About a year ago, I was at a bus stop when I happened to bump into a friend. I was delighted to see him out and about; some months earlier, he had experienced a disastrous stroke which had left him unable to speak and paralysed throughout one side of his body. Despite this, my friend had painstakingly taught himself to speak, move and walk again, pretty much through a combination sheer bloody-mindedness and family support. The bus arrived, and I noticed that my friend was a little unsteady when boarding, but it was only when we had sat down and he began to tell me what his life was like that I fully appreciated just how profoundly he was still affected by the stroke. It wasn’t just the slight hesitation as he chased words around before pinning them down; nor the slow, frustrating the progress he described with re-gaining fine motor skills such as turning a key in a lock or picking up a coin from a tabletop; or the massive memory lapses he disclosed. It wasn’t even that my previously jovial friend now said that he was having flash-backs to being in hospital and thought often about killing himself. It was the fact that he shouted all these facts in public, completely unaware of the shocked reactions of a bus-load of people.
My friend also told me that he had money troubles. He was self-employed, and although his wife had tried her best to keep the business going while he had been in hospital and undergoing rehabilitation, things were slipping. He had been summoned to attend a Work Capability Assessment. His wife had had to take him there; while short, familiar journeys were one thing, he needed support to go somewhere new and sometimes forgot why he was supposed to be going somewhere. When he arrived, he had difficulties negotiating the stairs. He needed the toilet – his continence had also been affected by the stroke – but was told there were no facilities for public use. At this assessment, my friend was found fit for work.
My friend is a classic example of someone who can be seen to be walking and talking, and whose behaviour could appear superficially “normal”, but who has ongoing hidden problems (in his case, both neurological and psychiatric) whose severity fluctuates – precisely the sort of person the benefits system has great deal in difficulty coping with. I have been lucky; so far I have not had to be subjected to a WCA, although if I can’t return to work before my sick pay runs out, that may change. Looking at the questions for “mental, cognitive and intellectual functions” on the Jobcentre Plus’s Limited Capability for Work Questionnaire for Employment Support Allowance claimants (which you can see here), I would have to answer “it varies” to almost every question. Can I “initiate actions” and carry out plans such as getting washed, dressed, going outside? Sometimes. Can I cope with change to my daily routine? It depends. Can I cope with social situations or communicate with strangers? Ask me another day. The question on “keeping yourself safe” appears focussed on the claimant’s ability to protect themselves from hazards (e.g. can they cook safely?) but makes no mention of those whose biggest risk is from self-harm or suicide. The question about whether a claimant can “behave appropriately with others” is downright bizarre. “How often do you behave in a way which upsets other people? For example, this might be because you are aggressive or act in an unusual way.” Never mind the fact that many people who behave “inappropriately” do so because their intellectual disability or mental health problem causes them to lack awareness of what is appropriate, or the fact that many people get upset when service users “act in an unusual way” because they are prejudiced or ignorant.
The actual WCA involves a worker from the private company ATOS asking the claimant to answer certain questions and perform a number of tasks. Points are assigned to each response and the claimant must score 15 points overall to qualify for ESA instead of being categorised as a “jobseeker”. Looking at the assessment descriptors, it becomes clear that some of the aspects of the Limited Capability for Work Questionnaire that one might have thought would apply to some mental health conditions are in fact very narrowly applied only to physical difficulties. For example, a claimant can only score points in the section on understanding if they have a sensory impairment. Someone unable to comprehend a message due to psychosis of intellectual disability would score zero points on this section.
The descriptors which are intended to apply specifically to mental health conditions show very little appreciation of the complexity of many illnesses. For example, to score even the minimum points for coping with social engagement due to cognitive impairment or mental disorder, the claimant has to demonstrate that, “engagement in social contact with someone unfamiliar to the claimant is not possible for the majority of the time due to difficulty relating to others or significant distress experienced by the individual.” Well, what about people who can manage “social engagement” one day, but not the next? Those whose conditions fluctuate, or worsen when exposed to a trigger, perhaps with very little warning for the sufferer? What about people who can “engage in social contact” more often than not, but whose illness, when it flares up, is so acute that being in the workplace would be disastrous? All of this is why the Citizen’s Advice Bureau stated as long ago as March 2010 that the WCA system fails claimants, especially ones with mental health difficulties. Mind has expressed concern about claimants being assessed by people with little or no training in the area of mental health, and conducted a survey among benefits claimants which found very high levels of anxiety (89%) that people would be forced back to work before they were ready.
