We had our long awaited meeting with the local PCT (Primary Care Trust) today. We'd been bracing ourselves for some time - this is what has been delaying our sons care package review and I was expecting at the very least some negativity about how much his care package cost and at worst an insistence that they couldn't afford it and would be cutting his care. It didn't quite go like that.
After establishing that neither of the PCT people had read (or even seen?) the mountain of paperwork we've had to do for Social Services (we'd specifically asked SS to send the stuff and the PCT to read it before the meeting), they proceeded to tell us that the PCT had ceased to formally exist the day before and didn't know who would be in charge following the current re-organization. His 'case' was very firmly in the 'pending' file and without us insisting on this meeting would definitely still be there - and it still might stay there.
We didn't ask for this review and don't particularly want it, but while it's in limbo, we have a serious hole in his care package created by the new registration rules of CQC (Care Quality Commission). So we have to get the review sorted out to put replacement care arrangements in place. We managed to get this meeting only by dint of publicly embarrassing the PCT - and now I'm not sure what is going on.
We got our message across and it was accepted. Though, sympathetic though they were, I got the distinct impression that they didn't see any of it as their fault. They seem to be relying on batting it further on to 'continuing care', which is a different bunch of managers, so it won't be coming out of their budget or workload. It all felt very like banging our heads against a very soft, delicately fragranced, wall - lined 3 feet thick with foam rubber. I'm not sure we made any real impression, (other than possibly having our cards marked as difficult). I do know that I'm only going to wait a short time for a response, and then I'll be back irritating the hell out of them until we actually get some real action.
This meeting added to my impression of an NHS in organizational meltdown - no-one seems to know who's responsible for what, everyone is clinging onto their job for dear life and the last thing on anyone's mind is getting anything actually done.
I'm sure they are nice people - I just wish they weren't NOT running our health service.