Dreading my next rheumatology appointment, what shall I do?

The rheumatologists I have seen for the past few years & have confidence in, is currently on maternity leave. I have therefore been seen by 4 different rheumatologists this year, oh the joys of the NHS. The nicer ones of these verged on the incompetent, imagine Mr Bean meets Carry on Doctor & you'll get the picture. The one who seemed to make some sense with treatment planning was there temporarily. The final one was particularly unpleasant & got very defensive when I asked questions about my symptoms.

In addition to this, on 2 separate occasions, my symptoms have been recorded incorrectly in my notes. Which resulted in a referral being made to the wrong specialist, & a wasted appointment for them & me.

I have just spoken to the rheumatology nurse in the department & explained all this, but still don't feel any better about attending my next appointment in December. Shall I just cancel it & wait for the nice doctor to return in the spring? After all, I have struggled with my symptoms for years now & there doesn't seem to be much help on offer. But having a doctor you feel comfortable with makes such a difference. Your thoughts, comments & experiences would be gratefully received.

PS, I have SLE, Sjogren's & Fibromyalgia, but no organ involvement.

6 Replies

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  • Hi Roobarb - I have been really lucky and have had great help from my Rheumatologists from day one - in fact every time I see him or her I tell them that they are not allowed to retire and if they win the lottery I am moving with them so I can still get help!

    Seriously it does help so much when you have a doctor who will listen and take their time with you and explain things to you. I can never understand people who complain that their doctor is running late - at least it means he/.she is taking time with their patients. I once had a GP who had the prescription ready with your name and address on it before you sat down!!!!!!! (not joking)

    My husband works in a hospital and he sees both side of the coin. The patients who harass so the docs switch off but I always say that surely they must know who the constant whiners and moaners are and the genuine patients who need their help but then of course, it goes around in square circles - you need continuity of docs so they get to know you and you get to know them!

    No easy answer to it all but go to the appointment in December. Let them see that you are there needing and wanting help. If you cancel until spring they won't look into the reason why they will just see it as not needing to be seen on a more regular basis.

    Keep your chin up! - Irene x

  • It it rheumatologists that you see about Lupus then? Are there not specialists for Lupus?

    all the very best with your appointment Roobarb x

  • Thanks irenestephen. Its good to hear both sides of the story from your hubbie. So many doctors seem detached & uncaring, but I guess it's a coping mechanism. I never thought of the point that if I cancel they will just think I'm doing fine & don't really need their help.

    That's a good point Lucykris, there should be more lupus specialists. The rheumatologists I've seen, seem to have only a basic understanding of lupus. Unfortunately there are no lupus specialist within easy traveling distance for me.

  • Hi, do you go to countess by any chance? Try getting ref to Prof Mootsat he Royal Liverpool. He is based at the Fazakerly site and is fantastic. He sees people from all across the UK from Cumbria to the south coast.

    Good luck Helen

  • Yes I do! How could you tell? Thanks for the recommendation. X

  • It is so difficult when you get someone your not used to but I would go for the appointment spring is a long way off and you do need to be seen by a rheumie on a regular basis, you might be surprised and have a really nice one

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