Forum

Tell us your experiences of functional electrical stimulation (FES)

Hi all

Could you spare a minute to help out the Society’s Campaigns Team?

The MS Society is submitting evidence to a commissioning group on the value of functional electrical stimulation (FES) and other treatments/walking aids for dropped foot. We would like to hear about your experiences of FES and how it has improved your quality of life.

If you have you been able to access FES:

  • What do you feel are the advantages and disadvantages of FES?
  • What benefits do you feel FES brings you over other treatments you have used i.e. physiotherapy, orthotics like splints or braces

If you haven’t managed to access FES:

  • What treatment e.g. physiotherapy, orthotics (sprints, braces), are you currently using for dropped foot?
  • What are the advantages and disadvantages of the treatment you are currently using or have used for dropped foot?
  • Have these treatments met your needs and how do you think FES will meet your needs?
  • What is your preferred choice of treatment for dropped foot?

Greg [admin]

I have successfully used a fes for ten years and it has without doubt helped to prolong my ability to walk. However, it is only supposed to lift the foot and best ensure expectations are set with this in mind.

The advantages include:

Lifting the foot and minimising falls caused by tripping.

Builds muscle strength if used regularly.

Can be set to exercise mode and used while sitting down watching football.

The best results are achieved by doing physio exercises and wearing fes, so not an either or situation.

If you use a traditional splint the muscles will waste through lack of use, which only makes the problem worse.

It doesn’t suit everyone, otherwise there are no disadvantages.

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Have never had it mentioned to me how do you go about getting it? I have tried all other things it seems without a good experiance don’t bother with anything now i don’t walk much but when i do i fall and fall often! Perhaps if i could try it out then maybe i would be able to do more walking and exercise.

Tracy

Hi,

I’ve had FES for about six months and it has been very helpful. As whammel said it just lifts the foot so don’t expect miracles. For me it has increased walking speed, confidence, and i guess stamina.

I was lucky that my MS nurse recommended me to Sheffield and the PCT foots the bill. I believe however it’s a post code lottery again!!

Mark

Hello Greg,

My neurological physiothyerapist came to our house, and I was allowed to try a FES there. It seemed a little complicated to initially set up, but it was so wonderful to actually SEE myself walking normally, and also using my arms for propulsion. At first I did feel a bit like Wallis, in Wallis & Grommit’s film ‘The Wrong Trousers’, but it worked so well! But this is some time ago now and though my local health trust have pulled the plug on prescribing such things, my physio is still trying to get me one. I haven’t seen her for some time now, so perhaps she has been unsuccessful.

Yours,

Moira

Thanks for the replies so far.

Still plenty of time to add your experiences.

Greg [admin]

Had FES since my Health board started funding in March 2011although I understand there’s no money for anyone else this year. It has made a big difference to my walking allowing me not to worry about tripping and to maintain the distances I was getting before. It results in a better, firmer lift than the ‘foot-up’ support although it’s very fiddly to get the electrodes in exactly the right position to get the correct lift direction. I find the electrodes lose effectiveness very quickly - especially as I need to reposition several times. However, I’ve got quicker at setting the system up in the morning and just leave it attached all day, trying to remember to switch off between walks. I think I’m ‘relying’ on it now but without I’d be a lot less mobile.

I have been FESsing since March.

Could not do without it. Even in the house I need it.
Can set it up and finish dressing in 15 mins (12 if I am in a real rush)

Like MangoPlum, I find that the electrodes do not last very long - I can just about get 4 weeks out of a set.
I am not 100% happy with the lift direction (too much toe out, not enough toe up), but what the heck - it stops me from falling over. I also set it up in the morning, and leave it on all day.

What I have found is that rechargeable batteries can lose power very rapidly when they are near to discharged. I bought a batch and cycle through a set of three. In my experience, a battery can be “Good” in the morning, and reach “Replace Battery” in the evening. A normal PP9 lasted me about five weeks, and I am lucky to get two weeks out of a rechargeable. I find it does not pay to go more than a day once a battery has dropped from “Good” to “OK”, and I always have two with some degree of charge ready as replacements.

But, to be really positive about the FES, I can walk a short distance without sticks (say 10 metres), just on the FES, as compared with about 2-3 steps without it.

In comparison, I think that the Foot-Up device is less use than a chocolate fireguard. The Foot-Up relies on too many things being right. It does not work with slip-on shoes. There must be enough lace-holes to fit the thing properly in place - and you must be able to do the laces up really tight, or it comes out of place. So, anyone who is losing function in one hand has a problem. They will also have a problem fastening the ankle cuff tightly enough - and if it is not tight, it slides straight down to the foot and there is not enough pull to lift the foot. In reality, my experience with the Orthotics people (a private contractor in my area) was that they were trying to make me fit their standard solution. The whole horror story would take too long, but it really was a horror story.

