I have recently been diagnosed with RA (I was originally thought to have Sjogren's Syndrome). I live in Stroud and my local hospital in Gloucester has been absolutely hopeless. My GP was going to refer me to a hospital in Bath but I then heard horror stories about that. She then agreed to refer me to University College Hospital in London as it seemed to have reasonably good reports for treating patients with RA. My referral was only sent last week so I haven't been to UCHL yet.
I am just wondering if anyone else has been to referred to a hospital in London which is outside their local area and have they been referred back to their GP after their initial consultation? My worry is that I am going to go there, have one appointment and then be referred back to my GP for treatment at my local hopsital (Heaven help me!).
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KJay
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My rheumatologist comes to where I live every four months but if I am desperate and need to see him very urgently ever I would be flown down to Aberdeen for the day so travel for healthcare is something most people where I live know a lot about. I am very surprised that you weren't referred to the hospital in Bath which is the UK centre for rheumatology and many people travel across Britain for it? Several people on this site have mentioned it to me before but perhaps it is only for private patients I'm not sure? Hopefully someone who knows about this Bath place will come on and say but maybe you could put Bath into the NRAS search bar and these old posts will come up? I would have thought UCHL would be pretty good but it's not ideal having to travel to receive your care I can see. Tilda x
Thanks so much for your reply. I was referred to Bath but a close friend with very bad RA goes there and said she never has never seen the same person twice and neither did a lady on another forum (she was diagnosed with another condition in 1990) who was referred to the same rheumatologist I was about to be referred to. She said she had only every seen him once, that care was very rushed and she didn't feel that she had been listened to and was in a pretty desperate state.
Like you, I don't mind travelling for good care and am thankfully physically able to do that at the moment. Having only been diagnosed a month ago, and having seen my dear friend become crippled by the condition, I want to make sure I do everything possible at this point in time to try and ameliorate the long term effects if at all possible Part of that is having a great medical team although this may be a dream on the NHS!.
I'm keeping my fingers crossed that UCHL is as good as it sounds and that I don't get referred back to my poor GP who may have to write yet another letter of referral! x
Why not consider Nuffield Orthopaedic in Oxford? Its an NHS centre of excellence. I went there until about 4 years ago when I moved to Scotland. I think if you're going somewhere regularly it needs to be reasonably easy to get to. I don't know about transport from Stroud to Oxford though but there's a reasonably regular train and i think buses go from oxford station to headington where the hospital is.
My only experience of Bath is when my mother developed RA in the early 1960s she went there. She was actually admitted for three months, took the waters, had hydrotherapy in the spa waters. Got gold injections and the usual standard treatment for the time. This experience isn't really relevant now though! I think Tilda's right that its also a really important centre for RA treatment. Good luck.
Many thanks for the recommendation Cathie. I shall certainly bear that in mind if UCHL refer me back to my GP after the initial consultation. In many ways London is easier to get to for me as train travel is direct and I don't have to worry about driving. The only thing is the cost of the train tickets nowaday which can be prohibitive! x
I was diagnosis. At guys but then had to go back to Kent for treatment.the first hosp was bad but the second one was great for me others hate it decide after you have tried it what you want may be fine at bath or oxford both have good write ups
Many thanks everyone. Similar to you Chris, I was diagnosed at St Thomas'. I was thought to have Sjogren's and APS and saw Professor D'Cruz. He did initially refer me back to my GP after my first appointment until the blood test results came back and I was recalled and together with my joint problems he said he thought I had RA. He did say I could go back to him but he specialises in APS and Lupus and I would probably be better off seeing a rheumy specialising in RA hence I asked my doctor to refer me to Bath before knowing what other people has said about it.
I probably should have taken Professor D'Cruz up on his offer!
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