Recommendation for a rhuematologist

Posted , 6 users are following.

Can anyone recommend a rheumatologist in the UK? I am looking for someone either around London or the south. I live in Guernsey and rheumy's are few and far between here. I have been seeing someone in Southampton but I don't feel I am getting what I need and want to try a second opinion. 

When people see a rheumatologist do they have a plan to see them again? It all feels a little wishy washy to me. He does not agree with Dr. diagnosis of PMR but can't confirm his AS suggestion without another MRI scan but there is no plan to do another one. Am I supposed to chase this up or should it be more structured than this? Your advice is always appreciated. 

0 likes, 11 replies

11 Replies

  • Posted

    Elizabeth, the best in my opinion is Dr Rod Hughes at St Peter's Hospital in Chertsey, Surrey.  He has a special interest in PMR/GCA and has long been involved in research into these conditions.  People travel many miles to see him and I have yet to meet someone who has not been happy with their appointments, with one person saying they came out from their first appointment feeling a much happier person than when they walked in.  He was my second point of call after a disastrous year under another Rheumy, and he saw me through the rest of my years with these conditions.  Good luck!

    • Posted

      After experiencing minimal  support from my local rheumy, who appears to have a very limited understanding of PMR, thanks to the recommendations by many forum members, I have an NHS appointment with Dr Hughes in October. However, my appointment letter has warned me that I might not be able to see the man himself, as there are other drs available in the team. I understand this as I know that SpRs (specialist registrars) also work in the clinics, but I would be very disappointed if I had to see someone else. Luckily I don't live too far away from St Peter's. 

    • Posted

      Claire, you could always try ringing Dr Hughes's secretary, asking what the chances are of being seen by Dr Hughes himself, saying that you are seeking a second opinion having been disappointed in your previous rheumy, adding that Dr Hughes has been recommended to you. 

    • Posted

      Oh yes, that sounds ideal, thank you. It's been niggling at me... I'll go ahead and do that. 😊

    • Posted

      I saw my work occupational health consultant yesterday and he admitted that he had to think back to his medical school days to recall anything about PMR. 
    • Posted

      Why doesn't that surprise me?!!  Though to be fair, at least he recalled it which is better than we can say for a few GPs, sadly. who must have been sleeping through that part of their lectures.

    • Posted

      My GP arranged an urgent referral appointment and when I asked if he could request Dr Hughes, he said because it was an emergency it would be with whoever came up with the first available appointment. A few days later, I received the appointment letter....with a different consultant.  I rang Dr H's secretary, and asked if it could be switched to him.  She agreed, although it was a day later.  I hope you will be as lucky.

  • Posted

    If your doctor suspects ankylosing spondylitis then you need the right sort of scan to show it up. It is a possible answer because they can be confused in the earlier stages and there are a few people on the forms in that situation. 

    Normally your rheumy would order the MRI if he suspects something. But I don't know how it works for the Channel Islands. In England you are entitled to go anywhere on the NHS - if you can persuade your GP of his legal obligation to do that. It is different in Wales and Scotland so the Channels Islands may also be different. 

    MrsO has already recommended the person I would choose to go to from anywhere in the south of the UK. In the north I would try to get to see Prof Sarah Mackie at Leeds. 

    • Posted

      Hi Eileen

      Yes I had an MRI scan last year and the Rheumy said he would need another one to see if there were any changes to make a diagnosis. I have to travel to see him to ask him to do another one. It all seems a bit fluffy and expensive. I don't see why he can't tell me when he would like another MRI scan so I can do that before I see him again. Just feeling frustrated... again smile 

  • Posted

    Hi Elizabeth 

    I'm in Southampton. Who do you see there? I am under Winchester Hospital but was thinking of moving..... it's tricky isn't it! Don't want to jump out of the frying pan into the fire.  I wondered about getting a one off private consultation to see if we clicked before formally moving under NHS. Hope you find someone soon and make progress. R

    • Posted

      Hi Rudivi

      It is Prof Edwards at the Spires, I just feel that there is no care path and I am trying to do it myself. I went private thinking this would be better. I think I will see if I can see Dr Hughes as suggested above. It can't hurt. I hope you find someone yourself. 

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