Making it personal

Sorry for absence of late - the real world took precedence (see below) -

The most personal thing in the public arena for me this week has been Virginia Ironside's comments on BBC (that thank goodness I didn't see, but have read) on how she seems to think it's fine for mothers to smother their disabled children if they're in too much distress. Basically I thought this road had had a firm 'No Entry' sign erected 60 years ago in Nuremberg, but it seems the Daily Mail columnist has forgotten about the Jews, gypsies, homosexuals and disabled people who used to live in Germany. I was getting quite worked up about the care we give our own son and how we try to give him as good a life as we can, and how her comments devalue him, us and society in general, but I think my daughter put it into perspective. Her comments were more along the lines of - 'she's wrong, I can see where she's coming from as someone with no experience of disability having read the transcript in context, but she still definitely deserves a good slap' for being offensively wrong, massively insensitive and having her foot so far down her mouth she's in danger of tripping over when she eats. I'm taking my daughters advice and not going to dignify her comments with any further discussion.

Meanwhile in the real world, our own personal personalisation saga limps on. We have an excellent care package (CQC says so) but CQC can't cope with it's non standard form (it didn't have a problem as CSCI until it changed its own rules), so our care provider has now been told that, good though it is, it will be acting illegally if it continues sending nurses into our home. The care provider can't afford the beaurocratic requirements of registering as a nursing agency for just a few shifts a month, so we could lose an important part of his care package. We're still doing a 'workaround' but a major battle looks like looming which will drag in the Service Commissioners, Health Authority, probably our M.P. etc. etc. - all because the rule maker and enforcer has changed its own rules. The need for care hasn't changed and everyone agrees the current care service is excellent - but it's now going to have to change for purely admin. reasons. One suggestion made was that the problem would go away if he didn't come home - the fact that this would limit what he and we could do didn't seem to have registered. It now looks like we may not be able to have him home for Christmas and have no contingency in place for some nursing sickness. This makes a mockery of Person Centred Planning as well as the theory of the Personalisation. We will of course not be accepting this.

On another front, I've been involved with an early casualty of the current Governments June budget changes. In another capacity as a charity trustee, I was helping another person with disabilities move from the increasingly inappropriate flat she currently occupies to buy her own home with an interest only mortgage. There were lots of problems and complications but we had got there - deposit, specialist mortgage, legal and administrative hurdles vaulted (not effortlessly) when dear Mr. Osbourne changed the way the Revenue calculate mortgage interest for benefit purposes. The change means that she can't now afford it - by an extra £47 a week.

Not personal to me, but very personal to the person involved. A learning disabled person unexpectedly discharged from our local hospital to his carer (a friend of mine) still catheterised. He'd been pushed home from the nearby hospital in pouring rain in a wheelchair, dressed only in a hospital gown. No explanation of the catheterisation or discharge information for after care. When carer rang ward they seemed to have no record of the catheterisation either and no process for removal - it took a number of days to get someone qualified to remove it. I understand a formal complaint is being made. The words dignity, care and absence of, spring to mind.

A minor irritation

When we took son to the hospital last week, he had to go for an x-ray. This is always good for a laugh as his spine shape and heart totally obscure his left lung - where the problem always is, and the hospital can't get the plates in between him and his moulded wheelchair - the shape of his spine means lying on the bed is out.

This time was even better. The Medical Assessment Unit was heaving and grossly undermanned. But they had to call a porter (who wasn't familiar with driving his attendant controlled, powered wheelchair) and insisted on sending a nursing assistant escort as well (who hadn't been told why she was needed). So off we trundled in convoy, with me driving the wheelchair, wife managing the suction, porter in front feeling like a spare part and nursing assistant behind wondering why she was there. They were very nice people and it wasn't their fault - but we really did know where x-ray was.

Why they hadn't provided a siren and a couple of motorcycle outriders was not explained.

Don't get ill if you're disabled

Chest infection has consolidated on one side - so six hours in Medical Assessment Unit to midnight last night and now on intravenous antibiotics. As usual, he emerged from hospital significantly worse than he went in, as he had been stuck in his chair for six hours and the lack of movement had made his chest worse. Unable to toilet him there - no appropriate slings etc., no bed and IV drip took two and a half hours and had to be held in place by us all the time. Asthma deteriorated significantly with stress/conditions, though not fitting too badly - yet. We go back there twice a day for rest of IV for rest of week - joy!

Hospitals don't work for people with disabilities. They're geared up for 'normal' people who are ill and can't cope with disability.

Oh, and after three days without support, still no prospect of a replacement nurse for day care. Don't get ill if you're disabled - and don't get a life either.