Saturday, 5 March 2011


I recently watched David Cameron and Iain Duncan Smith do their double act as they announced their sweeping Welfare Reform Bill. Aside from ruining my lunch with their smarmy tones and chummy air, the whole thing piqued my interest for many reasons.

Mainly because right now I am entirely financially dependent on state benefits. I receive Income Support with a disability premium along with Housing Benefit and Council Tax Benefit. The welfare state is my safety net, but we're not so much friends as frenemies. It keeps me fed, clothed and with a roof over my head, but it has also been one of the biggest stresses and sources of uncertainty and fear in my life in the last six or seven years.

You'd think claiming benefits due to ill health would be fairly simple wouldn't you? Your doctor signs you off, you fill out the forms, another doctor agree that you're sick and the Department of Work and Pensions ponies up. You know what the meerkat might say. But the reality is vastly different. Firstly you have to accept that you are sick enough to remove yourself from the workforce. This is a massive step, often accompanied by fear, trauma and pain and shock, and requires a level of resignation and acceptance of illness that is directly contrary to how we usually live our lives.

Then you have to start finding your way round the maze that is the benefits system. Slightly less ciruituous these days since all out of work benefits for ill health are combined into Employment and Support Allowance rather the previous three or four different types, it is still tricky enough. The forms are long, suprisingly oblique considering they boast a 'Plain English Mark' and incredibly detailed. Everything is covered, often raising questions and seeking details you may not have considered, depending how recent your illness is and in a depth some people may find painfully invasive.

You fill out your forms, answering the same question several times, answering everything to the best of your ability but unaware that you shouldn't use your average day of illness, but your worst day to make sure you don't accidentally make yourself sound less ill because you happened to have not cried with pain/needed a nap/managed to get out of bed the day you did the forms. Despite trying to remain positive in order to cope with ill health day to day, you must in fact be as bleak and hopeless as possible when doing the benefits form in case you deteriorate in the interim. You persue your GP to make sure your reports are up to date. And if you are lucky enough to have a specialist, consultant or therapist dealing with you (which is unlikely if you've only recently become ill) you chase them up too. Once you've got everything, you queue for ages at the Post Office to send your forms back Special Delivery to make sure you have proof of postage that you did return the forms within the allocated four weeks allowed.

A few weeks later a buff envelope falls through the door. You open it eagerly, you haven't been dealing with the DWP long enough to get the Pavlovian response of sheer dread when you see one of these yet. And you read that you have not provided enough evidence of your illness and must attend a work capability assessment. They don't tell you this, but it won't be with a twinkly eyed doctor with a white coat and stethoscope around his neck. Instead it will be with a 'healthcare professional' employed by a private company called Atos. This person might be a midwife, retired nurse or medical person from another country with differing qualifications to ours. The assessment will be at a venue of their choosing, without any consideration of where you live or your travel options. You are not encouraged to bring a friend or family member and the idea of having a solicitor or trade union official is about as likely as going to the venue by flying pig.

On the alloted day, you travel to the venue and are seen by your healthcare professional, althought their qualification is not revealed to you. If you are lucky, you'll get someone who speaks good English and if you're really blessed, they'll have honoured your request to have a female doctor (if that's what you chose). You'll then be rattled through pretty much the same forms you have already filled out, but in about a tenth of the time you took originally. To shake things up further, it will be interactive with a physical assessment (even if you're claiming for mental illness). If you've looked at this as basically the same idea as a  job interview up until now, you will be in for a massive surprise.

Seemingly simple chatty questions like do you watch Eastenders aren't just an interviewer's attempt to put you at ease (or query your tastes). If you say yes, the assessor marks you as able to sit pain free without moving while concentrating and following the show for a full 30 minutes, concluding that you must have been lying when you said you couldn't sit for periods of time due to pain or that the lack of concentration due to depression was a big fib. Even if they allow you the chance to speak up and try to explain that you have to get up and walk around or get confused as what's happening in that half hour, they won't record it as there's no box for additional information on their computerised form. Refusing to be physically examined or asking them to stop even if you are distressed or in pain is seen as refusing to attend the assesment and leads automatically to your benefits being stopped. It's a bit like going for an interview for one job and being interviewed for one you've never even heard of.

