Well folks, as I had feared - we have had P`s CHC funding appeal denied after he had been funded for 2 years.
Since the annual assessment in July was negative I have worked my socks off to gather more "evidence" to support P`s case. The fact that he is doubly incontinent, cannot eat without coughing/choking even on a pureed diet, has lost 4 stone, has to be hoisted, have everything done for him, is monosyllabic (when he speaks at all) ....... well, you all know the rest because it`s the same for all of us.
As one of our sons said to me "how ill do you need to be to qualify for CHC ?"
Even worse (if possible) I found out their decision by accident. The social worker - I have met once at my behest and the only one I`ve ever met - called me to say she`d had a message on 13th February to re-open the case. When I asked why, she said she`d been told that P does not qualify any longer for funding so we will need a financial assessment. I have been phoning the CHC office for 2 days before they were able to confirm it (oh, and apologise for how I found out).
I am feeling distraught, tearful, angry, frustrated ... and sick.
Worse still P is not eating or drinking very much at all and is sleepy all the time. He looks so unhappy, it is heart breaking.
Sorry for offloading so much but I know I`m among people who understand !