Without a wheelchair, three months can pass without Philomena leaving her terrace house in Liverpool. The fifty-three-year-old has multiple chronic illnesses – heart disease, double incontinence and chronic fatigue – and each makes it hard for her to physically move. COPD, on top of heart disease, means she gets breathless when she walks. Her right leg throbs from cardiovascular disease and fibromyalgia causes burning pain. She can make it around thirty feet on crutches – about the length of three cars – before the pain kicks in. “The pain is horrendous, even to get to my neighbours. I can’t walk anywhere.”
Still, after asking the NHS for four years for a wheelchair, she’s been repeatedly turned down for help. “Everyone just says, ‘there’s no money for wheelchairs.’ Like you can magic one [yourself ] out of nowhere.”
Ask a member of the British public and the impression is often that if a disabled person needs a wheelchair, the state will provide one. In 2017, YouGov polling commissioned by spinal cord charity Back Up found that this belief was so ingrained that 60 per cent of UK adults believed that people who need a wheelchair should only have to wait up to one month, or should be given one straight away.
But listen to Philomena describe her life and you soon get a clue of just how far this is from reality. It’s local GP-led services, CCGs, across the country that determine the policy and budgets for wheelchairs in each area, but just like with social care, as austerity heavily reduced independence funding, this service has been hit.
When Philomena asked her GP for help, she was told that the NHS was “hard-pressed at the moment” and that her CCG didn’t have funding for a wheelchair. Instead, adult social services provided her with a trolley – something to lean on and put food and drinks in as she pushes it around the house.
When she asked her occupational therapist, she said there “wasn’t any money for wheelchairs” and suggested Philomena buy her own.
That’s easier said than done. A suitable wheelchair often costs at least £2,000, with the most specialist as much as £25,000. For a family with health problems, this is beyond expensive.
It is a class issue as much as a disability one; while richer families will be able to find several thousands of pounds to buy a wheelchair, those on a low income will find it impossible on top of rent, utilities and food (households that are already much more likely to be living in poverty due to disability).
Philomena hasn’t been well enough to earn a wage since the 1990s, when she worked in a local off-licence. Her husband, a public sector tax worker, hasn’t had a pay rise for a decade. Once the two of them pay all the bills, they usually save for treats for their seven-year-old granddaughter – “A pound here. A fifty pence there.”
At that rate, if Philomena spent the money on herself, it would take her around 160 years to have enough for a basic wheelchair.
Philomena represents what is a widespread crisis of disabled people in Britain being left without wheelchairs. The NHS wheelchair charter, which was drawn up by campaigners before being adopted by NHS England, states that access and provision should be equal for all, “irrespective of age or postcode”, but it’s common practice for people to languish for years on waiting lists or to be turned down entirely.
A BuzzFeed investigation into wheelchair provision on the NHS in 2017 found almost a quarter of people referred by GPs to wheelchair services are not being given any equipment at all. It also uncovered an extreme “postcode lottery”: in some parts of the UK, disabled people are provided with the right chair, but in others, three-quarters of those referred are offered nothing by wheelchair services.
On top of this, it confirmed there are large delays in disabled people getting help: 96 per cent of areas are missing their target to supply all wheelchairs within the eighteen weeks guaranteed by the NHS constitution.
Even children aren’t guaranteed care by the state. Analysis in the Health Service Journal (HSJ) in 2018 showed that over 5,000 disabled children in England who need a wheelchair are waiting more than the four-month target for the equipment to be delivered, resulting in children struggling to go to school or be rehabilitated.
Wheelchairs are rarely seen in positive terms by non-disabled people. Flick through a media report mentioning a disabled person with mobility problems and the phrase used is typically “wheelchair-bound” – as if the wheelchair has contained the individual and they are stuck helpless in the corner of the room.
When Stephen Hawking died in 2018, cartoons and imagery used by many media outlets spoke of him being “free” of his wheelchair, with death seemingly a fortunate escape from the wheels and metal that “trapped” a great mind.
In fact, this is far from the truth.
While cultural perceptions of disability perpetuate the idea that wheelchairs are prisons, for disabled people like Philomena they represent freedom: the only way to see independence family, meet a friend or do everyday things.
“It’d be nice to say, ‘Let’s go to the shops,’” she explains. She recently saw a Batgirl outfit on Asda’s website for her great-niece – a little tutu – and a friend suggested they go and look at it in person.
She hasn’t been to Asda for almost a year, she tells me. She can’t. “I’m stuck in the house 24/7.”
This sort of isolation is a common consequence of poor wheelchair provision, including for those who only need one short term. The British Red Cross warned in 2018 that a UK-wide shortage of wheelchairs was leaving as many as 4 million people a year housebound and isolated, some of whom are terminally ill and are spending the last few months of their life trapped at home.
When I next speak to Philomena, it’s the day after a rare trip outside to the opticians. Without a wheelchair, she had to walk with crutches, a portable nebulizer sitting in her handbag for when she got out of breath. She was soon paying for it: as she got home, she put her crutches down and sat on the stairs, and her husband had to help her straight to bed.
