Ever since claiming Employment and Support Allowance, I’ve worried about being called to a Work Capability Assessment. A few weeks ago, a letter marked “Atos” dropped through my door. As I’d feared, it instructed me to attend for WCA at my nearest assessment centre.
Knowing how anxious I was my partner, Tom (a senior NHS manager), arranged to take the day off work so that he could support me. Before we set off we agreed, following a suggestion from a bipolar friend who had recently undergone his own WCA, that Tom would not only sit in, but would take notes of the assessment. We were both well aware that general healthcare professionals don’t always have a good understanding of mental health issues, so we planned to ask the assessor their name, qualifications and experience in mental health at the start of the interview. Again on the advice of my friend, I had written a letter outlining all the ways my condition and its treatments disable me and limit my ability to work. Atos asked me to bring my passport (as apparently I would need to prove my identity), and all the prescribed medicines I take.
The “nearest” assessment centre was about an hour away, and a brisk 10 minute walk from the nearest car parks and tube stations (I note from the map enclosed with the appointment letter that it is also at least as far as that from the nearest blue badge disabled parking spaces). We entered the ground floor reception, where a woman using a crutch was leaning on the front desk, waiting while a man – clearly her carer or advocate – spoke on the phone. He was impeccably polite, despite the fact that his side of the conversation suggested he was getting nowhere. “I understand that, ma’am,” he was saying, “but you see this is the third time this has happened to her. I just need some kind of undertaking from you that this information will be passed to her local Jobcentre. Yes…yes, I am speaking on her behalf. If I could just have your name, that would be very helpful, in order to make sure this doesn’t happen again. I do appreciate that, ma’am, but you see…” and the conversational loop would begin again.
The receptionist appeared to be dealing with a problem; it seemed some clients had been instructed to come at the wrong time, causing problems for the appointment system. She asked us to wait a moment, then took a pile of files behind a partition, from which we heard audible groan of stress or despair. When she returned she smiled, all professional again. She asked for my passport, made a note verifying my identity, and asked us up to go up to the first floor and sit straight down. We took the lift to a waiting area, where another receptionist sat behind a thick plate of glass. She was evidently shouting when she asked us to “JUST TAKE A SEAT!”, but her voice was strangely muffled; there was no grille or aperture in the glass to allow her to communicate with clients. The glass thing seemed especially odd as there was no barrier at all in front of the downstairs receptionist. Could the waiting area be that much more risky for staff than the reception? We sat and waited by a poster-sized version of the Atos customer charter, emblazoned with the company’s logo, a quizzical angelfish. The charter explained that “customers” would always be treated with respect, and as an individual, and would be listened to.
A heavy door opened and my name was called out, softly, so that for a moment I wasn’t sure if it was me they wanted. The assessor, who looked very young (mid twenties, max) took us down a corridor to a consulting room accessed using a keypad, which he carefully shielded from us. There wasn’t much in the room except a desk, three chairs and a computer. The assessor sat in front of the monitor, and we took the chairs behind it. Tom got out his notepad and pen. The assessor was silent, looking down at my file. I had the distinct impression that he hadn’t had time to look at my case in advance and was playing catch-up. Without raising his eyes, he began, “OK, so you have been asked to come here today to undergo an assessment-”
Tom politely cleared his throat. “I’m sorry, and you are…?
The assessor said, “My name is Maxwell,” but then looked up from the file and noticed how Tom’s pen was hovering over the notebook. “Who are you? You can’t take notes,” he said, flustered.
Tom looked at me, and back at Maxwell. “What do you mean, I can’t take notes?”
“You are not allowed to take notes about her assessment.”
Assuming there was some sort of client confidentiality issue, I grabbed the pen and notebook. “Fine,” I said, “Then I’ll take the notes. Now your name is Maxwell…?” I waited for him to tell me his family name, but instead he shook his head.
“You are not allowed to take notes,” he repeated.
“Wait a minute,” I said, looking at Tom and then at Maxwell and back again. “Wait a minute! You’re telling me that I can’t take notes on my own assessment? On a healthcare assessment that’s about me?” I was flummoxed. I tried to throw logic at the situation. “Look, if I go to the GP, I sometimes take notes. If I go to see my Consultant psychiatrist, I certainly take notes. I just want know the full name of the person who’s assessing me, and what their professional background is. That doesn’t seem much to ask.” I thought back to all the times I have given my full name to clients in professional practice. It’s information I’ve shared willingly with men convicted of extremely serious violent or sexual offences against women; with parents of children I am about to recommend should be placed under Child Protection Plan; with young gang members living half an hour away from me. In many public sector roles, in fact, I have been required to wear a name badge. I have always introduced myself, giving my full name and professional qualifications, because people have a right to know who is undertaking the assessment and making professional judgements about them.
Maxwell shook his head. “You can’t notes. You can ask for the interview to be recorded, but you have to ask in advance.”
