Department for Snakes and Ladders?

Fionn critiques the benefits system’s failure to support chronically ill, self-employed people

I’m exactly the same as anyone else who’s gathered up a lifetime of training and experience. I have a lot of skills. People come to me for advice. They offer me work. They offer me money to do that work.

And I can do the work, but it makes me ill. I don’t mind; I’ve always been ill, and I love my work. I just have to stop every now and again till I get better, then I can do some more.

Now that I’m older, those pauses have got longer. I might work for five months and have to stop for another four. The trouble is that when the income stops, the bills don’t. I live alone, so I have to claim benefits.

When I do get ill, it can be sudden and severe. One day I can be leading a seminar, the next I can’t fetch a bowl of cereal without help. What I need at this point is a benefit system that that can cushion me during those down times, and enable me to get back to work again as soon as my health allows. Instead I’m faced with a disability benefit system that appears to be based on bizarre assumptions:

“Disabled People Will Avoid Claiming If You Make It Inaccessible Enough” So, I have to scan a 50-odd page ESA booklet because I can’t write by hand, type 6,000 words, print it out, and then transport it a mile to a post box.

“Things Medicine Can’t See Are Likely Fake” So, I have to have to demonstrate the invisible, to someone who’s been told I’m probably lying.

“Ill People Can Stay In Work If You Just Make The Alternative Unpleasant Enough” So, the first 13 weeks of my claim are paid at such a low rate that I can’t afford to heat my home, fund my special diet, or keep on the business services that mean I can return to work easily in future. The stress of the mounting debt delays my recovery.

“Ill People Either Get Better Or Die” Because neither outcome has occurred I will have to repeat the whole miserable cycle over and over again, year after year, even though my conditions have not changed. And who does this benefit?

So why don’t I just use the Permitted Work Scheme? It allows me to work a few hours a week, and even to keep some of the money. I thought it was a great idea when I heard about it. Then I asked for the form.

What is your job title? “It depends. Every project I take on has a different title. I’ve been working since I was 15, and I can do quite a lot of things.”

How many hours per week do you work? “I’m self-employed. I can’t work consistently, so I can’t build my business up, and I never know how much work I’m going to be offered. I might go three weeks without a call, then get several offers at once.”

How much do you earn? “It depends who I’m working for. My average pay’s a bit low for someone with my experience, but I do sometimes get well-paid projects, especially if the client’s desperate for help. But I’m also keen to support new businesses that can’t offer much. So, anything from £15 to £45 per hour.”

I was warned against saying I that can earn more than minimum wage by a welfare benefits officer, who told me it may lead to questions about why I’m in the Support Group.

“Bang Head HereIt’s deeply depressing that DWP still hasn’t realised that severe disability doesn’t preclude academic achievement or good business skills, but I saw his point. Trouble is, I can’t lie about my earnings, yet clients would think I was mad if I asked them to pay less. And there are now no specially trained Jobcentre disability advisors to build relationships with individuals and gain an understanding that they’re chronically ill, not trying to play the system.

If I can’t return to my Employment & Support Allowance claim when I get ill – without a financial punishment for trying to go back to work, without having to write the same 6,000 words on the same form about the same conditions, and without another stressful and humiliating assessment – then it’d be lunacy to keep going back to work.

Why did I spend years doing it? Truthfully, I don’t know.

But I’ve had enough now. My talent, my determination, my courage, and my optimism are no match for public policy that confuses equality with treating everyone the same, and where my disabilities are regarded as excuses put forward by work-shy scroungers (and where a 40-year continuous work history evidently doesn’t suggest otherwise). It’s beyond the realms of possibility that either the welfare system or employers will begin properly supporting disabled people before I retire, so I’m taking the safe option now.

I’m giving up trying.

by Fionn – guest edited by Fran Halsall.

Fionn is 60 and has two long-term conditions, for which there are no effective treatments. He wanted to be able to call on a social safety net; the best thing on offer at the moment seems to be a spectacularly uncomfortable hammock.

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This Post Has 8 Comments

  1. Thanks for sharing this. I’m in a similar position. When I was on ESA I used the Permitted work scheme to work a few hours a week, mostly from home. My ESA was stopped when my earnings exceeded the allowed amount of £100pw, although I was under the 16hr limit. I’m currently not able to work so much, but haven’t tried to claim ESA again because it’s such a horrible process. It’s having a real impact on my finances. I think the PW scheme could work really well for people like us with fluctuating conditions if the benefit was paid proportionally to earnings; so if I had a good earning week, I’d receive nothing from DWP, but when I was worse I would know that I’d at least get a minimum amount to live on.

