Spartacus Stories

Here is a collection of Stories written by many different disabled people about the impact that DLA has on their lives. It also includes stories of fear about the proposed changes to personal independence payment.

Admin: benefitscroungingscum, Lucia and Lucy
to add your story email us at spartacusstories @ g mail . com (without the spaces) (your posts are there, just being scheduled throughout the day) (can you add how you want your 'name' to appear ta)

Monday, 16 January 2012

What loss of DLA will actually mean #spartacusstories #spartacusreport

Despite Iain Duncan Smith, Maria Miller and all the rest constantly pronouncing that their plans are “fair” and “protect genuinely disabled people”, I fear that the changes proposed will result in me losing all independence. I have MS. I receive High Rate Mobility and Low Rate Care which pays £275.20 every 4 weeks. Without that money, I wouldn’t be able to afford to run my own car, and would be reliant on my partner taking me everywhere I need to go.

At the moment, I can kid myself that I’m not a complete drain on the household, because I can at least take care of the weekly shopping, while he’s at work, or studying with OU. It’s not much, but it’s something. He’s already been forced to sacrifice his full-time degree course when I had to stop work: he plans to become a teacher, and although it’ll take a bit longer, we’re determined that my MS isn’t going to prevent that. It’s impacted enough already on both of us.

Then there’s my medical appointments: GP, physio, dentist, hospital. I usually manage to drive myself to most of these, so he doesn’t have to take time off work. ‘Can’t you use public transport?’ I hear you say. Well, that’s not really an option. We live in a rural area in the North of Scotland. Even assuming my legs were capable of working well enough to get up the steps onto a bus, there simply aren’t that many running out here.
‘Perhaps you could take taxis then?’ OK, but here’s what happened just before Christmas, when the snow was so heavy and our country roads so bad, I couldn’t risk driving. I had my first appointment with the physio, in our nearest town 6 miles away. The cost for a cab there and back was £13.70. The ‘real’ cost of the journey, without using my Disabled TaxiCard would have been £27.40. Of course, my entitlement to the TaxiCard is dependent on receiving High Rate Mobility DLA. Lose DLA, I lose this too.

Looking at my diary for February, I see I have two appointments in the nearest town: the physio and the GP. I also have my six-monthly dentist check-up. It’s in a different town a bit further away (10 miles approx). Then there’s an appointment with the Neurology Consultant in the city hospital – a distance of about 15 miles. Full-price taxis to those four appointments would cost, I estimate, around £170. Or somehow, my partner would have to negotiate four afternoons off with his employer.

But for the moment, I have my wee car, thanks to DLA. I don’t have to worry about finding taxi fares or putting my partner’s job at risk every time I need to go somewhere. Without DLA it’s just not affordable. For now, I can get the shopping done, and get to my medical appointments. I don’t go anywhere else. My social life ended with my diagnosis, along with my working life.

Some day in the future, as the MS progresses, I will no longer be capable of driving. Hopefully I still have a good number of years before that happens. It’s an incurable illness after all, and I accept that as time passes medical reasons will prevent me doing a number of things I currently manage. MS will take everything away from me eventually, but now the government has given me the anxiety that the last bits of an independent life will be taken away as soon as 2013, when DLA is replaced by PIP.

My fear is that with these new proposals I will be assessed by ATOS (or whichever private company the government contracts to do the new assessments) as ‘not disabled enough’ to merit support. Then, effectively, the government will disable me even more than the MS does, by removing my essential means of getting around.

You might think I’m being overly pessimistic. Surely MS and my mobility problems would be recognised and assessed appropriately. The government keeps promising that genuine disabled people have nothing to fear. The evidence doesn’t bear that out unfortunately.

My MS hasn’t yet progressed to the stage that I need a wheelchair. I can get around under my own steam, albeit not very far, and in considerable pain. The muscles in my legs are so tight all the time, even sitting in a chair is agony after about 20 minutes. The drugs available to me aren’t much help. My choice is stark: intense pain, or being sedated. I choose pain, as I’d have even less quality of life if I was ‘knocked out’ continually. I can manage to hobble round the supermarket, supported by the shopping trolley, even though every step I take, I’m in so much pain, I feel like the Little Mermaid after she got her legs. After the shop, I rest in the car for a little while, until I’m up to driving home. Then I’m finished for the day (and often the next day too), as fatigue properly kicks in. So, if I’m lucky, and don’t have a string of ‘bad days’, I usually manage to leave the house once a week. It’s only recently, since my balance has deteriorated further, that I’ve been forced into using a stick. Until then, anyone who didn’t know me would have no idea about the MS. I don’t look disabled.

And that’s where’s my anxiety about these proposals comes from. The plans for PIP are unclear, but it seems the reports of our GPs, hospital consultants, MS nurses and physiotherapists etc. used in determining eligibility for DLA, will no longer be good enough. Instead an ‘independent’ assessment will be used. Like the ATOS assessments used for ESA claimants. Those assessments which the Harrington Review of WCA found had significant flaws.

ATOS assessments don’t take account of pain. They don’t take account of the fatigue I have after even a tiny amount of physical activity. The don’t take account of fluctuations in condition, so the days when I’m even worse than usual, and can barely drag myself to the bathroom let alone any further, won’t count in their computerised tick-box assessment.

So many people have been found ‘fit’ by ATOS, when they’re very obviously not, I have little hope that someone like me whose problems are mainly invisible ones will be deemed as ‘disabled enough’.

I find it astonishing too that in the new PIP proposals we are to be assessed over and over again, to make sure we’re still entitled to anything. I look forward to publication of Iain Duncan Smith’s research presenting his cure for Multiple Sclerosis, as I’m sure neurologists worldwide would find it extremely useful. MS is incurable and progressive, so this is as good as it gets. I’m only going to get worse. If the Rt Hon Member knows better, can he please show us!

DLA recognised the nature of the illness and my award was ‘indefinite’. PIP will expect me to reapply and be reassessed numerous times. The only one to gain from this won’t be the hard-pressed taxpayer, or me struggling in and out of the city on a 3 hour roundtrip for my assessment, it’ll be the private company contracted to assess all of us, no doubt trousering a pretty penny for doing so. Do taxpayers prefer their money to go to people with disabilities, devastating and incurable illnesses, in genuine need of some support, or would they prefer their money to be spent lining the pockets of vultures profiting from people’s misery? I know which one I would choose.

Originally posted here

 Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

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