Specialist centre in Wales?

[Chipper03]

I would value advice on specialist centre for vasculitis in Wales. After 9 years with no flare, under respiratory consultant because my lungs were main organ affected, I now seem to be having a flare which is affecting my digestive system. I remember hearing there are specialist centres where a group of consultants treat vasculitis. I have EGPA Churg Strauss, and take steroid and azathioprine. I live South East Wales, so if no specialist centre in Wales, one near-ish to me? I need to have an idea what/who I’m asking for with consultant and GP. Thanks!

[AngharadJ5]

Hello.

Cardiff has a vasculitis clinic but I wouldn’t say it is a specialist centre.

My understanding is that the bigger ones are Birmingham and Addenbrooks in Cambridge. If you don’t get any other replies, contact the vasculitis U.K. helpline and they can help.

It’s difficult getting a referral across the border so you need to be persistent and pushy.

[Chipper03 in reply to AngharadJ5]

Thanks so much, will do! A sad fact that having a rare disease means we have to be so persistent there just aren’t the recognised ‘pathways’ for us. Also, it’s presenting so differently this time, I’m under the ‘wrong’ consultant, having fought to get into the respiratory specialism all those years ago.

[AngharadJ5 in reply to Chipper03]

It gets very frustrating.

I live in South Wales too and get seen at Hammersmith as I have large vessel vasc. I was quite lucky getting my referral as they did it the wrong way around but I understand others have had more trouble getting a referral to England.

I help run the South Wales vasculitis group. If you send me an email, I can forward it to Jenny who does most of the work as she has the same type of vasculitis as you and might have some more advice?

You can email me on Angharad [e-mail]

[Chipper03 in reply to AngharadJ5]

Many thanks, I’ll do that.

[AmyS1]

It is worth travelling to Birmingham or Addenbrookes Cambridge. I realise that it is a long way but good treatment will improve your life no end.

[Chipper03 in reply to AmyS1]

Thanks so much for the reply! I’ll be prepared to travel to those, now I know what I’m aiming for.