You've answered the questionnaire again, no matter how embarrassing or difficult somethings are to say out loud (in my case questions about the pyschological impacts of my rapes no therapist would countenance for fear of my mental health), you've been poked and prodded and silently judged for whether your shirt has buttons or you've brushed your hair. You now expect that the assessor will make you sit for ages in uncomfortable silence while they pore over the reports from your GP and specialists. But instead, they completely and utterly ignore the fact that those things exist and shove your out the door again to find your own way home no matter how exhausted or upset you might be.

A few weeks pass and with less enthusiasm you collect your next buff envelope from the doormat. All the questions and examinations at the assessment still haven't scored you enough points on the required tickboxes. Cursing and starting to panic, you trek out to the JobCentre Plus to get an appeal form. Maybe this time you'll be able to get that world reknowned consultant who diagnosed you to tell the DWP in their own words that to stop obsessing about lifting bags of spuds and pay attention to the information you provided beyond the tick boxes.  Only if you knew what to say on the appeal form, since being open and detailed hasn't got you very far yet...

So now you need to find a welfare advisor at your local benefits advice centre or Citizens' Advice Bureau (if of course they haven't lost funding and been shut down). Once located, it might take up to a week to get an appointment or several days of turning up bright and early to queue before opening in the hope that you get seen. Hopefully you won't have a difficult case and require more than one visit. Eventually you have the from filled out and you're back to the Post Office to do another Special Delivery (and hope that the DWP office you need hasn't moved address without telling you like has happened to me on more than one occasion).

It's around eight weeks since you applied, you're spending a fortune on photocopying (got to keep a record of what you said to them) and postage, but you haven't actually had any money yet. You've tried calling the DWP office, but they keep putting you on hold and that 0845 number costs about 10p a minute from a mobile. Plus you've got to get in touch with the council and keep them informed on what's happening so they can deal with your Housing and Council Tax Benefit claims. Then you've got to hide from your landlord or mortgage provider when they come a-knocking to see why your payments seem to be invisible. Maybe you fill the time by begging the bank to up your overdraft to tide you over. All of this is akin to a full time job while you are too ill to actually have a full time job.

Thankfully it's third time lucky with the buff envelope. You are now in receipt of sickness benefit. you can relax and get on with the business of being sick on your £90 a week. Can't you? Actually no. Firstly you've got to sort that Housing Benefit and Council Tax. That's more forms, more queuing and the very real fear that even if your rent is low, it won't be fully covered, especially if you have any bills or services included, But once that's sorted you have to now find an interesting balance between being ill and not getting better too quickly, all the while looking as sick and pitiful as possible. You see, if you have therapy for a mental health problem or start a new med and feel better for a bit you will be whipped off benefits faster than you can say Work Capability Assessment, even if it's only a temporary boost or comes with awful cumulative side effects or a relapse. And if you have the audacity do all this while being able to walk or occasionally lift something and driving the car you owned previously or in a good wool winter coat, you will be opened up to the tax-payers' jury where people who feel you are getting their money feel entitled to question you intimately about your illness or disabilty, judge you and hope that all your nice things in life are removed and replaced with sackcloth, ashes and a small begging bowl. If you're really unlucky, they might phone up and report you anonymously for benefit fraud because, well, didn't you know that simply knowing someone who claims benefits bestows you with magical powers of insight into people's financial and medical life?

Even if you're not unlucky enough for this to happen, the DWP can still ask to see your bank statements at any time they like and query why your great aunt Marjorie put twenty quid in your account for Christmas. And still you're waiting for that fabled day when being on benefits automatically entitlees you to a swanky £400 a week flat in Central London, a flatscreen telly the size of a swimming pool and all the Special Brew and B&H you can get down you daily as someone else pays your gas and leccy. After all, no one would lie about Welfare Valhalla, would they?

But in reality, you just get on with living life balancing up a serious illness and your uncertain finances. I'm not going to bitch about the the amount of money I get. Its work out about equivalent to minimum wage did for me when I was working and thanks to many factors such as good literacy skills, a credit rating and an understanding bank, I can live comfortably on it. I will always be grateful for benefits allowing me to keep a roof over my head, but I don't think I will ever get used to the arbitrary nature of the welfare state where whole benefits disappear, change rate and are altered at will. It's as if your boss came into work one day and decided they don't like your computer screensaver and fire you on the spot wihtout regard for rules, laws or regulations.

