Yesterday I arrived home from a very difficult time away to find a Department for Work and Pensions decision letter following the painful and humiliating Atos Work Capability Assessment (WCA) I underwent in July.
Before I say any more, let’s just review how I’ve been during summer 2012. In the first half July, I was very anxious, and found myself battling for the first time with what I expect my Consultant will call “paranoid delusions” (although I am referring to them “untrue beliefs” for now). Throughout that month, I suffered with digestive problems that made me anxious about leaving the house. Initially I had one lot of problems (extremely slow digestion) caused by the antipsychotics I take, then subsequently opposite issue, caused by the meds prescribed to address the first problem. I continued to find it difficult to get up before about 10am due to the sedating effects of my medication.
By the start of August I was hypomanic, but as mid-August and our family holiday approached, my partner noticed that I was exercising increasingly poor decision-making and moving into mania. I increased my medication yet again, and tried to avoid any activities that might feed the high. However, once on holiday my mood shifted from elation into dysphoric (miserable, panicky, agitated) mania. There were many days when I felt trapped in my room, unable to face even my own children, let alone leave the villa. During my time away I frequently felt suicidal, and my partner had to confiscate my meds and monitor me frequently to ensure I didn’t act on my feelings.
With all that going on, it would be fair to say that over this summer I have had less, not more, faith in arriving at a period of recovery/remission. My symptoms have been so pronounced that is difficult for me to imagine how I could ever work for an employer again. Actually, I am technically am still employed. It’s just that on the advice of an Occupational Health Consultant that I am profoundly disabled by my condition, my employer is in the process of dissolving my contract. In my current state, I am no use to them.
Despite this, the Department for Work and Pensions has assessed me as being fit for work. Not only that, but after my WCA, an appointment through which I sobbed as I described how severely my life is limited by my condition, I scored zero points out of the 15 necessary to remain on Employment and Support Allowance (sickness benefit). Despite submitting a lengthy letter detailing how my condition and my meds affect me, letters from my Consultant showing ever-increasing levels of medication, and a medical certificate recording me as unfit for work until at least the end of September, my benefit has been stopped.
All points are awarded (or not) based on the findings of the Atos HCP (Healthcare Professional) during the WCA, which the Decision Maker combines with any reports and the Employment and Support 50 (ESA50) form I filled out back when I first claimed. The ESA50, which I completed with the help of an advocate, explained how bipolar disorder affects my life and that the effects vary according to whether I am well, depressed, elated or experiencing dysphoric mania. Points are awarded across 7 “functional areas” which supposedly assess your ability to function in the world and therefore your ability to work.
Communicating with people and getting around safely
“Ms W,” says the decision letter, “advises being able to communicate with people and getting around safely varies. She advises when she is sedated she can’t find the word and when she is manic she speaks too fast and has pressure of speech. She advises she has tunnel vision when she is anxious. At the WCA, Ms W advised the HCP (healthcare professional) that she had no problems with vision or speech. I therefore awarded nil points for these descriptors.”
So if I can’t see to travel safely or communicate properly on any other day, but manage to attend WCA as a one off because my partner was able to take time off work to drive me there and support me, I’m fit for work. Well, I look forward to my partner’s employer releasing him to take me to work and sit with me on every bad day to make sure I can get to and remain at the office.
Awareness of hazard or danger and initiating actions
The Decision Maker notes my ESA50 explanation that I am not always aware of everyday hazards due to my sedating medication, that when I am manic I can do things without thinking, and that when I am depressed I can barely get out of bed. However, because I said at WCA that I was able to wash and dress unaided that week, had my own bank account and could meet a friend for coffee most weeks, and because in the HCP’s opinion my mental state examination “was within normal limits”, I was given nil points. What I find particularly disturbing is that I sobbed throughout most of the assessment, and was visibly anxious and distressed. This is evidently what Atos considers being in a “normal” mental state.
Either the HCP did not record a lot of information I supplied at the WCA, or the Decision Maker has ignored it. For example, I explicitly stated that when I am manic, M has to take over some of my financial affairs, and that if I make an appointment with a friend for a cup of coffee, a) it has to be someone who knows me and my condition well, and will understand if I cancel at very short notice, and b) it has to be somewhere very local to me, preferably my own street. I also stated that my medication is so sedating that I need to spend around 11 hours in bed each night (just as a point of interest, my current employer considers a 2 hours commute each way within London to be reasonable, so supposing I could leave the house by 11am, I should arrive at work about 1pm. Totally acceptable, right?). It seems that in the basis of me saying I can sometimes meet a friend for coffee in my own street around lunchtime, and can just about wash and dress myself, I have been judged as fit for a full day’s work, every day.
