This makes me so angry, in fairness, they’re drugs that I can’t afford anyway (and even more so, as a likely PPMS’er getting no actual treatment), but to not have the option in the would be rubbish.
Anything I can get on the NHS to help my symptoms has me yawning at my desk, perhaps the government should get NICE to talk to the DWP if the goverment wants us to try to keep working etc.?!
http://www.mssociety.org.uk/ms-news/2014/04/nice-could-block-access-fampyra-and-sativex
Sonia x
Interesting that the draft mentions Fampyra, when none of the PCTs or CCGs across the whole of the South and West have been willing to fund this medication. It looks like someone is making sure that that particular door stays shut.
Of course, it is the vague NICE approval of the FES devices that let a lot of PCTs/CCGs get out of funding these as well.
I could not get around without my FES - and I was very lucky about the time when I was referred to Odstock. A few months later, and there would have been no money (that’s why I have one and a friend does not).
Geoff
I’m still waiting on my FES referral to come thru, crossing fingers on that as my right big toe if almost stuck to the floor by evening.
As for the Sativex, I’ve been told ‘not yet’… side effects of baclofen/tizanidine/dantrium all bad, so not sure what’ll happen at this rate if they shut that door! And no, I won’t go the illegal route because that’s half the point - I want to be switched on and able to work for as long as possible.
Sonia x