FES every time!

Geoff

Hello,

I’ve got foot drop quite badly. Never been offered FES or anything like that to help with walking or going up stairs. I bought a Musmate several years ago and it has been an immense help to me.

Its like a pair of braces with an elastic strap goes from the waist to the shoe. It can help if one or both legs have foot-drop When walking it lifts the foot off the ground, stops it catching where the pavement is raised. Very simple device but so elegant.

Look it up on my website www.aid4disabled.com or Google it. Not supplied by the NHS, do not understand why.

Hope this is an interesting alternative viewpoint

Patrick

Hi I’ve been using FES for nearly 4 years, I had abit of trouble getting PCT to fund it and offered to pay for it myself but my GP wouldn’t hear of it he kept at the PCT who in the end gave in, I was refered to Sheffield,I use a wheelchair for distance but I would be able to walk at all without it, I tried a foot-up and a foot osthosis which I found very uncomfortable and made me walk like a Cyborg the Fes while not perfect does give a more natural gait. I wouldn’t be with out it. I believe FES is NICE approved so keep the pressure on your PCT don’t take no for an answer.

Chris.

My first experience of a FES - was some years ago. l was fortunate enough to be introduced to a physio - who had just retired as head physio at a large hospital. She was able to get me a FES [Odstock] for me to try. lt did help with picking up my dropped foot and l was amazed at how well l could balance and walk. Through this physio l was able to purchase my own - which she showed me how to set up. The downside - and there is always a downside - l found it a fiddle to get in the right position - wear the right shoes/clothes etc - and the buzzing drove me mad in the end. Dashing to the loo - and trying to quickly get my kegs down with the battery/control pack clipped onto my waistband caused problems. Many times it ended up in the loo. l had to pay for this myself - but it was about £160 - and the physio did not charge me for her input. About 6yrs ago - l saw and orthotist at the local hospital. My physio friend came with me - and she asked him about a SAFO- The orthotist was a great fan of the SAFO- but then the NHS would not fund this either. But through my physio - he arranged for me to get one. He came to my house to take a plaster cast - and ordered it for me. lt cost about £600 - so not cheap - but l found it so much easier to use and more comfortable. No sign of wear or tear - so it is doing well. And of course you do not have ‘parts’ or batteries to replace.

l sold my Odstock to someone on this forum. She could not get funding and was over the moon to get the chance of buying mine-her physio soon set it up. lts not rocket science - just trial and error to tune it in - and move the contacts to different areas to get the best result. lnstead of putting one below the knee and the other by the ankle bone - both can be put below the knee and with careful tuning you can get your knee to lift.

l would like to try the WalkAide type - which is wireless - and works with any shoes boots or barefeet. lf the NHS would fund it l would like to try it.

F

Hi

I’ve been seeing my neuro physio this year and after years of unsuccussful tmt’s they finally diagnosed drop foot, I was offered a hand held fes and splint for a while to try, I went back after a month and said it was fab, no falls etc, was told that they were not referring me for the FES as it is ver expensive and it does the same as a muscle trainer!!! I went home and dug out my OH’s muscle trainer and still use it now, it’s nto as effective but better than nothing!

Becksie x

Hello again,

I have now been given a FES machine and I use this most days because it is so useful at just jarring my lazy left leg into walking. I used an elastic splint before I was finally granted the FES and this option isn’t nearly as good as using the FES. The only drawback I can see is that it is a bit of a palava to set up and take off again, and the visits to the hospital to make sure I am using it correctly are a bit of a drag because we live so far from there. But all in all I am very pleased that I now have a FES and I just know that this will be invaluable for me. I haven’t tried using this yet when I am exercising (pilates etc) as I worry about hooking one of the wires.

Yours,

Moira

Hi

I was able to try a FES via my local MS Therapy Centre. It took some getting used to a at first it took me ages to get the electrodes in the right place. The good news is that I still have the FES on loan and can now set it up in 5 minutes. The physio at the Therapy Centre is applying for PCT funding on my behalf and is submitting evidence to show that when I use it my gait and walking speed are much improved. She has had 100% success so far with such applications so we are keeping our fingers crossed…

I think it is shocking that the FES is not offered routinely on the NHS for foot drop as it is NICE approved. The hospital physio could only offer me a foot-up which was useless. I was then referred to the Orthotist who gave me a horrid, rigid plastic brace which I could only really wear with trainers so no good for work. I am due to go back in a few weeks to be fitted with an elastic splint which might be a reasonable back-up to the FES if I get it.

