Out on my own

Hi everyone sorry not been on in a while but so much has happened over the last few months. I have just come to realise that I am out on my own with this. I have AIH/PBC overlap and it is now over a year since I saw a consultant. My consultant left the NHS to go back to Australia and it seems that either they have not found a replacement yet, or they have just completely forgotten about me. My Gp don't really know how to treat me for even the smallest thing and am often left to my own divices if I am unwell with anything.

I don't know what to do. I could try once againg to ring gastro and ask if there is anyone I can see, bearing in mind my GP has already tried to get me an appointment (pinderfields) is the hospital I have been going to. I do know there is a liver unit in Leeds and am now thinking that this may be a better option for me.

I am still on 5mg prednisolone because I tried to drop it lower and had some became unwell, my LFTs are now in mid range and should be lower range because of the AIH, I also am taking mercaptopurine because they thought I was sensitive to azathioprine because I had a virus and they though it was the medication (caught virus from friend). Mercaptopurine is a chemotherapy drug so you can imagine the affect this is having on my body (2 years now).

When I tried to lower the pred I has symptoms I did not recognise to be from AIH or PBC at first then the pain kicked in so went back on to 5 mg again. I am losing body hair and the hair on my hed seems to be getting thinner. I am just really fed up and want to be back to normal or rather as normal as I could be with these diseases.

I just feel I am on my own with it and it really gets me dowm some days, the fatigue and joint pain are the worst followed by gastric upsets, and the odd itchy night.

Thanks

xxalley

8 Replies

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  • Hi Conniefused,

    Good to have you back, and I'm so sorry you are still not being seen by a consultant.

    I would talk to the PBC Foundation people direct (link to site at the top of this page, and phone numbers will be on their site) and ask for their advice. I am sure that, legally, something has to be done.

    I also believe that your GPs can send you to any consultant in the country. I could be wrong - or things may have changed more recently - but a friend near here (with Lupus) demanded to see the top man, in London, and I'm certain they were not going private. Of course private is another option, but it shouldn't have to come to that.

    If all else fails I would contact your MP, with copies to the Health Minister - I'd also drop a line to Sarah Wollaston MP, Chair of the Health Committee - she's good.

    Keep us posted, and try to take care of yourself meanwhile.

  • Thank you GrittyReads for your reply. I will get on this as soon as I get back from Job centre...yeah my hubby is now unemployed so we both have to sign on I have never had to do this in my life before and they say for us to get any money we both have to be available for full time work...I am going to see the dea adviser in September. My work coach is reasonable though. I have explained about my illness and the fact I am immunosupressed. I can manage my house work let alone a job lol.

    I will keep you informed about situation but I am first going to ring pinderfields and see if they have a consultant for me yet and if not then everything you have told me will be followed through.

    xx thank you

  • So sorry to hear that you are not getting the medical support you need and deserve. I agree with GrittyReads that it would be good idea to contact the PBC Foundation and ask for their help - that's what they are there for and they will have all the contacts.

    Also, remember the NHS does have an obligation to treat you, it is absolutely not right that they can just say there is no specialist available. So its also a good idea to contact your MP is you still can't get an appointment. If you want to read up more about your rights have a look at this website

    nhs.uk/choiceintheNHS/Right... - you might want to send that link to your GP and demand they find a Consultant for you.

    I do hope you get the proper support soon and that you start feeling a bit better soon too.

    Take care

  • Thank you sheepjane for your reply. There are consultants at Pinderfields hospital but none it seems that specialise in my condition. I plan to ring again this afternoon to see if anything is available, if not I will ask to be referred to another consultant in another hospital.

    My Gp are doing what they can but they have never had anyone on their books before with my condition.

    Things will sort out

    Thank you xx

  • I have not seen a specialist for my PBC for over a year. My appointment was for January 14 but in October 13 NHS cancelled. My GP has emailed them twice to arrange a follow up appointment with no success. I live in Scotland. I know there will be patients worse than myself as apart from fatigue am doing ok. But I feel forgotten.

  • I get it believe me stevie, my last appointment was August 2013 and yes I feel forgotton as well and there is only so much our gp can do to help us. I have severe fatigue and today I have had the pain all day. I hope they can sort me soon after all my consultant went back to Australia in December you would think they would have found a replacement by now.

    I am seriously considering going to the freeman in Newcastle, Yes it is a long way from Yorkshire, but they do have a fantastic liver unit.

    Take care x

  • I hope the work it out soon. You need a doctor to help you through this PBC. I don't blame you for feeling a little lost! Wish you luck!

    Ruth

  • Hi Conniefused,

    I am a patient at sjuh at Leeds and have been seen by a liver specialist there for the past 8 years.I would just ask your GP to refer you there.You have a choice of where you want to be treated . There is always a big waiting list though so I would do it as soon as possible.

    fudge13 xxx

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