PBC Foundation

Sorry all can't seem to find my orignal post endoscopy

I had my endoscopy last week and promised to update you I decide on throat spray again ! Was over quick but uncomfortable ... The first thing they asked me which I had to answer very carefully because I was absolutely livid was yes you got it Do you drink alcohol I was very controlled and replied " who referred me reply Dr so and so ok why did he refer me

response ummm let me check oh yes to check for varacies as you have pbc * ping the penny drops ! Then he says are you on antacids ? Me yes I am but your booklet says to stop taking them 2 wks before your endoscopy !!!! " oh I see have you got any on you now " me know why ? Reply " umm you have a 5cm hiatus hernia, reflux oesophagtis , oesphageal batches without bleeding, duodenitis we will write to your Dr and reffering consultant pause do you eat regular 3 meals a day ? What do you think was my disgusted reply ! Lets see how long it takes for my consultant and Dr to call me in !

4 Replies

Hello cowre.

Your experience verbally sounds, well disgraceful.

The problem is that it seems doctors just do not read a patient's medical notes! I have experienced same with doctors myself since starting to itch and have fatigue early 2010. The GP on my case at the time seemed to keep on track but it was once he was on holiday after diagnosis (the consultant at the hospital made my daignosis Dec 2010 via AMA blood check, sent it to GP), I had my first visit back to the GP after starting urso so had the follow-up GP visit and wanted to have a longer prescription of urso from then on. Was hard work seeing diferent GP in practice as he obviously hadn't looked up my notes prior to me going into his room.

I switched GP surgeries last yr., had fun later last yr., a different doctor to who I had seen twice on registering. This GP decided to ring me up at home after repeat bloods and informed me my LFTs were abnormal! She said she was at the time comparing with the last ones I had taken several months before. Needless to say I informed her I had all my blood results from later 2010 in front of me at the time as had been expecting GP call and to me given I had PBC they looked quite OK!!

I know since being diagnosed with PBC I do find that doctors aren't exactly that well-up on medications. Last year when the urso 300mg were taken off the list, my GP wasn't even aware of it and I had to go in and see him in surgery to tell him what I knew so he could give me a script for 150mgs to 'double up' on daily. He then asked me to let him know in future if the 300mgs would be back in supply!!!

I've had practice nurses and their healthcare assistants ask me how much alcohol I drink or used to drink and I find this extremely insulting but these days I just think to myself that they are the ignorant ones.

One thing to be noted is that though your consultant requested the endoscopy the technician performing it isn't actually your doctor but there's no excuse really I suppose as they do have notes on the patient there, what to look for, etc.

My own sister had a brain haemorrhage November and she is still stuck in the NHS system. I've not been naiive regarding the medical profession for a long time (bad experience with my late first husband) but my brother-in-law appears to be somewhat. He seems to be more trusting of the system, well so he thought until his wife was hospitalised. He says often that he's had to tell hospital staff what my sister can and cannot do at present and he says it is written in her notes but no-one seems that bothered to read them.

Unfortunately I think you'll find we all seem to be in the same position and in my views, in the age of modern technology, notes on computers as opposed to the dreadful writing doctors seem to use in handwriting, things do not seem to progress somewhat.



I nagree with Peridot. Many doctors just do not seem to read patient notes-barely glance at them as you enter their surgery and frequently get the wrong end of the stick! The only thing we can do is query this with them. "have you read my notes? What did my consutant actually say?"As for the rest-remind them that you have an autoimmune liver disease with no known cause or cure. That might shut them up! My stock answer when asked do I drink is @Only champagne!


Nice one crundalite champagne all the way :)


It gets so weary Peridot having to repeating yourself over and over we are but a another name on a file !


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