Wednesday, 27 June 2012

Karen Sherlock - An Ordinary Woman In An Extraordinary World

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 

Flowers and tributes were sent for Karen's funeral from donations from her online family

Monday, 25 June 2012

The Real Cost of Losing Motability - #ReversingRecovery

A report released today shows how PIP will be disastrous not only for the disabled community, but also for the car industry. In short, ending DLA will have a serious effect on the economy. The report is calling on the government to reconsider its reforms to DLA, including by consulting more widely.

The report, 'Reversing from Recovery', makes it clear that many fewer disabled people will be eligible for Motability cars under PIP rules. To quote the report, we're looking at "a 27% reduction in the number of working age disabled people, and a 17% reduction in the number of disabled people overall" who can access Motability cars. There will be major effects on the economy as a result, including a £342 million drop in contribution to GDP as a result of the changes. Many disabled people's ability to work will also be drastically reduced. In a time of economic difficulties, this is one cut that will harm, not help, the economy.

As many disabled people will be able to tell you, the changes are going to have a drastic effect on our lives, as well as on the economy. As today's report shows, "85% of Motability car users say the car has a positive impact on their ability to access health services, whilst more than 1 in 3 of those able to work say it maintains or improves their ability to undertake paid employment." Transport is still so appallingly inaccessible for many of us, as DPAC's Right To Ride protest recently highlighted. Other disabled and long-term ill people have medical and social needs for cars that other disabled people do not, and those needs are getting worse as the cuts mean more people are losing the support that might help, like social care. And as we all know, this is not a free car - we pay for it with our DLA Mobility Component. We're not talking about a free ride here, but a positive contribution that disabled people make to the economy and which in turn means we can have reliable, maintained cars through a lease scheme that we can afford. (Don't underestimate the importance of 'reliable', either, for people who have serious health difficulties or live in vulnerable situations.)

Disabled people have been concerned for some time now that our access to Motability is going to be affected by PIP. As we've been arguing, PIP moves the goalposts to such an extent that many people who now qualify for a car under DLA will no longer be eligible under PIP. Despite rather vague promises in the House of Commons (scroll down to Anna Soubry's question to see the non-answer), the government is failing to respond to these concerns. And when it comes to Motability, it looks as though it's not just disabled people who are set to lose out.

Although of course, we're going to lose out the most. I'm really quite terrified about this one. My Motability car has meant that I can pursue a university course and do part-time work as well. It looks like I won't be eligible under the PIP rules, and that will probably mean I can no longer do any paid work or studying. These are the kind of situations that the government should be worried about, but PIP shows that their back-to-work rhetoric is not actually based in reality. As we already knew. As the report puts it, "We’ll see disabled people less independent, less likely to be able to get or keep a job and more likely to close businesses or give up self-employment. Having welfare reform plans which interfere with employment prospects is nonsensical. The Government should think again."

'Reversing from Recovery' is published by the WeareSpartacus campaign group, who have drawn on Motability's own reports. They've provided template letters that you can send to your MP, the Lords or your local newspaper - go to for details. To spread the word, use the #ReversingRecovery hashtag on twitter. This is the kind of news that the government will not be wanting us to talk about. Let's get talking about it.

  • Details of the Government's proposals for PIP, including projections of the number of people expected to be eligible for the enhanced mobility rate, can be found in the DWP consultation document, 'Personal Independence Payment: Assessment thresholds and consultation' (January 2012), available at .

Sunday, 24 June 2012

Local Housing Allowance Cuts & The Idealised Family

This is a Daily Mail link, thus the succinct and witty title:
Cameron to axe housing benefits for feckless under 25s in war on wellfare culture
Or as I would have put it: Under-25s to be denied Local Housing Allowance. Maybe.

The Conservative Government have an idealised view of normal families being wealthy, upper middle class, living in large houses with plenty of space, where everyone gets on well, everyone works and spends time outside the house and parents are committed to providing for their offspring for as long as it takes for them to get on their feet. Getting on their feet, in the mind of David Cameron, seems to mean saving up to buy a house (a neat trick at the best of times, let alone when you're poor enough to be on benefits).

I know a lot of nice families. I don't know any families like that.

My parents are great, but they didn't see parenthood as a lifelong financial burden and expected my sister and I to be independent. I started paying rent (though admittedly not much) at sixteen and moved out at eighteen. They helped my sister through university to the best of their ability but have provided no further financial assistance to either of us since. They are generous with their time and energy, I get Christmas presents I couldn't afford to treat myself to, but as far as they are concerned, they've done their bit.

