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Rheumatoid Arthritis

Outpatient clinics for rheumatoid arthritis

Waiting times to see the consultant rheumatologist varied. Most people had been seen within weeks and at least within 3 months. The British Society for Rheumatology and NICE aims for patients to be seen within three weeks of referral to a rheumatologist (see 'Referral to a rheumatologist). After that they had regular appointments at the outpatient clinic, in a few cases weekly or monthly, but mostly every 3, 6, 12 or 18 months. People who had had surgery also had outpatient appointments with their surgeons. Those on anti-TNF drugs and rituximab therapy need to attend the anti-TNF clinic usually every three or four months, and often this can be combined with the other standard appointments to avoid duplication (see also 'Biologic treatments').

Apart from seeing a consultant or other doctor at the clinic people also saw a rheumatology nurse to offer advice and support (see 'Other hospital specialists'). A nurse weighed patients and took blood samples before appointments. Sometimes x-rays were taken at outpatient visits. Those on anti-TNF drugs and rituximab also saw the anti-TNF specialist nurse.

One man complained that his clinic appointments were frequently cancelled, but he had direct access to the clinic and could ring the nurse to get an immediate appointment when he had an urgent problem. Other people also said that if they were 'really bad' they could ring up and go to the clinic for an injection, or they could phone for advice.

 

Complains that routine appointments are often cancelled but he has direct access to the clinic...

Complains that routine appointments are often cancelled but he has direct access to the clinic...

Age at interview: 42
Sex: Male
Age at diagnosis: 17
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In the main, it's pretty good. I mean if I need to  if I need to get into the hospital quickly, I've got pretty much a direct route straight through to the hospital  that will get in sort of quickly. I've got sort of direct contact with like the practice nurse there for the clinic and you know if I need to I can obviously talk to her as well. I've not really got that much of a problem that way.

Certainly  my sort of routine appointments and checkups, times and times sort of slip from one appointment to another because of  commitments at the hospital, I doubt very much if now I'm on these sort of six monthly check ups, if I'm ever seen at the time when I first book myself in for that appointment, they're always cancelled for one reason or another or it gets put back. But  I do have access if I need it and as I say really at this moment in time, I don't really need it, I'm quite, quite good so you know, they are really just a, just a top up call more than anything else, in a way, just to see how things are progressing but  it is a busy department or a busy clinic, the, you know, the rheumatoid clinic, so'

So when you're actually get there, do you have to wait long for your appointment times or'?

Not really, no, things, things are normally pretty good. Things move quite quickly there so the only perhaps gripe that I've got is the fact that nine times out of ten, the appointment, when you make it for the next routine check-up will be cancelled and sometimes it can be cancelled a couple of times before you're seen again, for whatever reason, you never get to know. But that's really my only gripe.

Some people had excellent experiences as outpatients. One woman, for example, said that she had a 'very nice specialist consultant', that the whole team was 'extraordinarily efficient' and very thorough. Another said that doctors and nurses were friendly, helpful and always apologised when the clinic was running late. Someone else said that he was always seen within 10 minutes of his appointment time.

 

She often has to wait, but the clinic doctors and nurses are always friendly and helpful.

She often has to wait, but the clinic doctors and nurses are always friendly and helpful.

Age at interview: 50
Sex: Female
Age at diagnosis: 48
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Sometimes, obviously, patience is a virtue because you can understand, you know, there's lots of people to be seen and so with that understanding you just wait patiently for your  you know, to be seen. But everybody there are really friendly and helpful and, you know, they always apologise for running late or whatever, so, you know, it's, it's something that you, you take in your stride.

So you expect to?

[Laughs] Yes. 

Do you have to wait long?

Oh hours. No, no [laughs] no. Usually, you know,you're registered to say that you were there very quickly and then you tend to wait to see the doctor or  the  the trainee. But once you see, once you're in then, you know, it all happens very quickly. So you've just got to be patient.

Other people, however, complained that consultants always seemed to be in a rush, that clinics ran late, that they had only 15-20 minutes for the consultation, and that the doctors were sometimes 'intimidating'.

A 42 year old woman had experienced different consultants. The first one didn't appear to listen and didn't seem interested in her problems. Then she saw another who gladly answered questions, listened, gave her plenty of information and made her feel much better.

