Hi all, does anyone use the fes (walkaide) my neuro said he thinks it will help my walking, but not thro the nhs only private! regards Tony…
I have been using a fes for about ten years (not walkaide) and they can certainly help dropped foot. The best bit is that they are available on NHS and approved by NICE.
I’ve been lucky enough to have used FES (for foot drop) for over a year now, and it has been extremely helpful.
Very recently, however, for every day when I wear it, it is causing my leg to be unbearably for the next 2 days!!! I’ve now heard a suggestion that funding for FES is no longer available, so I wouldn’t be at all surprised to hear that it was no longer available through the NHS (…too expensive & helpful, I’d guess?!!)
Last time I saw my Neurologist, he mentioned a medication called ‘Fampyra’ (Fampridine) which would have the same effect - it was nicknamed ‘the walking drug’.
At the time he mentioned it, it still hadn’t been approved for use in the UK. I believe it is now, but would be only too happy to have this clarified?
I’m seeing my Neuro at the end of next week, so ‘Fampyra’ is one of the things I intend to discuss with him.
I hope you are able to get FES one way or the other, and find it as helpful as I do
All the best and good luck,
Hi thanks for the replys, my nuero did say that he doubts i would get the fes on the nhs! ive been told that it costs around £3,000. private oh well id pay all i had to walk better than i do at present! this frampridine sounds intrestesting pls let me know how you get on dom. best regards to all… Tony…
Hi I’ve had an fes for about 18 months, I don’t use it in the house but I find it very helpful if I go out, I have mine on the NHS but it was difficult to get the funding, I looked at paying for it and was told its £1600 for the first year and £600 every year after that, I looked at this closely and thought although its a lot for the first year but after that its not much more than my car insurance, and if it gives me more freedom then to me it would have been worth trying to pay for, even if it goes against my belief that people with ms never really seem to complain or use the NHS more than others with a lot less wrong with them, yet they cut funding to something that can really make our lives better
Hi Jane. True what you say about people using the NHS for things they don’t really need or are entitled to – but hey ho that’s what this government allows!!! Can you recall by who you was quoted the £1600 and was this for the walkaide or FES with or without the wires. Grateful for yours & everyone elses replies & help.
Hi Tony I don’t really know what the walkaid is, I have the fes its like a tens machine, with the heel pad to lift my foot, I use a hospital in Cardiff but Wales have stopped funding, luckily I live in Herefordshire and they still agree to fund me but who knows how long for, I hope you can find a way to get some help with this it saddens me to think we are a pound sign to people Wishing you lots of luck Jane
Thanks for getting back to me Jane.
The MS Society have produced a really useful Campaign Guide to help those applying for funding for FES - just search the main site and you will find it. I am currently being assessed for FES via the physio at my local MS therapy centre and all being well, will have one on loan to trial before deciding if it`s right for me. If it is apparent that it improves my walking they will help me apply for PCT funding. So far they have been very successful with applications so am hopeful I will be funded. If not I will be using the Campaign Guide to pursue. If you have a Therapy Centre in your area it is worth checking whether they offer FES. Good luck! Hilary
The figures that I have heard are similar to those set out by Jane. First year is £1600 - and this includes all the assessment, and a lot of followup clinics. From then on, it is around £400 a year with only an annual clinic. The constant thing is all the consumables - like the electrodes only last for about a month. Batteries are variable (you buy your own) so I got a load of PP9 rechargeables and always have one available. Just remember that the Li-ON batteries discharge very quickly toward the end - they will be fine for two weeks, and useless two days later - that’s why I have four of them
The thing to remember is that the equipment is on loan. You do not buy it - you rent it (or your PCT does). My PCT funded mine almost immediately (but my Neuro expected to have a fight for it). What will happen under the new system is anybody’s guess (answers on the back of a stamp, please).
For me, after four months (and with a visit to Odstock in three weeks time), it is the only thing keeping me mobile. I started off by only wearing it outside the house; now it is used inside as well (after two falls due to the dropped foot catching on the carpet). Without it, I lurch about and can only manage about two-three steps without support. With FES I can manage about ten yards before I have to rest. FES, plus two sticks, gives me enough mobility that I can cope without a wheelchair.
I find that it adds about 15 minutes to the time to get dressed in the morning - once you have worked out the best routine for yourself - but that is a small price to pay for mobility.
I was allowed to try a FES via my physiotherapist, and I found it fabulous. Unfortunately I was not allowed one on the NHS, so I was going to buy one in January when I have extra funds. But last month I visited my neurologist and was informed that our NHS trust had backed down on their stance and now I have actually been told that I will be getting one. It will be a bit of a pain having to travel to Sheffield to have it fitted, but this seems a small price to pay. Maybe you can hold out a while as your own NHS trust may be changing their stance too. They are CERTAINLY worth having. MS has caused me to walk a bit like Herman Munster now, but when I have the FES on I have a more buoyant walk and my arms move like they used to pre-MS. Good luck with yours.
My physio friend got me an ‘Odstock’ fes - about 10yrs ago- lt cost - then about £160 - l did use it quite a bit - but found it a bit of a fiddle putting it on and only being able to wear it with certain shoes - and best with trousers. Then on a visit to an Orthotist at the hospital - he recommended a SAFO - which l also had to purchase privately. Luckilly, this orthotist was able to come to the house to do the plaster cast for the fitting/making - and he organised the ordering from DorsetOrtho
lt was the best thing l ever did. No wires - no constant buzzing - and you can walk about without shoes on. l 've had it 6yrs now - and it is still like new . lt cost me £600 - but l know some people can get funding for them. l sold my ‘Odstock FES’ to someone on this site - she was turned down for funding and desperately wanted one. l sent it to her to try out first with her physio - and she then decided to buy it. So it went to a good home!!
lf you google SAFO - silicone ankle/foot orthotic - have a look at them. l find if l have worn mine all day [and they are very comfy] my foot still remembers to ‘pick up’ for quite a while afterwards.
Hi all thanks for all your very helpfull replies im on the case now having just had a wobly walk around the garden. Thanks again to all. this site certainly helps with our every day needs i must say. regards Tony…