If only

If only it was as easy to get ones life sorted as it is to turn a remote on and off...

ambulance for vicki sounds as if its going to be needed as the NHS are still claiming to not have the funds to move me, because I am not joint funded despite my complex needs.

But the needs of someone with ME don't fit the tick box system that the NHS uses to decide who needs what care... One way to ensure 1000's of people don't get the NHS care they need isn't it!

I had an appointment with my GP today. She is hopeful that the move will be right for me, but agrees that the lack of suitable care isn't going to aid my recovery. But hopefully a better environment for S and A will help....

She tried to sort the ambulance out for me and is as bemused as the rest of us as to why the nurses can say 'I don't have the funding' but my care is social care funded not nursing care and as such the NHS doesn't appear to have a duty of care to look after me.

I have been struggling this last few days with a lot of emotions, anger and frustration and fear as I will have a totally new care team when I move and right now that's making me feel extremely vulnerable. I don't trust the medical profession on the whole not to make judgements and changes to my care which won't harm me, and I don't trust new carers to have any idea at all about my illness. Which means months being spent again training them up.