A few weeks ago, I met Toni. She contacted me after reading one of my posts on the Brixton Advice Centre blog because she’s angry about the way people claiming disability benefits are perceived and treated, and wanted to share some of her own experiences of the system.
Toni has a complex medical history that traces back to when she was 15 and her father dragged her down a flight of stairs by her hair and repeatedly stamped on her back. It was only 15 years later later, when her back pain had rendered her largely housebound (although she was still working at that point), and after a three-year wait, that she eventually had an MRI scan. Numerous crush fractures to her spine were identified.
The same scan also revealed lateral recess stenosis (a narrowing of the spinal canal), degenerative disc disease (involving two collapsed discs), nerve route impingement (which has since led to bladder problems), sciatica, arthritis and modic changes in the bone. The crush fractures were a direct result of her childhood abuse, but some of the other issues were genetic – just incredibly bad luck. The doctor at the time told her that she had the back of a 70 year old. She was 29.
Her back problems are only part of the picture, however. When she was 18 she underwent an emergency operation to have a large cyst removed from her ovaries as a result of severe endometriosis – a condition that caused internal bleeding every month during her period. She had eight laparoscopies – laser surgeries – before eventually having a hysterectomy at the age of 32. The surgeries have left her suffering from extensive abdominal adhesions. They regularly rip, causing severe pain.
In 1997 she was diagnosed with persistent viral fatigue, which later developed into ME. And in 2005 her GP confirmed that she also had arthritis in her hands and wrists. She has other, less severe, conditions such as asthma and Sjogren’s Syndrome.
It took Toni many years to even consider the idea of claiming benefits. She comes from a northern mining town where, she says, the idea of benefits was anathema. “You work hard and just get on with it”, she says. “To claim benefits would be to give up. You just don’t do it.”
It had taken four years of her working situation steadily declining to get to the point of claiming
Her back pain was preventing her from going out to work, however, and she’d begun working from home, transcribing research interviews and focus groups. Finally, in 2000, she had the MRI. When the doctor explained how serious the results of the scan were, and that her situation would only degenerate, she realised she had to do something. By this point, she was physically unable to do enough work to sustain herself. She applied for Disability Living Allowance (DLA) with reams of medical records and supportive testimony from hospital doctors as well as her GP – but was initially turned down. She appealed, with help from an advice agency, and was turned down again. The agency persuaded her to take the case to tribunal, which she describes as one of the most humiliating experiences of her life, and she won. This then enabled her to apply for a blue badge for her car.
It had taken four years of her working situation steadily declining to get to the point of claiming: from working full-time, to part-time, to working from home. She didn’t want to admit to herself that the situation was as bad as it was. She gets very angry at the idea of disability benefits being a lifestyle choice: “You try everything before you get to that point,” she says. She’d gone from a job that she loved working for a homelessness organisation where she earned a decent salary to £296 a month, plus housing benefit to cover her rent.
She’s furious at the idea that she would choose this life. “Back pain and ME put you on the malingerers list,” she says. “You’re constantly fighting disbelief. At best, you’re a burden. At worst a lying scrounger.”
In 2003 she moved to Lambeth, to the two-bedroom house she still lives in. Social services arranged an occupational health assessment and the property was modified for her, with handrails and step-free access.
Toni has had to re-apply for DLA every five years and undergo a new medical assessment each time. In 2014 her claim was suddenly rejected. Despite sending in the forms with the requisite evidence in good time, she was told it only reached the Department for Work and Pensions six days after the deadline – even though she had her Post Office proof of posting. Immediately all her benefits were suspended and she lost the blue badge for her car.
She was told that her re-application for DLA would now be treated as if she’d made a claim for Personal Independence Payment (PIP). It took 42 weeks for this “new” claim to be processed, and the only reason she was granted PIP was due to her bladder problems. Her back issues and ME were effectively discounted. She is now one of many thousands of people who have lost their mobility allowance as a result of being moved from DLA to PIP – and it means that she no longer has an automatic right to a blue badge and car tax.
People are being pushed towards homelessness and suicide by the system
Toni is an educated, highly intelligent person who understands the intricacies of the benefits system. But even for her the process was baffling and gruelling. She says she can’t imagine how hard it must be for more vulnerable claimants. One of her neighbours has mental health issues that mean he can go days without being able to leave his house, eat or talk to anyone – let alone communicate with his case worker. Toni only realised he’d lost his ESA when he started asking her for small amounts of money. People like him, she believes, are being pushed towards homelessness and suicide by the system.
Her own situation has been exacerbated by the Bedroom Tax. Despite the fact that her home has been specifically modified for her needs by Lambeth Council, she now has to pay £20.92 a week as a penalty because she has a second bedroom – which currently houses her wheelchair and is where carers stay when they need to spend the night. The reason she doesn’t want to move is not only that her home has been specifically altered to suit her needs, but also because of the support network she has built up – vital to anyone with mobility issues, she says. Her neighbours check in on her to see how she’s doing, pop to the shops and run errands for her. To lose that would be to lose what increasingly limited connection she has with the outside world.
Discretionary Housing Payments do exist and local authorities have the ability to make additional payments to offset the Bedroom Tax in situations like Toni’s. In her case, they initially awarded her £16 towards the cost. But she says that you have to claim this every three months and many disabled people like her can’t face going through this humiliating and uncertain process so frequently. Being awarded it once is no guarantee that you will be awarded it again, and the pot of money the Government has made available to local authorities is limited, so many people with disabilities are turned down.
Despite having finally been granted PIP, Toni’s situation is by no means secure. Regardless of how much medical evidence there is for how serious her conditions are, and that they will only worsen over time, she’s already worrying about failing the next application, whenever that might be. It’s a constant state of uncertainty and anxiety. Failed medical assessments, often directly contravening advice from medical professionals, are increasingly common, as I have been hearing from the team at Brixton Advice Centre (see my earlier interview with Nathan Scott, BAC’s Welfare Benefits Specialist). And that’s when medical assessments are carried out at all.
“If I thought the last five years were bad, things are about to get a lot worse”
A further uncertainty is looming in the form of Universal Credit, which the Government is currently trialling, and is expected to have rolled out nationwide by late 2017. It is intended to simplify the benefits system, and will replace means-tested benefits and tax credits such as Job Seeker’s Allowance (JSA) and Employment and Support Allowance (ESA). Toni fears, however, that it is just a way for the Government to lump all benefits claimants together, irrespective of their ability to work, and force those will severe disabilities to attend further assessments and back to work programmes with threats of sanctions for those who fail to jump through the new hoops.
Whatever the outcome, it will mean getting to grips with an entirely new way of claiming benefits – one that can only be claimed online or, for those unable to access the internet, by using a premium rate phone line. And at the same time, the Government announced in its latest budget that just as capital gains tax is being reduced, significantly, for the wealthiest taxpayers, an estimated 640,000 people currently claiming Personal Independence Payments will see their benefits reduced by as much as £3,000 a year. “If I thought the last five years were bad,” says Toni, “things are about to get a lot worse.”