Hi folks, just got home from a short stay in hospital for what I think is a lupus flare. The doctors wanted to know some information about my disease progression and arrange for an urgent appointment with my consultant. Sadly I live out of area which means that I am always sent to a different NHS Trust to my consultants. On 3 occasions in the last year, I have found it impossible to contact my consultant at these crunch times as indeed did the doctors in the MAU ward yesterday. Is this normal, am I asking too much? His secretary called this morning to say he didn't think it was necessary for me to see him until my scheduled appointment at the end of may and to just to continue on the high dose of steroids I have been given to supplement my methotrexate, despite his instruction 2years ago that I should only ever have a steroid by injection. I know that I am overly emotional due to the steroids and also the shock of having to go to hospital but I have been concerned about this or some time.
I would appreciate any advice as it always helps.
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Chablis
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This sounds pretty poor treatment to me. I ended up in hospital when my Consultant was on leave and the first think she did was appear by my bedside when she got back to work.
I have Vasculitis, not Lupus. But I live in Harrogate and am being treated by the Rheumatology department there. All the consultants seem pretty good. Recently I've seen Dr Lawson who is very thorough and Dr Koduri who has a special interest in connective tissue disease. Harrogate Rheumatology is a fairly small department and so I've found it relatively easy to get hold of people when necessary.
I've also seen Rheumatology consultants at Chapel Allerton in Leeds. Prof Emery and Dr Pease were key in making my initial diagnosis and treatment. Clinically they were very good but I had issues communicating with the department (hence my move to Harrogate). But that was a couple of years ago and things may well have improved.
That is exactly my point, they are good at the clinical stuff but seem to ignore needs of the patient on an emotional level. It is a shame. My last consultant was prof moots who gave me his email and secretaries number and I would always get a response within 24 hours if he was on the other side of the world or almost instantly if he was able.
I go to professor Emrys clinic in Leeds and cannot fault him or any of the doctors there! Any time I've had a problem I've telephoned and can guarantee within a few days or sometimes the same day, they will arrange an appointment and they are always very supportive.
Thank you delila, when I left prof moots he suggested prof emery as a good choice but sadly I wasn't allocated to him. I am in a real quandary, my consultant is making me feel like a hypochondriac as he is refusing to bring forward my appointments despite my recent issues, one of which I have been hospitalised for.
Hi, I also see Prof Emery and he's been fantastic. My lupus is very up and down with regards to blood test results and I had an awful time with the doctors at Airedale hospital (namely Dr *****) who seemed too inexperienced or lacking in confidence to make the diagnosis and start treatment. Prof Emery took one look at the file and my symptoms, diagnosed me and started azathioprine. I have to say, they're not the easiest to contact though, I've currently had to stop the azathioprine due to my white cell count being low and both me and my GP are still trying to get hold of them. Last time I was admitted into hospital I was still under the care of the doctors at Airedale and they seemed to send any random consultant available around to me. I guess it's no consolation and no excuse but they seem too understaffed and too disorganised to be able to sort any kind of consistant care. It makes it hard when you're already suffering. That said, if I ever need to see Prof Emery urgently they are good at getting an appointment once you finally get through to them. I do know that they also do appointments with the specialist rheumatology nurse at Leeds too, maybe you could give them a call. The rheumatology number is 0113 3923035, it's an answer phone service but may be worth a call. If you leave a message a specialist nurse will get back to you. If you tell them that you're concerned they may be able to help. Sorry for the very fragmented message and hope it makes sense! Take care x
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Disappointing rheumy appt
Got my appt in Leeds, yay I think
Autoimmune Disease or not?
