Forum

FES turn down

Hello all and the overseer to the question re FES.

My neurological physiotherapist tried me out with a FES, and I was so impressed that I wanted one. Our local health trust had already pulled the plug on providing these things, but my N.P. said that the hospitals were still requesting them, and so far the health trust had complied. But this week I received a letter from the health trust to say that “Having carefully considered the information provided, the Panel have declined funding for this treatment as there is lack of evidence of effectiveness and cost effectiveness for this procedure and there is no evidence of exceptional individual circumstances ie no reason to believe that you would derive a greater degree of benefit than other patients with the same condition.”

I could appeal of course, but I would need a medic to shout my corner and there are none to hand. I just thought that I should share this so that others will not get their hopes up re FES as I did.

Yours,

Moira

But if your neuro physio has seen that it would help you, can`t he/she support your appeal?

Taint chuffin fair!

luv Pollx

A very disappointing decision when you consider that fes has been approved by NICE for years.

www.mstrust.org.uk/professionals/information/wayahead/articles/13032009_03.jsp

Perhaps contact www.odstockmedical.com and see if they can offer any useful suggestions on how to proceed.

I am appalled of this outcome. I would not be without my FES. If I was then I would be crawling about on the floor rather than walking.

I would try and appeal or failing that try and have a word with someone from the MS Society. There should be help for us on this site.

I wish you good luck and fingers crossed because I am gobsmacked that you have been truned down.

C x

Thank you to all who wrote in response to my posting. I have been trying to get in touch with my neuro. physio. to ask her where we can go from here. I am all for trying to appeal about this decision, and I know that she is quite a Rottweiler, so she would certainly fight my corner! Unfortunately she is on sick leave at the moment (hope it’s not MS!) so I will keep bothering her until I can ask about the appeal. I will also suggest that we contact Oddstocks.

Stanley, I don’t know what type of FES I actually tried out; until I read your comment, I had assumed that they were all much the same. All I can remember is that when I was being tried out for this FES, the N.P. had to turn up the dial quite high, but perhaps this just means that this wayward leg is quite battered and needs more GBH than TLC.

Reading of your (Poll,Whammel,Stanley & Candystripe) own opinions and experiences of this most useful pieces of wire, has urged me to have another go (or two) at trying to get hold of one. Thank you to all for your encouragement!

Yours, Moira

xxxx

Hi Moira.

You say you need a medic to shout your corner.

Start by getting your “GP” off his/her fat bum and fight your corner for you.

My GP fully supported my application for “FES“, as soon as he received the recommendation from the “FES” specialist physiotherapist, without me having to ask.

Hope you are successful with your appeal, as “FES” really is a great help.

Take care.

Chris R.

I. El. (Eng). (Rtd).

I know its going to be a bad day when I get out of bed and miss the floor, today is such a day.

Hi Chris,

Thank you for your posting re my FES letter. At the moment I am awaiting the return of the neurological physiotherapist. It was such a useful bit of kit (when I tried it) that I would like to have one for myself.

Yours,

Moira

Hi Steve,

Thank youn for this further information re FES access. I had some (silly me!) idea that the Trust here in deepest Lincolnshire might have done the decent thing and given me a FES for Christmas, as this is a very Tory area here and rich bods abound, but obviously I was mistaken. I shall certainly step up my action though and urge my Neuro. Physio. to urge them to pull out all the stops.

Hello Moira, I have an FES & in my experience if you have poor balance they will not stop you falling over but they are very good at moving your affected leg & improving your walking. I hope you can get one soon. Good Luck

SYLVIA

Hi Moira,

You should take a look at MS Society’s campaigns guide on how to access FES. It has some really useful information and advice.

You can access it here:

http://www.mssociety.org.uk/ms-resources/fes-campaigns-guide

Good luck!

Hi Moira, just a thought, could you afford to fund this privately? I had to do this and it cost about £300. I wouldn’t manage without it. Cheryl

Hi Moira, I am sorry that you`ve been turned down for FES. if your NP feels it would be of benefit to you, then can he back up your appeal?

someone who replied to you, said there unit cost £300…I have heard they cost £800…mmm?

luv Pollx

Dear Sylvia, Anon, Cheryl & Pol,

Thank you all for your suggestions about me getting hold of a FES through my own means. I had really thought that that would be the inevitable course I would have to take, but late last week, my neuro. physio. 'phoned me to say that she has had some patients that were turned down by one medical trust, but they were allowed one through another. She then asked if I still want a FES, and I said “yes”, so she just said: “leave it to me!” and that was it. I haven’t heard any more yet, but it is less than a week away so it would be a bit quick. I will wait a fortnight and then call her again, but it she hasn’t got anywhere then I will certainly buy one. The neuro. physio. was quite shocked when I said that I was thinking of this course, because she said I would need help being told how to use it or gert it fixed if need be, but of course if this was the only way I could get one then I would.

Thank you to all for your help and I will keep you posted!

Yours,

Moira

Hi Moirai, I don’t think you actually “buy” an FES, you’ll have to be referred privately, then they will set it up for you and fix it if it breaks down. Cheryl

Hi Cheryl,

Thank you for your posting. I didn’t know that these FES machines could be gained in any other way than the usual prescribing. I must admit that I couldn’t just rustle up £300. out of the air (still recovering from having my room decorated) but I could certainly look to saving for one. They certainly seem worth the investment, and even more so since I know that these can be fixed if it breaks down. Thank you very much for this information, as if my N.P. says that she can’t get one for me, then I will at least know that there are further posibilities. Thank you for telling me this!

Take care,

Moira