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December 3, 2012

Sorry. My apologies. This is another post about the nightmare of being caught up in systems. Systems that are about support. And by God, I’ve got a full house of systems: the social care system; the benefits system; the legal system. You name a system and it’s probably playing a part in controlling my life.

I’ve never felt so physically unwell as I have in the last two months since the housing benefit problem blew up. I am permanently exhausted; I’ve passed out twice recently and I’ve lost about a stone in weight. I’ve seen the doctor and had the blood tests, and apart from high blood pressure, they can’t find anything else untoward, so it has to be the stress I’ve been going through. For the first time in my life, at the age of 52, I’ve been worried about my health.

This morning, I had a fantastic guided meditation with a friend and I was shocked by her summing up: “It’s appalling Mark. In the last four years, Hillingdon have threatened every single human right you can name”. In 2009, they brought about the end of my marriage by making me chose between my wife and my son. In 2010, they breached my son’s (and therefore mine as well) right to a family life by keeping him away from his home for a year. Now, through their vindictive ( a barrister’s word) interpretation of the housing benefit regulations, they are compromising my home. And throughout the four years, they have abruptly cancelled Steven’s support package so many times, they have stopped me working. (I did a rough calculation and I’ve probably lost about £22,000 in earnings since I’ve been entrapped by the support system). Marriage, family, home, work – pretty fundamental things and all lost or screwed up because I got caught up in the system.

I’ve got a chance next year of earning, for me, a considerable amount of money for a time investment that will fit in with my caring responsibilities. I have 90 minutes free on a Friday night and my plan last Friday was to get cracking on the proposal for this project. However, I got home from work to find an email from the brilliant barrister who has been instructed to deal with the housing benefit problem. It needed a reply that obviously took priority over anything else. On Saturday, I get an interputed two hours whilst Steven does a music session, so adjourned the business project until then. Only, that two hours was taken up having to reply to Hillingdon’s nonsensical response to my appeal; it was completely pointless but unavoidable and another two hours wasted to the system. Tomorrow, I have another two hours free in the morning whilst Steven goes to his water aerobics but our bath is leaking water through the light fitting in the living room. Today, Steven got an electric shock and the lights fused, so that time tomorrow will be spent dealing with the plumber. And that’s it; the 5 1/2 hours when I’m not either caring or working has gone and the business proposal, which could lead to me being almost self-sufficient and away from some of the systems, is put to bed for another week.

The other system that I’m finding difficult right now is the legal system, even though it has been my saviour for the past two years. It’s 18 months since our court case and Steven still hasn’t been paid his damages; he has to wait until I’m appointed his financial and affairs deputy and goodness knows when that will come through. His bed is broken; I can’t swap it with mine as mine is even more broken than his. I have been asking the solicitor for months if a tiny amount of his damages can be released to buy a new bed but I’ve been told that the money cannot be made available until after the hearing. I’ve been praised by a high court judge for my committment to my son but I’m not trusted with a few hundred pounds of his damages until I’m rubber stamped by the court. Another system.

Have you noticed that none of this is about Steven. Despite the meltdowns and the fact that his December anxiety (“Not going on a break to M House after Christmas”) has kicked in early this year, looking after Steven is chicken feed compared to the stress caused by being in the support systems. Steven has now been home for 707 days and I’ve not had a problem with him in those 707 days that I cannot handle; I wish I could say the same for the external input.

I have made a decision though. As soon as the damages are paid out, we’re moving away from Hillingdon. That may be fraught with difficulties and could be a case of out of the frying pan into the fire, but nothing can be as bad as we’ve experienced the last four years. My marriage has gone; I’ll never be able to earn a decent living but I may be able to hold what’s left of my family together. If my health holds, it may even be quite exciting. I can even make a good best interests decision for Steven for the move, despite the upheaval.

Last week, I didn’t go to my best mate’s wedding. As my housing benefit has been stopped, I couldn’t afford to lose two days work and pay a support worker for an overnight and some extra daytime hours. I hope our relationship gets through his disappointment and my shame at letting him down. That’s what life in the system is all about.




From → Social Care

One Comment
  1. What Can I say Mark – only send my love and hugs to you both – xx

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