Care - ful

I worry about my son as you'll have seen from the other posts. But I also worry about my daughter (I know she reads this, so S. stop now if you want.) .... probably more. I still have all the worries the father of a 'normal' child has about his children, but when you have a disabled one, the concern for the 'normal' (in this case fairly extraordinary one, who we are inordinately proud of) is sort of magnified. It isn't that we're less concerned about my disabled son, it's more that we're aware we aren't giving her as much attention because she's more independent and less demanding. She deserves as much but inevitably gets less than half and it isn't fair. Disability affects more than just the disabled, it cheats the siblings and makes parents feel guilty. I don't have any answers to this and I've had over 25 years of looking - I just do what I can. (S. If you did read all this, apologies for embarrassing you.)

Filling the nursing gaps and looking back

Had a really good weekend. We have an old workhouse near where we live that I've done some research on, and this was the weekend we'd persuaded the local archaeologists to do a quick 'Time Team' on it. We do actually have a life as well as being carers. We got stuck in with them and had a really interesting Saturday - Sunday was a bit restricted as we had to collect my son as no nurses available to cover the shifts, but he seemed to enjoy bumping around the field and the fresh air. He wasn't too impressed with having to get up for a 9a.m. Sunday start and going back after his bath at 10p.m. but I think he had a good day.

It's a bit strange researching a workhouse when you have a disabled child. Back in the good old days of Mr Dickens and Queen Victoria, when Britain became Great Britain, my son would probably have ended up there, if he'd survived at all. Their official classifications of mental disability and illness were a bit less PC than ours - deaf & dumb, imbecile, idiot and lunatic. One day I'll grit my teeth and look up what they actually meant. Thank God for the NHS - even if it can't get his shoes sorted out. Those were the days when things really could only get better.

All God's children apparently still don't have shoes

So, we went to the hospital (had to put in a formal complaint to get the uppers back from Lithuania!) and the uppers were ready! And we were told its easy now, another week and the soles will be fitted and he'll have a pair of shoes ........ So, it's now over a fortnight later and, not only no shoes, they still don't know when they will be ready - apparently the factory doesn't work on Fridays and someone has been off on holiday. Net result - no shoes. Better re-activate the formal complaint. So being disabled means you have to live in inappropriate footwear and being a carer means you have to shout at people until they threaten to cut you off for discourtesy. I am a reasonable person really - all I want is a pair of shoes for my son. Everybody else can go to a shop and buy them that day. If they aren't going to be ready as promised, at least someone could have told me .... again.

Personalisation - targetted cuts

Personalisation is like Care in the Community - it's a great idea until the County Treasurer gets hold of it - and uses it to implement service cuts. Our Local Authority has used the Personalisation RAS (Resource Allocation Model) to impose cost cielings on care packages and taken on cost cutting consultants to target the most expensive care packages (the most needy) for cuts. They get paid a percentage of the cost savings they make - so no conflict of interest with providing a good service there then! Unfortunately the politicians seem to have bought the cosmetics of Personalisation - one in a million has used his Direct Payments to get a dog as a companion, so he doesn't get depressed. The bulk of people with disabilities need more mundane things like a decent wheelchair or enough care/nursing staff. But these tend to cost more than dog licences so they become targets for cost savings. To the client and carer, Personalisation in practice looks more like personalised targetting for service reductions.

PS The RAS is very careful to take out the cost of carer provided services - carers are only seen as valuable when they save the Treasurer money - their service isn't valued at all.