The FES is not perfect -it is a bit of a faff to set up, the electrodes don’t last long and you can only wear it with trousers but I do feel I can walk further, faster and safer when wearing it. I did try on a SAFO at MSLife earlier this year and that felt good but not sure I am willing to pay hundreds of pounds for one just yet.

By the way The MS Society have produced a guide on applying for funding for a FES - available to download from this site.

Hilary

I was diagnosed with PPMS in 2007, pretty soon after that the Neurologist discharged me as she thought there were no treatment options and I was given contact details for the MS Nursing Service. I dont really contact them very much as any progression has been slow.

Over the years my gait has become worse and I developed a drop foot on my left side. Ive lost count of the number of times this has caused me to trip, Ive got quite adept at saving myself with my stick.

I saw my GP last year on an unrelated matter and he made an appointment at the local hospital neurological rehabilitation department. They suggested a FES Device could be good for me. This year I saw the GP again and asked if he would apply to the local CCG for funding. He got the support from the NR Dept.

The negative answer came back about three months later. The fact that there are no medical alternatives cut no ice with them. I was very disappointed but not surprised. I dont know what the N is for in the NHS but its not national.

This guide explains how to appeal. https://www.mssociety.org.uk/sites/default/files/Documents/Campaigns%20resources/FES%20Campaigns%20Guide.pdf

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In my area (Coastal West Sussex CCG), they essentially refuse all applications for FES from people with MS. Although the rules from NICE are that they aren’t allowed to make blanket decisions about such matters, it seems that their rational is that they will only fund FES for people with MS if they can show that they are an ‘exceptional case’. Then of course, because everyone with MS is different, everyone has exceptional needs. Therefore no one is exceptional. This is how it was explained to me. Eventually. My physiotherapist at the time decided to apply for funding for me in any case. I hadn’t fully grasped the above so I let her guide me. I received the required support from my GP, although essentially they didn’t really understand the technology. The application took months to collect all the information and was submitted. Then, when I’d heard nothing four months later, I phoned the CCG to enquire as to the application. The person I spoke to told me that they’d made their decision three months before. And informed my GP of their decision. I asked what that decision was, they told me that I would have to ask my GP!! (The answer was no, they would not fund it!) It is a backwards system. The individual cannot make their own claim / application / case. The individual cannot be advised of the result. What really cheeses me off though, is that after I decided to self fund FES (and again I was given incorrect information by the physio, she told me it would cost £3000 per year, it’s much cheaper than that, the first year is expensive at about £1200, but thereafter it’s £300 per year), Odstock, the FES company wanted me to set goals in order for them to ‘report to the NHS’. I was incensed by this. If the NHS wanted goals and targets and reports from my use of the equipment, they should have paid for it. Sue

The CCG in my case did at least send me a copy of the letter they sent to my GP. They must use the same criterea and stated,‘No exceptional circumstances were found’. The way I understand it is you are judged against your peers with the same condition. To me its an impossible thing to prove, how can it be more important to help one person with a walking difficulty above another with the same condition.

I don’t see the point in appealing because they can just refer to the above reason.

The fact that the NHS wanted reports of the use of the equipment that they refused to supply is an absolute double insult

Oxfordshire do not fund any FES. 10 years ago I decided to fund myself and purchased a Dual Channel FES as it was cheaper than a single channel. I had NHS physio support with this.I used it very successfully for 7-8 years as it enabled me to walk further and walk more safely. I then had a relapse and after an assessment by the NHS physio was told that FES was no longer effective for me. So I tried many splints, foot up etc, bought a SAFO (which in retrospect was a waste of money for me)none of these really worked well for me.My private physio then had an FES day and I was seen by an Odstock physio,with a tweek of both electrodes and the machine I now use my FES on both legs. The advantages of my FES on both legs are that it stops me falling, exercises my leg muscles and gives me more confidence to walk around the house. Without my FES I would continue to fall and I would be moving towards using a wheelchair in the house. I do find the wires little fiddly but could not afford a wireless version ( if one was available for both legs). I pay for reviews at Odstock and pay for electrodes but I am so pleased that I can do this as many friends with MS in Oxfordshire do not have this option.

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I was referred by my neuro with no problem as soon as I asked (QE in Brum) I was assessed and tried a FES out. Unfortunately after fiddling about for ages the only movement we could get was a very small bending of the foot in the wrong direction. I was gutted as my foot drop is quite bad and I’m for ever catching my foot on things - I have insoles and an AFO provided by the hospital but still stumble often.