When ministers announced an overhaul to welfare payments last week that will result in an estimated 1.2 million disabled people losing eligibility for personal independence payments (Pip), they did not mention the sweeping knock-on effects.
Because Pip is a “gateway”, any disabled person who loses the benefit will not only lose that income but other entitlements too, such as free prescriptions and council tax deductions. Most starkly, removing someone’s Pip will mean their unpaid carer losing carer’s allowance – in effect pulling away two main strands of a family’s income at once.
The Guardian speaks to three readers who could be affected.
‘So many of us would love to work if we could’
Before Will Evans fell ill with fibromyalgia and arthritis, he dreamed of using his film studies degree to launch a career as a film-maker. Then disability hit and he had to move back to live with his father in Wallasey, Merseyside.
Now 29, Evans has his father as his carer. After his father’s council job was cut during the Covid pandemic, the two of them rely on Pip, universal credit (UC) and carer’s allowance to get by.
But he fears he will not qualify for Pip under its new, tightened criteria. “The system is already stacked against people with invisible or variable disabilities. I may have one ‘good day’ followed by three when I can barely get to the bathroom,” he says.
If Evans stops being eligible for Pip, he would lose £593 a month. But, in a domino effect, his father would also lose his entitlement to carer’s allowance and with it, £307 a month – money that goes on food, fuel and car fees.
When the work capability assessment is scrapped by 2028 and the only way to get the health component of UC is through Pip – Will could lose another £400 a month.
The result would be devastating: the family’s total income would drop by more than two-thirds. “That’s an amount which is absolutely not possible to sustain us,” he says. “We’re barely making ends meet now. We already had to move in with my brother because we can’t make rent on our benefits.”
Losing Pip would also mean losing his entitlement to free prescriptions. Before Evans became eligible for these, the bills from his pharmacy were mounting: “It got so bad that the NHS sent me a penalty charge.”
Thanks to Pip and its “passport” to more help, Evans has been able to manage his health well in recent years – from orthopaedic bedding to travel to hospital appointments – but he fears the proposed cuts could cause a “catastrophic relapse”.
“Being dismissed as a young person refusing to seek work, or someone who finds it ‘easier’ to live off benefits, couldn’t be further from the truth. In reality, so many of us would love to work if we could,” he says. “These cuts will just make a vulnerable group suffer even more.
‘We live in fear of the whims of successive governments’
Back in the 1990s, before an onslaught of ME, arthritis, fibromyalgia and a heart condition hit, Rebecca Jenkins was a care worker. Now too sick to work and relying on disability benefits, the 56-year-old is still caring – this time for her elderly mother, Susan.
At 88, Susan Jenkins has multiple disabilities: she uses a wheelchair because of arthritis and is currently in hospital after a hip replacement as well as being assessed for dementia. In their bungalow in Gloucestershire, Rebecca helps her mother with all aspects of daily living: getting her in and out of bed, using the toilet, cooking and shopping. The physical toll of one disabled person caring for another is heavy. “It’s knackering,” Rebecca says. “If I overdo any physical effort, I’m in agony for days.”
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Jenkins is one of the many family carers who do not get carer’s allowance. Because her mother often stays in hospital, Rebecca was advised by the Department for Work and Pensions that any caring payment would be stopped each time. Instead, the two of them live off Rebecca’s Pip alongside other entitlements. Disability is expensive, so the cash does not stretch far. Hiring an adapted taxi to get Susan to the hospital in her wheelchair, for example, costs £70.
If Rebecca loses Pip, it would have a “huge knock-on effect” for the family, she saysd. She would have to search for work to pay the bills, meaning she would have to pass her caring responsibilities on to the local authority. “If I lose my disability benefits, my mum will lose her unpaid carer. Then she’ll have to go into a nursing home. In my case, the cut will actually cost [the government] money.”
Pip is also a gateway for Rebecca to a catalogue of other help: from free dental care, free prescriptions and council tax reductions to car tax exemption to a railcard. “I’ll lose all of them when I’ll be miraculously cured,” she deadpans.
The gallows humour masks her dread. “It’s like we live in fear of the whims of successive governments. I can’t sleep at the moment, I’m so scared.”
‘Pip made my son’s life so much more bearable’
When Nicola Herring heard about the upcoming disability cuts, she wrote to the social security minister, Stephen Timms, asking for help. Herring cares 24/7 for her 18-year-old son, Francis, as well as her young daughter. Cerebral palsy means Francis can only use his right hand, while his brain injury leads to regular seizures. “I go everywhere with him because he can’t be left alone,” she says.
Francis’s father works full-time at a magazine but the family rely on Pip and Nicola’s carer’s allowance to – as she puts it – “pay for the things Francis would not need if he was fully healthy”.
No help is available on the NHS for his conditions so disability benefits are the only way Francis can access treatment, such as osteopathy, physiotherapy and oxygen therapy. “Pip has made his life so much more bearable. It’s helped him learn to write and swim and make music,” says Herring. “All these things bring joy to his life. And as a family, it’s enabled us to hold on to hope for his future.” Both benefits are gateways to other support: Pip helps the family get accessible concert seats “if we ever brave going out” – in the accessible area, staff are trained to respond to seizures – while carer’s allowance means Nicola is able to collect pension credits.
Due to caring for Francis full time, Nicola has been unable to take on paid work. “I did try before and loved being a dinner lady for a while, but even that was impossible to sustain because school kept ringing me to collect my son after seizures,” she says.
But without benefits, she would have to find work again “to pay for everything Francis needs” and ask the local authority to care for him full-time. “If the government goes ahead with these cuts, then new care homes are going to have to be available,” she says.
Nicola tells me what she emailed the minister: “I love my son very much but caring is emotionally and physically draining. We can’t take any more.”
* Some names have been changed
