Vasculitis UK
5,679 members5,125 posts

The new BRS ROADMAP for us

I appreciate the pinned post regarding this monumental attempt to get our complex diseases better understood and more quickly diagnosed.

I dont know if there is another way of doing it, but my wish would be that instead of dropping enlightenment on the canopy of the tree of knowledge, they could somehow upend the tree and directly stuff the roots with fast acting, quick absorbing nuggets of information, so that when we approach any tree, the information is more readily at hand. So much water drips off all that lush top and never gets near the growth under it.

I know there has to be a system and all the well thought detail gladdens my heart, but with my sad, long experience of butting heads with disinterested, incurious medics both GP and so called Consultants, I fear the length of time it will take for some awareness to be spread will not benefit me in what I know will be my foreshortened lifetime. I do not begrudge those in my wake their triumphs but had hoped to see more progress before I go.

Nonetheless, thanks for the links to this little acorn of hope


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I hope you don't mind a brief interjection from the PAS forum...

First off, thanks to Hidden for messaging me about this document. I must confess to only having read the summary of recommendations, but they did, in principal, sound familiar. That's the sort of top-down strategy that the PAS (well, Martyn Hooper) has been following. And it does seem to be showing some signs of success. Lots of researchers are now looking into Pernicious Anaemia and top health professionals are getting together to try to improve our lot.

The bottom-up approach suffers because many GPs and consultants suffer from various impediments that make them resistant to learning new things - the main one being a severe lack of any time.

But users of the health service can help by trying to educate their own providers. I've given my GP a copy of Martyn Hooper's book 'What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency' - which he read and then passed around the rest of the practice. My gastroenterologist has also got a copy.

It's a small thing, and it's not going to work with everybody (my haematologist refused a copy because 'I already know everything about PA' - you all know the type).

So I'm a great believer in getting the organisations to work on the big picture, while encouraging the patients themselves to work on planting the seeds at the bottom. Yes, some will fall on stony ground. But if enough take route then it'll increase the receptivity (is that a word?) to any ideas that come down from above.

Thanks for reading. I'll go and leave you all in peace now.


Our members pass on stuff to their GPs, Nurses and any other medics whith whom they are in constant contact. They very rarely get a refusal.

Older GPs can somtimes resent this and I can understand it. Remember internet access, forums etc did not really exist amongst the general public until about 15 years ago.

Now it is different and they have come under greater pressure with so many changes (top down) and half of those changes are not in theirs, yours or my best interest. I sympathise with those at the sharp end as we are becoming a 'time poor nation.

If you put 'Orphan Illnesses' in your search engine - you will be astonished as there are over 800 at the last count.

An orphan disease is defined as a condition that affects fewer than 200,000 people nationwide. This includes diseases as familiar as cystic fibrosis, Lou Gehrig's disease, and Tourette's syndrome, and as unfamiliar as Hamburger disease, Job syndrome, and acromegaly, or "gigantism".


Having been involved for almost 10 years and with V-UK since it's resurrection (thanks to John and Susan), I can attest that the level of awareness, in all areas, has grown enormously but I agree, we still need a paradigm shift to make the system work.

One of the biggest challenges is in educating GPs about a suite of conditions that vary from the enigmatic to the bizarre. Due to the rarity of the vasculitides a great many GPs will never encounter a case in their career and when you consider these are just one suite in a huge subset of rare diseases, it's not hard to see why it's a huge problem. That said, ignorance is no excuse and V-UK have done much to spread the word through presentations and by attending conferences such as last week's Rheumatology conference where number of GPs left better informed than when they arrived.

Personally I have virtually no dealings with my GP as, despite me educating them, they can't offer anything practical to improve my patient treatment experience. Perhaps because I'm somewhat seasoned and also due to my rather atypical GPA, I now access all my care needs directly both at my local hospital and with my surgeon and vasculitis consultant at Addenbrookes.

My experience is that every additional link in the chain tends to drag the process into ever murkier water and so I strive to streamline things by communicating as directly as possible. I'm fortunate in have a local consultant who is very experienced but without ego and so when presented with a new challenge we work together to find the best person in the best place to help.

My way of dealing with this life-changing event has been to educate and arm myself with as much knowledge about it as possible and with this I've been able to help steer an informed course through some severe, stormy weather. It helps me to make better decisions when treatment options have been offered and it's also provided me with an opportunity to share my experiences and knowledge with others who are often as bewildered and shocked as I was when this damned dragon adopted me.

I appreciate I'm fortunate (sic) in having the resources and down right bloody mindedness to do what I can for myself but I do feel we need to enter into a collaborative partnership with our clinicians and to take our share of responsibility in so much as doing all we can to help them help us.

I'm sorry you've had reason to join us here but welcome aboard :-)


I live in Australia and my 37 year old daughter has had Systemic Vasculitis for nearly 9 years. We are fortunate in having a British GP who has dealt with thwe disease when practicing in Bristol. He is a real godsend. Not only does he understand the disease, but he is just so patient with my daughter. I hope you do well in yourself and with the clinicians with whom you may come into contact.

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