Because my conditions can cause daily variations in state of - not health, I'm not ill - ability? Energy? Mobility? - all of these and more, I was made to renew my claim annually, filling in a form that was many, many pages long, often requiring the same information to be repeated in different ways throughout. This takes literally weeks. All the problems of daily life that I shut my eyes and mind to in order to function through the day, have to be raked up and set down on the online form. It can be saved, but take too long to complete the form, and the .gov website dumps it and you have to start again from the beginning. Not just the problems - the indignities and the dependencies, the reliance on other people to carry out functions on one's behalf that were such a milestone when accomplished as a toddler. Take your deepest fears, your harshest shame, and set them down for scrutiny by anonymous, unbelieving, and faceless civil servants, and hope and pray that your case worker and decision maker actually might care.
So it was when I submitted my renewal claim. My first claim had been straightforward, and I had been awarded full care and mobility allowances. The second awarded full care and medium mobility, again without assessment. The second renewal was to be a whole new boardgame. I was to be assessed at home by a doctor who would conduct a medical exam on behalf of ATOS. That's when the fun and the lies began.
The doctor arrived with a bare 2 minutes of the allotted appointment hour to spare. By this time I was literally shaking with anxiety and apprehension of what was to come. But he seemed sympathetic, was gentle, and seemed to be making sufficient notes when Great Chief White Hair and I supplied answers to his questions. He was so full of empathy, in fact, that on two occasions he told me to stop trying to talk to him as I was struggling so much to form sentences. From that point he would only ask yes or no questions.
The rest of the "examination" followed along similar lines. I was asked to stand up for one minute, which I did with the help of my rise/recline chair and two walking sticks. Brief examinations were made of my wrists and ankles. Questions were asked, and full answers given, regardless of instructions not to speak, by both GCWH and myself. 20 minutes after arriving, including the time spent writing the report in the house and in car, the doctor drove off. He hadn't seen me take a single step, or even try to walk unaided. As he drove off, I collapsed in a heap, thankful that the ordeal was over, and believing that until the letter arrived confirming my new award, I could go back to living life without constant focus on the things I couldn't do, positive and full of fight.
Within a month. I received my award letter. I had lost all my mobility award, and all but the most basic level of care component.