Quote Originally Posted by lynnifer View Post
I would go to the media about not finding the phrenic nerve thing ... my gawd what was the reasoning???
Pointless, our NHS is under massive cost pressures and far more deserving cases than mine don't get publicity. It is quite a simple calculation, cost of my care ventilated v's cost of operation and reduction in care costs ,factor in life expectancy and see which works out cheaper,at 58 and not too long a life expectancy I understand why it didn't get done. My chest consultant had all the numbers but the CCG who fund my PA's didn't go for it. After about a year I did start to breathe, the nerves to one diaphragm kicked in and I went back into hospital to wean. I got up to 12 hours off the vent but went backwards last Christmas after an infection kept me in bed and vented. Since then I'm struggling to do 30 minutes at a time. Have to wean again which I am not looking forward to. I have similar problems with physio, didn't get any in spinal unit (15 minutes of ROM a day) and CCG won't fund physio now that I am home, there isn't anywhere local, won't fund an FES bike etc etc, had to do that myself out of pocket. Same goes if I want to bring a trained physio in to teach my PA's, I fund it. I can't complain too much I'm at home with 33 hours a day of PA time paid for by CCG, I can choose when they come in and adapt around my work, I'm fortunate to have this as working has helped me get this far.