Sarah has just found out that she will likely be able to keep her personal independence payment (PIP) after months of worry.
The 40-year-old mother of one works from home, which allows her to juggle life with being a new parent and her disabilities. Chronic fatigue syndrome in her joints means she regularly experiences brain fog and exhaustion, and needs help.
And it’s her PIP that makes this possible, helping her to afford a carer, stay in work, and spend time with her baby.
Claimed by 3.7 million people, the health-linked benefit at the heart of Labour’s proposed welfare reforms is designed to help with extra costs incurred by living with an illness or disability.
The government’s concessions on plans to cut welfare spending now mean that Sarah won’t be subject to stricter eligibility criteria when next assessed for the benefit.
Instead, from November 2026, only new claimants look set to be subject to the tighter criteria, under Labour’s bill currently going through parliament.
But Sarah says she is struggling to see this as a victory.
“If there’s another Sarah who’s born a few years later, and ended up in this situation, it’s still just as appalling,” she says.
“It’s encouraging some disabled people to throw other disabled people under the bus. And it’s vicious, because it relies on some people being scared enough to say ‘well, we’ll take what we can get’.”
And like so many others, Sarah did not find applying for PIP an easy process to begin with.
‘It feels really deliberate’
“It feels like you’re being tripped up constantly,” Sarah says. “It feels really deliberate, how difficult it is. It feels extremely deliberate. Because there are so many ways it can be made more accessible to disabled people.”
Halfway through her assessment for PIP, Sarah’s infant daughter started to cry in the other room. This caused her to panic, and she shouted to her husband that the baby might need changing.
Because of this, “the assessor said I was clearly able to respond to my daughter’s needs and assess what she needed”, Sarah says.
“But I said to him, I can’t care for my daughter on my own, I rely on other people doing that for me. I need somebody with me while I’m with her.”
None of this was included in his report, she claims.
And it’s not just Sarah.
Ginny’s husband Tim was diagnosed with myotonic muscular dystrophy in 2006, a progressive genetic condition that affects muscles and movement.
The mother of two works part time while also caring for her husband full time. His PIP award means Ginny is entitled to a £200 carer’s allowance, which she says is essential to support her family.
“Tim doesn’t like to admit it, but people frequently can’t understand what he says. Every day I’m asking him to repeat himself as his wife, and I know him well,” Ginny explains.
“He was asked to repeat himself at least five times during the assessment. But when it came to the report, it said the assessor had no problem understanding him.”
Ginny says the assessor also wrote down that Tim was managing to work part time for 25 hours a week as a library assistant. He was actually working just 25 hours a month, just over six hours a week, Ginny says.
‘Do you have a dog?’
At a PIP assessment, the assessor will decide if an applicant has limited ability to carry out daily living activities. They do this by asking applicants to carry out a range of activities, awarding them points based on how limited their ability is.
According to one former assessor, opening questions might include: “How are you doing today? How did you get here? Do you have a dog?”
An applicant could be forgiven for thinking these questions are just small talk, their PIP assessor being friendly and trying to ease them into the process.
But in most cases, the assessment has already begun, the former worker says. How they answer these questions could be the difference between a lifeline to pay for their health-related costs or nothing.
The former assessor, who wished to remain anonymous, said this approach is standard for PIP assessors. It is permitted under the DWP’s PIP assessment guide, which recommends assessors carry out “informal observations” that may “show discrepancies”.
“As soon as you say to them, ‘I’m here to do the assessment, is that OK?’ and they say yes, it’s started,” she explains.
“And then you’ll comment, you’ll look around the room for photographs of them on holiday, of children. You’re looking for evidence that they’re not telling the truth.”
According to polling by disability charity Sense, over half (51 per cent) of disabled people with complex needs report feeling humiliated during benefits assessment. A further 45 per cent said the process made their symptoms worse.
The charity’s policy adviser, Evan John, said: “I think sometimes when you hear some of the discussion around PIP, somebody might think that it was an easy benefit to claim, but that experience is really divorced from the experiences of disabled people.”
“We’d like to see a system that treats disabled people with dignity, that assesses people fairly, but doesn’t make them feel like criminals for trying to access the support they need.”
‘You have to fight tooth and nail’
Neither Sarah nor Tim was awarded any points at their PIP assessment. Instead, they asked for a mandatory consideration, but were turned down and faced a lengthy wait for an appeal at a tribunal.
“We went to mandatory consideration fully aware that they would just turn that down because that seems to be the standard with them,” Ginny says. “But that was just a step to go to appeal.”
Sarah was only given the lowest rate of PIP after the tribunal, while Tim was awarded his in light of more medical evidence.
Around 56 per cent of PIP assessments resulted in a reward between 2019 and 2024. However, around two-thirds of decisions are overturned at the tribunal stage, independent of the DWP, by a panel of decision-makers, including a judge.
“You have to fight tooth and nail,” Ginny says. “All the government’s talk about ‘people just are getting this too easily’ or ‘supporting people who have the most severe conditions’.
“In my book, my husband has a severe condition and it just feels like they’re redefining disability to suit themselves.”
It remains to be seen whether the government’s concessions over its welfare plans will be enough to appease wavering backbenchers, with MPs set to vote on the measures on Tuesday.
A DWP spokesperson said: “The fact is that PIP assessment suppliers and healthcare professionals are involved in the process but are only one part of the evidence used – they have no role in the decision-making process, and are clearly instructed not to base their opinions solely on the situation seen at assessment.
“We’re creating a sustainable welfare system that genuinely supports sick and disabled people while always protecting those who need it most, and at the heart of this is our review of the PIP assessment to ensure it is fit for the future.
“We will work with disabled people and a range of experts on this as we deliver our Plan for Change.”