I was becoming frustrated. I got out the leaflet telling me “what I need to know” before attending an assessment. I flicked through it. “There’s nothing in this leaflet to say you can’t take notes, or about asking for a recorded interview. How are we supposed to know if you don’t tell us?” (Since the assessment, I have become aware, via the Where’s the Benefit blog, of just how difficult Atos make it for claimants to record assessments even when they request it in advance – it’s basically a non-starter.)
Maxwell kept trying to state the rules about notes. I continued telling him that I intended to take notes on my own assessment, and that it was utterly reasonable for me to want to know who he actually is and what his training is. I kept having to say, “Let me speak,” because he was talking over me by repeating the rules. Around the time I started saying that I knew huge numbers of cases went to appeal after WCA, and that I wanted dates, times and names in case I should need to appeal at some point in the future, Maxwell suddenly said that he could not work with us anymore, because we were being “very aggressive.” Tom and I, with our combined years of frontline experience in the NHS and criminal justice, actually laughed in disbelief. I was thinking of the times I have been kicked, spat on. I have been called a “useless c*nt”, a stupid bitch, had fingers jabbed in my face. Huge men have stood up and loomed over me (I’m 5’ 4”), controlling my space and blocking my access to the door, enjoying my fear. If Maxwell considered me wanting to challenge nonsensical rules an example of a client being “very aggressive”, I could only assume he hasn’t worked in the public sector very long. He was up on his feet anyway; he had decided we needed to be seen by another assessor. Having no confidence in him, we agreed, and followed him out.
Back in the waiting room, Tom went up to the glass. “I’LL HAVE TO COME ROUND TO THE DOOR, I CAN’T HEAR YOU!” mouthed the receptionist. She opened the heavy door. “I’d like to know how to go about making a complaint,” said Tom.
“We should have leaflets downstairs, but we’ve run out,” the receptionist said apologetically. “She might still have some envelopes, I don’t know. There is a phone down there, though, with a number you can call.” I thought back to the polite advocate on the ground floor. A lot of what we’d overheard was making sense now.
“It’s a shame Kafka isn’t alive to see this,” I said to Tom.
My name was called again, this time by a statuesque woman with a facial expression which suggested that she was not in the habit of taking crap from anyone, and had already marked us down as troublemakers. We were shown into a much bigger consulting room (did this mean she was a doctor, rather than a nurse?) and again sat down behind the computer. “OK, so I am Marjorie.” This felt like a better start; at least she’d volunteered her first name.
“Marjorie…?” enquired Tom, pen poised.
Marjorie fixed him with a steely glance. “And who are you?”
He replied, “I’m Tom R________,” with heavy emphasis on his family name. “I’m her partner and carer.”
Margaret ignored the hint and offered no further information about herself. She looked at the notebook, and announced, “You have to ask me whether you can take notes.” She sat back in her chair.
“Wait a minute,” I said. “I’m confused. We’ve just come out of another room, because that assessor wouldn’t let us take notes. So I’d assumed that we would be put with someone who would allow us to take notes, but now you’re saying we can’t do that…?”
She shook her head. “I’m not saying you can’t take notes. I’m saying you have to ask me before you can take notes.”
Maxwell had been adamant we couldn’t take notes at all. Now we could take notes if Marjorie said so? “We have to ask you?” I repeated, checking I understand this move of the goalposts.
There was a pause. Tom asked whether, if we asked to take notes, Marjorie would be like to say yes. “You have to ask me first.”
Tom asked, “Marjorie. Please can I take notes?” I couldn’t look at him. Hearing my partner, someone with line management responsibility for senior NHS clinical staff, asking this unidentified healthcare professional to take notes, like a child asking the teacher to use the toilet, was too surreal.
“Yes, you can.”
What rabbit hole had we fallen down?
Marjorie now explained that she’d be entering information directly into the computerised assessment tool, so we shouldn’t think she was being rude if she didn’t maintain eye contact (again, more positive). She pulled the Limited Capability for Work questionnaire from my file. “Is this your handwriting?” she asked, thrusting it under my nose. I explained that, no, an advocate at my local disability rights centre had filled it in for me. Marjorie stared at me, flipping to the page where those filling in the form on behalf of a client are supposed to enter their details. “Why haven’t they written their name here, then?” I had no idea what to say. I had trusted the advocate to complete the form properly, since her knowledge of the forms and of the system was so much better than mine. I had no way of accounting for any omission on her part. I offered to give her the advocate’s details, but Marjorie moved on.
Now we were onto the assessment proper. Marjorie began asking about my where we lived, what floor our flat was on (of no relevance to mental health) and who lives with me. Tom told her we lived there as a couple. Next she asked me about diagnosis and how long I had been unwell. She asked if I had brought my medication with me, so I got out my antipsychotics, my lithium, my diazepam, and the meds for constipation and indigestion caused by the quetiapine (requiring a humiliating explanation of my problematic bowel function). I spread the boxes and tubs all over Marjorie’s desk, and she recorded each drug name and dosage on the computer. She suddenly stopped in her tracks, looking over at Tom. “Oh – those notes I said you could take? They’re not to be used for legal reasons, OK?” We nodded. What legal purposes did she think we would put them to?