Today, she can “barely walk”. Her arms are burning; legs “killing” her. “I feel like I’ve been run over by a bus.” It will take her days to get over the leg pains, but she tells me she’s got a hospital appointment tomorrow.
Her husband – himself recovering from a stroke – tries to reassure her, saying, “we’ll just have to hope the hospital’s got a wheelchair available.” “If my husband wasn’t there, I wouldn’t even be able to push round the ward,” she says.
Each day, Philomena lives with what you might call tantalizing independence. Even with council cuts to bus services, there’s decent public transport on her road; as she puts it, “I’m well-connected to the buses . . . if I could get to the bus stop.”
Her housing association put in a handrail on the outside door of the house and widened the steps so she could use it with her crutches. But without a wheelchair, she can’t physically make it past the bottom of her road. “It’s like living in the Victorian times,” she says. “We’re locked away so no one knows we exist.”
It’s hard to feel that this isn’t the definition of a nation’s literal hidden shame: disabled people trapped behind closed doors because, if you can’t walk, the state still won’t provide a wheelchair. Disabled people in Britain have long had to live without wheelchairs.
Despite being born with a disability, I didn’t get my first wheelchair until I was ten. Before then, I got around in a large buggy that, in the 1990s, health services thought was the best way to transport a growing child on the way to secondary school. In the end, my parents got help from a charity, Whizz-kidz, to afford a suitable wheelchair.
But in recent years, it feels as if this situation has got worse. As cuts to the social care and social security system chip away at disabled people’s independence, squeezed budgets mean that CCGs are increasingly turning down people like Philomena for wheelchairs.
Some will only provide a basic wheelchair – rather than one that’s suitable and safe for an individual’s disability. Others who used to offer “vouchers” – in essence, a scheme that allowed CCGs to contribute a small sum towards a chair – have scrapped them.
This situation has quietly reached such dire straits that in June 2017, medics at the British Medical Association’s annual representative meeting in Bournemouth unanimously passed a motion calling for users to have “timely access to chairs suitable for their individual conditions”.
It perhaps gives a hint of the lack of priority given to disabled people’s lives that there’s little information on what help wheelchair users are actually receiving: there aren’t national eligibility criteria for receiving mobility equipment and until 2015 there wasn’t even centrally-gathered data on wheelchair services across the country.
Philomena makes dark jokes about how fraught she is – “I say to my GP, can’t you just cut my leg off? Least then I’d get a wheelchair” – but this desperation is real. In recent years, I’ve spoken to a number of disabled people who have resorted to buying a cheap wheelchair on the Internet after being rejected by NHS wheelchair services. One student told me she spent £50 on an untested wheelchair from Amazon because she had no other option. She went on to incur permanent injuries.
The wrong wheelchair can be as damaging as none at all: research by ComRes on behalf of the Toyota Mobility Foundation in 2018 found that 90 per cent of wheelchair users in the UK have experienced pain and discomfort as a result of their mobility devices. Others are turning to crowdfunding to raise money for a suitable chair, where having to ask strangers for help on the Internet is akin to the modern day “cripple with a begging bowl”.
Crowdfunding websites, such as Kickstarter and JustGiving, are best known for allowing people to raise money for their own personal cause: a community project or a school club.
But cuts to services means they’re increasingly being used to fulfil what’s a serious medical need; the amount of money raised for wheelchairs on JustGiving increased fourfold between 2015 and 2016, from £365,000 to £1.8 million. Philomena says a friend suggested she set up a GoFundMe page but she couldn’t bring herself to. “No,” she says, adamantly. “Asking a stranger for money. We weren’t brought up that way.”
The issue of wheelchair provision is likely to become increasingly pressing in the coming years. From 2018, all CCGs in England began replacing the existing wheelchair voucher scheme with personal wheelchair budgets, in which people are told up-front how much money is available for their wheelchair, based on an assessment of their individual needs and goals.
And yet this is happening at a time of vast cuts in resources. In addition to wider NHS funding pressures, other limited avenues for wheelchair funding are pulled away, from cuts to Access to Work – the fund that pays for practical support for disabled people at work – to tightened eligibility for the Motability scheme, which provides, as well as cars, powered wheelchairs in exchange for benefits.
Philomena used to be on a “lifetime award” of disability benefits until the reforms set in a couple of years ago. She had double pleurisy during the assessment – “I could hardly breathe from the pain,” she says – but regardless, the officials cut it. She used to use her disability benefit to help run a car – petrol and insurance costs – but since her benefit’s been cut, she’s had to give that up.
With no car or wheelchair, Philomena is clear about the consequences: “They took my little bit of independence.”
As we finish talking, she tells me that she and her husband are currently saving to take their granddaughter and daughter to a local theme park day: grandparents go free and other tickets are fourteen pounds. Most importantly, wheelchairs are provided without charge. “Just a day out with Nanny,” she says. “She’ll just be glad Nanny’s out.”
Extract from Crippled: Austerity and the Demonisation of Disabled People by Frances Ryan, which will be published by Verso on 11 June. Get 30 per cent off and a free ebook here.