Vasculitis UK
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An Ego Buster, a simple solution, or a step too far

After reading the problems Short Sarah & others have had with doctors & consultants not understanding what is "vasculitis", and what is the best way forward. Perhaps an open letter signed by an `eminent vasculitis specialist,` explaining that it is a very complicated disease and that a Dr./Specialist might typically only see one or two cases in their lifetime, and a full diagnosis can only be made by a vasculitis specialist

I am sure that someone could come up with something that would not offend, or bruise an ego. I just make the suggestion, and leave the words to someone more knowledgeable than myself.


5 Replies

There are the British Guidelines for Diagnosing and Treating ANCA Associated Vasculitis which are available to every consultant/doctor should they choose to look them up. The British Guide Lines have been available for a few years now. John is going as a Vasculitis patient representative, to a meeting next month to join the working group panel who are going to update the guidelines and also find ways of making them more known and accessible for all medical professionals. This panel/working group consistes of many of the well known specialists in Vasculitis in the UK. They are aware of this problem that not all people with vasculitis get the same care, support and treatment in the UK as they should and it varies enormously. Believe me they are trying to put this right but as with all things they do take time. In the meantime all patients with vasculitis should understand thier disease, an educated and informed patient is empowered to take control of their illness. Earlier this year there was a government consultation on the strategy for rare diseases in the UK. Vasculitis UK submitted a report which also included comments about the current delivery of care for people with Vasculitis and suggestions how it might be managed much better. If you would like a copy please email John ( it is a lengthy document)

All the best


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Hello Susan, thank you for your reply,

I do think that initially the lengthy document could be a problem, all doctors seem to have, an awful lot to read. I have been very lucky with the medical team who deal with me, but I have found if I have to deal with someone outside the team their knowledge of vasculitis is little or nonexistent. This is the reason I feel a short but informative document would make the doctor aware of the fact he or she needed more information, and hopefully they would go searching for it.

I do hope you don't think I`m meddling, but I feel so lucky with the way I have been treated, and wish all could be the same.



Not at all Tony.. we also wish everyone could be treated the same.... John has an excellent consultant and he only goes to the local hospital....but we still hear to many horror stories through the helpline...

"the document was very lengthy because of the special required answers needed to complete the document and it was a government consultation document".

You will find that doctors and consultants will not criticise each other openly.. what we need to do is try and encourage the ones who know nothing about Vasculitis to be more clued up and the ones that do specialise in Vasculitis to share their knowledge. Some consultants who have a specialist interest in Vasculitis are very willing to help and support other doctors and consultants treat patients.

The British Guide Lines to diagnose and treat Vasculitis have been around for a while but i wonder how many doctors know they are there or even bother to look, and if they do follow the guide lines how many look for more information/advice when things are obviously not going so well for their patient. If it was as simple as sending out a short letter to all doctors I think it would have been done by now... Updating and promoting the Guidelines is one sure way of getting the doctors attention...sending out booklets and dvd's are other ways...but because Vasculitis is so rare keeping the doctors attention is another story...

Things are improving immensley for tha patient with Vasculitis today... compared to when John was diagnosed 11 years ago...but even the consultants who specialise in Vasculitis still admit they are still learning about Vasculitis and the complications the disease brings plus the side effects of it's treatment. Before the early 70's almost everyone who was diagnosed with Vasculitis had less than 5 years survival.

Groups like this one and the fb group are so important for people with Vasculitis so they can share their experiences and also give each other the courage to question their doctor/consultant when things are not right, not going so well or if they feel so unwell... ..

all the best




Not sure if this is useful for your cause John and Susan but the software that they use at my GP's (standard NHS) surgery doesn't actually list Cerebral Vasculitis as a disease. When I saw a locum for a course of steroids he looked at the drop down list, saw CV wasn't there, and put my disease down as something else "that was similar." My actual GP has since removed this as a reference to my illness (thank goodness) but however similar it was surely CV should have been there as an option?


I don't know if this is relivent but. Our Headway group, i attend there twice a week, produce a card, for those who are speach impeded. It states, something like, 'I am a suvivour of a brain injury and have speach problems, as a result. please be patient with me'

I ahve no idea of 'wording'could not but a simple card giving information about vascutitis be made available?

Just an idea.



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