3 replies to this topic

[too exhausted]

As xyrem only came available for people in the UK with both narcolepsy and cataplexy in April 2007 it is a fairly new drug to us. It has been used for over 30 years in the medical profession though and was initily used for putting people 'under' before an operation. I was prescribed this drug last year. However my local hospital pharmacy did not stock xyrem. When a new drug arrives on the market the hospital will meet to decide if they are going to stock this drug.
However your consultant/ sleep specialst can put a report together and give this to the PCT (patients Care Trust). The PCT will hold a meeting to decide if you meet the critria for the drug. If they do (and did in my case) they will allowing funding for your local hospital to carry and supply you with the drug. This process will take a few months as the PCT don't hold many meetings and are busy people. Put it is worth taking this route if needs be. If your hospital carry xyrem then none of the above matters as you will automatically be given your prescription.

[too exhausted]

Far as I know, nhs in scotland doesn't fund xyrem yet.

I have read somewhere that Scotland (the powers that be) doesn't think that the benefical effects of xyrem warrent the its price tag. I will try and find the web page.

[too exhausted]

I have read somewhere that Scotland (the powers that be) doesn't think that the benefical effects of xyrem warrent the its price tag. I will try and find the web page.

Found several websites about xyrem not being allowed for the treatment of cataplexy in Scotland. But couldn't copy and paste the files as it suppressed the information, i.e. could not find etc. when opening up acrobat reader.