Hi everyone -
Basic question - a lot of people have recommended that long term treatment should be with a centre or consultant that specialises in vasculitis. Is there a simple way to find out where these specialists are and if my current team would be seen as specialists in this area? Many thanks in advance.
Hello, I don't know the full answer to your question, but when I was referred to my particular rheumatology consultant, I looked her up on my hospital's website. It lists her clinical interests, amongst which is vasculitis. Similarly for the other consultants.
You may find a call to the vasculitis help line useful, they will be able to signpost you to a centre of excellence. They are extremely knowledgeable and helpful. Good luck
I did indeed do that and John was amazingly helpful - plan of action is already well underway post out call 😀. Thanks for your response
Glad you were able to get a plan of action. John and his wife Sue are amazing and are a life saver to those that have vasculitis as are their support workers.
Email John Mills he will know the vasculitis centres there aren't that many. A consultant with an interest in vasculitis is very different to s vasculitis specialist centre eg at QE Birmingham, Addenbrookes ,Hammersmith Hospital etc
The registrar from the Rheumatology team said there's a specialist from the Vasculitis team coming to see you and about 30 minutes later he appeared. I Googled him up later. Also he sends my GP an update on headed paper after I have a meeting with him, which he cc's to me.
Multidisciplinary Vasculitis clinics Birmingham QE - Prof Lorraine Harper
Addenbrookes Cambridge - Prof David Jayne
Hammersmith London - Dr Stephen Macadoo
T&G London - Prof David D’Cruz
Kellgren Centre Manchester - Dr Ben Parker
Newcastle Freeman’s - Prof Bridget Griffiths
Aberdeen Hospital - Prof Nick Fluck
Vasculitis Special Clinics
Royal Free London - Prof Alan Salama
Oxford - Prof Raashid Luqmani
Norwich &Norfolk - Dr Chethan Mukhtyar
Nottingham Queens - Dr Peter Lanyon
Aintree/ Liverpool/Broadgreen - Dr Janice Harper
Aintree - Prof Robert Moot ( Behcets )
Edinburgh - Dr Bean
Glasgow - Prof Neil Basu
Kirkcaldy Hospital - Dr John McLaren
Cardiff - Dr Sian Griffin , Dr Julian Nash
Bristol - Dr Jo Robson
Leeds - Prof Ann Morgan
Salford Royal - Dr Nina Brown
Thank you for this John. I was happy with my first rheumatologist of 2 years, who had an interest in Vasculitis, but he went to work abroad. The one I have now doesn’t list vasculitis as one of her interests or specialities. I’ve had no contact from her since last September and was due a review in March. GPA hit my kidneys and I’m happy with my renal consultant but worried about the Rheumatology side. I don’t know if it would be wise to seek out a different Vasculitis specialist at a different hospital (none particularly close to me) but I don’t want to upset the applecart with my renal care.
Just a couple of thoughts on these points. While you are researching a new vasculitis specialist, I would try not to worry too much about not hearing from your present consultant if you have been having your regular blood tests. I haven't had any contact from mine this year, due to covid, but she is on the ball with my results, and I'm seeing her in early November. Furthermore, since my kidneys were badly affected I've had a marvellous nephrologist looking after not only my kidneys, but my case (EPGA) as a whole. She has access to my results as well. But if you haven't had regular blood tests, then you need to at least get in touch with your Rheumatology dept. to sort it out.
If you give the VUK helpline a call we can have a chat , I also have GPA. vasculitis.org.uk/helpline
There is a supporters' group in Portsmouth...but I notice this is not on your list...or anywhere nearby?? Would you confirm that there is no clinic there please...thank you Pollie
Hi Pollie. I was diagnosed with GPA vasculitis at the QA hospital in Portsmouth in 2016 and have had excellent care there. I was told it was the regional centre for vasculitis. Dr Mark Uniacke is my renal consultant and Dr Earnest Wong my rheumatology consultant and I can't praise them highly enough. I have also been referred by them to other specialities when necessary.
But it is vasculitis.org.uk/about/fin...
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