James Paget Hospital, Lowestoft

[Nadine99]

We've moved back to Norfolk and back to being treated at Addenbrookes which is fine but quite a way to travel.

Is anyone with Vasculitus (my husband has Wegener's/GPA) being treated at the James Paget and if so, who's treating you & are they 'any good'?

[PatriciaAnn]

Hi Nadine

Cant help on the James Paget front, sorry.

However, I would think long and hard before considering changing from Addenbrookes (a centre of vasculitis excellence) to a hospital which might have excellent physicians, but possibly not of the calibre for treating vasculitis as found at Addenbrookes. If it is possible to travel then that is something I would certainly consider.

Maybe other members might know more about the hospital you have in mind.

PatriciaAnn

[PMRpro]

Given I know people who travel from Scotland to Addenbrookes - I think that says it all doesn't it? The chances of finding a vasculitis expert in a regional hospital is small - and usually when they are really good they are soon on their way to a top department somewhere else.

[Nadine99 in reply to PMRpro]

I understand exactly what you both say. One of our main reasons for moving back to Norfolk was to be able to go to Addenbrookes but having said that, my husband was well looked after at Plymouth and if in doubt, they would contact Addenbrookes. He's just had the 1st infusion of Rituximab with the 2nd on 30th Dec so if that controls his WG then we won't have to make so many trips to Addenbrookes. They are getting so busy there, they seem to run between 1 & 2 hours late but you still have to arrive on time. We also saw an Italian doctor there the last time, who we found quite agressive and totally uninterested in our opinions.

We just wanted to know if anyone is being treated at James Paget but appreciate your comments.

[Suzym2u Moderator Vasculitis UK]

Norfolk and Norwich Hospital treat patients with Vasculitis also Ipswich Hospital. Two of VUK's medical advisors, are from these two hospitals and both see patients with vasculitis, Nadine. if you want to drop John a line he can help with some advice. [e-mail]

all the best

Susan

[AndrewT]

Dear Nadine99,

I can only echo the advice above- don't change from Addenbrooke's, no really, really, really don't! Dr David Jane, THE world leader in this field- who is also incidentally an advisor to Vasculitis UK (our sister organisation)- is based at Addenbrooke's Hospital. This should be 'enough said', on it's own, but if you do want more convincing.....I had a kidney transplant, at Addenbrooke's Hospital, nearly eighteen months ago. My main care has now been transferred back to Ipswich Hospital, who I was under prior to dialysis. I am however, at my own choice, still under Addenbrooke's Hospital, for my vasculitis, even though I could have changed this. As I said to the registrar, who last saw me, I would not change this unless I absolutely HAD to.

I do hope that the above has changed your mind, about leaving Dr Jane's team (at Addenbrooke's). I know that travelling can be a problem, however Addenbrooke's can arrange transport for you. I am also aware that the transport, provided by Addenbrooke's, may well pick you up early in the morning and/or deliver you home quite late. I further understand that this can be rather inconvenient sometimes. As I said I know all of this and my advice remains the same, please don't change!

Sorry to 'bang on' so, your best interests are in my heart, I promise.

In any event- I wish you, and your family, a very merry Christmas.

Very best wishes AndrewT