Fampyra

byhookorbycrook

Apparently people tying to get this on the public system struggle. Anyone??

locum-motion

byhookorbycrook wrote: »

Apparently people tying to get this on the public system struggle. Anyone??

Do they? They shouldn't. The HSE announced a system for paying for it recently. However, they will only pay for it for those patients that have a beneficial response to it. Patients who have already had it (in trials) will either be known responders or non-responders. The HSE will pay for it for responders, they won't for non-responders. There either is or will soon be a system to allow for patients who haven't had it yet to get it to see which they are.

byhookorbycrook

locum-motion wrote: »

Do they? They shouldn't. The HSE announced a system for paying for it recently. However, they will only pay for it for those patients that have a beneficial response to it. Patients who have already had it (in trials) will either be known responders or non-responders. The HSE will pay for it for responders, they won't for non-responders. There either is or will soon be a system to allow for patients who haven't had it yet to get it to see which they are.

Yes, unfortunately, they will struggle. The amount of paperwork that has to be completed for a patient to get it is huge. The "responders" thing is a bit of a red herring too, it claims to help only with walking speed which is what the HSE will use as the only criterion, yet for many people it improves balance and things like pains and the ability to stand for longer.

To get Famyra , you initially need to get a script from your neuro and have walking speed measured then get if for a month, go back to neuro again for another walking test, get ALL the paperwork and then try to get it funded.

Straight away, you are into waiting lists to see the neuro -TWICE and then hoping the neuro's secretary can find time to do all the forms etc. on top of their other work- not going to happen so easily in the public system.

Loretogirl

I have been taking Fampyra for a number of years, last year paying for it myself. I was approved as being a responder in October. I feel it helps with more than walking speed. I was at the hospital on Wednesday, did a walking test, was told by the Doctor that my speed was now faster than when I was originally approved.

Then the bombshell was dropped the nurse told me the HSE will not continue funding this for me along with four other ladies. Mentioned something about the effect on my liver, this never came up before. Did anyone else come this before.

Loretogirl

Have been told this morning that it is not my liver but its the calculation of my Kidney function. It’s a formula they use in accordance with my weight age and Creatinine function. Has anyone come across this before, would really appreciate some advice.

byhookorbycrook

That's disappointing, haven't come across that, pm-ing you.