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PBC Foundation
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I need some advice my gastroenterology consultant has left the hospital, aparantly I can't be put on other consultants list as there full, so the hospital say my gp needs to refer me again even tho pbc is diagnosed

What gets me I just had a letter saying appointment cancelled if I hadn't rang I would not know his left, I feel sorry for the people waiting for appointment

Any one have any suggestions


8 Replies

Wow! Pinkcrush that is a blow. I hope you are already on URSO and receiving the treatment you need. I see you are in the UK so your GP can order blood tests for you if you are due to have them done which I guess you are as you have had a letter. It would seem that you need to get your GP to send a letter quite urgently but in the meantime see what the GP can do for you. For a period of 5 years I was only under the care of my GP so I know that they are able to manage us at a lower level which can act as a stop gap for you. Obviously you will need to be under the care of a specialist for tests such as endoscopy, dexascan or fibroscan. Hope this in some way helps you move forward. If not I suspect a telephone call to the PBC Foundation may help you.

best wishes, let us know how you get on.

1 like

I echo butterflyEi that's awful all the gastro's would be part of the same clinic at the hospital so why the need for another referral very odd not heard of that before and to say there full. Maybe they think your GP can refer you to another hospital. I would try and speak with the PBC foundation and get some good advice from them.


It's good to know gp can do blood tests, but this was my 1st appointment since i was put on the usro, I also have a prescription for hydroxychloroquine, from my rheumatology consultant that I can't take unless gastroenterology say I can

I feel let down by the system for not keeping me informed, or any of his other patients

Ringing the gp today to see what they can do


Little update

The Pals service at Queens hospital have looked into it, basically there working through his list of people trying to distribute them, I have to wait 2wks and I should get a letter telling me what's going on and when I should be seen


Hi I’m new to this site ,is it the queens hospital at Burton on Trent that you are under ?


No it's queens hospital in romford


Ok thank you for getting back to me .x


Does your hospital have a pct like a voluntary group to make complaints via? It really isn't your fault because left & you should not be made to wait any longer than you have been. There are guidelines that I'm sure they should be following. X


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