Karen Sherlock was just an ordinary woman. She didn’t have a great deal of money, her health meant she didn’t get many opportunities to go out, particularly not anywhere you might have seen her, and even if you did you wouldn’t have given her another thought. Just another woman in middle age as invisible as all women past a certain age become.
But Karen had another life, one in which she was recognised for her courage and determination to stand up for the rights of all sick and disabled people subject to the Work Capability Assessment. You might not have noticed Karen, but had you paid attention you would have seen the story of an utterly remarkable woman, who’s experiences typify the disconnect between the reality of sick and disabled people’s lives and the blunt instrument employed by the state to rule if we are ‘fit for work’.
Karen was diagnosed with type 1 diabetes when she was 3. By the time she reached working age she was already developing complications from the diabetes, but that didn’t stop her working and living a full life. Time passed, she married her beloved Nigel and worked in the NHS. Her health worsened, and after losing most of her eyesight it became impossible for her to continue working. In February 2008 Karen was dismissed from her job due to ill health, a decision made by the Occupational Health arm of Atos on behalf of the Pensions Agency.
This is when Karen’s nightmare truly began. She applied for Employment Support Allowance, formerly called Incapacity Benefit, which is a benefit for people who are unable to work temporarily or permanently due to disability or ill health. She was called to attend a Work Capability Assessment ‘medical’, again run by Atos, but an Atos held to entirely different standards by the Department of Work and Pensions than the Atos who’d decided she was unfit to work in the NHS. The standards used by Atos to medically retire Karen from her NHS job considered whether she was well enough to do that specific job, but as intended by the government, the Work Capability Assessments she endured were designed purely to assess whether people have any capacity for some work in some form. Ministers such as Chris Grayling have made it very clear that this is the intention of the test by repeatedly stating their ‘absolute and implacable opposition to a real world test’. In normal person speak what that means is that Ministers refuse to consider a fitness for work testing process that considers the job the person was trained to do and whether they are still capable of carrying that out, instead focusing narrowly on whether they have some capacity to perform imaginary work related tasks such as being able to sit at a workstation for half an hour. On May 30th 2012, the day before Karen was finally placed in the Support Group, a mere 10 days before her death, Chris Grayling announced that those in the Work Related Activity Group, those people just like Karen who could soon expect to be mandated to the Work Programme “have proved sicker and further from the workplace than expected” That is one way of describing it to the 32 families each week grieving the death of their loved ones who had been found ‘fit for future return to work’, people a far cry from the supposedly lazy scroungers the public have been led to believe this policy applies to.
Karen described her first WCA in Spring 2008 as a ‘farce’, never heard the results and was called for another WCA in August 2008 when she was placed in the Work Related Activity Group. Karen had diabetic autonomic neuoropathy, gastropaerisis and diabetic retinopathy. She was partially sighted, with a heart condition, asthma, chronic kidney disease, B12 deficiency, anaemia, high blood pressure and was frequently doubly incontinent. For all these reasons she was correctly found unfit to perform her role in the NHS, but the Work Capability Assessment is not designed to consider whether someone is fit to work in their job of training, it is a blunt tool purely intended to separate people out into 3 categories; those who are unfit for any kind of work, placed into the Support Group with no conditions attached to their benefit receipt, those who are considered entirely fit for work and transferred to jobseekers allowance, then the WRAG intended for people with some disability or health problems considered able to return to the workplace in some future capacity. Those placed in the WRAG are expected to participate in activities aimed at returning them to the work place, including mandatory work programmes in some circumstances. For those in receipt of contributions based ESA (the benefit paid in return for National Insurance contributions) a one year time limit applies, retrospectively, whereas this benefit used to be paid as of right to those with sufficient NI contributions for as long as they were sick or disabled. This means that people such as Karen who had worked all their lives lose their eligibility for ESA. Karen’s husband Nigel worked, but even before tax didn’t earn anything approaching the £26,000 pa means testing limit being introduced for other benefits. This didn’t matter as the means testing limit for ESA is a partner earning a mere £7500 pa.
Karen endured the stress and anxiety of four WCA’s and subsequent appeal processes between 2008 and April of 2012 when her ESA stopped completely, leaving her and Nigel £380 per month worse off. Karen was terrified, so much so that her fear was palpable, even online. She worried about how they’d pay their mortgage, basic bills, how Nigel would cope. At the same time Karen was consumed with anxiety about the financial aspects she was also in worsening health, awaiting an operation to enable her to start dialysis, being considered for the transplant list and investigated for worsening cardiac problems. Despite all that, Karen remained in the Work Related Activity Group.
I first knew Karen in October 2010, when we founded The Broken of Britain a social media based disability rights campaign. We were asking sick and disabled people to speak out, to tell their stories about how they had become reliant upon benefits, and people were initially reluctant. Pride and fear combine to prevent us wanting to discuss the intimate details of our lives in public. But a small handful of people stepped forward in those first few days, they pushed aside their anxiety that speaking out would be used against them by the DWP and told their stories. Karen was one of these people. Although she is probably the most terrified person I have encountered to date about the welfare reforms, she was also the first to stand up to be counted. Karen understood that telling her story would help other people and so she acted in characteristic manner and did what she believed to be right for everyone. The last email I have from Karen is from early April 2012 when she told me she’d used the benefits calculator I’d suggested to see if there was any other support she and Nigel could claim. There wasn’t. I couldn’t offer Karen any hope, all I could do was apologise and explain to her that this was the exact intended effect of the benefit ‘reforms’ we had all fought so hard to prevent.
I can’t think of an online group who didn’t benefit from Karen’s presence over the past two years, she played an active role wherever she could, trying to support other people in distress. When Karen was frightened, which was most days, she would literally beg other campaigners for the reassurance that everything would be ok. Every time it broke a piece of my heart not to be able to offer her the security she needed, the answer she was so desperate to hear, that it would be ok, that it was all some big mistake. None of us could ever tell Karen that, she died a mere 8 days after getting the notice she had finally been placed in the support group, her last years of life utterly blighted by ‘despair, helplessness and frustration’ directly caused by a government who’s leader had pledged to alleviate precisely such bureaucratic suffering.
For me, one memory typifies both Karen Sherlock and the complex, bureaucratic cruelty she experienced. The Atos nurse who performed Karen’s initial WCA was kind to her and tried to reassure her that she should be in the support group. These comments stuck with Karen, she could not understand how what had been so obvious to the first person to assess her had been overturned, nor why everyone else she appealed to seemed so wilfully blind to it. It both haunted Karen and gave her the strength to carry on fighting for what she knew to be right. I explained to Karen that although she’d been assessed by an Atos employee, a Department of Work and Pensions Decision Maker, with no medical training made the final decision about which group people are allocated to, the support or Work Related Activity group Karen was repeatedly placed in. In passing I mentioned that the people carrying out the ‘medicals’ weren’t supposed to comment on which group people are put in. Despite her terror, her anxiety and the disgraceful way the system had treated such a vulnerable individual, Karen worried that if she spoke out about that nurse’s compassion she might get her into trouble for having demonstrated a kindness the process of claiming Employment Support Allowance is designed to deny.
Goodnight Karen, Sleep Well Xx