Is Labour abolishing illness?

The new rules on incapacity benefit stake everything on a major gamble: that a large proportion of c

Incapacity benefit has become one of this year's favourite scare stories. Hardly a day passes without a new headline deploring its soaring costs and the rising numbers of claimants who get "something for nothing", at the expense of decent, hardworking taxpayers. We are told that we are footing an outrageously escalating bill for 2.4 million people, a million of whom shouldn't be on the benefit at all, and each successive work and pensions minister vows to be more ruthless than the last.

The true picture is somewhat different. The unreported version, which can be culled from Department for Work and Pensions (DWP) data, is that only 1.4 of the 2.4 million actually receive any payment, the rest get national insurance credits only, and numbers have been falling since 2003. The basic benefit is worth barely £3,000 a year. After two small rises in the first year there is no further increase, other than index-linking. All those who get the benefit have to pass a rigorous "personal capability assessment" (PCA) with doctors appointed by the DWP; and they can be re-examined at any time. The audited estimate of fraud is under 1 per cent - the lowest of any part of the social security system.

Nonetheless, the 2007 Welfare Reform Act is now being implemented across the country. It replaces support, as of right, for illness/disability (one of the planks of our rapidly disappearing welfare state) with a new, conditional employment and support allowance. Claimants are held on a basic allowance until it is confirmed that their capability for work is limited. This is determined by a "work capability assessment" tougher than the old PCA. Those deemed capable of one day returning to work (and the arbiters are health professionals rather than doctors) must engage in a series of "work-focused" interviews and activities. These include, among other things, "condition management", which in practice is likely to consist of group sessions loosely based on cognitive behavioural therapy. All this brings an additional slice of benefit that can, however, be cut for those who do not engage in it without "good cause" - a potential loss of 40 per cent of income. Ultimately, any whose capability for work remains limited through failing to follow medical advice, or "any prescribed rules of behaviour", face a period of disqualification. (A further provision of the act, to be piloted in nine areas, is that people served with Asbos - antisocial behaviour orders - can face cuts in their housing benefit for refusing local authority offers "to help address any problem behaviour".)

A main selling point of the reform was the great savings it would bring. It would staunch the outflow of benefits and get many people into jobs where they would pay tax and provide for their old age. This government's cherished goal is an employment rate of 80 per cent of the working-age population - though it is difficult to find any reasoned argument in support of this since our present rate of 75 per cent is, with Canada's, the highest in the world. The government accepts that employers must be paid to take on people with an illness record and, for the time being, it has pledged not to cut the benefits of existing claimants. Any immediate savings, therefore, can only come from bumping as many as possible off the benefit, shaving future benefit levels (already well in hand), and making it harder for newcomers to get it in the first place. Delivery is being farmed out to private agencies paid by results - which means, of course, the setting of targets. The next few years will be a bad time to have a crippling accident or succumb to a serious disease, particularly a psychiatric or neurological one that does not have obvious outward symptoms.

Blaming the "cheats"

The reform of incapacity benefit has been over ten years in the making, leaving in its wake a dense trail of commissioned reports. A curious thing about this voluminous material is how little information it contains on the actual health conditions for which benefit is paid. This is no accident, for the reformers long ago made up their minds that claimant numbers are too high, therefore a large proportion - usually put between a third and a half, but lately upped to 70 per cent in some quarters - must be spurious. An appeal to history is repeated like a mantra that, back in 1979, only 700,000 claimed the old sickness/invalidity benefits. Since then, money has been poured into the NHS while health care, living standards and longevity have improved beyond all expectations. People must be healthier, which proves that huge numbers are exploiting a slack and obsolete system. Who is to blame, apart from outright cheats? It can only be the self-indulgent, who fancy themselves sicker than they really are, and complacent GPs who let them think they are too ill to work.

Crucially, the reformers bracketed illness with disability. The disability lobby had long argued that "disability" was a discriminatory label imposed by society, and it was bent on removing the barriers to work that excluded those so labelled and kept them in poverty. But the bracketing brought confusions - for those with disabilities may be extremely fit (consider the disabled athlete), whereas the able-bodied can be extremely ill. More confusion arises with conditions such as "stress", "anxiety" and "chronic fatigue" that sound trivial. As for "back pain", how unreasonable is it to take time off sick for something best dealt with by a stiff upper lip and the odd aspirin? It is easy for those in good health to pooh-pooh such things, agreeing with the government that "Work is the best therapy".

