DIY social services

So in the end, we called the meeting ourselves. It took some cajoling and pressure to get health and social services to attend - and not all the right people came - but we did get some progress, I think (hope). We got them to agree that what we needed wouldn't cost any more than it did now, but would improve our son's care back to where it used to be. They seemed to accept that a care review shouldn't drag on for over a year and involve x3 new social workers. They agreed in principle to these things - I'm just sceptical they'll stick to their principles. I've circulated some notes and set a deadline. What I suspect they don't realize, is that I intend to enforce the deadline. I really do have political and administrative and complaints actions lined up if they backtrack or drag their feet any more and will be bringing them into play at the first whiff of a service cut suggestion.

It's very odd being the one who's driving this process as a carer. It's empowering but at the same time disturbing. It feels wrong being the one who needs the service (on behalf of my son), being the one who organizes it's provision. The whole thing should be being organized by the commissioning authorities - it was they who started the review off and caused all the problems. The fact that they are now so understaffed they can't finish what they start, and don't even seem able to talk across the office to one another doesn't fill me with any confidence.

They did try to set this meeting up, but couldn't sort out a date, forgot to book a venue and then tried to cancel altogether because they couldn't work out who to send. In the end I had to take over and book a meeting room, establish who needed to be there, invite them and talk to them to stress the importance of their attending and even then, one key participant had only come on board hours before without reading any of the papers. Part of me feels it's a cynical ploy to distract my energies so that they can continue prevaricating and letting the care package deteriorate, (and I'm planning on the basis of not allowing that to happen) but I think really it's sheer chaos, lack of communication and incompetence within the authority offices.

The thing that really gets me down is that they feel it's fine to do all this from the paperwork alone. I'm not sure how well having our son in the meeting went down (he slept right through the proceedings) but he is what it's all about. If all it's done is drive home the point that there is a real persons life at stake here, it will have been useful.