How frequently do people still trying to find a suitable treatment see their Consultant?

Is a 9 month wait to see your consultant usual practice because most consultants have a very heavy case load and the nurses lead the clinics or are other people seeing theirs more regularly? My consultant wanted to see me in January but when we tried to book the appointment in October she wasn't free until the end of June which they just cancelled and moved to the end of July. In the meantime the hospital have sent me an appointment with a doctor I have not met before to discuss new treatment as I have been unresponsive so far. If its normal at all hospitals I'll stay where I am even though I've since moved house, but if my hospital is particularly busy as it is a major one in London then I'll consider moving my treatment because I dread the thought of being bounced between doctors and having to explain my history each time. I was just hoping to find out about other people's experiences?

19 Replies

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  • If it's like Oz I get to see a new Registrar each time I go and now they have all left so a new crop to tell my story to all over again. This wastes half the appt and then I forget ha;lf of what I was going to ask. This time I am going to take a list and not leaving until I get the answers. It takes almost a year or more here to get in the hospital system and about 6 months privately if you can finds one with open books. I would ring and ask hospital near you how long the wait is and if it is shorter I would transfer.

  • I usually have 6 monthly appointments, but hardly ever see my rheumatologist. I normally, and am quite happy to see the specialist nurse with whom I have a good relationnship. When not seeing her I too see a different registrar each time and agree with Someonesmother that half the appointment is taken up with going over my history each time and forgetting to ask stuff.

    I think 9 months is a long time to wait especially as you have been unresponsive to treatment. Are you able to ring the rheumatology helpline at your hospital? If ever I'm struggling I can ring and they'll ring back on the same day and usually see me in clinic within a few days. It may be worth your while finding somewhere else.

  • I was having appointments every 3 months. Alternating between consultant and nurse. They have now been moved to every 6 months. I see the same consultant but different Rheumy nurses. As you've not yet responded to treatment it does seem a long time.

  • I can only tell you my experience, I was under a rheumatologist for three years, most times I saw one of his registrars. (registrars work one year as part of their training.) After three years I was the rheumy again only to be told I was signed off,because I couldn't tolerate his given drugs. I asked my GP to refer me to the next county and had a consultation with the rheumy who examined me and said he would see me in twelve month,I have just received my second appointment in March,just short of two years from seeing him. So in total it is six and a half years since being referred without a proper diagnosis or treatment.

  • Now I'm stable I only see consultant about once a year and can call the nurse if I need anything inbetween. But that's now. At the beginning when I was still trying out drug mixes to get this under control I saw someone every 6 weeks for the first 4 or 5 months and then the gaps slowly lengthened. My consultant went on maternity leave so there was a while when I saw locums. And I go to a busy London hospital, so I think 9 months is just not good enough.

  • I was diagnosed in sept last year and was told I would be seen in a month initially . eventually given an appointment in January ! that was again cancelled and I am due to be seen in march so I haven't seen a consultant at all since sept ! I have had one appointment with nurse to start mtx which doesn't seem to be doing anything. hoping they might try something different when I eventually see consultant , not really good enough I feel and see I am not alone. I am in Warwickshire.

  • I waited 9 months from diagnosis and MTX to see my consultant again but saw my GP monthly to 2 weekly and he would email my consultant about me often so I got treatment adjusted and altered through the GP who was being guided by my consultant. Not ideal and I did write a letter complaining on my GP's suggestion. Since then its been 6 monthly to four monthly gaps depending on how I am. I live on an island and know how things work here now. But as you are in London you could look elsewhere as many more people of course but also more choice?

  • Nine months does seem far to long, perhaps make enquiries nearer home. Like the others, I very rarely see the consultant - our clinic used GP' s with an interest in rheumatology, but if I need to speak to consultant I just have to ask. I was due a 12 appointment after my visit in November, it has arrived this week and is actually 21 weeks, lol! I have discovered a rheumy nurse at our hospital who is there for 1 3/4 hours twice a week - she speaks to the consultant, so there is hope there. Google luck with your search. Anne x

  • I have seen my consultant every 6 months since I was diagnosed in 2004, with appointments with a specialist nurse as well in the first couple of years.

  • I've been stable on meds for ages. I was quite happy with annual appointments until they decided I was in remission. Oh slippery slope! I'm off all meds and in a lot of pain. Saw rheumy at end jan and am waiting ?8 weeks for an MRI scan and on another list to see a surgeon. She could see I was desperate but could offer nothing. No appt til December. I'm going to make a fuss because I can't function - the usual, getting dressed, standing from sitting, walking. It's shocking to be back here after 10 years or so of reasonable functioning.

