FES - negative decision

Hi all, I’ve been waiting for a funding decision for FES since the Autumn. Yesterday I decided to phone the Clinical Commissioning Group to find out what the delay was all about and was totally shocked to discover that they made a decision not to agree funding on 21st October. Apparently my cicumstances are not exceptional and they apparently only agree funding for extraordinary cases. I say ‘apparently’ because I’ve not been officially notified of this decision. The CCG told me a decision had been made and notified my GP accordingly. Neither the GP nor the CCG felt that I should be told! So, whilst I am stunned that a decision can be made without anyone notifying me, I’m also a little confused as to where I can go from here. My first thought is to appeal, but I have no clue how to do this. I’ve made an appointment to see the GP who submitted the funding app but this is not for 2 weeks. (Unfortunately my usual GP suddenly emigrated to Australia last year dammit!) I’m planning to try to get some help from a physio who was working with me on the application, but I can’t say I am fully confident in this assistance. Do any of you have experience of the process? In particular, is it usual to make a decision then not advise the person concerned? Would any time limit for appealing the decision be exhausted or would the appeal time start only when the CCG write to me rather than the GP? Should my GP be ‘encouraged’ to make a new application? How does a person demonstrate that they have exceptional circumstances? (I kind of think it’s more than just foot-drop, my hip/knee doesn’t work right either so the therapist at Odstock was expecting to give me a dual channel system, partly stimulating the butt and partly the knee.) Any advice would be much appreciated. Thank you. Sue

Have you thought of asking the MS Society for help with funding - seeing as you have already been assessed by Odstock.

l am still waiting for an appointment - only 10months!!!

This guide covers your options pretty well.


Thanks everyone, I’ve had a look at the MSS guide and I’ll be using it to help me appeal the CCG decision. I still can’t quite believe the NHS doesn’t have a policy of agreeing treatment/equipment that fits in with NICE guidance and can be shown to help!! Sue