 

Different consultants treated her quite differently in out-patients.

Different consultants treated her quite differently in out-patients.

Age at interview: 42
Sex: Female
Age at diagnosis: 29
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Well, I, I felt happy with the treatment, the medication the, when I saw the consultant and I was put on to the methotrexate obviously that worked very well, so in that sense I was very happy but, the thing that I wasn't happy with was the fact the, I felt the, my appointment time was very rushed. I didn't feel he was that interested in answering my questions. I had you know quite a few concerns at that time that, because that was when the flare up was quite bad. I had quite a few things I, I wanted to ask, and I'd, I felt I got very short answers. 

I didn't feel much interest was shown in what I was asking. I didn't feel I'd really got the information I wanted. And I, I didn't feel I was trying to bombard him with questions. I felt they were, you know, quite reasonable things to be asking and I came away feeling quite upset at that stage and I saw a different member of the consulting team this time and had quite a different experience. She listened to what I was asking, she was quite happy to answer questions, she gave me lots of information I just felt it, it wasn't a rushed appointment. And I just came out feeling so much better for it. And I just think, you know it's amazing the difference in, just the way I was treated you know for the same sort of appointments.

Many people complained that they rarely saw their consultant when they attended the clinic. Each time they saw a different registrar who didn't really know them or their individual problems. People were upset about this because they wanted to discuss their treatment with the consultants rather than with more junior doctors (see 'Choosing treatments and taking part in trials').

Some people preferred to attend the clinic alone because they didn't like to keep friends or family waiting, and because they could concentrate on themselves. Other people preferred to go to the consultation with a friend or family member, someone who could listen carefully and remember things that might be forgotten. Several people found it useful to make a list of things that they wanted to ask the consultant.

 

Attended his partner's appointments and felt it helped that both of them were able to hear the...

Attended his partner's appointments and felt it helped that both of them were able to hear the...

Age at interview: 31
Sex: Male
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We used to come home, you know after a test and that and I mean, there's obviously, there was things I, it was good really because there was things I'd pick up what the doctors would say, and there was things she would pick up and you'd find because you're in there and you can get blinded with science but you can pick up different aspects at different times and it was useful really because from that point of view we could bounce off each other and you know if someone was in a particular day where they just didn't feel like taking it all in, the other person possibly was. So yeah, I would say it was probably a mixture really, I mean the leaflets were good but it, it was more of a spring board to sort of looking more onto the internet as well.

So you feel that your wife valued having you there when she was seeing the doctors and having the consultations?

Yeah, I mean there's, there's a lot to take in to be honest and you always, you'll come out afterwards and you always think, I wish I'd have asked that or I wish I'd have questioned this, which sometimes, I mean you still get that but a lot of the times, we were, you know, I'd butt in and then that would lead her to say something and so yeah it's, it's always, I think it's always, if there's, if there's more than one of you then you know it gives twice as much sort of oomph to really sort of you know question things. So yeah, I think it was useful, useful for me as well. I'm sure it was for her as well.

How much have you felt that you've been included in the consultations and how, how well do you think the doctors have communicated with you?

Very, the current hospital she's seeking treatment have been very good they're very friendly and I mean, they don't, they don't even mind with me, I sit in or anything like that. With the GPs, it wasn't probably so much because of them or.., because it was earlier on it was one of these, I mean most of the time you go to a GP, you go by yourself , when it did get more serious I think, I don't know whether it's probably something hospitals are more sort of inclined to let, let you do and also moral support. So from that point view there was no problems, no problems and like I said I mean, it, it was useful.

Waiting rooms at the clinics varied greatly. One woman liked her outpatient department waiting room, which was 'nicely set out' with chairs, a TV, a play area for the children and an electronic screen that indicated how late the different clinics were running.

Other interviewees complained bitterly about their out-patient departments. For example, one woman often had to wait three hours, found the staff 'off-hand' and disrespectful, shouting at her, using her first name. She said staff should introduce themselves and not assume that she could see their name badges. She also complained that she was not told if the clinic was running late. Other people too, complained that clinics were often overcrowded and that that they weren't informed about delays.

 

She had to wait hours in outpatients and was not told that the clinic was running late.

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She had to wait hours in outpatients and was not told that the clinic was running late.

