Vasculitis route map

[Kitkat101]

Hi I am the mother of a young man 25 who has had one testicle removed through vasculitis under the John Radcliffe Oxford. When he was first presented they told him he had testicular cancer. Post op diagnosed as vasculitis . Today he has pain in his remaining testi and gas gone to a&e in london where he works. I am very worried that they will make a misjudgement through not understanding. Dies any one know a specialist in london or a London hospital with vasculitis interest? Thanks.

[PMRpro]

In case this isn't seen by the "team" for a while - try the Helpline or the email contacts

vasculitis.org.uk/helpline

Good luck - he must be very scared.

[Kitkat101 in reply to PMRpro]

Can I be emailed a route map pleae or any emailed docs on this? Thanks

[PMRpro in reply to Kitkat101]

Sorry - I can't help you myself, I gave you the link to be able to contact them directly - if you click on it you will find email addresses there as well as the number for the Helpline which I assume will get you an immediate response.

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Hi Kitkat,

The Hammersmith in London has the biggest multidisciplinary Vasculitis Clinic, the lead clinician is Prof Charles Pusey.

Was you son treated for Vasculitis after his orchidectomy? Is he still under the Vasculitis team at Oxford.

The big rule out immediately needs to be testicular torsion, anything else can wait to be dealt with. I would encourage A&E to get in touch with his Vasculitis Consultant. The Route map is just a general overview of Vasculitis and wouldn't be much use in this situation. I am on the helpline today and am happy to be contacted for more specific advice. I will post Prof Pusey's details.

[Hidden]

imperial.ac.uk/people/c.pusey

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The link to the route map

vasculitis.org.uk/about/rou...

[Hidden]

Prof Alan Salama at the Royal Free is very experienced as well

royalfree.nhs.uk/services/s...

[Suzym2u Moderator Vasculitis UK]

Think you have just spoken to my John on the phone Kitkat101

[Janey513]

Do you know which trust he has gone to?

[Kitkat101 in reply to Janey513]

Yes he went to UCL London NHS foundation trust. They were to unsure on what to do without access to his Oxford records. ie blood base line for inflammation. They were not happy giving steroids or anti infamatories, they didnt ring oxford and they didnt have a specialist in vasculitis.They told him on a friday night to ring Oxford for an urgent appointment Monday???? Of course it all went to answer machine. I have told him if he worsens to go to the Royal Free and in meantime I am on my way home from France and the plan is to drive to oxford a & e on Monday when I am back. I can't believe in this day and age that hospitals can't work in integrated ways. If they share patient notes by all being on the same system and if specialists share support and knowledge it would make for a more risk averse system. Thanks Jane

[Janey513 in reply to Kitkat101]

I work at UCLH and have contacts within the Urology team so if he has problems then please give me a shout. The Royal Free are great but like everywhere it is likely to be general medicine cover rather than a team that know vasculitis.

I put all my letters onto my phone then I can email them to the A&E team if it's a hospital that don't know me so maybe that will help for the future. So frustrating I know.

Hope he is ok x

[PMRpro in reply to Kitkat101]

Countless millions have already been wasted on an NHS computer system that was supposed to join it all up. Needless to say it didn't work - and then came the outrage that ANYBODY might be able to see your records. Which is part of the reason different hospitals can't access your notes.

One way of dealing with it is to ask for copies of your results and keep your own file together with your copies of all letters. It will take more effort in the UK than it does for me in northern Italy where we are positively encouraged to get our own copies of anything but it can be done.

[AndrewT]

Yes do contact Dr David Jane, his team is the best that you will find-in the UK anyway! Please let us know how you get on.

Kindest wishes

AndrewT

[phil3]

Sorry about what you're going through but what type of Vasculitis do you have. I had Cerebral Vasculitis of the brain and then a few years later I had Testical Cancer. That was removed and my vasculitis is now all OK