    1. In theory, that’s supposed to be the purpose of Universal Credit. In practice, of course, it’s based on the same punitive, unyielding processes used for all social security. Such a shame; it could be so much better if effort was put into trying to provide support that recognises the reality of people’s lives…

  2. After my first ESA assessment I was placed in WRAG and had to go before a magistrate to be put in the Support Group. This was so stressful to me that I had a relapse from which I never fully recovered. 5 years on and guess what I have to go for another assessment, despite the fact that all the medical evidence I have sent clearly states that I am getting progressively worse and there is no cure. This annoys me as it is such a waste of time and money and doesn’t do my health any good either.

  3. I wish the DWP would stop assessing me for ESA and PIP over and over again, with assessors who are either incompetent, dishonest, or incapable of understanding my conditions (chronic pain and complex mental health problems – this time I was assessed by a paramedic); taking away my benefits; and leaving me destitute and in debt to family and friends until I finally win a Tribunal appeal and get the award back.

    5 times now. I have invisible, fluctuating conditions (including mental health conditions), which the DWP is particularly good at ignoring. I win at Tribunal every time, but the process destroys my mental health, which worsens my physical health, and it takes months to over a year for me to struggle back to where I was when that brown envelope came through the door.

    Or rather, almost all the way back. Each time, the effects are worse. Each time I come back to a lower level. I’ve been getting ground down for years, and now there’s not much left of me. My therapist says that I seem to have developed PTSD because of the system. Yay. Another condition, gifted to me by the DWP. That really helps me get back to work.

    If they had just supported me and stopped causing me such immense stress on a regular basis, I suspect I’d already be back at work. I desperately want to be, even if I can only work part-time. 10 years of undergrad and post-grad, 8 years as a scientist – all wasted.

    I understand the OP’S state of mind all too well. The only difference is that I have nothing left to fall back on. At least 20 more weeks until I get a date for my tribunal, never mind have the actual hearing. It’s already been 5 months since I lost my PIP. By the time I get to Tribunal, the PIP award that the DWP took away would have ended, so even though I’ll likely get back pay, I’ll have to make another PIP application before my Tribunal is heard for this one. (Here we go again.) My ESA is due to end this year too. (And again.) I can’t go through another year of this. I’m not sure I can go through another couple of months. Sooner, rather than later, I’ll just be another statistic that the DWP misrepresents, or hides, or ignores.

  4. Reading The Department for Snakes and Ladders was a breath of fresh air. A real insight into how thousands are feeling and suffering when attempting to navigate a system which is seemingly stacked against them.
    How does anyone begin to explain how devastating it is living with complex illnesses – invisible illness, chronic pain, spinal cord injury, incontinence, anxiety, depression – and on top of all that – so called friends who really just don’t believe. Living everyday hearing the doubting Thomas’s proclaiming their disbelief – knowledge of how judgmental people can be – how small minded and totally devoid of empathy and worse than this – unwilling to listen. How disabled people constantly feel the need to justify themselves for fear of persecution – it’s soul destroying.
    I sense people think the disabled should be living out of their coffin before they get any assistance.

  5. Thank you for expressing all this so articulately. We are clearly not alone. It’s all so wasteful and unnecessary. I wonder who it is that can make a difference. Which senior civil servants or unit or think tank? Is there a couple of MPs who are able to take on getting their head round the system and advocating changes in approach? Good will or vague sympathy is not enough by itself.
    I love the uncomfortable hammock analogy though it makes me think ouch. Nothing worse than an uncomfortable hammock – especially for a whole life. Society in general just doesn’t know this is all going on. Though the U.K. has been cited by a UN agency for maltreating the disabled I read somewhere.

  6. This is so sickening. You can see why people commit suicide. The only time it will ever change is if a top Tory cabinet member contracts an invisible illness in a severe form.
    The law would change overnight.
    Having said that no Tory will ever need to claim any benefits which again is part of the problem.

  7. I so empathise with your situation Fionn, being forced into leaving my last job through disablism, and winning my case at tribunal; I had to begin this journey of claiming benefits. This was 8 year ago and now, after the past two years in hard therapy my mental health is in recovery, but my physical disabilities are still in flux. The never ending cycle of claiming and fighting the DWP to access the benefits I’ve worked for over 30 years to pay into, merely adds to the difficulties I and countless others already survive with.
    I’ve never known such a ridiculous situation as the one we face with the system operated by the DWP

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