Thursday, 14 April 2011

Gentleman in waiting.

For the next week, my son and I are in limbo. This is not a new state of affairs, we have been in limbo for some months now. So long, in fact, that it has begun to feel normal, which can't be a good thing. Can it?

It isn't something we can control, and that has been the hardest thing to come to terms with. I for one, like to know what's going on, where I am heading. I make plans, basing them on what I expect to be doing in a month, six months, a year. They might change, be amended. But they form a basis for my life, and give me a sense of security.

Well, it's true what they say. God laughs at the person with plans.

The cloud of uncertainty hanging over our lives is courtesy of three things: Social Services, (SS) the National Health Service (NHS), and the British economy. All of them move very slowly, and take no account of the turmoil their inability to hurry may cause in the lives of us mere mortals. And there's nothing we can do to make them move faster. Nothing at all. Believe me, I have tried.

The problem is that my son needs constant care. He has Prader Willi syndrome, a genetic abnormality that has left him mentally and emotionally handicapped, slightly physically disabled and with an addiction to eating that means, if left unsupervised, he would, quite literally eat himself to death. He is also one of the nicest and most wonderful people I know, and he deserves the very best that life can offer.

Three years ago, he went into a residential home for people with PWS. At the time, he was 26 stone + (That's about 360 pounds) and was morbidly obese, so the NHS paid the home fees, which are very expensive. In the home, access to food is restricted, the diet is strict, the exercise regime exacting and in three years, my son has lost half his body weight.

Yup. He's lost 13 stone (180 pounds). And when you consider his addiction to eating is accompanied by a very low metabolism that makes weight loss even harder than it is for most of us, this is an accomplishment above and beyond. I am so proud of him.

Unfortunately, he is now a victim of his own success. NHS, you see, do not pay for preventive care. When he was morbidly obese, he had a health problem that needed treating, so they paid to treat it. Now, he no longer has that health problem (his food addiction is not counted) and so they will not pay the fees of the home.

They passed the problem on to SS. They don't want it, thank you very much. They passed it back, and for the last few months it has been going back and forth like a ping pong ball, each trying to force the other to pay for the care my son needs. All the time they argue, he stays where he is, which is a good thing, but his future is in a state of flux, which is not so good.

We can plan nothing. Should he sign up for a college course for next term? Will he still be in the home and able to access that course by then? Should he buy things for his bedroom in the home, or is he liable to be packing them up soon?

And for me, things are no less uncertain. Like many writers, I could do with an improved income but it isn't easy looking for a job when one has to say, "Well, yes, I am available for work at the moment, but in three weeks I may be caring full time." I can't plan to go to a seminar or an exhibition because I don't know whether I'll be able to take my place.

Six months ago, thinking I was living alone now, I considered moving from my family home to a smaller place. But if he DOES come home, we'll need the room this house offers. So I don't move. If I am to stay permanently, I will decorate, and landscape the garden. But what if I do that and then he doesn't come home and I am to move?

It really isn't good enough. I appreciate they are making sure everything is done properly, but it shouldn't take several months - nearly a year now. When people's lives are on hold, decisions should be made at a greater pace than this.

At long last, after many false starts, they've agreed to meet next week and decide his future. They may not decide what we would have them decide, but at least they will decide something. And finally, we'll feel as if we've reached terra firma once more.

1 comment:

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