is the immediate reaction. And then you get the questioning of the, you know, “Well, how much do you drink and do you know what the guidelines are?” and all the rest of it. And that I think, I think that should change really. But I suppose what I'm implying is that people - that the GPs are…sort of unsympathetic, and maybe regard it as being a self-inflicted wound.
Some people felt that their doctors did not allow enough time to talk through the diagnosis and treatment options. A few felt that their doctors did not have time to discuss things with them in detail or that they were ‘fobbed off’. Others were pleased that they could make decisions with their doctor, and that their doctor was supportive of their choices. Alastair appreciated his doctor treating him ‘as an intelligent human being’. Several people were happy with the information given by their doctors, while others would have liked more. A few were given conflicting information about diet or medication. (For more see ‘
Finding information on gout’).
Vic is mindful of time when he sees his doctors, though he knows they would make more time to talk if he needed it.
Vic is mindful of time when he sees his doctors, though he knows they would make more time to talk if he needed it.
Age at interview: 75
Sex: Male
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Is there anything that you can think of that would improve the experience of living with gout, either for you or for other people, in the future?
Knowing that the solution to it is not as dangerous in the long term, as I thought it was, much earlier on. So more information I think about what you can take and how long you can take it without seriously having side effects. I would’ve taken it much earlier.
Is that something that you’ve ever had explained to you?
No. No, I – given that our doctors now are on a ten minute cycle, and you’ll get one longer than that if you really want to talk to him, he’ll talk for an hour, they all will. But you are conscious that outside the room there are five other people that should be in this room, and you should be long gone. So it does inhibit you in yourself, but they will talk if you want to. Once you’ve got a solution, what’s the point of going back? It’ll be something else you’ve got next time.
Kate did not think she was given enough information about gout.
Kate did not think she was given enough information about gout.
Age at interview: 65
Sex: Female
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They don’t even say, “Well that’s you, you’re going to get it for the rest of your life. It’ll come back periodically.” No, they don’t. It’s just, “You’ve got gout, here’s a prescription.” And that’s it. No. You’re not informed. Not, not even a leaflet.
The way that you’re treated it’s just, “Here’s your tablet get on with it”. They’ll name it, “You have gout”. And that’s it. “Here, take a tablet”. You know, but what causes gout, you know, nothing like, “This is the reason that you’ve got it or …” I’ve no idea. I don’t know if they know anything, you know.
Even though gout can have a major impact on everyday life, Eddie and others felt that there was less help with it from health professionals than for other conditions like heart problems or strokes. Kate felt that she was ‘left to get on with it’. Like others, Harry felt that sometimes the ‘aftercare may be a little sketchy’ once gout is diagnosed and treatment options are agreed. Some felt that there was no follow up to ask how they were getting on, and to find out if they were taking any prescribed medication. (For more see ‘
Monitoring gout’). Jacqui thinks that health professionals should consider the implications that pain has on people’s everyday lives.
Harry thinks better follow-up care is needed once people have been diagnosed and prescribed treatment.
Harry thinks better follow-up care is needed once people have been diagnosed and prescribed treatment.
Age at interview: 78
Sex: Male
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I can't complain at all, from the support that I've had, both from the GP who initially sent me to the specialist and from the specialist himself, my treatment has been superb - no complaints at all. They’ve all been most helpful while in the process of keeping it at bay, I'm reluctant to say curing the problem, I don’t think the problem is cured to be honest, I think it's under control, but once it's under control, then fine. I think that sometimes the aftercare may be a little sketchy. If for instance, even if it's only say once a year, they were to say, “Well we'll give you five minutes, how have you been? Have you had your blood tested? Yes, you're doing all right, come and see me again in a year's time”. Just that sort of comfort factor that you haven't gone right through the net. And if something were to flare up again that they're there for you if needed.
Some people felt they needed to be quite assertive to get what they wanted from their doctors. Others felt annoyed or upset by interactions they had. Michael’s GP was dismissive of the kit he had bought to test his uric acid levels. One man felt angry that his GP did a screening test for prostate cancer (PSA test) without asking him when he took a blood sample to check his uric acid levels. When Carole started allopurinol, she did not see her usual doctor. The doctor she saw would not prescribe any anti-inflammatories for her because he was concerned about her kidney function. Carole knew that starting allopurinol could trigger an attack, and she ended up with gout in several joints at the same time before she was eventually prescribed medication to treat the attacks. Shirley was disappointed that her doctors would not refer her to a pain management clinic when she asked. One said it was too expensive and another told her she didn’t take enough tablets to need it.