One of the concerns that the CAB raised was that the WCA takes no account of the context of any potential work. What does it actually mean to judge someone with mental health difficulties to be “fit for work”? For what work might they fit? As Bipolar Bear notes in a recent blog post, increasingly governments and welfare agencies buy into a simplistic notion about that “work fixes everything. Any work, it would seem. Whatever’s available. Former accountant suffering from a stress burnout? There’s a job going at McDonalds – off you go. Would you like to upsize your dignity for $1?”
All of this is bubbling around in my brain because I am trying to decide when and how to go back to work. The longer I am off, the more I worry about my employer’s view of me, and the worse things are financially. In some senses, I could now be considered “fit for work”, some of the time. If my fitness were assessed on the basis of my functioning today, I would definitely be placed in the Jobseeker category. Right now, I could probably just about to get up and ready and get to work on time (and hey, let’s face it, this was never the strongest part of my skill-set when I was perfectly well). I could interact with colleagues, show genuine interest in their weekends and their children, enjoy grabbing lunch together. In fact, I would go so far as to say that this aspect of work would be therapeutic. Unless in the depths of depression with its accompanying social withdrawal, I am a gregarious person and I’ve never enjoyed being at home alone all day. When I was an at-home mother, being away from the work environment definitely contributed to the depression I experienced.
And yet, on a different day of a different week, I’m clearly not well enough to work. There are still periods of depression and despair, during which it’s hard to even leave the house. There have been weeks in the recent past where I have only gone out if I absolutely have to – for example to attend an appointment with my Consultant – and have cried all the way there on public transport, all the way through the appointment, and then all the way home again. I struggle to find any specific trigger for these sudden drops or improvements in my mood. Even when feeling quite well I still can’t sleep without taking anti-psychotics, and I’ve been started on yet another new medication this week which already appears to me making me drowsy. But beyond the question of whether I can turn up somewhere and be workplace appropriate is the issue of whether I am, as yet, I fit for my work? I am very mindful of the fact that work was the major trigger in this current episode. A first management position in a target-driven public sector organisation, overwork, stress and the belief that I was indispensible all contributed to this first sign – a mild hypomania (not that I recognised it as such) where I felt that I was aware of the stress, but surfing the wave of work and doing it brilliantly. The hours I was working didn’t matter, because I was excited by what I was doing, and felt that I was tremendously good at it. In my spare time I trained for and ran a 10k race for charity, and my social life was better than ever. I found it hard to believe I had ever suffered depression, and had the idea that I might write a book on how to escape from depression by being just like me (yes, I am now embarrassed by that grandiosity, thanks). I then had a mood crash, followed by months of cycling back and forth, but all the time I kept working, feeling more and more anxious about the demands on me.
When I do return to work, I will no longer be in management, but back on the frontline. This will reduce some of the stress, but I remain concerned about my ability to do the basic job. Like many other public sector roles, mine is one where the stakes are high. The decisions I take can have major consequences for other people’s lives, and I have a responsibility to offer clients a calm, supportive, boundaried, response to their personal difficulties. Although there is a considerable amount of desk-based report writing and file updating (far too much, in many people’s opinion), the heart of my profession is about me, in a room, with a client, discussing their issues. Sometimes, those issues are huge. On any given day, I know that I could have to deal with people who are aggressive, despairing, terrified, frustrated; who have been made homeless, who are genuinely penniless, who have serious problem with drugs or alcohol, who hate me without knowing me because I represent “the system”. So far, I don’t yet have my own emotions under control. I have lost the ability to keep my sense of self separate from the suffering of others. The news distresses me to the point where I avoid it, and dramas that show a great deal of suffering or violence can trigger a panic attack. So my Consultant, GP and I have concluded that I am not yet strong enough to do my job. Thank God that, as yet, that decision is not made by a stranger with a checklist.