Has anyone had problems with their disabilit... - Vasculitis UK

Vasculitis UK

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Has anyone had problems with their disability assessment for benefits carried out by ATOS Healthcare?

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EmmaC profile image
EmmaC

I attended my ATOS assessment with good faith, thinking that everything would be ok because of course, I was so dreadfully ill with unmaintained Vasculitis at the time. As anyone with Vasculitis will know, it can be hard to obtain a correct diagnosis, so when I filled out my 'Limited Capability for work' questionnaire all I had to go on was what I was told initially at hospital. Possible rheumatoid arthritis, and Churg-Strauss Syndrome. I had no knowledge of Vasculitis when I went for my assessment, apart from the 'arc' booklet my rheumatologist had given me, so I took that along with me. I was due to start Cyclophosphamide infusions also, and took along my appointment letter for that with me, along with a hospital print out of all of my medications. My sister drove me to my nearest assessment centre, roughly 20 miles from my home.

She didn't come in the room with me as I assumed she wouldn't be needed. I was assessed by a nurse, what type I do not know. The first thing she said to me was not to believe everything I read in the press, and laughed. I had never heard of the company so I didn't understand what she meant. She spent some time reading through my Vasculitis booklet, as she'd never heard of it.

I sat for about an hour, explaining all that'd happened to me and she seemed sympathetic. During this time I was very faint from the exhaustion of being there, and the assessor aimed an electric rotating desk fan at me. I went through a few vague exercises, such as how well I could stand up by myself, and show how I laid down and got back up again. Anything I couldn't do through pain was taken note of. The questions I was asked seemed strange, and those were: how often did I use Facebook, could I hold an empty small cardboard box and did I have any trouble with confronting people. Nothing about how my illness affected me, although she may have taken information from my initial describing to her about myself.

Finally I showed her my Cyclophosphamide letter, which she photocopied. The last thing she said to me was 'Just to warn you, hardly anyone passes these assessments, but there's an excellent appeals process - you didn't hear that from me though ha ha ha!'.

I left feeling rather confused to say the least.

In the weeks that followed I was confirmed to have Wegener's instead of Churg-Strauss, and I also discovered that Cyclophosphamide was chemotherapy. Researching the assessment, I found out that you're not even supposed to be called in for the assessment if you're receiving IV Chemotherapy, and at the very least be put into the support group element of the benefit. I had to sit tight and hope this nurse knew what Cyclophosphamide was, and that they could see by assessing me just how ill I was.

Oh no. This was not the case. One day the payments just stopped without warning, so I telephoned the Jobcentre to find out why. When someone eventually answered I was told it was because I'd failed my assessment, but they had no information on how much I'd failed. They put in an email request there and then for the decision to be looked at again, I gave a statement over the phone saying I was receiving chemotherapy and although I showed my nurse assessor this, she wasn't qualified enough to understand my treatment. My case went into 'appeal' status. During this time you are still supposed to be paid at the basic rate of Employment and Support Allowance, but I was not. After many many more telephone calls, and being passed through all sorts of departments at the DWP, they told me at the benefit delivery centre that they had misplaced my latest GP's medical certificate. I suggested sending in a duplicate and they said I was welcome to try but they didn't expect I'd get paid. I sent another (and backdated) certificate through, and low and behold I was paid 3 days later. Then my letters came through saying I'd failed the medical assessment, I'd scored zero points. These points were given (or not!) by the assessor, who had said I could manage almost triple the limits I'd given. Those things I couldn't manage to do in the assessment such as bending my knees or touching the floor just by bending my waist, was taken as a refusal to take part rather than being physically unable to! At some point during trying to stand up from lying down, she even had to steady me from falling flat over again as I was so weak so how she couldn't see I was ill is beyond me. Before hospital and diagnosis I was on Jobseekers Allowance after moving home and needing a new job, when I signed on I was told off and tutted at as they said I was clearly too ill to be looking for a job and they shouldn't really be making payments to me under the circumstances. So I just thought ATOS, being supposed health professionals would see it too.

I couldn't stop crying, I kept on trying to imagine going out to work, explaining at job interviews that I' need regular time off for treatment and recovery time, and everything seemed surreal and a nightmare. Just what you do not need when you're trying to fight into remission a terrible disease.

Luckily after a few weeks I had a letter come through explaining that my case had been heard by an independent tribunal, and I was to be placed into the 'support group' straight away with any backdated or missed payments to be made immediately. All has been relatively quiet since then, apart from another questionnaire from ATOS last month, which I sent back and have heard nothing from them since. I am still receiving payments so I'm hoping that they're leaving me alone to try to get better for the time being.

LyndaGould profile image
LyndaGould

Your story Emma is all to familiar but I am really glad your benefit was reinstated. I live in Northern Ireland and we don't have the ATOS assessors ours are regular health professionals. I failed my medical but only found out 6 months later when my benefit stopped. At the medical I was asked many questions about my hobbies, how I got there, what did I watch on TV and I was able to do the few movement tests she asked me to. At that time I was feeling good, I was on a high dose of steroids and had just seen my Consultant who'd told me that I was getting better - So you can imagine I was in good form as well. They never asked anything about the condition or how it affected me and I never thought to say. Like you, I appealled and eventually was able to submit additional information to get 15+ points. I found the whole process stressful and eroding but I think the current climate of cuts means that this is going to be the norm for a time to come. We are the ones who are going to have to work even harder to access the benefit I thought I'd paid into all the years I was able to work...

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