An update on where and what Vasculitis UK ar... - Vasculitis UK

Vasculitis UK

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An update on where and what Vasculitis UK are about at the moment...

John_Mills profile image

Just an update on what Vasculitis UK are about at the moment....VUK are involved with the current consultations on the “UK Plan for Rare Diseases” and working with the National Institute for Health and Clinical Excellence on the assessing of new treatment. VUK are represented on the British Society of Rheumatologists panel which is currently reviewing and updating the Guidelines for the treatment of ANCA Associated Vasculitis. VUK also play an active role in the UK Vasculitis Rare Disease Working Group

In terms of current research funding, VUK are supporting trials at Addenbrookes Hospital, Cambridge of a new drug for the treatment of vasculitis, Alemtuzumab as well as a project at Birmingham Wellcome Trust Clinical Research Facility into the effect of controlling cytomegalovirus in patients with vasculitis.

We are offering practical support for a research study into fatigue in vasculitis patients at Birmingham. Also a study at University College Hospital, London into use of high resolution MRI scans for vasculitis patients with subglottal stenosis (damage to the windpipe) and a further two new studies/research projects just about to start in the next couple of months.

This is all in addition to our core activity, which is offering information, advice and support to patients who are newly diagnosed with vasculitis as well as those who are living with vasculitis.

12 Replies

One thing for certain, no-one can honestly say that the Trust isn't doing everything within its powers to get vasculitis noticed by those who need to know.


Thank you for the update. It is very encouraging to know that positive things are happening with a view to helping all the sufferer's of this sneaky disease.

This is very encouraging.

I sometimes wish that it was possible to have some professional answers to some of the questions posed on this site. So often one hears from fellow patients who give recommendations regarding the use of certain drugs or discontinuation of others which have been prescribed, without medical guidance. The medical profession are working hard on this and although there is still much that they do not know, their experience is immensely valuable and I feel that patients giving recommendations to other patients on drug use, based only on their own experience, is quite foolhardy. Of course it is very interesting to hear the experiences of other patients and how it relates to ones own experiences but it does not mean one is qualified to give medical advice.

John_Mills profile image
John_MillsAdministrator in reply to amms43

It is important to note the statement in the blue box at the top of this page on the right side - "Content on this site does not replace the relationship between you and your doctors etc".

No doctors (or other professionals) would want to be part of a discussion group where they might be openly seen as contradicting or criticising their colleagues. So you will always get the advice to "discuss things with you doctor" - which is not usually very helpful.

The experience of other patients is very valuable. Nobody in their right mind would stop taking a drug because another patient said they should, although they might discuss that suggestion with their own doctors.

There is a great deal of accumulated knowledge among the patient group. Vasculitis is a rare disease and is very variable in how it affects different people and they respond differently to treatment. Many doctors treating vasculitis patients in local hospitals have limited experience -(not a criticism, just a statement of fact). The good doctors recognise their limitations and welcome feedback from patients and input from more experienced colleagues.

All the trustees of Vasculitis UK have sme form of systemic vasculitis. We attend lectures and seminars given by the top experts in vasculitis and have regular dialogue with them. We have access to the best textbooks and research papers. We tend also to have both the time and the interest to learn more. That doesn't make us experts, but we do also have cumulative experience gained from talking to hundreds of vasculitis patients.

If I come across a problem on this site that does not seem to be getting a satisfactory answer, I will seek an opinion from one of several doctors who are at the top of the field. But sometimes, if it's a really rare type of vasculitis, I ask one of a small cohort of patients who are more knowledgeable about their complex disease than all but a small handful of doctors.

I'm not sure if this answers your question and it might sound unintentionally pompous We do work with doctors and an understanding of the patient experience is valued greatly by them, which is why we are invited to sit on committees and panels as patient representatives.

I think the final point is that so many people with vasculitis are so grateful for what they learn from others on this HealthUnlocked site. I firmly believe that knowledge is power and that being knowledgeable about your illness gives you some ability to control it.

