Ideally John I am writing this to you as you replied to my earlier post. If you have time to reply I would be very grateful. I didn't get off to a good start with my sons rheumatologist due to him not understanding what I was saying. I have now heard He has now apparently "walked out". To cut a long story short. I would like my son to be referred to a consultant who knows about vasculitis (GPA) as you had implied before I know this is imperative to his treatment and our local hospital doesn't know enough about vasculitis... Do I just need to say that I would like him to be referred to a specialist and then they will do it? Do you have any suggestions on what is the best way to approach this. We have an appt on 2nd May. I can't consult the dr as he didn't believe the ent consultant when he said vasculitis was the cause, so wouldn't refer us to a rheumatologist in the first place. Any suggestions on the best way to approach the appt on the 2nd would be very much appreciated.
Help with consultant referral: Ideally John I... - Vasculitis UK
Help with consultant referral
Oops sorry was meant for Keyes. Sorry for the confusion.
Hi,
I replied to your earlier post. Is the Dr you are referring to your son's GP?
You can certainly ask the GP for a referral to the Vasculitis clinic at the Hammersmith headed by Prof Charles Pusey. If they refuse ask for your request to be documented in your son's notes and the reason for the refusal in writing. As your son is seeing ENT at Charing Cross Hospital it may be that they can refer him to the Vasculitis clinic.
Good luck, you are welcome to phone or e mail the VUK helpline for advice.
Hello thank you. Yes I realised my mistake. Yes I was referring to my sons GP. Ok thank you so much for your reply that is really helpful.
These are Prof Pusey's details
imperial.nhs.uk/consultant-...
Was it the ENT that prescribed the Methotrexate and prednisolone? If your son's Rheumy has walked out then he will need another Consuotant to oversee his care as ENT don't usually prescribe immunosupressants and manage complex medical disease.
ENT diagnose GPA but then referred us to a rheumatologist for drugs. ENT, rheumatologists and other consultants held a meeting on the best way forward and prescribed 10 mg methotrexate raised to 15 after 6 weeks and 30 mg prednisolone reduced fortnightly and now on 20mg going forward. Our rheumatologist consultant who we only saw twice has left.we have an appt to see him on the 2/5 & this hasn't been cancelled so I assume it's still going ahead with someone else. If we receive a cancellation letter then I will go straight to GP. I feel the rheumatologist side of things is too hit and miss and would therefore like the referral. ENT locally were great but said it has become too specialist and now we have an appointment for investigation under anaesthetic in middle of may at Charing Cross.
I think given the situation the least your GP can do is refer you so that all your son's care is with the one team.
I would definitely discuss it with ENT at Charing Cross as the odds are they work closely with Prof Pusey and his team.
Personally I would give me facts and let him talk to your son then you can see how he responds to him. Just give him the facts and see how what he has to say xx
Vasculiitis specialist consultant 
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