The government's declared mission is to "liberate" claimants, to bring them into its "reformed, coherent welfare state for the 21st century". It seeks to overturn a culture based on the "medical model" of illness that allows them to "drift" on to long-term benefits without realising that "symptoms, feeling unwell, sickness and incapacity are not the same" - hence the appeal of cognitive behavioural therapy, which it understands as a treatment that will talk the sick into believing they can lead normal lives.

Doctors - so often the refuge of desperate people trying to find out what is wrong with them - should as far as possible be excluded from the process. Even those working for the DWP have opinions that are "unfounded, of limited value and counter-productive", while GPs are "unaware of the importance of work, the absence of which leads to depression, poor health, higher rates of suicide and mortality, poverty, and social exclusion". (The quotations are from a 2005 study from the Unum Provident Centre for Psychosocial and Disability Research at Cardiff University, whose ideas and rhetoric infuse the reform. Unum Provident is an American firm, the largest disability insurance company in the world, which is currently in litigation in different countries for refusing to pay out on some of its policies.) A private agency has now taken over the running of its first GP surgery here, and doctors dealing with disability living allowance are advised not to invite patients to explain how their condition affects them.

Features of the reform are familiar from other policy areas. First, a demonisation of a needy or vulnerable group, followed by a rebranding: so claimants become not even "clients" but "customers" (as in the just published "Commissioning Strategy" document); incapacity benefit becomes employment and support allowance; sick notes are redrafted for doctors to certify, not what patients can't but what they can do. Next come "partnerships", on an unchallenged assumption that the public sector has failed. The new system is farmed out to for-profit or non-profit-making agencies paid by results. This entails targets, and where targets are set, sanctions follow, for any who "fail to recover".

There are features of the new programme that look intelligent and humane, doubtless owing much to the efforts of the disability lobby. They include a longer and more flexible bridging period (and a back-to-work grant) between benefits and work, and a broader view of "work- focused" activities. The crunch will come with those described as not able or prepared to engage "because [of] the nature and severity of their health condition, or more a matter of attitudes, perceptions and expectations which may or may not be accurate . . . It is a question of what the claimant cannot do vs what they will not do."

For the reform stakes everything on a gamble: that a large proportion of claimants, present and to come, are fit enough to work. There seems no way of proving or disproving this, other than trying it out, at the risk of much waste of public money, and much personal grief. Deliberate rejection of the "medical model" deprives us of all we might have learned (from the wealth of data available) of the impact of illness on our society.

I have scratched my head long and hard over this reform (among other things sending out lengthy submissions to all concerned during the long consultation phase in 2005-2006) because so much in its theory and rhetoric contradicts my own experience: of chronically and seriously ill family members and friends, of several years as a Mind volunteer, and further years of peripheral involvement in action groups for chronic fatigue conditions. All this has indelibly impressed me with the courage of many who live with horrible complaints, the sheer hard work involved in their day-to-day coping, their relentless search for any amelioration, let alone cure, often at costs hard to spare from limited resources.

I have witnessed, too, and at close quarters, the hurt and stress of living difficult lives as people have to do, in a perpetual culture of disbelief and threat, where some of the most valiant are blamed for their conditions and conflated with the alleged "can't work, won't work" unemployed. For the message of the reform that comes across, for all its fashionable rhetoric, is that a person is valued only as a productive unit. Compassionate cases aside, those too ill to work are outside society and money spent on them is wasted. Sickness, disablement and inability to work have no place in a modern society - they can't and shouldn't be afforded.

No one pretends that illness is not a blight, imposing personal and social costs going far beyond the financial; but - pace the government - no one as yet knows how to remove it from the human condition. Why waste valuable time and resources on an ill-founded reform, when they could instead be used to further understanding of the real impact of illness on our society?

Alison Ravetz is a professor emeritus of Leeds Metropolitan University who writes on housing policy and welfare reform

This article first appeared in the 05 May 2008 issue of the New Statesman, High-street robbery

Mike Niles/PEAS
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How to keep a girl in school for 56p

In Uganda, a strip of fabric can help lift families out of poverty.

