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Vasculitis UK
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Care stopped by consultant without reason

Anyone ever been removed by a consultant without any notification? I've been chasing them for weeks and been ignored. Turns out they told my GP 3 months ago to send me to another hospital even though they stopped my DMARD whilst my hearing loss was investigated after this. GP hasn't sent me anywhere to date and the hospital will not confirm why I've been removed so I've had to log a complaint to find out why. I'm in shock, we got on well. I'm currently a sitting duck without treatment and hearing loss, let alone other symptoms returning and now I have no consultant.

6 Replies

What type of vasculitis do you have and where were you being treated?


Eye cons said I have Wegeners, he treats my eyes with immunosuppressants though I'm not convinced its that one. Someone on here suggested RP which seemed more relevant. Rheumatologist was treating me with DMARDS prior to that diagnosis anyway though they didn't help all problems now I'm currently on nothing as the rheum removed me whilst ENT were investigating. I've checked GMC & it states they should keep me updated, provide a reason & transfer me directly to someone. None of that's happened, I'm completely in the dark with no rheum. Have you experienced this?


No I've not but I see from an earlier post of your that you have been given good advice both regarding medication and how to access consultants with experience of vasculitis. My best advice would be to follow those up or contact the vasculitis uk helpline (the number is on your previous posting) if you are not sure how to go about this. You certainly need to contact your go to find out what is happening with your treatment.


Yes I have. I was querying removing me etc without any reason, not sure if anyone has experience of that. I'm awaiting a call back from GP as I don't want to go where they're trying to move me!


If you've been diagnosed with GPA (formerly known as Wegener's) and only been given DMARDS then you haven't been receiving treatment in accordance with medical guidelines and may well be better off with a consultant who has experience in vasculitis. Whilst you're removal without reason is unacceptable, it's most urgent that you ask for a referral to a hospital which can meet your needs. Please call the Vasculitis UK helpline on 0300 365 0075 where someone can offer advice as to where your nearest vasculitis specialist can be found.


In the USA, what happened to you would be considered "abandonment" if you suffered further damage from being dropped. You are entitled to an explanation.


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