Please let's have a Red Faces Day instead: You're muffling the cries in the night; by your brilliant generosity you are reaching the parts that government funding ought to reach

Ewan Captain
Friday 12 March 1993 00:02 GMT
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I AM WRITING to thank you lovely people who organised Red Nose Day today, and all the Golden Hearts, telethons and so on; Daddy tells me that you give your time for nothing and that you're all terribly famous. But something's bothering me. I don't want to sound ungrateful for everything you do on our behalf; it's just that sometimes I wonder if you are directing all your energy at the wrong target.

I'm one of the kids you did it for. In my case it's spina bifida, but it could be cerebrally challenged, socially disadvantaged, mentally handicapped or plain poverty trapped. We all meet up with each other quite a lot and we all get lumped together. Another thing that helps us mix - and I know this is not politically correct - is that we generally come from what you call the underclass; we live on the same estates. So I do know a lot of other victims, although I'm not claiming to be a spokesman.

There's Kevin, he's my best friend: his tummy muscles don't work so he poos himself and has to wear nappies - at seven. His Daddy can't get work and they haven't much money. There's Paul: no concentration. Doctors don't know why, but he's terribly slow, well, backward. His Mum's on her own. There's Tracy with a heart defect waiting for an operation, and learning difficulties into the bargain. Then there's Lisa, Down's syndrome, happy as a sandgirl when she's happy, but God, what tantrums; her Mum's on her own with a six-month-old son, her father ran off with her best friend - her Mum's I mean, not Lisa's. I could go on, but you get the picture.

We all need a lot of help. And we get it. From extraordinary people. Dave who drives the bus to the special unit at school, and Margaret who keeps us in order inside, well, they make the sun shine every morning. And teachers like my Mrs Barnett who creates magic from the silliest things, and Dorothy the ancillary who helps Gary with his buttons and cleans up Tracy's bottom when she wets herself. People like Shoba and Pauline who give us exercises for cleft palates, club feet, crook hands, addled brains; counsellors for kids who've been abused or beaten; key workers who attend the mentally challenged and care assistants who provide their home comforts. There are the clerks in offices who help Mum through the 30-page application for Attendance Allowance, health visitors who fight my corner over the provisions of my Statement - which officially defines my needs - and finally, the officers in charge of all these things, cutting corners, manoeuvring figures, all desperately trying to get us what we need. All of them, small saints, unsung heroes, unseen, undervalued - and most of them women.

There's a story I heard in RE about some people who were punished by having to make bricks without straw. Well, that's what it's like in the victim care business. Budgets have been cut to the bone, everything, everyone is under-resourced. Forget the statistics delivered from the box and the dispatch box; they are just clever ways of not telling the truth: if there has been extra money, it has gone on management, and that makes a funny sort of sense, because they've got a very important job to do: they look after the underfunding. They make sure that no one spends too much money and one way to do this is to discourage us from asking for it: forms, procedures, delays, all are deliberate, aimed at putting people off. It's the second rule of Darwin, the survival of the persistentest.

No, in the real world, at the sharp end, at the point of delivery, service has been drastically reduced. Not care, mind. The saints see to that; they just work harder to make up for the shortfall with their devotion, attention, patience - and God knows you need patience for someone like me, though that's not something the great and good notice in their 10-minute photo opportunities. Talking of which, some of the treats you hand out, like meetings with stars and trips to Disney World, well, in the circumstances, it's a bit like offering caviare in Somalia.

Which raises the more exotic targets of your charity. Heavens, if our lords and masters are mean to their domestic victims, their performance in Africa is nothing short of disgraceful. A nation whose financial relationship with the developing world is of one-sided usury - Daddy told me how to write this bit - is barbaric.

And that brings me back to Red Nose Day. I'm a bit worried that it makes matters worse; the better you do, the less pressure there is on government to do their bit. Do you see what I mean? You're hiding the blood in the gutter, you're muffling the cries in the night that might just penetrate ministerial conscience; by your brilliant generosity, you are reaching the parts that government funding ought to reach.

So would you mind if I gave you a few ideas about what you could do next year? Why not call it the Golden Bullet or Red Faces Day and aim it at the authorities. You can still have the razzmatazz, the stars, the acts, the fun, but put something different in between.

For example, you could have competitions between personalities in filling in Statement forms, with comments from a leading stress psychologist; A Question of Care between a team of Masterminds and David Coleman's lot to complete a Disability Allowance application. Then some obvious game shows: The Price is High, in which contestants guess the price of handicap aids, Blind Date for the visually challenged. A special edition of Neighbours to survey how many people have a handicapped one. The possibilities are endless.

In a more serious vein, there could be interviews with ministers to test their knowledge of the systems they run, including a vocabulary test; a Question Time with representatives of the Social Services and Health Ministries on 'care in the community' and who should pay, that would knock World Championship Wrestling down the ratings. A version of Gladiators could pit 'special needs' parents against the professional mandarins of Whitehall; a series of Right to Reply could feature interviews with elected chairmen of health and education committees, explaining shortcomings, underfunding and unit closures to affected parents, and clients cross-examining them - that would put Prime Minister's Question Time in the shade.

And of course you could retain the phone-in format for contributions with a running scoreboard, but instead of money being counted it would be unanswered letters of application, delayed appeal hearings, frustrated visits, unfulfilled Statements, under-resourced therapy units, incomplete care packages, cancelled appointments.

It's the same show, with the spotlight on the careless rather than the carers, the breaks rather then the repairs; network the victims with the abusers, confront the supervisors with the pain they cause. Generate some bloody anger. Put public care on trial. It would be extraordinary television. And in the end, it would be more helpful to me.

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