By the time I was eighteen, I couldn't stand living with them any more. They were not abusive. They weren't terrible about my illness, but they weren't coping with it at all well, at a time when I wasn't coping with it at all. They struggled to see me suffer and half the time they treated me like an infant, while half the time they kept their distance and made it difficult to ask for help. They were, at that time, fantastically homophobic*. Both of them were also under a fair amount of personal stress; Mum's father had died the previous year, Dad was unemployed and I was frequently caught up in the middle of their arguments. And this was making me ill. It wasn't the only thing making me ill, but it was a big contributing factor to the suicidal depression that took hold.

As it was, I met a thirty-four year old man who took advantage of my considerable vulnerability - including my housing situation - and whisked me off to the other end of the country. This seemed like a really good thing at the time; I had a rock bottom self-esteem and was used to being treated like a child, so I wasn't able to identify verbal abuse, controlling behaviour or even the violence for what it was. What's more, being sent home to my parents in humiliation was used as a constant threat and since I couldn't live by myself, I felt this was my only other option. It was only much later, when I realised that I had friends and several family members who would be prepared to provide refuge should I need it, that I was finally able to leave.

I needed to move out when I was in my late teens. A change in legislation wouldn't have stopped my story happening, but it would remove a vital option from other young disabled women (and women who are poor for other reasons). Young and vulnerable women without any option of independent housing are going to be even more vulnerable to older abusers who don't have to work too hard to seem a more attractive option than staying with Mum & Dad.

The difficulties of living with parents are exaggerated for disabled people - folks who find it easy to live with their parents are usually extremely independent, able to go out whenever they like and only pop home to sleep off the hangover. When you're at home most of the time, need meals cooking, let alone help with bathing and so forth, there's far more pressure on that relationship. Some parents of disabled people are so used to being anxious about and protective of their kids that they take a long time to realise that their children have grown up. If indeed, they ever do.

That was my situation, but there are myriad other reasons that young people cannot live with their parents, apart from obvious things like having no parents or having terrible parents (who are by no means restricted to parents who beat you up - one exceptional circumstance the article acknowledged). These include

  • Parents live in a house too small to accommodate you, e.g. they've got a smaller house now, Gran's moved into your old bedroom or you'd have to share a room with two five-year-olds and a budgie named Elvis.
  • Parents' house is physically inaccessible. 
  • Parents' house is an unhealthy environment for you - I had one young friend with ME who wound up in a hostel because the noise and chaos of her multiple younger siblings made it impossible for her to get sufficient rest.
  • Parents make it difficult to be yourself in some way (e.g. they disapprove of your sexuality, religion or lack thereof).
  • Parents live in a completely different part of the country to where the young person lives and works. Not only it is perfectly reasonable that young adults move to other parts of the country, for studying, work or because somewhere is more suited to them, but it is even more reasonable that young people shouldn't have to move back - or indeed follow their parents around the country - if something goes wrong. You might have begun to establish a career in London, only to be unemployed at the age of twenty-four, and rather than staying in London while you find a new job, you have to return to Orkney where it is impossible to apply for London jobs.
When I was twenty-nine, I was forced to move back in with my parents. This situation changed soon after and I now live less than half my time with my own folks and the rest of the time with my boyfriend's parents - who are, in fairness, somewhat closer to Cameron's ideal, only without having any money to spare. 

However, my parents struggled with this. They wanted to help, because I'd found myself in very insecure accommodation where I didn't have access to freezer space or a functional washing machine, let alone the help I needed. But they didn't understand why I couldn't get social housing with a snap of my fingers and move out again right away. They couldn't understand that Local Housing Allowance wouldn't pay full rent on any suitable place I might want to live - in fact, it wouldn't pay for any place I could reasonably live, such that I could afford to eat as well, in this not at all posh part of rural Suffolk.

My parents house is inaccessible, and while folk in other areas of the country can't get the basics, I've had to turn down all kinds of adaptations from social services because this is not my house and my folks don't want the place looking like a nursing home. They would never consider getting a vehicle that could transport my power chair, so I can't get out much while I'm with them and have to ask my boyfriend's Dad to help me on most significant journeys. And apart from all that, it's been a struggle. Not an insurmountable one, but a struggle, nevertheless.

