Queen Elizabeth Hospital Birmingham

[cavi]

Hi All Here I am again do any of you in our Area go to the QE if so which consultant do you see,I have been given the chance to go there waiting for my appointment to come.I understood my Consultant to say I will still see him at my local Hospital for Bloods and other tests but will also see another Consultant at the QE that is more specialized in PBC what a relief to be able to talk to someone at last who knows their stuff Thank the Lord X

[kimphoebe]

Yer I go there all the way from south wales and they seem to know more than my usual doc so you should be in good hands. I am under dr herchfield but I see a different doc every time I go

[cavi in reply to kimphoebe]

Hi Kimphoebe Thanks for your reply my that's a way to come how oftern do you have your appointments at the QE do you still go to your local Hospital as well for regular check ups or just QE ? Many Thanks.

[kimphoebe in reply to cavi]

I go to Birmingham every six months and still go to local hospital every couple of months. This time last year it was every two weeks but bloods have come down a lot since going to Birmingham.

[cavi in reply to kimphoebe]

Thanks for that info do you have yearly Ultra Scans if so do you have this done at QE my Consultant I see at my local Hospital said they might want me to have a Liver Biopsy but I don't fancy that I don't want to really know to be honest what stage im at and would never have one for him have they asked you to have one at the QE sorry for more questions.

[kimphoebe in reply to cavi]

Hi yes had one scan at Birmingham already had a biopsy at my local hospital two years ago to diagnose they did say may need another one later on depends on how things go. Got a endoscopy in two weeks at local hospital asked to be done by birmingham to look for varices not looking forward to that. I have asked what stage I'm at but don't think they like to commit to that.

[cavi in reply to kimphoebe]

Hi Kimphoebe Thanks for the reply I had my Gastroscopy a couple of weeks ago and was brave and had the throat spray only,my Consultant did it and got through it fine I do think its who does it for you I had all my trust in him and felt in very safe hands they did find early Grade 1 Varices and mild Portal Hypertensive so on medication for this I think this is why I have now been referred to the QE so I can be also seen by a Consultant who does specialize in PBC I do already have a good Liver Consultant but he is limited to what he knows about PBC so I am glad to know I shall be in the hands of the Experts.Take Care X

[Godfrey1]

Hi Cavi, I transferred to QE last month but have only been once so far. I saw Dr Tripathi that time. He told me there is a monthly PBC clinic on a Monday afternoon and I will be attending that each month. I am in Worcestershire so not too far. I have PBC and was originally diagnosed with AIH as well but now there is some doubt about that. So far I have been very impressed with QE, they know so much more and Dr explained that they have access to a number of treatments not always available at other hospitals so that is reassuring also. Please let me know if you are attending the clinic, coffee is on me

[cavi in reply to Godfrey1]

Hi Godfrey 1 Thanks for the reply i have got to wait for my appointment to come.Consultant I see at my local hospital says it wont be until after Christmas.When you say the Clinic is on a Monday afternoon is this just for PBC patients only,is it one to one or an open meeting for all other PBC patients I think I heard my Consultant say I might have chance to meet other people with PBC will you be having your bloods and tests we usually have yearly at the QE or at your local Hospital? Yes I will let you know I will be like a fish out of water the place seems so big never been before how do you get there by car? I do drive but don't know if I fancy driving when Ive got no clue were I am my Husband might come first time do you go alone ? sorry for all the questions will feel better once I have been Hope to hear from you soon Take Care .

[Godfrey1]

Hi Cavi, yes I got the impression the clinic is for PBC but I would imagine appointments are in private. Maybe it's just because everyone in the waiting area has the same condition. You really shouldn't go in your own if you can avoid it at all. The QE is well sign posted and not a problem to find but having someone with you will help after you have seen the Dr. You won't remember everything you're told and it's always best to have another pair of ears on the job. The staff are lovely and very helpful so please don't worry about not knowing the format. As for bloods, I was having weekly at my own GP's surgery but as the Dr at QE took me off the drugs which required weekly tests I no longer go. I gave bloods at QE when I was there but not sure what will happen from now on. It's a lot to get your head round and I've only been on this journey since May but there are a lot of nice people willing to share so don't feel alone or worried just shout out. I will let you know when my appointment comes through. I understand it should be in a couple of weeks. Good luck x

[Godfrey1]

Oops forgot to say, I had a biopsy at my local hospital before I transferred. I have read that liver units like QE don't really agree with biopsy's being done routinely and the Dr I saw at QE suggested that as well. They won't do it unless they need to. Hope that helps. X

[cavi in reply to Godfrey1]

Hi Godfrey1 Thank you so much for taking the time to explain things it really does help and do keep in touch and let me know how you get on I will also let you know when my appointment comes got to wait a while yet .Take Care X

[Lucylongstockings]

How did you manage to get referred there, my gastroenterologist is being very obstructive. She says they won't want to see me dos I'm only in the early stages of PBC , but she has no experience of it and shows here ignorance quite often .

