Sunday, October 17, 2010

Bracing myself

I am really the shy retiring type. But having a disabled son to care for changes you. I haven't done the assertiveness course most of the professionals we deal with have been on, but I have had lots of experience - and tomorrow I'm going to need it, again.

Tomorrow is the meeting where we'll be told we definitely can't have the nursing care at home that was effectively withdrawn last week. (Yes I know this is backwards, but this is CQC, NHS, Social Services, provider networks etc. Alice through the Looking Glass land - it's also complicated as we do have some care 'on a different basis'.) Anyway, I have to brace myself and we'll probably end up playing Mrs. Nice and Mr. Nasty again. We do this quite deliberately these days - we need Mr. Nasty to stand up to the authorities and Mrs. Nice to maintain our relationship with these people so the service can continue between crises.

This is a very cynical way of operating and I heartily dislike it - I even disapprove sometimes, but in all this the 'prime directive' (thank you Star Trek) is the best care for our son. And if it helps us hang on to a good care package, I can live with my own disapproval. For CQC the 'prime directive' seems to be seeing that the box has been ticked (though they force someone else to tick it), for the NHS it seems to be spend as little as possible but avoid bad publicity (as the lawyers cost more than the service), Social Services have fewer qualms - they just want to save money at all costs, (to hell with the publicity, the press shout at them anyway).

To them it's all a complicated 9 to 5 game they get paid for playing. To us it's real life. We've won in the past because we tend not to stick to their game rules - it always seems to surprise them for some reason. I think it may come to that again. The fact that they're playing Monopoly and we're live, also helps - it can even be surreally entertaining occasionally. It must be very difficult dealing with people like us. Tough, give us what we need and you won't have to.


  1. Ask for 'reasons' to be in writing and reply in writing with your opinion. I find that this can act as a negotiating pawn because if anything goes wrong you have proof of the 'who and the 'why' of the decision. This (sometimes) makes them more careful. Documentation is useful for quoting "them" that they said something different last time... which they often do. I am not a nice carer and remind "them" that my responsibility is only to my daughter ie not to the numbers!!!

    Sigh! Rant out.

  2. Thanks for advice. Rant away - I do it myself. If all this blog does is give other carers somewhere to shout, that's enough. Good to hear from you.