Remaining 2 spinal AVM's to go and not good news

I had 3 AVM's diagnosed last year in L1-L5, the lower one was embolised at Royal London, Whitechapel on 7 Jan this year. Since I have been referred to get the remaining 2 treated by cyber knife as the remaining 2 were deemed inoperable by surgery or embolisation.
It's been a long wait since January, after months of waiting, I am a little disappointed today to learn from my Consultant Oncologist, that NHS England have refused funding on appeal to treat my spinal AVM's.

It seems that NHS England have a policy to fund treatment of brain AVM's only and that spinal are not critical...

I shall now contact my MP and raise this unjust policy with him. I can't wait for the outcome - it could be years of waiting. In the mean time my only option is to go private and have the cyber knife treatment so that my possibility of recovery can start...must check back of sofa for cash...
We have this belief that the NHS is to provide care at time of clinical need for UK citizens. I have clinical need, the doctors have told me I do...
What kind of people sit and make these decisions? Well I do know and I shall be writing to them, but you can all google the chiefs at NHS England...

Incredibly disheartening, wozza. I can hardly believe it. It takes some real ignorance to decide that spinal avms are not critical. Some patients talk to the media for help with fundraising, or go through their churches or places of business. Negotiate everything with the hospital. Hire an advocate if you can. Wishing you the best, and hoping you get treatment soon. Ask the folks on the UK group if they have other suggestions.