[cavi in reply to Lucylongstockings]

Hi Lucylongstockungs

After having my last Gastroscopy I have now got Grade 1 Varices and Mild Hypertensive showing I went on Monday for my results and had a chat with my Consultant who said he would refer me to the QE I was a little shocked when he mentioned it but I will still see him at my local Hospital as well a lot on here come from miles to the QE I am lucky we live a few miles away from it and they have Consultants who know their stuff when it comes to PBC, so all in all I think when your Consultant at your local hospital thinks the time is right you then get referred.

[merrill16 in reply to Lucylongstockings]

Hi Lucylongstockungs, I had the same response from my G.P, and gastroenterologist when I ask about being referred to QMC, will speak to the PBC foundation about what to do next.

Take Care,

[GrittyReads]

My understanding is that you can be referred from anywhere, and that the QE team are interested in all levels - especially as PBC is such a weirdly variable condition in all its stages. I would talk to your GP, but ask the Foundation for advice first.

[GrittyReads]

PS I've heard Dr Hirschfield is lovely and brilliant.

[crundalite]

Hi Cavi

I too have been attending QEH Birmingham for the last 12 months. I live in Pembrokeshire ,S. Wales so the journey usually involves an overnight stay at the university accom which is reasonable and comfortable-a stones throw from the hospital. getting there by car is relatively simple from the motorway and clear directions areon the hospital web site. i was referred originally to Dr Holt's clinic as my local (very good) consultant was querying AIH overlap. I have seen 3 different consultants so far at 6 monthly intervals but generally got the impression that they were not quite sure why I was there. I am to see Dr Herchey next time -in April- whom,iam told ,is a specia;ist in PBC. Looks like you aare getting it right first time. Obviously QEH is a leader in the field of liver disease and it is good to have that behind you but at 68, albeit otherwise healthy apart from the PBC, my chances of a transplant if needed are likely to decrease. I will see Dr Herchey but am not sure what to do after that. I am now having an ultrasound there every 6 months but endoscopy (which I could not cope with without sedation) is done locally. I always know 6 months in advance when my next appt in QEH is. Locally I am never sure!

Good Luck. Let us know how it goes.

[Rosie2410]

Hello Cavi, I live in Birmingham and go to the queen Elizabeth hospital. I was diagnosed in 2012 with Pbc and didn't have a very good experience at my local hospital and demanded to be transferred to the QE as I've been told it's the best liver unit in the UK (I can't comment on any others as I don't know and haven't had any other opinions). I currently see dr G Hirschfield and I think he is very good. I did see professor Neuberger once and again I found him very helpful. Don't know if that info is any good for you? Good luck with it all. Rosie

[Pat_H]

I go to QEH by train. The station, University, is in very very easy walking distance of old QEH and new QEH, which are next door to one another, and both well signposted from the station.

Pat_H

[cavi]

Hi Pat_H Thank you for your reply how often do you have to go to the QE and what Consultant do you see most on here see a different one each time they go,I was hoping to see the same one when ever I have to go I always see the same Consultant at my Local Hospital.

[Brummi]

Hi, I am lucky enough to live in Birmingham about 15 mins from the QE. I started going there in January 2011 and had a TX in June 2013. I still go there for bloods and check ups. I think I have seen all the consultants there and know them all.

[Hambly1]

I've been attending QEH for 6 years and had my transplant there too. All the staff there are lovely. There is a huge multi storey car park but it can be quite busy, give yourself time to park and get to the clinic. I used to see Professor Neuberger but the last 2 years I've seen Professor Gideon Hirschfield who is also an expert in PBC. You have your bloods taken at each visit after seeing the doctor. There are now PBC nurses that you can also talk to. I still see my gastroenterologist at my local hospital, he is very knowledgeable about PBC. Do take the opportunity to go to QEH, you won't regret it.

[cavi]

Hi Hambly 1 Thank you for your reply and hope you are doing well i have been going to the Q E for quite a long time now but dont see any of the PBC Consultants you have mentioned i see Dr Andrew Holt have you got to see him

wondering if im seeing the Wrong man the two you have mentioned seem to be in the PBC field and he dosnt might have to mention this when i go end of Feb hope im getting all the treatment and care i should be with this man or do you think the Liver Dept treats all Liver complaints