Iv been trying to get my gp to refer me to prof aziz since september when i met him at the hmsa resi. My new rheumy has written to my gp and told him i need to be reffered for my gi issues.
I decided to see the lady gp i saw once instead of my usual gp as my usual one was not very nice last time. she was loverly and had no problem reffering me but then discovered that the PCT could refuse the refferal and stipulate that if an alternative service is available in my PCT i have to be reffered there.
There is a specialist GI consultant at one of the hospitals in my pct who does more complex gi surgery who would classify as the 'local alternative service' to prof bird. I have a feeling that this consultant is the GI consultant I saw last year who discharged me when he realised it was eds cuasing my bowel problems.
even if it isnt him i really do not want to be seen in my pct by anyone.
i have grown up on my PCT. i have been going to gp after gp about my bowel issues since i was a small child and been ignored time after time. when i finally got reffered to hospital for investigation it was too late, when my bowel had finally started to pack in and i was doubly incontinent. the specialist looked for crohns becuase of mum having it, when i didnt have that (which my rheumy still thinks i do have and wants a 2nd opinion on the crohns tests) he decided i had ibs caused by depression becuase of my bipolar label which is a misdiagnosis. when he realised that i didnt have ibs and that it was eds cuasing my problems he discharged me, told me to live with it and wouldnt even perscribe the irrigation system that my continence nurse had been asking him to.
Its becuase of my local pct and the drs in it that my eds was left to get as bad as it is esepcially my gi issues. I now have upper gi symptoms to the point where i am barely eating, i have lost 2 stone in 3 months and my throat and oesphogus is starting to 'clunk', i cant swallow properly.
my irrigation no longer works. when i started using it i would use 1 litre of water to fill my bowel to flush it out. now i can only get 300-400ml max in so my bowel has started to collapse where it is not letting the water past. when i started using the irrigation my stools would be water, now they are very solid and difficult to pass which is not what irrigation should be like. when i spoke to prof aziz at the residential he said that i may need a port put in my abdomen to pt a tube in to irrigate down through my bowel instead of up through my bottom. if that doesnt work or my bowel is collapsing then i could need to have my bowel removed and a stoma put in instead. i have no idea what my upper gi problems will need but i had an endoscopy this week that showed inflamation in my stomach but nothing else which i assume means that my upper gi is to do with the muscles getting too lazy the same as my lower gi system.
My gp rang today to say that she has found out that if she can find prof aziz in the choose and book system i can be reffered if not i have to be seen in my pct.
I need his hospital name, the department hes in, his speciality, anything that can help us find him in the choose and book system. but if he does not accept refferals through the choose and book then il have to appeal of go private. i have no idea how much that would cost with all the tests and possible treatment!!!
has anyone else had to appeal a refusal to be reffered?
PALS in my town are beyond useless. i tried them when i lost my sight with the medication. they just never got back in touch with me for ages and when i finally did get hold of them they were useless and just gave me the same info that i could find online.
my local pct have let me down too many times. i went blind and nearly died becuase of a dr in my pct overdosing me on medication, i was diagnosed and then left with no treatment for my eds at 27yrs and my gi issues -and need to see prof aziz- is becuase of my pct failing to take my gi issues seriuosly my whole life.
can anyone help me prepare for appeal if i need to?
for now can anyone provide me with th information i need to find prof aziz through the choose and book system.
i am so devastated by this. my gi issues are my worst part of eds and cuased the most disruption to my life. this recent hurdle has knocked the wind out of me and im now loosing my will to fight and feel like what is the point with it all.