So, having had little or no progress on the review of our sons care package (which we didn't ask for and don't want - but which is damaging his day to day care) for over a year now, we've decided to take things into our own hands.
We've set up our own meeting, calling in Social Services and the NHS to sort things out with ourselves and the care providers. I'm giving it a few days for the commissioners etc. to get back up off the chairs they've probably fallen off and will then be pursuing each of them individually.
There seems little or no concern for the amount of stress and uncertainty delays like this cause. The reasons are perfectly simple - both health and social services have sacked so many ground level staff that they are simply unable to do the jobs that even they want to do - i.e. cut services to vulnerable people. Both organizations seem to be in a total state of disarray at present, and actually providing services seems to not even be on the agenda. The best they can manage is to hope that the providers they pay will do it for them and not screw up. Both our providers are doing a good job, partly because we are actively involved in his care, but it often seems to be in spite of, rather than because of the statutory authorities who should be responsible.
So far only the health and social services footsoldiers have responded - in both cases saying they are actually doing things in the background (but invisible to us). I have some sympathy for these people but I'm afraid I'm not going to let that stop me pushing for action.
The world has moved on since last year and his care package no longer fits the real world - and we're the only ones in a position/willing to pick up the pieces. It's a real problem for us - it must be even worse for those without active, day to day advocates or concerned relatives. The abuse at Castlebeck was also a result of statutory authorities distancing themselves from actual care - there are going to be a lot more of these sort of things with the health and social services disengaging from actual care and being only concerned with commissioning (and occasionally child abuse.)
We shouldn't have to take things like this into our own hands, we've got enough to do as it is. Unfortunately no one else seems concerned enough to act.