Vasculiitis specialist consultant

[Heart85]

Hi,

Sadly I find myself in the situation where my father has been diagnosed with lung cancer however also very quickly developed vasculitis which has certainly impacted on him much more than the cancer. We have spoken to the consultant for the ward that he is currently on who specialises in respiratory and have asked about the type of vasculiitis treatment options etc we were given no diagnosis and my father was started on three days of IV prednisalone followed by a further 5 days of tablets which have now been stopped and surprise surprise his symptoms have started to get worse again.

I feel that he would benefit from being reciewed by a consultant who specialises in this field, he is currently In a hospital in Kent but as on high levels of oxygen unable to leave the ward. Does anyone know of any consultants local to Kent that we may be able to contact?

With many thanks

[PMRpro]

You may have problems with your current hospital - they can be very proprietary of their patients once they have them "in house". It sounds as if they think vasculitis is just a rash that goes away with pred...

However - when it comes to vasculitis you would be well served by contacting Prof Mason and colleagues at Imperial/The Hammersmith and he may be able to suggest someone more local. Good vasculitis people tend to be in large centres and I'm afraid Kent doesn't recommend itself for outstanding rheumatologists in my experience. I'd love to be proven wrong...

[Heart85 in reply to PMRpro]

Thank you I will certainly contact him. That’s exactly it they don’t seem to be equipped to deal with this at all and we have been watching him go downhill before our very eyes affecting his kidneys and liver too.

[PMRpro in reply to Heart85]

If it is liver and kidneys too then it could well be small vessel vasculitis. That is a colleague of Mason's - but I'm struggling on the name off the top of my head.

This may sound unfeeling - but what is the prognosis for the lung cancer?

[roobub]

depending on which part of Kent you are dr. Mike Batley at Maidstone and Tunbridge wells hospital has a special interest in vasculitis although i have no personal experience of him ........her is a link to his page on their website....

tps://mtw.nhs.uk/consultant/dr-mi...

[roobub]

another suggestion if you are further down in kent

east-kent-rheumatology.co.u...

she is lead rheumatology consultant for east kent hospitals and again has a special interest in vasculitis...........good luck

[PaddyX123 in reply to roobub]

I have vasculitis, live in Kent and she is my specialist - she is very good. She works out of QEQM and seeing patients there and the Buckland at Dover.

[PaddyX123]

Hello, I have vasculitis and have found this charity to be very helpful. vasculitis.org.uk/helpline - if you ring and ask to speak to John Mills you will find him very helpful

[AmyS1]

I live in kent go to Guys or Addenbrookes. Speak to someone on the vasculitis helpline asap.

[Hidden]

0300 365 0075 Is the vasculitis uk helpline number. They are very good at helping you sort out how to go about things and will also help you find the nearest vasculitis specialist. Good luck.

[AmyS1]

A single consultant at a local hospital does not constitute a specialist in vasculitis. If you want good care who h could make a huge difference go to a national centre. E.g. Guys or Addenbrookes

[roobub in reply to AmyS1]

not wishing to start an online argument but heart85 stated her father is unable to leave the ward due to being on high levels of oxygen and it is unlikely someone from addenbrooke or london would travel to kent to see him.

maybe the next best thing until he is fit enough to travel to a specialist centre would be a local doctor who has a special interest in vasculitis.

[roobub]

hi heart85

i have just re-read your post and you state your father has recently been diagnosed with lung cancer and vasculitis i am not trying to play doctors but are the doctors sure it is cancer and not vasculitis as your dad would not be the first to be wrongly diagnosed as you will see if you type wegeners granulomatosis mistaken for lung cancer into google

[Sarahjh2004]

Hi

Maybe your dad's consultant could do a conference call with the respiratory and vasculitis specialist from another center. Of you could find one in the same trust it might be easier. I know Hammersmith and Brighton have very knowledgeable teams. My consultant has liaised with other professionals in my case.

It's worth a try if they are unwilling to move your dad or have no specialist, I hope you get it sorted x

[Heart85]

Thank you all of you for your support, I contacted vasculiitis uk yesterday and spoke to John who was extremely helpful, I was given the names of several consultants, we have contacted the professor at addenbrokes who is happy to support us. Yes sadly my dad is too unwell to leave the ward andevery symptom he has screams Wegeners. We will keep fighting for him x

[AmyS1]

Hello I wondered how your Dad was and if your kent hospital was working with Addenbrookes. I do hope that the situation has improved.