I’ve put off writing this for a while now because it’s mentally exhausting to think about what this system has meant for me. It’s been a very difficult year since I was first sent the ESA50 and only now do I feel able to put into words what I have been experiencing.
It was just under a year ago that I was sent the ESA50 for my migration onto ESA from Incapacity Benefit. From the moment it dropped onto the door mat my heart filled with dread. I think so many of us have heard the ATOS horror stories over and over again so that even the sight of that brown envelope coming through the letter box is enough to fill us with panic.
It took me quite a while to fill in the form. My answers were typed as I can’t handwrite for long before pain kicks in, and I was very reliant on my husband’s support. Most of the questions didn’t fit my illnesses and so it was a case of trying to bend them to fit my conditions. Meanwhile I was constantly aware that having admitted I could push a button I was already in troubled waters. Eventually we got the form filled in. At the back I had requested a home visit as I’d been bedridden for the month previously and knew I would not be able to get to a test centre.
I spent the next few weeks constantly aware that any day now I would get my appoint through for the Work Capability Assessment [WCA]. During this time I experienced bout after bout of Norovirus and significant problems with my blood meaning that I was feeling physically worse than I had in a long time and spent most of my time unconscious and in pain. My GP had called me to check details about where my health was at for filling in the form she had been sent. Thankfully I’ve always had a sympathetic GP who understands me and my illness well. Eventually the dreaded letter arrived but against expectations they were giving me an appointment at one of their centres. My husband duly called them to explain that there was no way my health was up to going to one of their centres- I hadn’t left the house at all in weeks. I’d barely left my bed!
This first telephone exchange with ATOS was polite and the call handler seemed to understand our position. We were instructed to request the GP send a letter explaining that I was unable to get to the centre and why. My GP faxed them with the desired information and we waited to hear back from them. A fortnight later another letter arrived. It informed us that I had been denied a home visit and provided me with yet another time for an appointment at their centre. They did offer me a taxi. So my husband called them again. This time they were less helpful but gave us another department we could talk to within ATOS with whom we could discuss the situation. We were told to wait for a further letter to arrive whilst they looked into why this had been denied. The next letter arrived, it was another appointment for a medical at a centre further away from the one previously offered. My husband called again. This time the call handler was very abusive. We explained the situation to him and we were told that I would be referred back to the DWP and lose my benefits if I didn’t attend the appointment given to me. It was explained that I had “cancelled” too many appointments already. We tried to tell him that I hadn’t cancelled a single appointment; all cancellations had been made by ATOS whilst they were supposedly trying to rectify the situation over me having a home appointment. Instead of listening to anything we had to say he threatened me with giving me an even sooner appointment.
We called the DWP and explained the situation. Later that day a chief decision maker called us back. He told us he couldn’t understand why they wouldn’t give me a home visit and promised us that he would tell ATOS that they should do this. A couple of weeks later another letter arrived this time stating they had decided I wouldn’t need to provide medical evidence for not attending before and yet giving me yet another appointment at one of their centres. We called again, the call handler was at least polite, but informed us that their hands were tied. We called the DWP again. They didn’t know what was happening with ATOS. ATOS were told to either give me a home visit or to refer it back to the DWP who would make a decision simply based on the form. ATOS sent another appointment at another centre. We called the DWP again who said that it was with their scrutineers and that they would call us back. They didn’t, we called them again. They’d decided that I had to have a medical and all past decisions didn’t seem to matter anymore. Now I wasn’t even being offered a taxi. We spoke to the DWP and ATOS over and over again and eventually gave up. They wanted me to perform the impossible and there was nothing I could do about it.
A few weeks later a letter from the DWP arrived. It was a decision about my claim. Over 6 months after it had all begun. I had been placed in the WRAG without ever having a medical. I was to receive Contributions-based ESA for 12 months at which point I would be moved onto income based ESA. A few weeks later an appointment arrived for my first appointment with my work advisor at the Job Centre. I still wasn’t feeling well but the warmer weather had helped to keep the germs at bay and so I managed to get to my first appointment. My advisor asked me my skills and qualifications. I explained that I have a First Class degree in History. My skills are critical thinking, research and writing. These were dismissed right away as being utterly meaningless. She asked me questions about my health and decided I was incapable of work. She wanted to know if I had skills such as sewing so I could take in other people’s sewing for a living. I explained that I make artworks and had wanted to enter into silver work but didn’t see that it was something I could realistically build a career upon. A career was immediately filed away under “ridiculous notions”. No, what I needed to do was to make a tenner every now and then as a tenner is better than nothing. With that she gave me my first assignment as a job seeker- find out about silver work. She also informed me that as my husband works 37 hours per week, his income was irrelevant- all they needed to know was hours worked, I would not be entitled to income based ESA when the contributions runs out in 10 months’ time. So I received my marching orders for 2 months and off I popped, lost in the knowledge that I’m too well for financial assistance and too sick to work- or god forbid, entertain the notion of properly home working. In 10 months’ time my family will be entirely reliant upon the wages of just my husband who also happens to be suffering with chronic illness. We will barely have enough money to pay our rent, council tax and bills but will be just above the level of getting any meaningful support such as housing benefit.
Where do I go from here? I just don’t know. I’m feeling pretty hopeless at the moment. We have a child with autism whose needs cost us, what adds up to be, a significant amount of money due to there being no funding available for equipment. I regularly have to order in take-aways as I’m too ill to even go into our kitchen, let alone make dinner for the kids when my husband is at work. I pay people to support me with various tasks. How we will pay for the added costs related to our health problems is beyond me, they far exceed the amount I receive in DLA. I can’t get help to find work, yet I can’t get any help with being unable to work either. We knew that when the Conservatives entered into power things would become rather hopeless but we’d also held onto the idea that something would come up to save the day. Now I’ve got 10 months to try to find a lifeline that enables me to work from home or else I have no idea what we can do. It’s silly, a part me has always resented being reliant on incapacity benefits, maybe even a part of me had wanted to be refused them one day so that I would be offered help to find work, there was a romantic notion that it would almost be a liberation. But no one wants to help me and if there is a light at the end of this tunnel it is a warning light that we’re about to reach an untenable position.
Please visit WoW petition http://wowpetition.com/ and find out what they’re up to and sign their petition and stop the government from treating people with disabilities in this way.