Private consultation for PBC.

[HummingBirds1944]

Can anyone recommend a private hepatologist. I have had no real information and the hospital keep cancelling appointments. My GP Saïd it is not his special area. Posts talk about numbers and blood tests but I have nothing to go on.

[butterflyEi]

Sorry to read of this problem in sorting treatment out. Might I suggest that you contact the PBC Foundation. They will be able to say where your nearest specialist centre is. Alternatively if you know the name of the hepatologist at the NHS hospital (you can usually find this out from your GP or from a search on the hospital web site) then look around for a BUPA or Spire hospital near you to find out when that hepatologist holds private clinics.

hope this helps.

[GrittyReads]

It doesn't have to be private. So long as your NHS GP Dr will support you, you can be referred to any leading PBC specialist ... anywhere in the country. I live in Devon, and having been diagnosed with PBC by the 'best' nearest hepatologist (when -actually- I only had one of the qualifying 'marker's for PBC... in that I only test +ve for AMAs, but don't have raised liver function tests or any of the other signs or symptoms of PBC, etc.)*.

It was a long process: it turned out only one of the GPs in my practice had treated patients, who had PBC, but she had followed different routes for them, and therefore knew exactly what to do for me. I was also guided by people on this site, who told me (in private posts) who the best people near me were, and who the best 'best' ones were, even if it was 100s of miles away. With my GP's blessing I saw a consultant 100+ miles away, and after several discussions and tests, he came down on my side categorically: saying that : I only had AMAs, did not have PBC, and would probably never develop it.

[NB: About 8% of the UK population naturally have AMAs and never develop PBC!]

At least once other test needs to be present to confirm that a patient has PBC: they need to have either abnormal liver function tests (lfts), and/or have damage typical of PBC via liver biopsy, scanning etc. The presence of AMA, alone, is not enough for a diagnosis of PBC.

I only have AMAs! I still have annual LFTS (liver functions tests) every year at my GP practice, just in case I develop PBC, but all is still clear. Sadly there are a lot of health workers - even some liver specialists - who do not know much about PBC, as it is comparatively rare.

PS, Sadly, for you, the consultant I saw is not currently working in the UK.

NB: I would also give the people at the 'PBC Foundation' a ring - see links to right, above - as they are really helpful and know their stuff. Hope all goes well.

[HummingBirds1944 in reply to GrittyReads]

Thank you...

[GrittyReads in reply to HummingBirds1944]

NB: I forgot to stress the point I was initially answering: all this was done on the NHS!! I didn't have to go private, or pay anything other than petrol to the Midlands and back. Once my GP had approached the consultant - and and he agreed to see me - we just had to fix a date and my GP sent all the info they had on me .. then my beloved chauffeured me there and back.

[HummingBirds1944 in reply to GrittyReads]

Where did you have your appointment are you allowed to say?

[GrittyReads in reply to HummingBirds1944]

I'm not sure. If you 'Private Message' me I can tell you that way I guess.