Rheumatology appointments, post code lottery?

Been seeing Rheumatolgist for the past 4 years, first at my local hospital, but never saw same person twice, had appointments cancelled as no staff. So I asked if I could move to next city. Had appointments Aug, Nov and Jan, was supposed to be seen again in May, but been told I'm on the list, but they are running behind!

GP has decided I need 3 monthly blood tests and they are going to take care of these, at the moment my diagnosis is 'something auto immune, connective tissue disease' Raynaurds and migraine which causes numbness and at times stroke light symptoms. I also have decrease lung capacity due to scarring, never smoked. Get out of breath climbing a flight of stairs.

I have mobility problems due to cramp- had it for over 12 months, nearly every day, numbness in top of leg and now problems with knee on other lag as I am compensating! I also have nerve pain and numbness in both feet. I also have terrible fatigue and cognitive issues. I am unable to work.

My question is what do you think I should do? See if I can get my GP to see if I can be seen at second hospital? I would say I'm 'stable' but not improving. Find out if things are better at my local hospital and go back there? Or see if there is another hospital I could be seen at? Lucky in the fact that I live near 3 or 4 different health trusts.

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  • Hello gymbabe

    I know you'be been here on forum for a while. Am dismayed by how the system is treating you

    My feeling is that you'd do best to be seen at a rheumatology clinic that specialises in immune dysfunction & connective tissue disorder (and not mainly in RA)...Lupus UK's Paul Howard usually helps here with finding clinics of this sort nearest us...you can message him here, using the tab at the v top of this page next to your forum name:


    Hope you'll keep us posted

    ๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€ coco

  • Thanks, I will try and msge him, when my brain works out how to do it.

    The second hospital, a teaching hospital is supposed to be a centre of exerlance in auto immune disease. I was happy and thought I was getting better treatment until this delay.

  • Hmmm....this second hospital clinic does sound as if it should be a keeper...does it have a specialist nurse, or some other sort of helpline you can call? Or have you done this already?

    Next I'd try phoning the head of clinic's secretary. Sometimes it's those who shout loudest who get attention....

    also I'd press my GP to write explaining the progression & severity of these symptoms...

    Am hoping you'll get some good replies here today

    Courage...I know: you're having an ultra tough time...take care


  • Hi gymbabe

    I agree with Barnclown that the second Rheumy clinic sounds a better one for you to stay with. All Rheumatology clinics run behind as they're so busy so no advantage there to keep moving as long as Specialist is a good one. It's up to us to ring up and ask to be on cancellation list or at my clinic I can ring and make the appointment if due and I'm unwell.

    A couple of thoughts , maybe physio might help your nerve pain/ numbness as you say you've been compensating for the pain!. Easy to do!. Have you been seen by a neurologist?. Also pain clinics are very good at treating pain in different ways. I've had a lot of help from one.

    Whatever decision you make it will be the right one for you. Good luck and keep us posted. X

  • I've been in a similar position, and it's been my GP who sent a blistering letter to the world and their sidekicks. It's got things moving along - I''ve now had injections in my hips, am getting physio, and attend a pain clinic in a couple of weeks. For the moment, I'm most pleased with physio. I am only to do tiny stretches at the moment - that will do. The physio spotted that I was ruining my knees by compensating for my hips. At least one problem forestalled. The thing that gets me so annoyed about the system is that they seem to offer so little advice on what you can do to help yourself, rather than having to practice being a patient patient.

  • Nothing to add to Barnclown and Misty's excellent replies except to agree that UK rheumatology is suffering very badly from shortage of rheumies everywhere and rheumatology nurses too. In my experience neurology is in equally dire straights across the board. So pestering the present hospital to expedite your appointment is probably your best bet.

    Your GP may be able to add pressure on them too. I think the hardest thing might be not having a name for your autoimmunity/ CT disease. Somethow a name helps us to feel more confident about what we might expect. But sadly the name doesn't always materialise - and even when it does the rheumatology clinic lists tend to prioritise new referrals (especially for RA) over existing patients as this is in keeping with guidelines on waiting times. I wouldn't settle for just existing with your symptoms. They may not be getting worse but the rheum should be working hard to try and make you feel a whole lot better now.

    I have lots of neuro features - in fact these are my worst symptoms and I now have a diagnosis of primary Sjogren's Syndrome to account for them. It helps me a lot to have a name although I'm still waiting two more months to see if I can get onto further treatment to prevent deterioration.

  • Thank you all. I haven't seen a Rheumy nurse at the new hospital, but they do have a helpline, so I will try them again.

    When I had my first appt they mentioned me seeing a Nuerologist and maybe having another MRI, but when I mentioned it at my last appt, she said there was no need as none of my symptoms had changed?

    I do seem to be worse in winter, is this normal? My joints were so stiff this am I had trouble putting my socks on! The heat warm weather does seem to help, as long as I keep out of the sun.

    I don't like to make a nuisance of myself, especially when I don't really have anything new to report at the moment, but they said they wanted to see me after 4 months to see how I was on the Hydroychlorine, I've been on it 9 months ago now, can't say I feel any better and my short term memory is terrible.

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