After proving my ill health first every six weeks and then every six months, I finally got two psychologists, a psychiatrist, my GP and a social worker to confirm my diagnosis and was signed off for three full years. But due to the government switching Income Support to ESA, I can be called for re-assessment at any time without warning and have to start the whole process again while having my money stopped or reduced. I have taken lots of steps to improve my health in that time and am worried that because I'm not just as sick as before, it will count against me. It took almost four years to get my benefits stabilised and not entirely coincidentally, my mental health has begun to improve since then and I am even able to think about retraining for work in the future since I don't have the constant fear of losing my entire income and my home hanging over me like a black cloud all the time.

Strangely none of the wailing and gnashing of teeth from the Tories with their incessant mantra of 'making work pay' has aided me toward this change in my life. Promises to allow me to keep around 5p on the pound more than before when returning to work, threats to make it harder to claim and being called a scrounger repeatedly have not made me wake up one morning having decided I'd no longer like to be an agoraphobic with Chronic Fatigue Syndrome. Such castigating rhetoric has not made the global economic crisis and British recession imaginary or created an abundance of jobs that allow you to take an afternoon nap and don't mind if you have to take a week off at the last minute. Amusing as Iain Duncan Smith's selection of mournful serious faces are, they haven't made it less likely that I would need to spend a lot of extra money on prescriptions when back at work or guarantee my boss and colleagues would allow me time off to attend all my medical appointments. All the chanting of 'being in this together' in the world doesn't hide the big fat hole in my CV caused by chronic illness and convince anyone to actually hire me. Changing the terms of the test that assesses sickness doesn't miraculously make me well again, despite what the tick boxes say. Even jacking the minimum wage up so far it looks more like a Euromillions rollover won't really have an effect on me because I am not well enough to hold down a full time job rather than lazy.

If the Coalition wants to get disabled people working it would help if they didn't start slashing things like the Access to Work Fund that funds the costs of disability in the workplace or trying to make Disability Living Allowance harder to claim. When you're balancing a job with a chronic illness, the little things really count and even having the extra £18 a week low rate DLA care can mean being able to buy ready chopped veg and quicker to cook foods like chicken breast so you can still eat without exhausting yourself after work. They could also look at tapering benefits differently so you don't start even part time or jobshare style work to ease in gently and find yourself on essentially a 95 pence in the pound tax rate.

They could also while embracing other Victorian ideas with gusto, warm to the old fashioned notion of convalescence. The rhetoric around benefits is black and white. You're either sick or not. They want everyone back to work, but they refuse to support people as they get better. To them having a bad back means lying prone in the house behind closed curtains until the magical day when you levitate yourself back to a full time job. Considering their obsession with pulling yourself up by the bootstraps, there is no room in this world for gently walking round a park or cycling for 30 minutes a day to strengthen and heal one's lumbar regions, which I would have though was entirely the kind of improving your situation right wingers love. But instead of welcoming that (and the input of the NHS), they like to berate you for being so weak and useless and pathetic for succumbing in the first place. Taking time to heal didn't build the Empire you know: it merely oversaw it from a position of privilege the proles just shouldn't be afforded.

They could even go a bit controversial and try talking to some chronically ill or disabled people to see what they need to help them back to work, instead of relying on the word of people in rude health, who incidentally aren't dependent on the vagaries of the NHS since they can afford private healthcare. And while they've got their listening caps on, have a word with businesses to see what they need to make it worth their while hiring someone with extra needs. Then they could stop cutting the mental health budget behind everyone's back, keep childcare accessible and stop giving stupid amounts of money to private firms like A4E to send chronically ill people on courses that teach them how to fill out a form (we're form filling experts for godsake. DLA is a 63 page epic. ) and use that cash for retraining instead. That way people who are unable to have one job due to certain health problems might be able to find another one that works for them.  Economics aren't my forte, but I'm pretty sure that this kind of joined up thinking will save money in the long run as benefits costs go down and tax revenues go up when people can access and keep jobs with some support. They'd even save enough to stop bullying and barracking those who just aren't well or stable enough to hold down a job no matter what.

But that wouldn't sate the Tory and Daily Mail* need for benefit scrounging blood. How will they feel superior if people are well treated and not made to feel ashamed of being different? And who will make money off this situation if they can't privatise as much of the icky reality of illness as possible? I still won't like if they fessed up to their ideological aims, but at least I wouldn't feel so patronised while they threaten to make my life even more unstable and difficult to deal with. But we've just got to try and keep fighting their sneaky underhand tactics with honesty to show people how devious their government is really being.

*New Labour were no better really, but it didn't fit the sentence as nicely...

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