Hazel said her doctors are unsympathetic about the difficulty she has swallowing pills, and the impact this has on treating gout.
Hazel said her doctors are unsympathetic about the difficulty she has swallowing pills, and the impact this has on treating gout.
Age at interview: 32
Sex: Female
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I have the pill swallowing problem. I haven't found doctors that have been really sympathetic. They say, "Well then, just melt the pill in water," which is what I'm doing now because they’re saying, for example, for statins - my cholesterol is not good, related to the diabetes. And they - and I tell the doctor, "Look, see my sugar is getting better because I'm taking the, the sachet, the powdered stuff”. I'm not taking the pill obviously because I really - I gag when I – I’ve gagged with colchicine, and colchicine is the size of an aspirin. I have to melt my colchicine. So what about those pills that are this size, obviously I cannot. So they say, "Oh, then melt it."
But the thing is, you know, it's - okay, I'm in a restaurant, I have to take the pill. "Err waiter, can I get some warm water and an extra glass and a teaspoon, please?" in front of everyone “because I need to melt my pill”. So that's what - and if they say, "Well, it's so expensive in NHS," well I think the thing is I say, "Well, my taxes go there, and actually I've computed I'm still paying for that properly with my taxes." But then obviously that argument doesn’t win. So the thing is just for me it's, it's just good to - for some doctors to at least recognise that actually this person is taking different sorts of, of medication, you know. It's part, I mean because then it's either my cholesterol still is very bad, it is still very bad because I still don't take statins, or, or they just give me something that I can actually take and then get on with my life. And they haven't done that. And they don't have an answer to me when I say, "Well, I really couldn't swallow the pill. I need something," and then they say, "Well, melt it." That's their best answer. So for gout it's the same. It's, "Melt the pill."
Most people who had seen specialists (rheumatologists) were pleased with the care they were given. Some had been referred to specialists for other conditions but not for gout. Hazel would like to be referred to a specialist to get her gout under control but her GP has never suggested it. One man was told by his consultant to phone if he had any more problems, but he did not get a good response when he did this.
It makes a big difference to Gerald that his specialist is supportive and he can contact him when he needs to.
It makes a big difference to Gerald that his specialist is supportive and he can contact him when he needs to.
Age at interview: 67
Sex: Male
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The first doctor, he was a rheumatologist, top rheumatologist man. He was very, like I said, brilliant, absolutely tremendous. And then he said, “I can’t do any more,” and then he passed me over to the doctor I’m under now, and he’s a - he specialises in gout. And I – he’s that good he – I haven’t got an appointment, I mean, I’ve got a – if I haven’t got an appointment and I’ve got it, I can pick the phone up because his secretary now, I know her now, I know her by name, pick the phone up, I phone his secretary, “Hang on.” She’ll have a word with him and he’ll fit me in tomorrow or, “I haven’t got an appointment,” so, “Just come and tell them.” And he’s smashing, really, really – I said to him, “If I paid to go private, £1m a year, I wouldn’t get as good a service as that,” you know, that’s how, how good.
And does that make a difference?
It makes a hell of a difference, yeah, hell of a difference to... Because, some of the doctors – I mean, they’re all doing a job, I’m not knocking them at all, but if I’ve got an appointment to see somebody in three months’ time, then the three months is three month. But I can pick the phone up now, I could phone his secretary and say, “I’m having a bad, I’m really, really…”, and he’d see me at his next clinic which is probably tomorrow. Tomorrow or the – he’s even given me – I’ve got a number, a card with, his card and number. I can phone the day clinic up and just give them my name and they’ll have me in there and drain me off or – yeah, it makes a hell of a difference to know there’s somebody there who, is thinking, I’m not saying the other doctors aren’t, but he is, thinking about you and he’ll be there at a drop of a hat. Yeah, yeah.
Some people talked about gout with other health professionals. Carole saw a podiatrist (for a different issue) who insisted that it was only possible to get gout in feet. She felt cross because she knew this was incorrect but the podiatrist would not accept that a patient might know more than a health professional. Janette has shared information about gout with her chiropodist so that she is aware of the condition if she comes across other people with symptoms in their feet. Jean’s chiropodist was the first person to suggest that she might have gout and told her to go to her GP. Sam found it difficult to discuss her symptoms with a pharmacist when she was abroad because of the language barrier. Kate had an x-ray and felt that the technician was not very gentle with her hand considering she had an attack of gout.
Last reviewed December 2016
Last updated December 2016
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