Failed by the system

My blogs are almost like buses: you don’t see one for ages, and then two come along at once. In truth, this is a subject I’ve wanted to cover for months, but for one reason or another, I haven’t found the time. The holidays have forced the issue to the forefront of my mind, however.

Christmas is always a bitter-sweet time in the Kenyon household. Sweet because of the extra time we spend together as a family and the joy of Christmas morning; bitter because of the added anxieties faced by my autistic son, Max. His school term finishes a few days short of the 25th, and by this time, he’s glad to be at home. During the run-up to Christmas, his schooldays are disrupted by parties, plays and rehearsals for said plays. His routine, which he prefers to be rigid, is ruined, and he spends the whole of December confused and frustrated. Then, when he’s at home, the turmoil continues, with visits to family members and a host of new toys with which to contend (though we do try not to overwhelm him by giving him fewer gifts than his sister). Inevitably, the days are punctuated by meltdowns, and the last week or so has been a very challenging time for Max and his family.

autism-xmas-stressful

Over the last couple of years, these outbursts have become more violent, and as he grows larger, his aggression is becoming more of a problem. Perhaps the impending onset of puberty is to blame. Most worrying is the fact that much of his ire is directed at himself; he has a tendency, when upset, to bang his head against walls and windows. Of course, we try to thwart his self-abuse, but sometimes he’s too quick, and he refuses to wear the headguard that some of his peers sport. Nowadays he has a permanent bump on his forehead, and I fear that as well as risking his short term health, he will suffer long-term problems.

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Max’s perma-bump

With this in mind, we approached his paediatrician and asked to be referred to Child and Adolescent Mental Health Services (CAHMS). Our contention was thus: although Max’s autism was partly to blame for the triggers which ignited his meltdowns, his extreme anxiety exacerbated his condition. We resolved, after years of resisting the prospect, that medication should be prescribed to reduce his anxiety and prevent, or at least temper, the meltdowns.

We were met, however, by a brick wall of disinterest and apathy. Having battled for a referral to CAHMS for over a year, we were told that they couldn’t help us. In their opinion, Max’s challenging behaviour was caused only by his autism, not by a mental health issue. We argued that if Max wasn’t non-verbal, and he could tell them that sometimes he becomes so upset that he wants to harm himself, they would have no option but to act. His inability to talk means he’s being denied the help he needs, and we can only pray that he doesn’t hurt himself too badly. After a meeting with CAHMS, we were sent away with no solution to our problem. Their attitude verged on callous, their reluctance to listen as maddening as it was disappointing.

frustrated-man

Since Max was discharged, we’ve been told that CAHMS support varies in efficacy depending on location, as does provision for NHS care in general. In short, if we lived in neighbouring Warrington, for example, Max would be better treated. Budgetary constraints are undoubtedly to blame, but therein lies the rub. If the situation becomes too difficult for us to manage, Max will have to go into a residential home. Apart from breaking the hearts of all concerned, this would cost the taxpayer far more than any help we might be offered now. Sadly, this reactive, only-take-action-when-the-horse-has-already-bolted, no matter what the cost to the vulnerable, approach is all too common. We don’t have the means to relocate or seek private health care, or we would do so. I’ve attempted to contact my local Member of Parliament, the Shadow Home Secretary, Andy Burnham MP, but he didn’t respond. It would appear that we’ve reached an impasse. Over the last year my wife has been ill, and she needs more assistance than ever before, but we can’t afford for me to reduce my hours at work. We’re at breaking point.

Mental health is a subject close to my heart, as mentioned in my last blog. Max isn’t the person failed by the system, and as austerity continues in the UK and funding plummets, he certainly won’t be the last. Which seamlessly leads me to my conclusion – my new book, SWIFTLY SHARPENS THE FANG, which tells the tale of an impressionable young man with mental health issues, is now available to pre-order. Like my son, and a lot of people with these conditions, protagonist Joe Travis is failed by the system, and he’s vulnerable to the predatory. SWIFTLY publishes 30th January 2017, and for a limited time it will cost just 99c/99p. If it’s a commercial success, we’ll be obtaining private health care for Max!

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4 thoughts on “Failed by the system

  1. Picked up a copy and hope the book is a big success. I hope you find a way through that impasse. Is there anyone higher up than your local politician or some that are mental health advocates? Seems the subject is pushed under the rug on both sides of the Atlantic.

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    • Hi, Charles! Thanks very much for your support, and I hope you enjoy my book. We’ve almost lost hope of any real help, and we’ve resigned to muddling through the situation ourselves. One positive is that our skills as carers – mine in particular – have improved out of necessity. Perhaps the problem with our local politician is that he’s TOO high up; as Shadow Home Secretary he’s one of the senior figures in the Labour Party. He probably has, in his opinion, bigger fish to fry.

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