This is a normal family. Some people reading this might judge my parents badly, but others will know how lucky I am that I've got a comfy room and a roof here and get on with them well enough that this is okay for now - especially as I don't have to be here all the time. But there is nothing remarkable about my situation or the attitudes of my folks. They love me and they have done their best for me. Even if they were to be judged badly for that, it's not something I - let alone my desperate eighteen year old self - have ever had any control over.  

* They weren't as bad as all that, really, but I love my parents, and when I think about things they said then, when I was having come to terms with my sexuality in secret, I find it very shocking and hurtful. However, I know they could have been worse, and if they'd found out about my sexuality then, they probably would have dismissed it as an abhorrent phase  as opposed to throwing me out or anything nearly so dramatic.

Friday, 15 June 2012

Guest post: Spoon overdrafts and the #WCA

This is a post by @MargoJMilne and originally appeared here on Tuesday 12th June.

It's difficult. I'd love to blog more. I'd love to do so many other things more too! Go out with friends, go shopping, go on holiday, keep on with my voluntary work, hold down a job...

over 100 spoons of assorted sizes and styles

But I'm a spoonie. I'm dreadfully, cripplingly fatigued because of long-term illness - in my case multiple sclerosis. And not only am I short on energy in the first place, but it takes me ages to recover after doing anything.

This weekend is an example. My beautiful, much loved cat Bing died on Friday. It was very, very stressful. Then on Sunday I drove to Oxford for lunch. Before I took ill, I wouldn't have thought twice about driving 60 miles each way for lunch. Now, it's an expedition of Amazonian proportions.

Today is Tuesday. I've not been out of my PJs since Sunday night. I really need to go into town to the bank, but my body's having none of it. It is, in fact, my spoon overdraft that's stopping me dealing with my financial one until I've got that blasted spoon level back up again.

sketch of a checklist attached to a clipboard with a yellow pencil resting on it.

And that's just one of the many problems with the Work Capability Assessment, which decides whether - and at what rate - people should get Employment and Support Allowance (ESA). It asks nothing at all about fatigue. It asks whether you can do a task once, but not whether you can do it repeatedly. It doesn't ask how your ability to work is affected by stress. ("Sorry, Mr. Employer, I can't come in this week. I'm tired cos my cat died.")

It's no wonder that so many people and organisations, including GPs, have denounced the WCA as inadequate. Staff members of ATOS, the company which carries out the assessments, have expressed concerns that not enough time is allowed for each appointment, for what are often complex cases with multiple comorbidities.

Karen Sherlock had multiple comorbidities - basically a lot of bad shit going on - but in her WCA she was put into the "work-related activity" group. That means they thought she'd be able to do some work, eventually.

Well, she couldn't. After a year's frantic, terrified gathering of evidence, Karen's appeal was successful, and she was placed in the support group.

And this week, two weeks after that decision, she died.

Wouldn't it be a wonderful memorial to Karen if this bluntest of blunt instruments were to be consigned to the history books forever? Let's continue to do all we can, for Karen and its other victims.

Monday, 4 June 2012


I am chronically sick. My illness forces me to rely on income from benefits because I am unable to work. I have just been told that to object to the monarchy and to hold political views while I live in this country where the welfare system looks after me is ungrateful. I can't begin to address how wrong that idea is.

It stems from the same point of view that says I should lie in bed all day and think about how terrible I am to need taxpayers money to support me. The idea that I do not work so I have no right to any quality of life, to leave the house or to have any enjoyment in life.

It is the same point of view that says that I live on taxpayer's money, so every tax payer has a right to question how I spend my income, and that I should never spend it on anything nice or entertaining.  The point of view that is jealous of my Motability car because I obviously don't deserve it and I shouldn't have a better car than someone who works. (Never mind that the car provides a way for me to get to my medical appointments and to do things for myself rather than require yet more help from the state, and that I lease and pay for it out of a benefit that I already receive.)

These are the views that lead to sick and disabled people being reported for benefit fraud because someone saw them walk a short distance or carry out some task that other people feel makes them fit for work, without any idea of variable health conditions, good and bad days, of doing something despite the pain or the payback later because the task must be done.

These are the kind of views that have allowed the government to actively remove much of the support given and the progress made over the last thirty years in the lives of sick and disabled people. These are the kind of views that lead to disabled people being locked away in care homes to die quietly without bothering anyone. This government has reversed things so much that councils are actually moving sick and disabled people into care homes to save money. Back to the age where they are out of sight, out of mind.

These are the views that led the Nazis to murder 240,000 disabled people between 1939 and 1945, so forgive me if I complain about the government and hold political opinions of my own. I have good reason.