PBC

Hi I was supposed to go hospital today after being diagnosed with PBC last year that was cancelled til may than got another letter now it's July consultant really busy was the answer I was given. So I called the hospital and ask if they could fax my blood results to my doctor which they did anyway I got a call from my doctors yesterday saying the doctor needs to see me about my results. I got an appointment today so off I went the doctor didn't really no much about PBC and asked if I was a binge drinker When he was looking at my results I was so mad and told him this illness is nothing to do with drink he was just looking at me I told him me hips legs and other places are really aching he said when you go to your pain management tell them I said ok. Still non the wiser and still not getting much help I'm feeling alone and angry that the doctor wanted to see me but didn't know anything about it and as for my consultant I can't believe I'm on 3 cancelled appointments already. 

14 Replies

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  • How awful. Firstly I would contact your Drs and get another appointment with someone else.

    I asked liver north for leaflets etc that I took to my doctors . They have a DVD which is good for us to watch.

    I don't know what area you are in but I'd also kick up a fuss at the hospital. I think you need to get in touch with Rob on here and he will help you plus give you loads of info.

    Sorry you are suffering line this.

    I spoke to Rob and with his info I went to my Drs and took control of our meetings.

    before I go to see the GP I make sure I have copies of everything but most of all blood results. I went armed with these to my meeting with consultant and can ask questions about them.

    Hope you get sorted. Take care.xx

  • Thanks for the reply I have been in touch with pals at the hospital they are going to sort it out for me so they said I will and wait and see X 

  • Who is Rob?

  • Rob is a member of the PBC foundation and very good at answering questions and giving advice. I will try and find contract details for you.

    Email here and ask them to pass it onto Rob

    Info@pbcfoundation.org.uk

    Also leave him a message and your phone number on here and he will get back to you.

    07894238413...Robs number

  • Thanks a million.

  • I was diagnosed last November and all at sea Rob was great and guided me and gave me confidence to ask Drs questions and be armed with information to query them. I even got courage to contact people in my area and I am still in contact with them.

  • Dese

    I find your comments so terrible how could your GP say something like that. IfI was you I would see another GP in your practise and send a letter of complaint to the practise manager. As far as seeing a consultant I really don't know what to advice...just wait which really isn't helping you. Perhaps send some leaflets about PBC to your GP and the hospital.

    Keep smiling and chin up we are all with you.

  • Hi Dese

    It would seem that the message is not getting through to the medical profession when you get a GP reaction like that, how awful for you. 

    From what I read below you have already taken action on the hospital front but I would certainly try to see a doctor who has a greater understanding of PBC.  The PBC Foundation has some really good professional and lay leaflets which you could get before another meeting with the doctor.

    Perhaps the surgery will give you a print out of your blood results which would give you a chance to be more in control of your circumstances.

    best wishes

  • Hi Dese, firstly you have got past the hardest part and got a diagnosis. 

    I'm still waiting full confirmation of yes or no Pbc, I have tick boxes and positive ama but GPs and consultant still dithering on confirmation.

    Anyway if your in uk or London, like me my appointments have been moved around and at my first hepatology appt, the waiting room was packed not one seat unused and more standing so I sympathise with you but the clinics are over booked many are 3 people to one slot! 

    Not great when we are waiting on our own illnesses to be confirmed or diagnosed, but are you on the medication, what were you told at your diagnosis appointment, get the leaflets from the Pbc foundation one for you and some for your gp and keep one gp one to keep so you can show whichever gp you see next.

    I can only imagine how you feel ( as I'm still waiting for a diagnosis of whatever I have if not Pbc)  but all the best to you and keep positive

  • Dese.   I am so sorry for you. Know the feeling. We are on our own

  • Look for another doctor. It was my gp who diagnosed me. He knows me inside out. I saw a registrar eventually in the hopsital who Googled pbc. Shame on your gp for being so ignorant and not educating himself. 

  • which hospital are you under?

    three cancelled appointments is unacceptable. I had this problem when I was first diagnosed, it was a dreadful time. In the end, I went through hospital admin, and put in an official complaint.

    My point was that it is often the booking centre who are told a clinic is cancelled, they don't know you and are not qualified to make medical judgements on when you should be seen.. SO you could be deteriorating and no one know, especially in the absence of a GP who has proven he knows nothing about PBC.  You have a right to be seen in a timely manner and it was the consultant himself who would have given you the initial appointment so you should be seen. Hospitals don't like bad press and complaints are logged and look bad on statistics so admin work hard to alleviate official complaints that come in.  I would definitely go down this route. In the past ten years since I complained I have never had further problems, and have ben seen every six weeks for the past 8 yrs. Even now under a transplant unit, I am still seen by my local consultant who keeps an eye on me between appointments.

  • Hi I live in Essex I have now got the hospital looking into it and seeing if they can sort out an appointment for me. I've only seen my consultant once when I was told I have PBC all he told me was he could give me a liver biopsy but that could kill you was he's words gave me a letter to take to my doctors to start on medication and to come back in 6 months Thats all he said to me I never new anything about this illness I had to google and with help from the liver foundation I know a more. That was nearly a year ago. 

  • Gosh, I can't believe its so different around the country! I was diagnosed 13 years ago, my GP did some blood tests (for something else!) and the LFT results came back raised so he referred me to the Liver Clinic at the Queen Elizabeth Hospital in Birmingham. I had 3 appointments in quite quick succession until they confirmed PBC. I was seen there every 12 months until a couple of years ago when they decided I should take Urso, now I go every 6 months. Have an Ultrasound once a year and a blood test every time I go. I never have to see my GP about my PBC.

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