Sunday, 19 June 2011

Happy Father's Day!

A very happy Father's Day to our lovely Paul, who is so smashing and strong that he has given all of his kids the very best of himself - intelligence, humour, creativity, curiosity, charm and, of course, good looks! And because he has taught everyone more about Maggie just from being a great dad than any medical expert or professional ever, ever could. Tom, Louie, Isaac, Maggie and Alice - they're all very lucky kids.

I'm hopeless with photos and couldn't get a good one with Paul, Maggie and Alice from our Sunday carvery at the pub - so here's one of Paul and Maggie and a little video of Alice (with Paul in the background, so that counts!).

Hurrah for Paul!

Saturday, 18 June 2011

Chair Despair

I mentioned in a previous post that Maggie had been fitted for a special chair and that we were just waiting for it to arrive. Knowing how utterly fucking shit the NHS can be, I made it clear to Maggie's Occupational Therapist that I was worried it would take a long time to come. Can we please ensure, I asked, that this (unlike all of the other disappointments we've had to endure) goes ahead with no problems? Of course, she replied, I'll get on to it straight away.

That was nearly two months ago. In the time since then, we - or, rather Shannon - had also spoken to her on the phone, asking whether the chair had been ordered. (I say spoken to her on the phone like that was just a case of giving her a call and having a chat - we'd already left numerous messages that she didn't respond to. Yet again we had to chase and chase.) We were assured that it was all going ahead and that yes, the chair had definitely been ordered.

Of course, you know where this is going...

Yesterday we were told that the chair hadn't been ordered at all.

Why hasn't it? I asked a woman from a different department. We don't really know, she said, but it's been ordered now. Are you saying, I asked, that it's the fault of Maggie's Occupational Therapist? A long pause. Yes, she said, yes I am.

So we've no idea when Maggie's chair will arrive. It could take months.

Now, bear in mind that this isn't just an inconvenience. This chair is something that will help Maggie's development, both physically and mentally. It will help to improve her life now and her life for the future. As things are at the moment, she has to sit in a chair that just isn't fit for purpose, that is a hindrance to her.

I don't understand how these idiots are allowed to carry on as they do. It's not just the incompetence that infuriates me - it's also the lies and the defensiveness and the buck-passing and the waffling and the way they make a show of understanding our situation by engaging in platitudes and pointless empathising... when all we want from them is to do what they promise to do. When all we want from them is the bare minimum of what their jobs are supposed to be. Yet they fail us time and time again, adding to the pressures of our already difficult lives.

Related, this piece last year from Ian Birrell (who also has a severely disabled daughter):

"Promises of action are followed by a wall of silence, and you end up having to harass and harangue people to deliver things everyone has agreed are needed. Charities tell of wheelchairs taking so long to be delivered the child has grown out of them by the time they arrive."

Tuesday, 14 June 2011

A Quid For Quidenham

Maggie has just returned home from a few days at Quidenham. She had a lovely time and they confirmed that she's sleeping better, is happier, and is making good progress with things like reaching out and interacting with people. Good stuff.

I've said it before, but they do a marvellous job there - without them our lives (and the lives of many other families) would be so much worse. The worrying and depressing thing about that, however, is that they're a charity. And as with NANSA (Norfolk and Norwich Scope Association), they have to rely on the goodwill of the public. Maybe that's one of the reasons why they work so bloody hard and provide such a fabulous service - because, unlike the NHS, they just can't afford to be complacent. Or lazy. Or incompetent. Or arrogant. Or inefficient.

So thank you, again, to Quidenham and the smashing people there.

If you fancy giving them some money, by the way (remember: it's for kids, real-live human being kids who are in the state they're in through absolutely no fault of their own) then please visit their site (below) and donate. Even if it's just a quid.

In fact, I reckon they should start up a campaign called 'A Quid For Quidenham'. Good huh?

(If you're reading this EACH, how about it? Please get in touch if you want me to flesh it out a bit - I do this kind of thing for a living you know.)

Donate your Quid For Quidenham here. Thank you.

East Anglia's Children's Hospices