Monday, November 28, 2011

Hospital can damage your health

Short post as son in hospital - severe chest/breathing problems.

Despite all supposed words that things are getting better, admission was a nightmare - again. We've had apology from matron but that doesn't improve his treatment or obviate the delay or stress caused. Will take it up later - at present main concern is to get him better.

Hospitals are still not geared up for disabled people. They cater for 'normal' people who are ill. However good the people, the system is a mess.

Friday, November 18, 2011

Professionalism - or not

In the mess of my son's care package review, one particularly irritating shambles was a very poorly written assessment by someone who had barely seen him, but as a professional, had the status to make judgements on the basis of little or no first hand information. We complained about the assessment and sent in our own comments, particularly on some critical omissions and one near slanderous statement. (Probably actionable, had we the energy.)

We've just had a rather grudging apology from the boss, but in the same post, a 'signing off' of his 'case' by the original offender which in turn seems more concerned to label us as unhelpful than to consider our sons actual disabilities.

This really irritates me.

We cared for him pretty much alone for the first 18 years and it's taken us the last 10 to get a care package together that might outlast us. I feel this should give us some status as experts in his care. I certainly feel we know him better than someone parachuted in who only met him (and then under pressure - they would have been happy to have done the assessment from paperwork and second hand comments alone if we hadn't insisted on a visit.) for half an hour.

But this person is a 'professional' and has official status. As carers we don't.

It's bad being ignored. It's worse being actively discounted. It's abysmal when the paperwork is more important than the care.

Tuesday, November 15, 2011

Disabled and tarnished

So the Low Review into the effects of stopping Mobility Allowance for people in residential care is out. It's a good clear report, setting out the evidence and making the case well for not taking this critical benefit away. (The 'easy read' version - designed to help people with a learning disability is particularly worth commending.) Thanks must go to Lord Low for carrying it out independently and to Mencap and Leonard Cheshire for setting it up.

We now wait to see whether Maria Miller and the government will take any notice of it. They have set up their own very low profile internal government review so they're obviously not just intending to take the Low Review on board as stands.

The thing that really worries me here and might swing the governments response into making this invidious cut, is the general background media articles and TV programmes that publicize benefit cheats as the predominant face of disability. These media forays put disability and benefit scroungers together, making the two closely associated in the public mind. This sort of presentation doesn't actually accuse disabled people of being benefit cheats, but it does bracket them together - and that's wrong. And it can cause substantial damage.

We need to make sure people understand that real people have real disabilities and desperately need things like Mobility Allowance. If we let this association of disability and benefit cheats take hold, the government could play on this as public opinion being for the cut. These views are out there - see the talk forums, even on the Low Review site itself. However much we know they're wrong, we have to acknowledge the views exist so that we can mobilize opinion against them.

We don't want the image of disabled people tarnishing.

Tuesday, November 1, 2011

Press gang personalization

Reflecting on what I've done recently to get my son's care package back to where it was, I feel a little like I've betrayed myself. If you've read my earlier posts, you'll be aware that I'm not exactly a fan of 'Personalization' - especially when it's presented with a capital P as the panacea in a world of service cuts. And yet here I am, fighting for a personalized budget (albeit a small proportion of his care package).

I'm not doing this because of any sudden change of heart. I still feel it's a rather tawdry trick to present the new order of social care as empowering and embracing, when in fact services are being hacked and the things that you can actually have under 'personalization' are in practice very limited and hidebound.

I'm doing it because there isn't any other option. Personalization is now the only game in town so it's a game I have to play to ensure my son gets the care he needs - and in the end, that's all that matters. 'If you sup with the devil, be sure to use a long spoon.' - well I'm currently crafting the end of a very long barge pole into a small scooped out eating implement. I still don't like 'personalization' as I feel it's a clever con trick to make the public feel social services are 'doing the right thing' and giving disabled people and their carers the means to do things better themselves; when in fact they're simply cutting the money available, excluding more people from services altogether and 'allowing' those left to 'spend' their often reduced personalized budgets on very limited things, under very heavy constraints.

If 'supping with the devil' is the only way my son is going to get his care, I'll do just that. I don't look forward to the meal and I strongly suspect it won't be very palatable. When you're hungry, you tend not to be too fussy about the menu.