Ref. the NICE recomendations

[tom21]

Patients with AAV should have a nominated clinician within clinical networks linked to centre of expertise.

I have a clinician but there doesn't seem to be a network or centre of expertise ,in the Cumbria/north east,

where is the nearest centre &how do you find out numbers of vasculitus people in this area,or similar people with Wegeners.

[LynneJ Vasculitis UK Volunteer]

Have you checked out the VasculitisUK page for support groups near you?vasculitis.org.uk/about/loc...

If you contact the nearest one to you they would be able to help.

[Hidden in reply to LynneJ]

That's me See my reply below.

[tom21 in reply to LynneJ]

Thanks contact with Martin Thomas.

[Jann]

Hi Tom,

There are a couple of people in the lake district. I am in Lancaster and there are a few in Preston/Blackburn/Blackpool. I am treated at Preston hospital and there a couple of knowledge consultants there. There are specialist clinics in Liverpool and Manchester.

Myself and another WG suffer run a support group. We meet twice a year in a hotel near Preston but close to the M6. The next one is March 2015. So perhaps we will see you there. I will be putting the details on the Vasculitis UK web site soon.

[tom21 in reply to Jann]

thanks will keep eye open for date .

[Jann]

Love to see you there.

[Hidden]

I have WG/GWP and I'm treated in Cumbria (Carlisle). The hospital is linked to Addenbrookes, Cambridge. Without a shadow of a doubt, Dr Paul Mead at The Cumberland Infirmary is one of the most knowledgeable AAV specialists in the north of England and if you're not under him, or under one of his staff then I suggest you ask to see him. He also works at Whitehaven on Tuesdays.

V-UK HQ may provide you with an estimate of AAV patients in Cumbria but I know of quite a few who aren't members. The incidence of the disease in the region is about twice the national average i.e. 7 - 8 cases a year. I'd take a rough guess and say there are 20 - 30 with WG/GWP.

I act as co-ordinator for AAV patients in Cumbria but don't have regular support group meetings due to having so few V-UK members and spread geographically very wide but please feel free to contact me directly either here or via [e-mail].

Healthy wishes.

[tom21 in reply to Hidden]

See Dr BOW from carlisle hospital.hé works with Dr Mead .

I didnt now of link To any centre ,will ask at next contact,tanks.