[The stumbling block is that Alison is only 12 and must stay under the care of one of our children's hospitals so we need to convince someone to allow us to seek a second opinion form an adult unit !!!]

This made me think that maybe a letter, with copies sent to members in your government, or the hospital management, { anyone that might be able to pull some strings} with an explanation of Alison's rare and unusual health situation{ and the speed at with it seems to be progressing} etc, and then requesting that she be allowed to use the adult services for better care...??

Like in the USA we can write to our senators & representatives of our own state government or the Federal gov.

I don't know how the UK system is set up.

I did search this - "UK government websites"
http://www.google.com/search?hl=en&s...bsites&spell=1