    So once a year is the answer here. There's quite a big shortage of rheumys and obviously more expert nurses would help. It's not good enough! So mornings I lie here thinking about the most effective way to make a fuss. I'm writing a pain diary to back up the tests they're doing with their magic equipment.

  • Here it is an annual review - unless there are problems. If there are problems, I ring the rheumy nurse and she arranges an earlier appointment, although a couple of times recently, I saw the GP, had more tests and then she asked for an urgent appointment.

    If your condition is not controlled you need to push to be seen and your medication altered.If there is no rheumy nurse you can ring, try your GP, if no response from them, write letters. It is not right that you should be left not adequately treated.

  • I get appointments at the local hospital rheumatology unity every six months. I nearly always see a local GP who has an interest in RA. My own GP does nothing at all and I don't have a rheumy nurse. I have been injecting MTX 17.5 for several years but still have a lot of pain.

  • Thanks for everyone's response. I do have a very good specialist nurse I'm just having difficulties because now they've deemed me unresponsive to DMARDS which as we know takes ages I had expected my consultant to be more involved with discussing alternative treatments with me direct. Sounds like most of us are in the same boat though. Thanks for sharing your experiences x

  • Im in South East London and was diagnosed 16 months ago was seen October 2012 then 6 weeks later then it's been every 3 months and only once did I see the registar . I guess it may start to be longer between appointments soon .

  • Gosh sash, I wouldn't be happy with that.

    I've been seeing my consultant for two and a half years and every time I go I say I would like to see him personally and I do. Like you I'm not stable on meds and see him about every 4 months. I did have a stable period before I was diagnosed and then it went to to 6 monthly visits. I go to a London hospital too so it's definitely worth considering a change especially if you're not happy. Good luck Rx

  • Mmm, maybe 6 months or even 9 is okay once your disease is under control. But if it isn't and there are decisions to be made then waiting seems downright negligent to me because of the risk of joint damage. I don't mean to be alarmist 'cos obviously I don't know the whole story. But I think you should get pushy or even consider changing rheumys. I changed then had to wait 6 months but at least once I saw the new consultant it was all systems go. And because he thinks I may need a biologic he's seeing me in 4 months time. If there's considerable improvement they can leave me as long as they like (with a contact number in case there's a sudden big change, or course) but I thought that early treatment - treatment that works I mean - was the aim.

  • Mine are three/four monthly with a Consultant if everything under control but at the mo I am seeing the Rheumatologist every month to six weeks as the med is not working and I am due to change. At my hospital you can request either of the two Consultants when you check in on reception, but have to be prepared for more of a wait. There are also two Registrars and two Rheumatology nurses. I usually only see the nurses when things have been very stable for a while or changing to a new med, for pre-assessment part, etc. Sasha.. nine months too long unless under really good control and Postle .. that sounds unusual to say the least and not acceptable. :-( I found in the early days when I was under control and saw the more junior staff I was spending a lot of time going back to ... So what happened when you first started with your RA? ... so I typed a concise timeline in a table format for them, with key dates and meds etc and problem joints and gave it to them as soon as I went in. They read it and then didn't spend anything like as much time on the history part of it.

  • Nine months is too long I feel. As you use a London hospital, is there a choice of other London hospitals that you could transfer to? Would you go through PALS to see if that could speed it up. I am very lucky with the treatment I receive. I see the same consultant, at the moment it is every 4 to 6 months as my condition is not under control and see the rheumatology nurse inbetween, also have a nurse helpline.

  • About every 4 months even though I've never been stable on treatment (first diagnosed in 2010 and have tried 5 drugs since then. During this time it has become erosive & aggressive unfortunately). But I'm seeing the specialist nurse regularly who liaises with the consultant. I'm also in London & know that there are hundreds of people seeing the team. I agree with others that 9 months is too long, is there a possibility of transferring to another hospital? (I looked into this recently as I was fed up with feeling like a 'number' - in case anyone's interested - according to this publication from the Royal College of Physicians (see top of page 9 for the table), there are only 106 rheumatologists in the whole of London with a population of 7.4 million. It also gives figures for the rest of the country like 39 for the whole of the East of England!

    rcplondon.ac.uk/sites/defau... Good luck, Fran.

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