“I feel like a prisoner who every now and again is let out on day release,” Kelly Palmer, 38, says from her home in Newport, south Wales.
Palmer has Marfan Syndrome – a genetic condition that affects ligaments and organs – as well as fibromyalgia and needs a power wheelchair full-time. But when she approached her GP to apply for a chair after her health deteriorated, she was told she wasn’t eligible. Even though her disability means she can’t propel a manual wheelchair, she didn’t meet the threshold to qualify for a power chair. “There was no help,” she says. “It was just ‘goodbye’.”
As there’s no one else at home to help, for the last 18 months Palmer is largely stuck in the house and she only goes out once every three weeks or so, usually for hospital appointments and only if a friend can drive her there and stay to push the chair.
Desperate, Palmer has turned to the internet and launched a crowdfunding appeal online to try and raise the £5,000 she needs for a suitable power chair. She got the idea from some friends who had done the same to raise money for their own wheelchairs but says pride means she’s been “putting it off” as a last resort. “I didn’t want to have to beg,” she says. “But I didn’t have the choice.”
Crowdfunding is the practice of funding a project or venture by raising monetary contributions from a large number of people. The most popular way of doing this is through a number of crowdfunding websites, such as Kickstarter and JustGiving, which allows people to raise money for their own personal cause, a person in need, clubs, schools and communities through online appeals.
Palmer is by no means an isolated case. As the country celebrates paralympians at the World Para Athletics Championships in London this month, growing numbers of disabled people are unable to get the wheelchair they need on the NHS and are being forced to turn to the public. The amount of money raised for wheelchairs on JustGiving increased fourfold between 2015 and 2016, from £365,000 to £1.8m, according to exclusive figures seen by The Guardian. While some of that increase is likely to be down to better awareness of the site, it’s a trend that is continuing. From January to July 2017, there has been a 59% increase in donations to disabled people asking for help to fund a wheelchair compared with the same period last year.
“JustGiving is often where people come when they have nowhere else to turn,” explains Rhys Goode, public relations director at JustGiving. “It’s remarkable to see the increase in people having to crowdfund for new wheelchairs – an item that’s so essential to their quality of life.”
Disability charity Scope says it gets regular calls from disabled people experiencing difficulties with funding for wheelchairs. Jean Merrilees, a helpline adviser at Scope, says: “With wheelchairs sometimes costing in excess of £10,000 we need to see the funding pressures the NHS is facing addressed, so disabled people can access specialist equipment that supports independent living, rather than many continuing having to bear the brunt of these costs themselves.”
Whizz-Kidz, a charity that provides wheelchairs for young people, states that many disabled children are not being provided with a suitable chair by their local NHS wheelchair service.
Last month, medics at the British Medical Association’s (BMA) annual meeting unanimously passed a motion calling for wheelchair users to have “timely access to chairs suitable for their individual conditions”, after warnings that cuts in services, a postcode lottery of availability and delays means that disabled patients are increasingly struggling to get their wheelchairs on the NHS.
Hannah Barham-Brown, the junior doctor who triggered the motion at the BMA, had to turn to crowdfunding herself two years ago to buy her own chair. “When I tell people I had to crowdfund for a wheelchair, they are gobsmacked,” she says. Barham-Brown, 29, was diagnosed with Ehlers-Danlos syndrome (EDS) in 2015 during medical school. “I kept dislocating my knees,” she says. Within six months, she needed a wheelchair. But after going to her GP, she was told NHS wheelchair services would only offer her a heavyweight basic wheelchair or a £140 voucher towards another. Neither option was viable: Barham-Brown’s condition means a manual chair would dislocate her joints when she tried to push herself along and a suitable wheelchair would cost upwards of £2,000, money she didn’t have.
Barham-Brown had what she described as a meltdown. “Without a chair, I knew I wouldn’t be able to do this job I’d trained so hard for. I wouldn’t be able to be a doctor,” she says. In panic, a friend from medical school put up a crowdfunding page to ask the public for help. Within 24 hours, they’d raised £2,000 – enough for the wheelchair. It enabled Barham-Brown to continue her training in south London but she says it’s “mindblowing” that disabled adults and children are being forced to resort to asking strangers for help online.
“It’s the basic tenet of the NHS: you have a need and it’s met. But it isn’t,” she says. “People are housebound and trapped in their homes. Yet nothing is being done.”
Local GP-led clinical commissioning groups (CCGs) are ultimately responsible for securing and funding wheelchair services. A spokesperson for NHS England says it is working with the National Wheelchair Leadership Alliance – a group set up by Paralympian and crossbench peer Tanni Grey Thompson in 2015 to look at provision of wheelchairs through the NHS “to develop best practice standards as well as introducing personal wheelchair budgets to give people more choice on the best wheelchair for them”.
During 2017-18 all CCGs in England are replacing the existing wheelchair voucher scheme with personal wheelchair budgets, in which people are told upfront how much money is available for their wheelchair, based on an assessment of their individual needs and goals. A new national data collection has also been established which, for the first time, aims to centrally gather information on the quality of wheelchair services across England, including waiting times.
“The national data collection is a massive step forward in terms of understanding the needs of wheelchair users and what equipment is, and can be, provided,” explains Grey-Thompson. “However, in reality, it’s going to take some time for the information to be universally gathered and useful across the whole of England. This should be of a high priority in order to be able to provide the right equipment.”
The issue of wheelchair provision is likely to become increasingly pressing. In addition to wider NHS funding pressures, other limited avenues for wheelchair funding are being massively cut, including Access to Work – a fund delivered through Jobcentre Plus that pays for practical support for disabled people at work – and the motability scheme, which people can be awarded if they qualify for the higher rate of personal independence payments.
In Wales, where Palmer lives, wheelchair provision is commissioned on behalf of the country’s health boards by the Welsh health specialised service committee. A Welsh government spokesman says: “The provision is based and provided on clinical need. We believe Wales makes available the widest specification range of wheelchairs to meet patients’ needs in the UK.”
This is little comfort back in Newport. Palmer’s crowdfunding page has so far raised £1,500 of her £5,000 target. She says she is “beyond touched” by the public helping her – some give a pound because it’s all they have – but the stress of the prolonged process is damaging her mental health. She has no way of knowing if she’ll reach her target for her wheelchair or what she’ll do if she can’t.
“I should be able to go to the NHS and get help,” she says. “I shouldn’t have to wait months [through crowdfunding] to see if someone cares.”