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24 Feb 2013
Post 384: Means testing is mean
I have yet more indignation for this blessed state of ours. Much earlier in this blog I got pretty bloody angry with the ‘pretence’ that this country ‘provides for it’s disabled citizens.
The NHS may have saved my life, but just about everything post hospital has been to do with the tenacity of my family, my friends and myself. State assistance has been negligible – every time they have looked like being of assistance it has been made abundantly clear you have to undergo a ‘means test’. Now as I live in a house that came from my family and my former employer very kindly pays me a disability pension that keeps me in food, heat, electricity and some concert tickets (or some self funded therapy) so I can get out of the house, maintain my pitiful semi-independence and see my friends, the state deems me to be a person of ‘means’ so if I need any help it’s always a big fat NO because I live in relative comfort, basically I'm not destitute enough! For example my carers have to go back to South Africa for a couple of weeks to sort out some stuff at some stage in the not too distant future. Now, seeing as I can’t manage on my own, I need to sort something out. So I got in touch with the operations director of the company that runs the brain-injury care homes that the state had been talking about putting me in when I left hospital in 2008. After a brief to and fro, cutting to the chase was that I could stay in their Battle (in sussex) respite care home for just over £800 a week. Disabled people (and I’d hazard most people) don’t just have that kind of money hanging around, so anyway, I knew the details of Elmbridge council ‘social care’ team, as they’d recently been in touch about a toilet seat raiser they had actually helped me with (fuck, my life is fascinating) and I had written them a polite email asking for their help. Anyway the month long wait for their reply was over the other morning:
I believe your family fund your carers. If they are going away for a few weeks the Agency you got them from should be able to to provide carers to cover their absence.
I hope this answers your questions.
They might as well have written:
‘Not our problem –F*ck off! When your corpse starts to smell the binmen will put you in the rubbish if you’re lucky.’
This was my actual response:
My carers are not from an agency, they are merely family friends who have emigrated from S.Africa. They live upstairs free of charge in return for looking after the house, the cats and me. It is a mutually beneficial arrangement. If they go away (as they have to this time ). I have no cover, I don't know where to look and even if I did, I couldn't afford it. I have no savings. My father is reluctant to do another means test exercise because they are hard work for a man of 75. In short is there any assistance this country can offer!? Sorry if you think I'm losing my temper but I subsist on my pension, I have no savings and my family can't afford to support me - my father helps me with this sort of admin but the information you require for means testing is difficult for a power of attorney to find. Isn't the fact that my stroke has left me a disabled individual enough for you to help?
Perhaps I’m a little low on crawling tact but for some reason it’s something I’ve always run pretty light on but now it’s all but exhausted. Feeling like sh*t 24/7 does that.
Surely the most universally popular political document ‘The Beveridge Report’ which after World War Two was the foundations for the NHS and the Welfare state in Britain makes the case much better than I could that means testing is not right. Means Testing basically ostracises me from the minimum standard of care. We’ve all heard horror stories about rich people using state money when they could use their own. I’m not one of those. I’m not asking for luxury, I’m asking for the bare minimum to survive. I believe that is why I have always paid my taxes. I’ll keep you posted.
The 2nd thing that really got to me was watching a program on BBC2 called ‘The Brain Doctors’ which sees the cameras following the work of surgeons working at the very frontiers of their medical expertise and knowledge. The series is filmed over nine months at Oxford’s John Radcliffe Hospital and follows the daily highs and lows and those of their patients whose lives depend on the doctors' skill so goes the blurb. What struck me is how f*cked we are if anything goes amiss with our brains. It was faintly terrifying to see actual brain surgery. Doctors, Patients and the close families of patients are as brave as soldiers going over the top in the first world war. It is voyeuristically looking into an all too familiar world, it is disturbing and horrific yet compelling and moving viewing (which is I guess why they make these things) and I find it pretty awful that people have been through this because of me.
It was perhaps fitting that my big event this week was taking my parents to see Opera Carmen ‘in the round’ (ie in the middle where there are usually seats). It is a lavish production and quite a visual spectacle. I took my parents to see Carmen in the round at the dome back in about 2009 and that had been a similar production but the Dome as a space was just too cavernous. The Albert Hall is about right.
Firstly, the concept of Opera ie to convey a story through singing is MENTAL, I think much the same of musicals. At least this was sung in English but can you really understand what they’re going on about? All I could figure out is Carmen is a bit of dirty slag gypsy who gets involved with two men and the jilted one kills her in the end. Sorry if I’ve spoiled it for anyone – I like to think I’ve helped! That said, all Operas seem to be total tragedies! I have enough trouble following just talking in films but I suppose that could just be me. So despite not having the foggiest what the plot was for most of it, arguably I lost that years ago I still enjoyed the very recognisable (if you’ve ever listened to radio 4) music, the spectacle, treating my LSPs (long suffering parents) and my mum saying at the end ‘I think that’s the best Opera I’ve ever been to’. It probably wasn’t but it’s nice she said it. Vicarious enjoyment of life. DONE.
That’s not quite it, thanks to my friend Isa for taking me to see Les Miserables at the Cinema on Tuesday. I still know all the words (weird, I have for over 20 years) and it’s transfer from stage to screen has been ok. Russell Crowe as Javert and Hugh Jackman as Valjean (especially) weren’t bad, we’re not talking the cringeworthiness of Pierce Brosnan bursting into song in Mama Mia – thanks again to my mate Isa who is a bit of a hero really.
I will accidentally on purpose not be catching the earnest self congratulatory shite that is the Oscars tonight.
Instead my neighbours, Ian and Tracey came round for wine and laughter. I’m a little hungover today... Thinking about it Ian and Tracey are the best thing that has happened because of my stroke. Otherwise they would never have met. So, something good has happened because of this.