“Every school holiday, we lose ten to 15 girls. They elope or conceive.” I’m sitting in an orange-brick house, mint-green and pink paint flaking off the walls. This is the front line of an ambitious social experiment: trying to lift families out of poverty by convincing them to educate their daughters.

My guide is Paul Lyavaala, the head of school at Kityerera High in Mayuge, eastern Uganda. The son of a local dignitary, he studied in the capital, Kampala, but returned home to run this institution, which has 605 students, 58 per cent of them female. Before the British charity PEAS opened Kityerera, students faced a ten-kilometre walk to the nearest secondary school.

Most of the school’s pupils come from homes like this one, just ten minutes’ walk from the gates. There are few possessions in the front room here – a grain silo, a vivid poster of the country’s president, Yoweri Museveni, unironically photoshopped into various Rambo-style poses – but there are handmade doilies on the table.

The homeowner, Yusuf, never went to school; he depends on agricultural labour, digging in a nearby field for himself in the morning and for others in the afternoon. One of his eight children comes to meet us, introducing herself as Phionah. She is 18 and hopes to train as a nurse. The country sorely needs girls like her – there is one nurse for every 11,000 people – but the training costs two million Ugandan shillings (£445), and her family does not have the money.

Further down the road, Paul greets another family: a father and his two wives. Two months earlier, the second wife’s teenage daughter Precious had a baby, Moses. Many schools wouldn’t have allowed her to return but Kityerera has, and she comes home every lunchtime to breastfeed. “When they found out she was pregnant, they were afraid she would be ashamed and feel small,” Paul says, translating for us. “They were extremely happy the school let her come back and gave her free time to breastfeed.”

Precious is lucky, he tells us afterwards. The family believes in witchcraft, and a few years ago might have thrown her and the baby out for bringing bad luck and attracting the disapproval of neighbours. Earlier, on the short drive to the village, we had passed a mound of rocks by the road. “They caught a thief yesterday; he stole a motorbike,” Paul had observed, with no visible emotion. A pause. “Mob justice.”

Yusuf and Phionah. Photo: Mike Niles/PEAS

Uganda is a beautiful country: iron-red soil and lush green grass. It defies easy characterisation. Middle-aged men hold hands unselfconsciously in public, but in 2013 the parliament debated a bill that would have made homosexuality punishable by death. Poverty rates have fallen dramatically in the past two decades, but 37.8 per cent of the people still live on less than £1 a day. Yet in Kampala you can (if you have the money) eat a takeaway chicken with ginger and spring onion that tastes like Chinatown’s finest. The recent arrival of Chinese investment money is obvious – the highway running from Entebbe Airport to the capital is plastered with signs in Mandarin next to half-built roundabouts.

 I arrive a month after the presidential election, which brought about the unsurprising re-election of Museveni. The victory was helped by his chief rival, Kizza Besigye, being under house arrest. That said, the appeal of continuity under a strongman – Muse­veni has been in charge since 1986 – is more understandable when you look at some of the countries that share a border with Uganda: Rwanda to the south, the Democratic Republic of Congo to the west, Kenya to the east and South Sudan to the north.

I’m here as the guest of PEAS, a charity supported by the New Statesman which runs 28 schools in Uganda and two in Zambia. In recent years, most development money has been focused on primary education, pushed by the second Millennium Devel­opment Goal, which states that every child in the world should complete five or six years of schooling. In 1997 Uganda began to make primary education available to all, and it now spends 900 billion shillings (£200m) a year supporting the policy, though Museveni’s government is troubled by rising dropout rates.

At secondary level, those are hugely magnified. Even schools supported by charities need to charge fees to become sustainable in the long term, and the cost, plus books and uniform (between 25,000 and 35,000 shillings, or £5.50-£7.70), is too much for many parents. Children are also often needed at home to do seasonal work, or they get married young, or families decide there is no point educating their daughters – hence Paul Lyavaala’s gloom about the numbers of pupils who disappear from the rolls over the summer holiday.

