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.

Keeping up the pressure

I think we're starting to get somewhere - maybe.

After pestering, cajoling, organizing for them and applying various forms of internal and external pressure, Social Services started by trying to bulldoze our sons review into a cuts exercise. They are now starting to agree that what is needed is not any less, or even any more money, just reallocate it a bit to get the care needed to happen. Some of them now seem to think that this was their idea, and it's in his best interests. I'm perfectly happy to let them take the credit - as long as my son gets the care he needs.

Health are a different matter. Far more intransigent, ruthless and uncaring. Much more interested in getting the boxes ticked, cutting the costs and protecting their own personal backs than having any real interest in our sons care. And far more willing to use their power regardless of the impact it has - even when it is detrimental to the care. Much more hard nosed and uncaring. A different set of strategies needed here - facing them down rather than reasoning is all that gets results. May need to call in the reinforcements here - but they are primed and ready. Public embarrassment and the threat of legal action are a last resort, but ones I'll use if I have to.

It feels like a power game, and I'm sure it is for them. The difference is that I'm willing to lose the game as long as I win the battle for his care. It always surprises me how far from the real care these people are. Winning for them is keeping their egos intact and shutting up a troublesome advocate. Winning for me is getting the care right. If we both win - fine. If they think they've beaten me - fine. The secret is to keep in the front of your mind what you want - don't get sucked into their power game. You can win by ignoring their rules. It's the care that matters, not who thinks they've won.

A week of fireworks

After an initial 'slow burn', the blue touchpaper we lit with Health and Social Services eventually produced a few fiecracker like pops befire turning into a series of roman candles. The recommendation to wear gloves and hold at arms length is something neither Health nor Social Services seem to have heard of, and there are now a number of professionals jumping around shouting with rather singed fingers. We're spending some time trying not to be hit by the random explosions as they wave the fireworks about.

And it's not even November 5th yet.

So far, the demand for a meeting, and subsequent pressure on key officials has produced -

• two assessments - one a year out of date, the other grossly insensitive, misleading and possibly libellous
• a substantial number of officials denying they are in the office whilst setting up decision meetings in secret
• considerable further damage to the little trust we had in either organization
• a number of officials taking unco-ordinated and often ill considered action which could be construed as duplicitous, but I hope is simply limited competence and poor information
• the beginnings of limited remedial action given grudgingly

All this reaction having taken place on the basis of paperwork only (well, less than 30 combined 'contact minutes' with our son himself)

Things have been stirred into action and the care review is at least live enough to get out of the way now. Getting it completed and making sure his care needs get catered for is still a series of battles further down the war. I honestly wish we didn't have to do things this way, but being reasonable, or even forceful, simply hasn't resulted in any action.

I'm afraid there will be some casualties in this - unfortunately these may well include some well intentioned 'footsoldiers' - and I'll be sorry about that. But I won't apologize for taking the action - this isn't about the tidiness of their paperwork - it's about my sons care. The front line Health & Social Services may well finish up with some bruised egos, they deserve better leadership and I'm in no mood to sacrifice the quality of my sons care just so they can have a quieter life. Their managers have rather thicker skins, bigger offices to hide in and surprisingly (even to me) far more ruthless personalities.

There are now a number of balls in their court, the next few weeks should be 'interesting'. (in the sense of the Chinese curse - 'may you live in interesting times'.)