Finding out whether a hospital or consultant is a Vasculitis specialist?

[Reboundman]

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.

[May7]

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.

[Main1234]

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

[Reboundman in reply to Main1234]

I did indeed do that and John was amazingly helpful - plan of action is already well underway post out call 😀. Thanks for your response

[Main1234 in reply to Reboundman]

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.

[AmyS1]

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

[eh66]

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.

[John_Mills Volunteer]

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

[Warralife in reply to John_Mills]

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.

[May7 in reply to Warralife]

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.

[John_Mills Volunteer in reply to Warralife]

If you give the VUK helpline a call we can have a chat , I also have GPA. vasculitis.org.uk/helpline

[Pollie in reply to John_Mills]

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

[pigeon12 in reply to 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.

[Pollie in reply to pigeon12]

thank you for your reply...I'm asking as I may be moving near there and I was under the impression there are "experts"!

[John_Mills Volunteer]

But it is vasculitis.org.uk/about/fin...