Hi everyone, hope life is not too bad today (remember things will get better at some point, (that was a very positive comment for me!)). I need to know how to go forward. My neuro physio has agreed that FES would be beneficial for me but unfortunately is no longer funded by the NHS. This is expensive and something I cannot fund myself. My neuro physio has said that I should contact the MS Society to see if they can help and also push for it on the NHS. Does anyone know how I go about getting this? Comments and advice would be greatly appreciated? Linda x
Hi Linda
Funding for FES would be by the PCT for your area - or the Care Commissioning Group that have replaced the PCT.
From where you are, your neuro should refer you to either a local FES centre, or direct to the FES HQ at Odstock Hospital, Salisbury. Odstock is the better bet, because - obviously - they really do know their stuff. If there is no trained clinicial nearer you (say Bournemouth/Poole), then it has to be Odstock.
Your neurophysio can also refer you to Odstock. The basic idea is that you get a referral, then you go to Odstock for a test to see if the nerve pathway in your lower leg is still OK, then they check that it will lift the foot, and then you start the fight for funding.
I had heard about the FES from a Copaxone nurse. I mentioned it to an MS nurse, and a physio, and got no response. My neuro saw the dropped foot and immediately referred me to Odstock. My then PCT had made some funding available, and I was a happy user within three months. At this point, the physio suddenly knew all about it. I guess it is who you lean on to help with the funding. Start with your neuro, or your GP, and you can always contact Odstock Medical Services direct (01722-439540, and make sure that you speak to someone on the clinical side) and ask them if they are aware of any funding problem in your county. Just look at it like this with a referral, you can get tested/assessed, if it works, then you need the funding. If it does not work, then you don’t need funding. You can PM me if you want to.
Geoff
Thanks Geoff, very helpful. I am in Dorset ,so Salisbury is going to be the best, luckily that’s where Odstock is based. My senior neuro is very unhelpful about this and the other two think it would be very helpful) (I have 3 - I’m a very lucky lady and they usually all sing off the same page!). I do believe this is my next step forward as to have assisted movement would be a godsend. Linda x
Hi Linda, that is great advice Geoff has given you.
I just want to add something that an FES user friend of mine told me yesterday.
I live in Calderdale/Kirklees area and they dont fund FES…BUT my friend says that folk in my area should try to get referred to Leeds, as funding will then be given.
It makes my blood boil, how anyone who would benefit from FES, may not get funding in their own area.
I wish I`d known about FES years ago, before losing all my mobiity.
I hope you are successful Linda.
luv Pollx
Hi Poll, the wonderful NHS, this is something that we should have access to but due to the dismantaling of the NHS (because that’s what’s happening - don’t get me started!) we have to fight for it. I have a friend in London who got her funding through the MS Society so I’m going to have to look at all avenues. Hopefully I can get some more feedback from this site so I can have an overall view how to go forward. Linda x
l have been waiting for 10months for an appointment - after my Neuro referred me - for a FES. lts the WalkAide that l hope to try.
Once l have tried it - and if it works for me - the next battle it the funding. Hadn’t thought about the MSSociety.
l shall have to go to B/Ham for mine.
This guide might help answer a few questions.
Extremely helpful document on the link that whammel posted. If you do end up without funding, you might try your local MS Society group - I know ours gives out some grants for FESs. But definately go the NHS route first - I have an FES which I fund myself and the replacement pads, leads and batteries are quite expensive, after you’ve paid for the FES itself.
You really need to read the document in whammel’s link very carefully, Linda, especially the first three pages.
Then download the “Handbook to the NHS Constitution” (Google this) and look at Page 34 (your right to treatment). You will see that you need a professional to refer you and to confirm that you need this in order to “function” normally. The professional should be your neuro or your neurophysio, for preference. If someone says that you would benefit from a FES, but will not support your bid for one, then you should tell them that you are taking this to the relevant PALS - and then do it.
Quite likely, the PCT have put out a notice that they will not fund FES. By the end of March, there will not be a PCT left, and the CCG will probably not have had time to consider funding for FES when they take over in April. Don’t risk upsetting your neurophysio over it - but they might be quite happy if a patient wants to push the decision. All you need from them is their support.
Geoff