This is my story of the CC saga as you have been following my blogs. Had a phone call asking my if I would like to be present at a meeting when they would discuss how my sister fitted the criteria for CC. This after cancelled meeting, time lapses and me chasing up the powers that be.
I went yesterday, I think I now have a greater understanding of the system thanks to the patience of the social worker and the nurse assessor. (They were good) They make their assessment as to the patient's condition as on that day NOT how they are going to be next week, next month . We all know that this disease gets worse over time but that does not come into the equation . We went through this long form and my sister was scored on how she performed (for the want of a better word) as of now. Cognitive, communication, movement, continence, mood, feeding etc. She was scored either low, moderate or high. Most of her scores were moderate or low despite the fact that she has lost speech, peg fed,has to be hoisted, and is in the advanced stages of PSP. They knew she was terminally ill but you still have to fit the criteria they work within. I have no hopes my sister will get CC but I should have decision in 1-2 weeks. It is just a lousy system but we have to battle again and again till you either get it or it is too late. I can re-apply should there be any changes in her condition which we all know there will be and go through the whole thing again. Boy you need stamina for all the red tape!
Hang in there everyone and keep smiling someone might win