Age at interview: 49
Sex: Female
Age at diagnosis: 36
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And  the main problem with the access is that, you, you can wait for hours and hours in the outpatients department waiting to be seen. And for people with arthritis that's not a good thing. So and you daren't get up and walk about and go and have a cup of tea because they might call your name when you're out. You know. 

So I actually said this and they said, 'Well you could go and ask at the desk.' I said, 'Yes I could. And there were about 50 people waiting and if each person went individually to ask at the desk the clinic would be chaos, wouldn't it?' 'Oh yes', they said. 'So why don't you, like you're supposed to, under the Patients' Charter if the, if the clinic's running more than 1/2 hour late, why don't you tell people? 'Cos that's what you're actually supposed to do, anyway.' So the next time I went in, 'cos the nurses all know me,precisely 1/2 hour after my appointment was due a nurse stood up and said, 'I'm terribly sorry everybody, everything's running 1/2 hour late today.' 

Two hours late or whatever it was, you know. 'Sorry about that but that's the way it is, you know. But you can go and have a cup of tea if you want.' So they'd obviously taken notice of what I'd said.

Some people suggested that it was important to find the 'right' consultant, whom you trust and can relate to as it is likely to be a long-term partnership. Two women, for example, felt that their consultant lacked communication skills. They asked their GP to transfer them to a more approachable consultant. For one woman it took a while to change consultant; another said that it was quite straightforward and she felt it was a good decision.

 

She asked her GP to transfer her to another consultant.

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She asked her GP to transfer her to another consultant.

Age at interview: 37
Sex: Female
Age at diagnosis: 19
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But what I did I transferred to another hospital and this consultant was given to me, the one my doctor referred me to, my GP referred me to, he was also retiring at the time, so I was just passed on to any other consultant then. And this man, he did a lot of research into osteoporosis and I think that's where his strengths lay 'cos everybody that I've spoken to that's seen him, says he has no sort of communication skills with his patients at all. 

You would feel like a nuisance when you went in, if there was anything sort of at the back of your mind, you'd be frightened to ask him and I've never felt like that with a doctor before, and what I did, there was an education group run by this hospital, and it was a 6 week course, and during this 6 week course, this lady consultant came in to do a talk, and I was so impressed by her and her attitude and she was just so lovely that I asked the occupational therapist that ran the course, I asked off the record if it would be a problem for me to transfer, and she had a word with her and everything was fine, so my GP just did a letter to ask to transfer and that was what I did.

But I find now my treatment is much better, because she is so thorough and she's very understanding and she's so approachable and you can ask her anything and she's always ready with the answers, she doesn't have to consult books and things like that. So I do, I do have every confidence in her.

 

Moving from one consultant to another was quite straightforward.

Moving from one consultant to another was quite straightforward.

Age at interview: 37
Sex: Female
Age at diagnosis: 27
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I had a particular rheumatologist for ten years and have actually transferred because I've found that I didn't feel that I was getting the care that I thought, you know I thought I you know I should be having. I can't say that I didn't, I, I felt that I wasn't treated as fairly as I could have been, I, I you know, I know people who have gone private and have been treated so differently and I just think that there is a big, you know, there is a big thing there.  

So I did actually transfer consultants and I, I wanted to do it a long time ago but I felt that it wasn't the right thing to do even though I would be better for it. I don't like to upset people so I bore it as long as I could but in the end I did have to change consultants which has made my life a lot happi' a lot easier.

And actually changing over, you know, was that a you know straightforward process?

Yeah, very easy... you don't even have to tell the consultant that you are doing it. You just go to your GP, you explain your reasons why. They don't actually have to tell your consultant what your reasons are. They just write to a new consultant for you or whoever you decide to go to 'Would you please take over the care of this person' and they agree or, or they don't agree you know it's as simple as that. It's very straightforward and I don't think they would be they'd say no to anybody. It's a straightforward thing and you do have that choice.

And it's worked out for you?

Yeah very much so. Definitely. Good move.

One man had made a complaint, although a little reluctantly, about his consultant who he considered had treated him badly. This resulted in him changing to a different consultant who he felt much happier with.

Parking was also a problem at many hospitals. People found they couldn't park close enough to the rheumatology clinic so sometimes needed a wheelchair.

Last reviewed August 2016.
Last updated August 2016.

 

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