finding a PBC consultant

[Lilydoll10]

Having read Prof Jones’ book and listened to some of the webinars on YouTube I think I need to see someone who really understands this disease at one of the 6 centres, however I don’t know where these are or how I go about doing this. I’m currently waiting to be seen by local gastroenterologist but could be 6-12 months wait. I have just started URSO, haven’t had a fibroscan yet. Can a GP refer me to one of these centres rather than local hospital?

[Flid]

you haven’t said why you want to go to one of the main centers for PBC but I can understand wanting to see people who are really familiar with this condition as it’s not that common.

I am guessing if you have just started Urso you are recently diagnosed? You should get blood tests every couple of months initially to see if the Urso is working and your numbers are dropping. In the meantime, there is no harm pushing your GP to get baseline tests, a fibroscan and a dexa scan to establish bone density. They are not really urgent but a baseline is useful to monitor any progression over the coming years. I ended up doing these quite quickly when diagnosed last year, but went private for my piece of mind and because I like to feel like I am being as proactive as I can or I tend to get anxious!

As for the centres, if you live close to one then you may be able to talk your GP into going to a specific specialist. I was initially given an appointment with a gastroenterologist whose interests were way off PBC and asked my GP to put me forward to someone I researched online who already had a large number of PBC patients and whose main focus was hepatology rather than the more intestinal side of things.

With the NHS you have to realLy chase what you want, and hope your GP supports you. No harm in trying.

[Lilydoll10 in reply to Flid]

Thanks I am having a dexascan this week and have had bloods done in July and September. I paid to see a specialist near me to have the diagnosis confirmed but he has now retired and didn’t help me with supplying an nhs doctors details so I have been back at GP. I’m not sure where to look for a reliable list of specialists in my area to suggest to my GP. This is why I wondered where these centres of excellence are and whether one can be referred to them via GP. I live in Manchester UK.

[Flid in reply to Lilydoll10]

You could ask on here for recommendations for consultants near Manchester. There are bound to be members who are in your area. Alternatively you could ask the PBC foundation what facilities are near you.

I searched on here for conversations around specialists in my area, looked up blogs discussing searches/questions others had asked and looked on PBC foundation website/forum for discussions near me. I called a couple of clinics asking about pbc care, sometimes the receptionist was familiar with it, most times not. That suggested some clinics had multiple patients and others, it was more unusual. It took me a couple of weeks before I chose who to go with, then asked my GP for a specific recommendation.

[DonnaBoll Administrator in reply to Lilydoll10]

Since I live in the US, I would suggest reaching out to The PBC Foundation for some suggestions and ways to get to the right person. You are absolutely right about being seen by someone who really knows about this disease. According to the Standard of Care you should have lab work done every 3-6 months. [phone] or PBC foundation.org.uk They can help you.....

[butterflyEi]

The PBC Foundation will be able to give you information. Go to their website for their telephone number.

[Kateb17]

Hi, I saw a hepatologist in Liverpool who moved to Manchester, much to my disappointment. I found him to be fantastic, very informed in PBC, involved in studies as I recall and, most of all, caring. His name was Dr Patanwala. Not sure if he’s still at Manchester but worth checking out. Hope this helps and good luck going forward.

[Lilydoll10]

many thanks I’ve just looked him up and he’s working at the hospital trust I’ve been referred to so fingers crossed for the future

[Kateb17 in reply to Lilydoll10]

Best of luck!!

[Skypony]

This sound good Lilydoll. Being informed and advocating for yourself and is key, because we’re playing a long game. You haven’t said how you’re feeling about (presumably) your diagnosis, please tell us if you feel you want to.

Best wishes