Coping with change and going out
The assessor notes I stated on the ESA50 that I have to “have routine to try and manage her condition… she advises she cannot do anything spontaneously and works to a very strict timetable and gets very anxious if it has to change. She advises that she gets far too anxious to go out alone. At the WCA, she advised the HCP that she walks to her friend for coffee once a week and can arrange and attend any appointments without difficulty and can deal with letters and bills without difficulty.”
This bit is breathtakingly mendacious. For a start, I stated I could that I could sometimes meet a friend for coffee if planned. Apparently the coffee I may or may not have according to my condition is BOTH spontaneous and planned, and is evidence both that I can keep appointments and cope with change to plans at the same time.
Here’s what I put in my letter about official letters and bills:
“My job involved me reading and processing large amounts of complex paperwork. I cannot do this anymore, whether due to the bipolar or the medication is unclear, but the effect is the same regardless. In order to fill in forms (e.g. DLA claim form) or understand letters from the DWP I now have to go to a Disability Rights Centre.”
The Decision Maker’s reasons continue, “She advised she spends time with her children at weekends. The HCP advised the mental examination was within normal limits.” This as I was choking and sobbing describing my inability to care for my children full time, causing the HCP to say at the end of the interview that she hoped my condition improved for me, especially due to the effect on my children. Presumably to score any points I have to be incapable of seeing my own children at all or have them in Care.
Coping with social situations and behaving appropriately
I have been awarded zero points here because:
– I see my children at weekends
– I can use a standard and mobile phone
– I walk to my friend’s for coffee once a week (wow, a lot seems to be hanging on this coffee, the one I don’t always have).
– I said on the ESA50 that I sometimes cannot cope with groups of people and am over-sensitive to noise, and can get panicky or irritable with people. However, the HCP advised that I “coped well during the interview”, so this information was negated. I coped well? I was distressed and traumatised. It took me significant time after we left for me to begin to calm down. And we were three people in a quiet room, a totally different scenario to working with the public, attending a meeting or being in an office environment.
Throughout the WCA and Decision Making process, there has been a complete lack of understanding of the way the bipolar and other fluctuating mental health problems affect the very many people disabled by such conditions. I stressed very, very clearly to the HCP that it was not merely the symptoms of my bipolar (the hypomania, the dysphoric mania, the depression and the anxiety states) and the side effects of my meds that disable me, but the fluctuating and completely unpredictable nature of my condition. As I put in my accompanying letter, “although I am learning to manage my condition better through self-help and medication, my moods and symptoms remain unstable and I never known what each week will bring. Some symptoms I experience are completely new to me, so I lack the skills to deal with them.”
So, it seems that on the basis of being dressed and present at WCA, despite having to be brought there by a carer and crying continuously through most of the appointment, and on the basis of potentially meeting someone for coffee later that week, I am well enough to work. This means I am no longer eligible for ESA. The DWP suggests that I claim Jobseekers Allowance now – except you can only claim JSA if you are “available for work” and I’m not because, oh yeah, I am already employed but my employer is in the process of ending my contract they do not believe that will be well enough to return to work in the foreseeable future. There is also the small matter of the on-going medical certificates which state that I am not at present in a fit state to work.
So, I guess I could wait until my current contract is wrapped up and start looking for another job. Of course an employer would have to be happy with me working just a few hours a day and being slow and stupid in the mornings, and with me not being able to commit to actually turning up from one week to the next, and variably crying or bouncing around manically in the office. But I’m sure there are hundreds of employers out there who would be cool with that, especially in a recession, right?
Or I can appeal. The Government’s own figures show that that of the large number of appellants against WCA decisions, 40% are successful. For me, an appeal is not even about the money aspect; I am only entitled to ESA until October anyway, as I am on the “contribution-based” from which only lasts a year (because that’s obviously completely adequate for supporting people with life-long conditions). It’s about a system that refuses to tell its subjects who is assessing them and whether the HCPs or Decision Makers have any training in mental health issues. It’s about a system that requires a horribly distressed person to share the intimate details of how her condition disables her, and takes mere attendance as evidence that she is fit for work.
Damn straight I’ll be appealing.