Following a couple of other threads.
I am greatful for the DLA (and ds deserves it) but do feel there should be more on offer for caring for those with profound disabilities.
I have no direct experience of caring for a child or adult with continous high dependancy medical needs but just from reading on here, I can see that the support systems do not function well enough. It seems rediculous to me that ds gets the same amount for me to be up several times a night to keep him secure and comfy (tiring, essential - the personal care the dla care allowance is intended to help with) as a child whose family need to be on high alert all night (and all day) to change a tube, unblock an airway, or other specialised urgent proceedures.
So would a personalised nursing allowance be an idea?
What do you think? Could we campaign for some sort of help?