Specialists treating you in the UK?

[Nadine99]

I write on behalf of my husband who has recently been diagnosed with WG. We live in France at the moment but because of this illness, we are selling our business & returning to the UK. In France we have excellent health care & his primary consultant is in the Infections dept who also deal with tropical diseases. I have seen people mention that their consultants are Rhematoid based. My husband is still having tests to all parts of his body and healthcare here is very preventative - they don't wait for the problem to arrive!!

Can you tell us a) which type of consultant treats you b) are they pro active in searching out problems or c) do you push your own care with them.

I know that seems a lot a questions but your input would be appreciated.

Thank you & Happy New Year to you all

[John_Mills Volunteer]

Hi Nadine, We spend a lot of time in France. I've had WG for 11 years now. About 4 years ago I had cause to visit our local GP in France, the lovely Dr Maumet. He was quite knowledgeable about vasculitis and gave me a thorough examination, even though all I really wanted was an INR test as I take anticoagulants. A lot depends on where your husband was mainly affected. If kidneys, he's best with a nephrologist. If lungs, maybe with a respiratory consultant. Otherwise, WG tends to fall within the rheumatologist's remit, as it is an auto-immune inflammatory disease. Most important is to end up with someone who has a serious interest in/knowledge of WG and experience. Send me a private email with more info, esp about where you are planning to live, and I can maybe point you in the right direction.

[Ayla Volunteer]

Hello Nadine!

There is little I can add to the sound advice given by John but I felt compelled to let you know that we too lived in France for 3 years, returning in 2009 for a variety of reasons. My vasculitis was well understood by our GP in France except when the kidneys became involved in November 2008 and I was hospitalised for a week with suspected kidney stones. The usually excellent French health care let me down at this stage, despite my known condition (MPA), nephritis caused by the vasculitis was not diagnosed and I was not treated.

Since returning to the UK I am under the care of a renal specialist, some 2 hours drive from my home. His understanding of my condition is excellent and he is reasonably pro active in that he is always looking for developments, good or bad! However, his registrars are perhaps not so knowledgeable.

From other people I have heard that specialist treatment in the UK can be patchy in quality so it might be advisable to try to live reasonably close to a centre of knowledge and excellence, if this is possible. John will advise you on this.

You are going through a difficult time right now, and you have my sympathy, but I am sure things will settle once you have relocated. At least your husband won't be having to explain in French vague symptoms that he doesn't understand! Good luck.