hello: Good morning everyone , is anyone on... - PBC Foundation

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janejulie profile image
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Good morning everyone , is anyone on Personal Independence Payment for primary biliary cirrhosis ,if so did you find it hard to get it

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janejulie profile image
janejulie
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teddybear7 profile image
teddybear7

I have PBC, fibromyalgia, & PVNS which has resulted in 1 & 1/2 new knees. But I can still put one foot in front of the other. I've had to buy an automatic car cut my working hours down. Until I'm at the stage where I'm bed ridden & needing care they won't entertain me. Good luck. X

cazer profile image
cazer in reply to teddybear7

Sorry to hear teddy bear you are not gettimg it...unfortunately its all completely unfair.you have to be very careful what you put on form.i was on incapacity benefit and had another dreaded brown envelope....so had to reapply for pips was convinced i would be put in back to work group because i couldnt do anything...fatigue awful.i concentrated on bowel issues as if you need constant acess to tpilet for an indeterminate time tjen how are you supposed to wotk.also get numbers /words muddled up etc etc.think you should appeal/reapply and remember its not doimg tjings in isolation with a rest in between its continuous and with liver fatigue we all have to pace oirselves dont we but thats not on the form so you need to make that clear.try again.good luck.cazer.

cazer profile image
cazer

Yes im on it not sure how as there was someone on our local tv andhe was ondialysis with only one kidney and he got put in back to work group.think they have tried to imptove it a bit as they realized theyd got it wrong.i used the words cummalative severe fatigue nausea pain toilet problems quite a lot so ask someone to help you ....do it in pencil first then read it to see if really says what you cant do! And be honest but dont dismiss all the lottle problems.make sure you put down tummy probs etc.good luck and if you dont get it appeal.they will try and trick u if you walk in there they will ask where you ve parked did u manage the stairs or have to use the llift!so b on your guard.ccazer.

cazer profile image
cazer

Go for it janejulie what have you got to loose.at the end of the day we know how poorly pbc can make us so give a go

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