Eight years in and I never imagined we'd be going backwards instead of forwards.
My son has Acquired Brain Injury, he's a miracle blah blah blah and no one knows why he can even breathe on his own (sigh). I'm terribly grateful and I know I'm blessed but you know what it's just not enough.
He's a 30 year old man abandoned and neglected by a system that chases its own tale in a desperate attempt to ignore the fact that he needed help, needs help and will always need help.
If he had any other long term condition - no hang on - as long as it's a box ticker, he wouldn't be made to jump through the hoops which humiliate him and infuriate me. Why does he have to keep 'evidencing' his disabilities and conditions to an ever changing faceless panel of people who neither understand or actually know anything about neuro?
In a nutshell. He's not going to 'recover'. His condition without support will only get worse oh and most important of all it seems... he's going to cost more money. Because let's not fool ourselves this is what it's really all about.
And me as a person. I have been told whilst I can 'contribute', I'm not 'necessary'. Except of course when I'm providing the free labour that is case manager, therapist, care co-ordinator, PA support, untrained medic and general all round dogsbody. I'm acutely aware I'm not important. The sleepless nights, the cancelled work meetings, the lost contracts, the disappearing and invisible friends, non-existent relationships, hours spent on form filling, paperwork and defending my son's right to be heard and included as per the law and the NHS Constitution. The sheer amount of time putting things right when people on vastly inflated salaries get it spectacularly and occasionally life threatening and life changingly (is that even a word?) wrong.
This week I'm challenging a demand to pay more than £6 a week to a care package that neither works or is meeting his needs based on calculations that are out of date and not even correct. Responding to a very senior commissioner who has sent me a letter clearly about someone else and trying desperately to get the Local Government Ombudsman to understand that if you make me provide the War and Peace of evidence isn't it only fair you ask the local authority to do the same? And that my friends is all before 9 o'clock on a Saturday morning.
Till I have time to write again x