***

Travelling through rural Uganda, I get used to double-takes and occasional cries of “Mzungu!” (a Bantu word, first used for European explorers, that is now applied to any white person). Yet the class sitting in front of me at Kityerera High could not be more polite. There’s a formality to schooling in Uganda that jars with my recent trips to state schools in London. The uniforms – orange dresses, and white shirts with grey trousers – are immaculately washed and pressed even though the school offers little in the way of laundry facilities. This school has a “senior woman teacher”, Lilian ­Wamai, and a “senior man teacher”, Moses Kibita. There is one laptop, which belongs to the headmaster, Albert Ondonyi.

The school has gathered pupils to talk to me about their lives and aspirations. Jonathan, 17, loves music but wants to be an aeronautical engineer. Eighteen-year-old Felistus is the third of six children and one of the few boys to join the “Girls’ Club”. The children’s names – Isaac, Zakaria, Fatumah, Aloysius – reflect the country’s religious ­diversity, with a population that is 44 per cent Catholic, 39 per cent Anglican and 10 per cent Muslim.

PEAS puts extra effort into female education, with the support of money made available by the UN and NGOs. (The boys at ­Kityerera tell me they are annoyed that their dormitory, unlike the girls’ one, doesn’t have solar-powered lights.) All the research suggests that better-educated women are healthier, are more able to work for money, marry later and have healthier children. “Educate a girl, education a nation,” reads a sign stuck into the grass.

Sitting in a cool classroom, we talk about the Girls’ Club, an after-school group the school has established to try to retain more female pupils. Here, they do what we might call PSHE (personal, social, health and economic education) and learn skills such as basket-weaving. The boys help by collecting the raw materials, such as papyrus reeds or palm leaves, from nearby swamps. At the local market, a small basket might sell for 2,000 Ugandan shillings (44p) and a large one for 10,000 (£2.20). The profits help ­pupils buy extras they need.

There is one particular extra I’m interested in because it can make a huge difference to girls’ chances of making it to the end of secondary education: sanitary towels. At the school canteen, a pack of disposable pads costs 2,500 shillings (56p), putting them out of reach for many pupils. The girls have to use rags, or whatever else they can find. Some parents keep them at home and they lose a week of lessons every month.

As girl after girl tells me how much she worries about standing up in class to find blood all over her orange dress, I remember how much the same thought preoccupied me as a teenager. At my school, we compulsively shared stories of the apocryphal girl who had started her first period during a choir recital and had fled the assembly hall, eternally shamed as a scarlet stain spread across her uniform.

Mixed up with embarrassment here in Uganda is a fundamental issue of hygiene: managing a period without running water or sanitary bins can be messy and smelly. It might be only an eggcup of blood, but often it feels like a deluge. Across the developing world, and in refugee camps, a lack of safe, clean, single-sex toilet facilities exposes women to violence and disease.

For that reason, the girls and boys of Kit­yerera are well coached in telling Western visitors about menstruation; I’ve never had a 15-year-old boy talk to me about periods before, never mind half a dozen of them. Two years ago, the girls in Kityerera were ­issued with AFRIpads, made by a local company. Reusable, washable sanitary pads clip into a fabric holder that can be slotted inside knickers. There is only one problem: they are supposed to be used for not much longer than a year. So the girls want more.

PEAS is trying to identify more of these small-scale ideas that can have larger benefits. At another school, this one in Malongo, near Lake Victoria, five hours’ drive from Kampala, Annie Theresa Akech from the board of governors tells me how important it is to let parents pay in instalments. (Subsistence farmers and fisherfolk can rarely produce a lump sum.) Yet the schools do charge fees, because the aim is for all of them to become self-sustaining within a year and to be run and staffed by local people. Solar panels provide electricity, which in turn ­allows for the installation of computer labs. None of the PEAS schools uses corporal punishment, in contrast to a nearby primary school we visit, where a long, swishing cane keeps the children in line.

In this context, sanitary pads – and the craftwork on offer at Girls’ Clubs that makes it possible for pupils to buy them – are liberating. They offer equality, helping girls get as much out of school as their brothers do. They free girls from the extra burden of worrying that they will be shamed in front of their classmates. They give girls in Uganda what they need: a chance.

Helen Lewis stayed with PEAS at its house in Kampala. You can donate to the charity here: peas.org.uk

Helen Lewis is deputy editor of the New Statesman. She has presented BBC Radio 4’s Week in Westminster and is a regular panellist on BBC1’s Sunday Politics.

This article first appeared in the 11 August 2016 issue of the New Statesman, From the Somme to lraq