I have now been waiting 9 months to get another appointment with a Liver specialist (NHS). My usual one, who was very nice, left the hospital I attend in December 2013. My last appointment was August 2013. It was arranged as shared care between hospital and Gp. If I am unwell my Gp has no idea how to treat me and when I had a virus recently, she asked if I had been given a list of common medications she could prescribe for me. I have overlap AIH/PBC, I also have hashimotos.
I suffer with joint pain (arthritis) and have been in pain with my heels for months now. We resorted to an old fashioned steroid injection (not gold) because I could not walk. It is helping a bit but there is nothing I can take really for pain. Are there any medications we can have for arthritis?
My Gp has written to the NHS trust I am with to find out if there is another specialist who deals with autoimmune liver disease and so far no reply. I do know there is a shortage of staff there in gastro from a friend who works on outpatients. I am considering asking my Gp to refer me to Leeds. I know it would be a long day for me but I need to see someone because I keep getting bad days like today, no energy, can't walk far or manage stairs and my house needs cleaning. I have no help from anywhere financially or physically and am getting so fed up with everything. I feel they have been very latent with my care recently. My Gp is really supportive but she is always concerned that if I were very unwell she could not help me.
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Alley27
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If you live in the UK did you not receive another appt before you left the one you last attended? I am asking as when I attended the hospital for my first hepatology appt back in Nov 2010 I was informed after I had blood test (one for antibodies - AMA and ANA) that I would receive a further appt.
The consultant I saw wrote to the GP informing him to give me the diagnose of PBC and the urso dosage.
I then received another appt through for 2 months later to go back to the hospital.
I was then informed I would be going to the hospital on regular intervals due to PBC. In Oct 2011 I asked for a discharge as I had attended almost 12mths and I felt I was just taking what seemed a GP appt (weigh-in, bloods and a brief chat with doctor). The consultant though not happy at first did agree and said that in future if it was deemed necessary I would be referred back to the hospital. He wrote to my GP informed him/her.
The GP if you have any diagnosed condition that will need the remainder of life attention can refer a patient back if they have been discharged to their care if there is anything that is becoming worrying. It is the norm for a patient with PBC to see a hospital consultant at intervals. For myself at present (been diagnosed over 3yrs now), I am quite fine just seeing my GP at intervals and that in itself can be a stressful event as things never go right it seems (recently had to get in touch with regards to urso, that sorted, what next!).
Please remmber it is actually your right to ask to see another doctor and especially something like PBC, a consultant in that field.
Its quite common practice with my consultant these days to be told another appointment will be sent in the post. Over the last year or so I have had to re contact the consultants secretary to make an actual appointment when things have turned bad, as the promised appointments by post seem to get forgotten about by the medical team. Maybe this is more widespread a practice than just by my consultant.
I got my second appt following my first through the post as at the time it wasn't known what the antibodies blood test would throw up. I was informed that if I had not heard anything within so many weeks of the GP informing me I had PBC after the consultant wrote to him to contact him or the hospital to enquire.
My 3rd appt at the hospital was done there and then on a permanent appointment card (I remember being horrified when I saw all the appt lines on it and realised that it was for keeps).
it's 12 months last november since i saw my consultant thats 16 months. I asked my gp should i ring them and complain, and he just said no don't bother I will get your bloods done and then we are covered. I now do not think they give two hoots about us. I was that tired last night I could barely stand up and i had done nothing all day because i was exhausted and hurting from head to toe, i also had a pain in my liver area.
Hi Guys and thank you for your replies. I was seeing a consultant every 12 weeks until she decided to leave.....I now have no idea how much longer it will be until another is available due to staffing issued at my hospital (pinderfields) also I am worried about whom I might get and if they will be knowledgeable regarding a multi immune patient. I was diagnosed in Jan 2012 with Hashimotos disease and in March 2012 I was rushed into Pinderfields very unwell and was diagnosed with AIH/PBC overlap as well...not a coincidence. That's another story.
This week I have been unwell....liver pain, extreme fatigue, couldn't move this morning and did not realize I was so bad until I tried to walk to the shops....I just stopped; but again I know it is related to what is wrong. My head is fuzzy as well and am extremely thirsty (not diabetic)....My LFT was normal.....I suppose we just have to get on with it, which is what it seems the docs want us to do. I will ask if I can be referred to the liver unit in Leeds and take it from there.
I also have a question regarding life expectancy....I have not been told about this by anyone.....I just seem to be getting worse. I am extremely stressed out because this illness has had a huge impact on my life and our income and every day is a financial struggle. I did not ask for this and cannot see any reason for it.
Hey, I am down in kettering and sounds like I must be lucky. Seen my specialist once for diagnosis aih/pbc overlap. Appt every three months, the first was cancelled so rang his Secretary to get one and changed clinic to see him. On the day saw another specialist. The next appt he was called into emergency surgery halfway through the heptology clinic so saw yet another specialist who was really good. My specialist has called me when I rang his secretary with a query to do with exposure to chicken pox. I find the connect between gp and specialist more of an issue esp as knowledge of these illnesses isnt consistent so you see one and they get it then the next doesnt. Kettering hospital also has a specialist nurse we can call so I wonder if your hospital may have that service available.
Although East Lancs Trust which is where I am do seem to be consistent with appointments there are times when things go a bit haywire. My own daughter is trying to chase up an hospital day procedure appt that she should have had 'within 3wks' which was now 14wks ago! At the moment she is to-ing and fro-ing the depts it seems. She went to her GP last wk to mention it to him to see if he could start to chase it up.
There doesn't seem to be any consistency across the country or departments. I hate the fact we so often feel the need to jump and down in order to get proper service.
I would try going outside your area, if GP will do it. And if you are going to do it, find out who the best are nearby, and go to them.
I would also start making a noise, if you have the energy. I know it won't be a quick fix, but contact your MP, write to local papers, write to Minister of Health. Also contact PBC Foundation, talk on phone but also write to the Bear Facts page. Also are there any local fellow-PBCers? I know a lot of PBC F activity is about fund raising for cures, but the way the NHS is going at the moment I think that maybe some activism is called for.
Sorry, rant over. I'm waiting to be seen about a wonky thumb joint, it's been well over four months since 1st saw GP, only got a referral about a month ago and it now looks like hospital are going to spin me to the full 17 weeks, but all the info sites say action needed within 4 months to avoid irreparable damage ... ho-hum. But it doesn't compare to your situation and I'm getting into a 'man the barricades' mood.
Also what cracks me up is what the specialist told me. The nhs allocate 20 minutes for the first consultation and then 5 minutes for consequent consultations! Explains why they run so behind. Apparently we should then be posting our questions to our gp's!!!! I told him we see specialists because they have the relevant knowledge! He agreed.
I dont expect a poor GP to have expert knowledge of every illness on the planet that's why there are specialists.
Whoever thought this process up should actually experience it.
After all the more time a specialist takes answering questions and informing us the less timeand cost in the long run.
I had to wait 7 months (Wales NHS) to see specialist, got immediate referal to Newcastle (PBC expertise) once with them (PBC Experts) I felt like I had "landed" My GP (nice chap) says to me the clue is in the name GENERAL Practitioner - get yourself to a transplant team in Leeds - they will be supportive I am sure. What you describe I and so many suffer from, it helps to share with others who understand, and they might be able to offer practical advice (medicinal) and practical advice (financial)
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Advice for someone who is getting angry please.
