Saturday, 8 November 2014

My ongoing struggle with the DWP and ATOS - a true story about how sick and disabled people are treated in the UK

Well, as you will all know as I mention it a lot (sorry about that, it just takes up a large chunk of my life so it creeps into posts!, I have ME/CFS. Despite being ill for a few years I hadn't applied for DLA until 2012. I was given a 12 month award, and was sent a renewal form in the early months of 2013, ready for the award end date in July. I filled out said form as soon as it arrived, posted it, and promptly put it to the back of my mind for a while. We heard nothing as the months passed, we started to worry as time passed, because we relied on that money to survive.

Ian is my full time carer, if he ever managed to actually find a job (he's been trying to find one for over 2 years to no avail) I'd be trapped at home alone. I fall over, with depressing regularity, and Ian has to catch me. He has to help me get up, help me walk and stand, help me to the bathroom, carry things for me when my muscles fail, massage my limbs when the muscles spasm or when I get as stiff as a board. Suffering from sever anxiety and depression, I also need his presence as reassurance that I'm safe. If someone knocks on our door I panic, if there are roadworks or people talking in the street I panic. When he's out I'm in a state of, well, pretty much terror. He also watches over me during the times when i need to sleep constantly, because it scares me so much when I can't stay awake, no matter how hard I try. I need him constantly. All of which I hate with a fiery passion, because naturally I am an extremely independent person, and I get painfully frustrated by my
inability to cope alone. 

Both of us hate the fact that we're not out working, earning good money so that we're comfortable. Believe me when I say that we can't live the life that The Daily Mail says benefit claimants do! At the moment we are surviving on just over £400 a month. As you can imagine, that doesn't even come close to what we need to survive. 

The end date for my DLA award came and went. No matter how many times we tried to contact the DWP we couldn't (we can't afford to top up our pay as you go phone, nor can we afford a land line, so we couldn't phone them up so easily) we got nowhere. Eventually, at the start of 2014, we admitted defeat. We knew we weren't getting the DLA, and, when the DLA stopped, so did Ian's Carers Allowance. We decided to start a brand new claim, but now the benefit is called Personal Independent Payment (PIP). Apparently the Conservatives think that by changing the name so that includes the word 'independent', people will suddenly stop being disabled, their illnesses and issues will disappear, and we can all walk, unaided, into all the non-existent jobs they keep telling us about. Yep, my sarcasm may be leaking a little there, but you get my drift. When I applied for DLA I had an assessment by an ATOS employee. In case you don't know, ATOS is a French IT company which the British government, in their infinite wisdom, chose to conduct examinations of the sick and disabled, and give them marks according to a set of guidelines which determined just how ill or disabled someone is. There are many horror stories of truly ill people being treated awfully, some have died as a result of their decisions. I also had to undergo an assessment when, once again, the Tories decided to needlessly faff about with a benefit, changing it from Incapacity Benefit to Employment Support Allowance (ESA). ESA has different levels, those deemed a bit ill or disabled are told that they need to attend work focused meetings, so that they can get a job which will work for them (barf)....because we all know how easy jobs like that are to come by don't we? How many employers are willing and able to offer jobs to people with conditions which may differ on a daily basis. Who may be well enough to work one minute and too ill the next, or an employee with a physical or mental impairment which means they may not be able to do everything the job entails. Yup, dime a dozen. There's also the Support Group, which is where I was placed, where they put people who are too ill to do any job. Luckily, the nurse I saw for my ESA assessment was wonderful (and the assessment took place in our town centre, as we have no car and I can't cope with public transport, anywhere else would have been difficult for me), very understanding and empathetic, she saw how terrified I was (I'm not good with new places, people, unknown situations, noise, space, not enough space....basically, I'm scared of the world). She saw how much I feared being told I wasn't really disabled or ill enough to qualify, as I knew that if I tried to go back to work I would break and never be right again. She didn't make me try to do the physical tasks the assessment demanded, as it was blatantly obvious that I couldn't do them. I was one of the lucky ones. For my DLA assessment however, I was less lucky. Firstly, the assessment took place in Manchester City Centre. Which is a long way from where we live, not somewhere Ian could push me in my wheelchair on foot. Luckily for us I have a wonderful family and my dad drove us there and waited for us. We went in to the appointment, which started over an hour late which steadily increased my anxiety levels, and faced a very unfriendly seeming man. He asked me questions without really looking at me, he didn't notice my anxiety or the way I clung to Ian for dear life. He asked if I could walk, I told him that I couldn't walk unaided. He decided to make me try anyway. Ian helped me out of my wheelchair, because I can't get up unaided either, and I stood, shakily, and held on to the desk for dear life - as he didn't want Ian to help me. He kept badgering me to walk, despite the clear evidence that I couldn't without help. Then he wanted me to get on the examination table....I'm pretty short, so it involved a stepping stool and Ian pretty much lifting me on to it. When I finally lay down I was fighting back tears, a mixture of pain, frustration, exhaustion and humiliation. Ian told me later that the colour simply drained from my face, and it was blatantly obvious I was in a lot of pain. The assessor wanted to look at my legs and feet. Now, taking a shower is exhausting enough for me without even attempting to shave my legs. They haven't been done in a couple of years! Ian would do them for me, but that feels like one humiliation too far for me. So, I wear jeans all the time. He wanted to see my knees for some reason, but the jeans wouldn't roll up enough. My legs, ankles and feet swell up quite a lot, especially after exertion or if the muscles and whatnot are extremely bad that day, but he sounded pissed that he couldn't see my knees - which struck me as odd but what do I know? After I managed to get off the table, again mostly thanks to Ian, the assessor seemed to thaw a little and thanked me for trying to do what he asked. He apologised for causing me pain but he had to do the stuff on his check list. I've been brought up well, so I was polite throughout the appointment, no matter how much I wanted to scream and lash out, so I accepted his apology and we left. I held out no hope that DLA would be awarded, but a month or so later we found out that I'd been awarded the higher rate for mobility and the middle rate for care. We were over the moon, as we knew the extra money would change our lives. Ian was able to claim Carers Allowance while I was on DLA, and our lives stopped being quite so stressful, as we could afford to live! When we lost it, we knew we were screwed!

So, after accepting defeat in the fight to get my DLA renewed, we started a PIP March this year.....almost 9 months ago.....and this week we finally received the first letter to acknowledge they'd received it. We then got another letter with an appointment for an Manchestet City 10.30am. So we have to go through it all again! I'm a mixture of happy because we've FINALLY got an appointment, terrified because I have to survive another one, and that if they decide I don't qualify I don't know what we'll do because we can't cope on the little money that we have and furious that they're making sick and disabled people jump through so many hoops just to get help. It's exhausting, life already feels like a battle each day, then you add on the fight with the DWP and ATOS and a lot of people can't cope and give up.....which is exactly what they hope people will do. It feels like they're trying to catch you out, prove that you're lying and are a benefit cheat. Before you even start trying you know they're judging you and looking for ways to discredit you in order to fill their quota. It's incredibly demoralising. 

My appointment is on Monday 17th November.....I'm terrified and not sure how I'm going to get through it, and knowing that if I 'fail', my husband and I can't survive much longer without money.

Sorry for this epic, rambling waffle of a post! I just felt like I needed to share my experiences and feelings, in the hopes that someone understands, or to help someone in the same position who needs to know they're not alone.

Has anyone else experienced anything similar? What do you think of the benefits system? Any advice for me, or anyone in the same boat? Please, leave me a comment below.

Thanks for popping by!



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