chenodeoxycholic acid vs ursodeoxycholic acid in the treatment of CTX

the doctors know nothing in the uk and treat my mum as an unknown and my auntie was a guinee pig who died needlessly because of their lack of knowledge im sure i can help things be better for my Mum i just need more knowledge to try and stear the doctors !!! My Mum has cerebrotendinous xanthomatosis CTX and her sister also, said sister Gillian has just passed away due to complications with gall stone /gall bladder operation I believe as a direct result of CTX side effects. Anyway first question Medication is difficult to sorce for my mum being the only individual left in the United Kingdom with this dissorder.... can you advise...she has been transfered from chenodeoxycholic acid to ...ursodeoxycholic acid which i believe is wrong and wont treat mums CTX??? am i right and do you know how we can get cheno? as i heard the ULF took over the rights or something? and since then my mum seems to have been transfered onto urso which i think is probably no good??? if ULF have taken over right and distributions etc is this why, can we no longer get it in the UK because of this?
I would be interested in corresponding with others who have experiences with CTX sufferes and treatments as I i just need more knowledge to try and stear the doctors in the UK!!! Does anyone know what else we can do to help or improve things for my Mum and her CTX