As you will know from my blog my sister passed away on Valentine's Day. Life is hard and I miss her terribly also the routine of visiting her in the nursing home. I am trying to get my life together again. I had a phone call from the PCT concerning my appeal against the granting of CC for my sister. The caller offered her condolences on my loss and asked whether I still wanted to continue with the appeal, which I was perfectly at liberty to do so. She said she had spoken to the nursing home and asked about my sister's medical condition and basically nothing had changed since the last assessment (visual one) in September last year. You all know how PSP has its wicked way with you. My sister had lost all her speech, unable to do anything for herself, fed by PEG, was going to need help with aspirating. General condition was much worse. She considered her needs were not altogether medical but more general care and for that reason she was not going to get CC in retrospect.
What can you say. I was never going to win. I havent the energy or the fight left in me to try again at a system that is so wrong when it comes to PSP. All I can say to everyone out there
is to fight and fight hard to get what your loved ones deserve and need. I lost and failed.
Hang in there everyone one day there will be more help for you all
God bless all of you