Forum

The dilemma with Fampyra

Apart from the obvious one, the cost. Here is the big one, Suppose you take it and it works, it improves your walking, toilet problems, etc. But it doesnt improve them enough for you to resume work or trying to find new work but enough so you can comfortably walk over 20 meters so you lose your mobilty car. Then if it improves other things just enough you lose any sare element claim as well, then of course esa.

So you may find a way to pay for it whilst on esa, dla/pip by cutting back on whatever . Then they reaccess you and stop your benefits and then your back on jsa and totally unable to pay for the medication and your health reverts back to what it was or worse.

I wonder what the dwp’s stance is on this. That the only reason you can walk better is because of a drug but once they remove the benefit that allows you to pay for it then you would have to claim again !!

Any solutions ??

Ive posted anon for obvious reasons, I suggest the replies may consider doing so as well !

good question, should be on nhs if that happens lol

It’s obvious. Don’t tell the benefits people anything ,

Anon,

I assume you haven’t been able to try Fampyra yourself so far?

I’ve just completed a 4-week trial and any improvement in walking ability was so minimal, it didn’t convince me that the extra expense was justified. It’d be great if it addressed the things that caused me to give up work on health grounds, but sadly it didn’t come anywhere near so many physical issues …but then it never claimed to

Now that I’m no longer taking it, my walking, balance and pain level are all a bit worse than before the trial.

I honestly wouldn’t expect this medication to do anything other than improve walking. It certainly not necesarily going to improve anything else.

However, as we’re all different, it may well be more helpful for you?!! (It might well be worth you looking at the thread on page 2 of this forum, entitled “Fampyra - Update After Completing Trial”)

Dom

Erm well you have to if you have to fill out a claim form or if being reassesed by Atos. Or , more sinister perhaps by being shopped by someone that has noticed an improvement in your walking and wonders why your still getting a mobiliy car !

Difficult to hide if one minute your in a wheelchair, the next you can struggle into shops etc

Yeh thanks for that Dom, I appreciate that it doesnt work for some or the benefits dont last. But the question remains the same and I guess is targeted at the ones it does work for. Looking at some of the anecdotal videos on youtube some of those people (if true and real) walk fast enough to not get any benefits at all. Yet it is accepted by everyone that the minute you stop taking it you revert back.

Same I guess applies to FES.

Last summer I was put on the list for Fampyra. I got quite excited.
Then all went quiet.
Then I heard that my PCT would not fund it.
Then I found out than none of the PCTs in the South would fund it.
Meanwhile I had researched it.

On a cost/benefit basis, it did not look good.
The prospect of a substantial, sustained, improvement looked to be about 11%.
The potential side effects did not look good at all.

This does not answer Anon’s question, but I am not entitled to any of the benefits in question (way too old).
OTOH an improvment in my walking could cost me my Blue Badge (applies to many of us).
Of course, assessing the present Government approach is easy - walk=work.
The approach of the next Government will either be the same, or be advised by the same Civil Serpents - hence:the same.

If it were ever offered to me again, I would think very long and very hard!

Geoff

No,

When you stop taking Fampyra it’s far more usual for your walking to be worse than it was before this medication.

FES is a completely different thing. It’s not a medication (internal), but an external device where you attach physical electrodes to the skin above muscles that aren’t receiving a signal from the brain.

Dom