‘Sick of the system’

October 22, 2008

From The Guardian, October 22

After becoming ill, Melissa Viney had to give up her job and go on to incapacity support. Then she tried working again. But it's not easy, she found, to escape the benefits trap.

Four years ago, I took an enormous leap of faith. I jumped from 10 years of long-term incapacity benefit and back into work. I've had ME (myalgic encephalopathy, or chronic fatigue syndrome) and I couldn't have coped without the benefit during my illness. But I learned that while getting the benefit in the first place is a nightmare, getting off it is almost as difficult.

The government hasn't made it easy for incapacity benefit (IB) claimants to get back to work. Current moves to overhaul the entire system and siphon claimants into the new employment and support allowance (ESA), with the added threat of benefit cuts if they fail to comply, don't fill me with much confidence.

The consultation phase for the welfare reform green paper, No one Written Off, closes today, and next Monday the first changes take effect. IB has been a rigid, all-or-nothing system; you can work, or you can't. It takes no notice of the many chronic and fluctuating conditions that keep people out of full-time employment, but which might allow them to work intermittently. Unfortunately, many Department for Work and Pensions (DWP) doctors – employed through private contractors – are still woefully inexpert at dealing with complex, unseen illnesses such as ME.

From October 27, a two-tier benefits system will operate. New ESA claimants will be divided into those who can do some work and a minority deemed unable to do any. The latter "support" group will receive a higher rate of benefit. The government aims to cut the numbers of claimants by 20,000 per year by applying more stringent criteria to the new work capability assessments. Given that these assessments are conducted without an independent disability adviser present, there is a real danger that people will get shunted into the wrong pen from the word "Go", and left there.

I remember my first medical. I sat in a soulless waiting room, having only just managed to get there by taxi. The benefits doctor I was finally admitted to see sat in a neat suit and listened with a completely blank expression on his face. He asked a few questions, ticked a few boxes, and declared: "You don't look ill." The stress of this encounter was enormous and I was close to tears. I'd been forced to leave a successful job in publishing. "Do you think I'm doing this for the laughs?" I wanted to ask.

The DWP appears to have some difficulty understanding sickness, as opposed to disability. If you roll up in a wheelchair or, better still, are carried in on a stretcher, they'll probably pass you, but if you can just about get through a 10-minute medical you'll have a hard time convincing them you're unfit for full-time work.

Despite this, I was relieved to discover I had passed – possibly because I can express myself reasonably well. But what of others who can't, or who simply don't understand how the whole complicated benefits system grinds inexpertly along?

My own problems began when I first developed flu-like symptoms on holiday. After a month of feeling constantly lousy, I decided to return home, thinking I had a virus of some kind. It felt like it. I could barely move. No one knew much about ME then, and, crucially, I wasn't told to rest in the early stages. I ploughed on, returning to work too soon.

Over the next few years, I was dogged by the same strange viral feeling that eroded my vitality and left me dragging myself through each day. I must have been in some kind of denial. I continued working even when I could only just leave my desk to get to the loo, and had to take taxis to and from the office. Eventually, my health collapsed entirely and I had to leave.

I spent most of the next five years at home, largely in bed. At worst, I could only sit up for 15 minutes at a time before resting again. I wasn't just tired; I felt very ill. I was diagnosed with ME, a neurological condition that attacks the brain and immune system. Despite the fact that tests commonly find ME sufferers have immunological and hormonal abnormalities, the medical profession is only just beginning to take it seriously.

When you've been incapacitated for several years, recovering health may be a gradual process. Very slowly I improved – initially I had maybe an hour or two of productive time a day. Unfortunately, there may be people who remain extremely unwell, or who continually relapse and then go into remission again. The government must make provision for this. It is just as important as rehabilitating those who can work. However, I fear that genuine cases will be overlooked.

When I finally felt ready to wean myself off IB, I discovered that the law dictates that claimants are allowed to undertake "permitted work" alongside their benefit for up to one year. After this time, they have to return to IB, or give up their benefits and work either full-time or for at least 16 hours a week to qualify for the disability component of working tax credit. Anyone able to work, say, 10 hours a week is breaking the law if they do so, and will have their benefit withdrawn.

How foolish – not least financially. Wouldn't the government save money by allowing anyone on the forthcoming ESA to work part-time, when their health allowed, and for an indefinite period? Yearly accounts could be submitted and money docked off benefit, as it is for self-employed people on housing benefit. Crucially, some benefit should remain in place if a person needs it, rather than being whipped away because they've made an effort to work when they are able.

I put these points last month to James Purnell, the work and pensions secretary, at the No One Written Off consultation event in London. It was the one policy area he tripped up on, and was unable to provide an answer. In fact, he didn't know his own policy, admitting: "I may be about to expose my ignorance here."

Nothing has changed. Only those in the ESA "support" bracket – the one that a minority qualify for if assessed as being unable to work – will, paradoxically, be allowed to work for less than 16 hours a week permanently if they satisfy limiting criteria, such as if they are under supervision or part of a hospital rehabilitation programme. No one written off? What about the vast numbers who want to work a few hours a week, whenever their health allows?

When I first called the Citizens Advice Bureau (CAB) to discuss the option of starting to do a few hours work a week, I was advised to think very carefully as there is no easy way of doing so, and it's very hard to claw back benefits again if your health fails. The threat of losing your benefit if you relapse is a great disincentive to starting work, so the law must be made more flexible. Illnesses, like the people who have them, do not conform to rigid criteria. I later spent many hours calling benefits helplines and was told much the same thing as by the CAB staff. One particularly candid adviser, frustrated by the hopelessness of a benefit that works against those it is meant to help, told me it was just "a really shit system".

After much research, I decided to try my hand at writing a few articles and to give the "permitted work" scheme a go. It felt like a huge risk and was very stressful, a situation that was not helped by the fact that when one benefit stops, others – such as housing benefit – are often suspended for months while the various departments work out your entitlement. Thankfully, this has just changed, so advisers liaise between government department on a claimant's behalf.

I now work part-time. I'm much better, although the ME hasn't yet disappeared altogether. Bit by bit, I've built up work as a freelance journalist, writing articles for newspapers and making features for radio.

Labour's five-year strategy aims to get 1 million IB claimants off benefit and into work. I worry that these people are a soft target for a government trying to outflank the Conservatives and prevent any room for manoeuvre over the emotive subject of welfare scroungers.

All claimants will have to be reassessed by DWP doctors, who, aware of the number-crunching targets, risk losing their clinical objectivity.

The 1 million figure began life before the economic downturn as a great electoral ploy. With 2 million unemployed expected by Christmas, it may become more of a liability. In effect, it may attack the weakest in order to pacify the strongest.

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