Help.

[valwood]

Is anybody else having trouble getting an appointment with a Rheumatologist who has knowledge of GPA. I’ve been fighting to get an appointment, 5 months late and it looks like I’m seeing a registrar but I was told it’s OK he can read up on my condition. As patients do they consider us as uneducated. I somehow feel I’m being fobbed off.

[Main1234]

That does not sound good enough, maybe the helpline can help. We have been lucky no problems (fingers always crossed) seeing consultant or receiving timely treatment.

[zoe69 Moderator Volunteer Vasculitis UK]

Is this your first appointment or is it a follow up?In my 6,5 years journey I saw my team's registrars a few times over the years. Two were quite knowledgeable and would go and speak with the consultant if needed. The other one was an arrogant prick who thought he could fob me off with generalisations. Awful experience.

If it is your first time, did you get a referral to the specific doctor or the team? If your referral has the doctors name I should insist on seeing them.

Where are you seen if you don't mind me asking?

[valwood in reply to zoe69]

I’ve been going to Ipswich hospital for 8.5 years, I was always seen by Professor Watts but he has since retired. The Dr did say he had spoken to Professor Watts, but the reception did say they had no one with the knowledge of GPA. Oh well, I have a choice, which luckily is my decision and nobody else’s.

[Mooka]

I was told by my GP that I have a right to request an appointment with a consultant. I did that and still got a registrar. Some registrars are great but we have all had experience of wasted appointments. Not sure what it’s like where you go but at addenbrookes you can request to see a specific doctor when you get to clinic. Of course they have to be there that day and may mean a longer wait. I think the only thing you can do is request the registrar goes and asks a consultant if he can’t answer your questions. Good luck.

[valwood in reply to Mooka]

Nobody in the hospital with the knowledge, so nobody to ask.

[AmyS1]

Call the vasculitis team to check that you are being seen at a vasculitis centre. This is a very rare disease unless you are being seen at a specialist centre even a consultant will not have the necessary knowledge. Top tip when you arrive at clinic be really pleasant!!! Ask the nurse if it was possible for you to see the consultant and your GP is querying a rare and complex condition. If you see the registra be very polite. Make sure.you know who you are seeing!! If they don't tell you who they are be ready with. GOODMORNING I'm ( whatever your name) I'm sorry I didn't catch your name .... Then write is down. If you feel they don't know what they are doing say my Gp is querying a very rare condition is it possible for you to discuss it with the consultant?? Try as hard as possible to be very pleasant. If they start to dismiss you, you can ask have they ever seen a case of vasculitis etc.

[valwood in reply to AmyS1]

That made me laugh🤣. My GP retired before my specialist and none of the other GPS seem interested. I feel as though I’m going around in never ending circles. It’s made more difficult by being deaf/blind.

[AmyS1]

Is the deaf/ blind part due to vasculitis???

[valwood in reply to AmyS1]

Yes