Don’t know where you are in the South West, but read on …
In July I was told that my name would be put forward for a Fampyra trial.
Since then? Almost zilch!
Oficially, the word in August was that holidays had gotten in the way of discussions about this. After that … … … …
However, in late July, I had been told by another NHS professional (just an acquaintance) that the Wiltshire PCT had refused to fund Fampyra.
Now, there are two things about Fampyra.
1 - The manufacturers provide a 4 week supply FREE via the NHS to each prospective user.
2 - The trial period to determine if it “works for you” is two weeks.
OK, so this is a clever bit of marketing, but if it works for you, and NICE have approved it, and your consultant prescribes it, then the NHS Constitution says that you should have it. I interpret that as meaning that the PCT should have to justify each refusal. One can only speculate that any PCT has put the word out that they will not fund it as a way of making sure that it is not prescribed - or am I being cynical?
On the other hand, Fampyra does not work for everyone (say, about one third) and of those it does, only about one third show any real benefit. The chance that it would really benefit you is about 11%
Initially, I was quite excited, then I got resigned, now I really do not know if I would even take an offered trial.