John Mills - chair - Vasculitis UK.

amms43 profile image
amms43 in reply to John_Mills

I agree with all you say and apologise if you felt I was undervaluing your site and the information it contains.

Of course doctors could not openly disagree with the opinions of other doctors regarding patients they do not know, that was not what I had in mind at all, just there are some queries which do not involve an existing medical opinion to which a professional view could be interesting and valuable.

Your site was recommended to me by the vasculitis clinic which I attend and which has changed my life and is quite wonderful. I would not read the letters on your site if I did not find them helpful. I was undiagnosed for almost ten years after developing the disease in 1998 and I have other problems which confuse my situation. The more information I can glean the better.

Perhaps I misunderstood two conversations which I read but which seemed to me to involve one patient recommending another patient to stop or start particular medications. Unfortunately it isn't only the completely dotty who fail to take their prescribed medication or who add other medicines. During a recent stay in an emergency admissions unit two patients in the six bed unit were there for precisely those reasons. It was watching them in their serious conditions which alerted me to these dangers.

I regret any misunderstanding I have caused.

John_Mills profile image
John_MillsAdministrator in reply to amms43

Thanks for responding. Yes we can get professional views on topics when there is no existing medical opinion, (but usually there is!). We have a small group of the top Drs who are cosistently very good at answering questions (others are not!). Because they are like they are they tend to be selfless and overworked, so we try to ration queries to them to only important or complex questions.

If people are concerned about aspects of their treatment or their medication, we encourage people to raise these issues with their doctors, but changng their medication without professional advice is never recommended and we discourage people from making such suggestions on this site.

If you are a vasculitis sufferer yourself and you are not already a member of Vasculitis UK, do please join us. We have a lot to offer and we make no demands in return. The biannual newsletter in itself contains a wealth of very varied information.

I saw my Consultant yesterday and noted some information re Vasculitis U.K in the waiting area .This is the first time any info was visible .I find these message updates and the input of yourselves very important as my consultant who is very good and supportive is the first to admit that he has not experienced the drug regimes and will often say that individual patients know best re how they are affected .He will also acknowledge that he and many of his colleagues can learn from patient experience which in my opinion is quite refreshing ( he has no ego will listen and collude with other proffessionals when required .The problem with this disease is that everyone reacts differently to the regimes and it is not always easy to get proffessional support on demand .I guess the more info we recieve the more empowered we become in our treatment regimes which is no bad thing .

HiveMind profile image
HiveMind in reply to cazy-g

Your consultant sounds brilliant crazy-g!

John_Mills profile image
John_MillsAdministrator in reply to cazy-g

Your consultant sounds great .. it is really good to hear such positive comments.. it would be good if you could tell us who you see if you think you could share the inforamtion.. :-) please private message me if you would rather.

All the best


I,m sure this is O.K ! He is Dr Dhaygude at Royal Preston hospital , his specialism is nephrology but has a special interest in vasculitis from which he has earned a degree or some avanced proffessional qualification on the subject just recently .He also lectures students on the condition .I would give him a reference any day .


John_Mills profile image
John_MillsAdministrator in reply to cazy-g

Brilliant.. :-) we have met Dr Ajay Dhaygude on more than one occasion he is a really special person also Dr Patrick McDowell from the same hospital. You and many others would give him a reference cazy-g :-)

At the 'end of the day', a bit like most things in life, a little 'common sence' is needed! Any advice offered, from one patient to another, is obviously advisory and neccecerily(is that right?) based on there own experience only. This is the advantage, and disadvantage, of this sort of site. Personally I'm glad that the site was 'set up' and find the exchange of views very helpful; I do however treat it ONLY in this light.

I'm glad that John and Sue have are trying to 'raise the profile' of vasculitis, in the media, and they should both be thanked for this.......Well done John and Sue!!!


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