I have foot drop on my left side and find walking tiring and hazardous. Spoke to ms nurse about FES but she said this is not funded on the NHS although I could be referred. Wondered if there was anyone with experience of using it, did you notice significant difference and how much it cost. Any help appreciated.
Sorry heading should be FES damn autocorrect.
l have now got a FES - and yes it is funded by the NHS. Mine is from the Rehab hospital in Selly Oak Birmingham. Bit of a trek for me to get there -but well worth it.
Did take me 2 yrs to get an appointment. So do look up your nearest hospital that has this type of clinic - and get your GP to refer you.
l don’t have a MS Nurse - but then l have only had MS 34yrs. And a drop foot all that time.lt was one of the first symptoms - that and incontinence - when l was diagnosed.
Can the MS Society give you any advice. Do you have a centre near you. Don’t take your nurses dismissal as gospel.
It depends where you live as to whether you can get FES on the NHS. (Damn the postcode lottery!) I live in an area where the CCG (Clinical Commissioning Group, replaced the old PCTs) will only fund FES in extraordinary circumstances. I tried to argue that I was extraordinary, but the problem with MS is everyone is different so everyone is extraordinary, therefore ordinary!!
So although they’re not allowed to have a blanket ban on funding FES, in effect they have done so.
I chose to fund my own, eventually. Strangely, you still have to be referred by your NHS GP! The cheapest option is Odstock, based in Salisbury http://www.odstockmedical.com/ they also hold clinics in other parts of the country. It does help with straightforward foot-drop, but I’m having trouble with my whole leg not working so am going back for a trial with a dual channel unit.
The way Odstock charge is £300 for each appointment, with the necessity of having 2 appointments initially, followed by another after 6 weeks, another after 3 months and another after 6 months (so altogether 5 in the first year or (£1500). Thereafter one appointment per year (or (£300). Odstock provide all the equipment and things like electrode pads and wires. You can also choose to pay extra for a wireless foot switch, but it’s not essential. So the first year is pretty costly, but thereafter it’s £300 per year.
I don’t think you have to pay for an initial appointment, during which they’ll ensure that FES will work for you. You can phone them for a chat first.
There are other providers of FES, I’ve not tried any other devices, I believe they are more expensive than Odstock.
The only other option is to get a referral to the National Hospital for Neurology and Neuroscience in Queens Square, London. Apparently you can get FES on the NHS through them.
Obviously there are plenty of other options for foot-drop, from traditional orthotics (get a referral to your NHS department), to Foot-up: Foot-Up | Foot Drop Brace | Össur UK or SAFO (silicone ankle foot orthotic) http://www.dorset-ortho.com/
l had the same treatment as Sue - except mine was funded by NHS. Next time l go l will also get the wireless foot switch. They provide all replacement parts etc. Last time l went - l discussed with the therapist - how a nuisance the control box on my waistband was. And the long wires. She has set me up with a different version - so now the control is below my knee - makes using it much easier. And is much neater then the expensive cuff type [WalkAide]
Mine is on the NHS as well.
Referral was from neurologist/hospital straight to Odstock.
All they have to do is to send a report to the CCG (Care Commissioning Group - replaced the PCTs) every year.
They test not just the equipment, but the walking speed with/without, and have questionnaires on how fatigued you are with/without, and how safe you feel with/without.
I could not go out without mine (Impacts directly on Quality of Life) and I make sure I say so at every annual checkup.
A GP can refer you, a Neurologist can refer you, a Physiotherapist can refer you (but most do not like to do that), so there are more options than your MS Nurse.
Fight for one - it is more than worth it.
My neuro physio gave me mine. They had to wait for one to be returned by another patient before I could try one. I was given it for a couple of weeks and then had to return it while they applied for funding for one for me. From them initially suggesting it to me having one was about 3 months
I have to buy the replacement parts myself and as far as I know I won’t get an annual check so it appears to be different all over the country. I can self refer to the physios so I suppose if there was a problem I could do that.
This document might help in your quest.
I have to say that if you live within the NHS Coastal West Sussex CCG it won’t help. Not only that but they didn’t see fit to tell me they’d made a negative decision. I waited about 3 and a half months then phoned to see how long it would take only to discover that they’d made a decision 3 months previously.
Unless of course, they changed their policy! I’d say it’s worth a go, but not if you’ve got someone submitting the application who doesn’t know what they’re doing, or someone who doesn’t understand the process. (The application has to come from your GP; a good physiotherapist can provide the GP with the right information, a bad one will delay matters and provide either insufficient info or too much!)
Thank you to everyone for your help. There is lots to think about. My ms nurse said the nhs in Suffolk do not fund this but I could apply independently. Need to think about the money and practicalities. Once again thank you.
I was very lucky and was NHS funded to get my FES. Knowing now how much it helps me I would say that it is worth trying at least for an initial try out so that you can guage the potential value to you. I did explain to the CCG how much they will save in physio costs, reduced A&E visits and the decreased likely need for mental health support all brought about by my increased stability and independence directly attributable to my FES. It is not a 100% perfect solution but boy does it help me out.
Well after all the good advice from people on here, you should be well ‘armed’ when applying for a FES. Be firm - do not be put off. l have always told people on here to do this when applying for exemption for prescription charges. l never paid for mine - MS is a progressive disease - sadly no cure - as yet. So if people with diabetes and thyroid issues can do it - then so can we.
Mick’s advice - and what he said to back up his claim is very relevant to all of us.