Help needed in Scotland: My partner was... - Vasculitis UK

Vasculitis UK

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Help needed in Scotland

Callas profile image
8 Replies

My partner was diagnosed with Vasculitis 3 years ago and treated at Ninewells. The lead consultant has since moved and subsequently the treatment my partner received has flatlined. A letter arrived today saying that Ninewells are 'discharging' my partner from their care. They have not run any tests (aside from bloods) in the past 18 months and, in fact, my partner's condition has deteriorated significantly over that time. Can anyone recommend another Hospital in the Central Belt that has a specialist vasculitis unit? We need help urgently.

Thank you

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Callas profile image
Callas
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8 Replies

Hi Callas,

I live in Scotland and have some knowledge of the Consultants there.

You can e mail me on lynn@vasculitis.org.uk and I will try to help.

It would be useful if you could indicate what variant of Vasculitus your partner has and what treatment they are receiving.

Best wishes

Keyes

Suzym2u profile image
Suzym2uModeratorVasculitis UK

Lynn will help Callas with how to request a referral to another hospital, when she has more details. Dr McLaren at Kirkcaldy sees patients with Vasculitis. But there are Doctors at Edinburgh too.

best wishes

Susan

Hi Callas, Sorry you are in this situation,Scotland seems to be very poor in respect to Consultants with interest in Vasculitis.I know Aberdeen And Edinburgh have specialists their. I myself go down to Addenbrookes hospital in Cambridge the care their is first class and they are so supportive. Hope you get something.

Callas profile image
Callas

I can't thank you enough for all your help. It's really encouraging to know that there is such a supportive community available. We'd been struggling with this for years now and I only wish I'd discovered this site sooner. Lynn has given me some excellent suggestions so now it's time to tackle our GP and get referred out of our local health authority.

A million thanks..

purvis64 profile image
purvis64

I see Dr. Smith at Ninewells Respiratory Dept. I have been happy with him.. I have been holding my own for about 4 years. Sounds like you need to get someone proactive. I wish you all the best in getting that. Just having a person who helps out like you have been doing is great. When I first became ill my hubby sorted things out for me. He talked to the docs and looked up info. I couldn't remember what they had said as soon as I walked out of the room.

Take best care, stay strong.

orsen-trapp profile image
orsen-trapp

I am looked after very well at Glasgow royal infirmary in conjunction with my local hospital to avoid unnecessary travel. I would heartily recommend my rheumatologist.

in reply toorsen-trapp

I have passed on the excellent GRI Rheumy's details. 😄

sreblem profile image
sreblem

Edinburgh has a specialist vasculitis unit. I go there myself and would recommend it. I have kidney problems and MPA. I know they see patients from other areas of Scotland.

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