The computer prompted Marjorie to ask me if I had children. I said I had two. Her head snapped up; the steely glare again. “I thought you said only the two of you live at home?” I explained that my children lived with their dad for the majority of the time, and that this too was a consequence of my illness. By now I was beginning to feel that any claimant who did not “have their story straight” would be in trouble, and that no quarter would be given to the confusion and forgetfulness induced by many mental health conditions or mental health problems.
We moved on to when I last worked and what I was doing when I became sick. Explaining the circumstances of my sick leave, I started to cry. I’d thought I was over all the feelings of loss and disappointment about losing first my managerial role, then my role as a frontline professional; clearly I was not. Marjorie seemed to soften a little. “Do you have any tissues? I’d offer you some, but we only have hand towels… Would you like a glass of water? Do you need a minute?”
“Better to carry on,” I said. “If we wait for me to finish crying, we could be here all afternoon.” I was only half joking.
We began to go through all the ways in which bipolar disorder and my bipolar meds affect me. Marjorie wanted to know about an ordinary day, what the pattern was, how I coped. I found I had to answer every question with, “it depends.” She asked me about sleeping, about getting up, about dealing with money, about cooking. For every question, I could have given at least three answers: one for a high, one for a low, and one for a “good” day when I just about cope with the sedation, sleep problems and bowel problems. Marjorie seemed to find my imprecision frustrating (presumably because it was difficult to enter onto the computer). “Yes, but,” she said, “we all have good days and bad days.” Tom and I were not at all convinced that she understood that a bad day for a person with a severe and enduring mental health problem is nowhere near the same as a bad day for person who is mentally well. And all the time I was crying as we talked.
Suddenly Marjorie announced that the computer assessment was over, and asked if there was anything else I would like to say. “Look,” I said. “You’ve been asking me to tell you about an average day. I can’t tell you what an average day is like. That’s the whole problem. On a Friday, I can make a plan to meet someone or do something on Monday. On Monday, I might well have to text them and say I can’t go. It’s the unpredictability that’s so disabling. I would love to get back to work, but I can’t because I never know how I am going to feel. And then the pattern of my illness has really changed over time. Do you know about the difference between bipolar I and bipolar II?” Margaret said that she did, but offered no information as to her understanding of the terms. “When I was younger, my condition was much more like the pattern of bipolar II; I had lots of depressions, which lasted months at a time, and then smaller highs that I probably didn’t even realise were highs. Whereas now, it’s become more like bipolar I. I have a lot more highs, and it’s taking me a while to learn how to deal with that. In the last couple of weeks, I’ve started having borderline psychotic symptoms, really horrible paranoid beliefs. And that’s completely new for me, so I have no idea how to deal with that.”
Marjorie appeared to be actually listening now (too late?). She asked me if I had any additional paperwork I wanted included in the file, so I offered her my letter, and showed the medical certificate signing me off until late September, which she suggested I ask the downstairs receptionist to photocopy. “Well, I wish you all the best,” she said, sounding warmer than at any point during the interview, “I hope things improve for you. Especially as you have children.” And just like that, the assessment was over and we were back out in the waiting room. I continued to cry in the lift. I cried in the downstairs reception, as Tom got the certificate copied and obtained an envelope (it was true, there were no leaflets/forms) for the Atos complaints department. I cried as we walked out of the building and into the rain. I was crying because, just as when I went to the Occupational Health doctor, and just as when I had my last sickness review at work, I’d had to summarise exactly how disabled I am. Only this time, I had had to do so for someone who wouldn’t even tell me whether they were a doctor or a nurse, someone who got to hear about my paranoid thoughts, my pain at not being to care for my children fulltime, and my embarrassingly disordered bowels, but wouldn’t even tell me their family name.
As soon as we got home, Tom wrote a blistering (and lengthy) complaint letter to Atos. I was too nervous to blog about our experience right away, worrying that it could be considered a further act of “aggression” and lead to my Employment and Support Allowance being stopped. As it is, because I am on contribution-based ESA, I am only entitled to a year’s money, and that year is in up in October. It would probably be almost as cheap to just pay me the remainder, rather than run a WCA with two receptionists, an assessor (or two), administrative support and Jobcentre plus decision making and any possible appeal. I’m still awaiting the outcome, but I’m not scared anymore. The WCA felt like an attempt to try and intimidate me, and for a week or so, it worked. But no more.
I have not used the real names of the staff members involved.
From Atos Healthcare’s website FAQ on QCA:
“Notes can be taken during an assessment by you or your representative. The notes will only be for your use and will not be forwarded with the medical report to the DWP.”