ITV News Deputy Political Editor Anushka Asthana reports on the struggles disabled people face to get their disability benefits and the humiliation the assessors put them through
The government has spent £443.5m fighting disabled people who decided to appeal after being turned down for two key benefits, freedom of information data has revealed.
The research, carried out by the charity Scope and shared exclusively with ITV News, finds that £200m of the total was spent resisting genuine cases, in which the initial rejection was later overturned.
Altogether, more than 1.2 million decisions concerning Personal Independence Payments (PIP) and Employment Support Allowance were found to be wrong between 2013 and 2021.
The figures come as two whistleblowers - who both worked as PIP assessors - claimed the system was to blame - arguing it was "not designed to help disabled people but to try to block them from getting benefits".
They spoke to ITV News as part of an investigation in which claimants themselves also described the difficulties they faced trying to navigate the system that can result in a £300 a month benefit to help them adapt their day to day lives to cope with their disabilities.
Carol Vickers from Horsforth in Leeds and Arabella Tresilian from Bradford on Avon, near Bath, both described their assessments as horrific. "It is an absolutely traumatising experience," said Vickers, who has eight conditions that leave her in almost constant pain.
Tresilian, who has autism, PTSD and daily suicidal thoughts, described it as "one of the most traumatic events of my life".
She said her assessor initially said they were the receptionist and observed her for some time before introducing herself as the assessor.
She was so distressed during the session that she began ticking and stymieing, and the assessor asked if she needed an ambulance, but still judged her fit for work.
Tresilian appealed, eventually winning at tribunal - but said that was also deeply stressful.
"The tribunal is horrendous," she said, expecting a friendly room but instead finding herself at a court of justice in front of a judge.
"The fact that this is what we make disabled people do is astonishing. For me, I associated being in court with having done something criminal. I would do pretty much do anything to avoid going through PIP again."
Meanwhile two former assessors - who worked in 2016 and 2020 - both said they were:
Ordered by managers to downgrade the points they wanted to award to claimants.
Told to mark disabled people down if they arrived at appointments well-kempt – with neatly brushed hair or clean-shaven.
Asked to assess people with conditions for which they had little specialist knowledge.
Andy Hill was the only one willing to speak on the record because his work as an assessor was now more than five years ago, and he is no longer registered as a nurse.
“I feel like I can speak on the record now where before I have not spoken on the record, because this is obviously still continuing,” he said.
“The whole process of the interview was trying to catch people out – watching them from the moment they came in.”
He said that if someone touched their shoulder during an assessment in which they had claimed they had arthritis and could not brush their hair – he would be told to mark them down.
He also described a “catch 22” in which one woman was refused a home assessment and then marked down for making it into the test centre.
Hill said that his managers asked him on three occasions to downgrade scores, and that when he refused in writing, they would not accept that. That is why he resigned after four months.
A second whistleblower who did not want to be named – but who worked as an assessor in 2020 – described a similar situation. He lasted seven months, but said by then all eight of the people he trained with had already quit.
He said that despite this being a benefit that you should be able to access while working, he was told to mark people down if they managed to hold down a job.
He said he was told to tie together different factors - so if they said they struggled to brush their hair, but later in the interview said they could cook that would be seen as an inconsistency.
Being well-kempt would go against you, he added, saying the final straw was when the computer scored a woman clearly in need with just four points, and he felt he needed to go back and manipulate the system to get her over the line as she clearly ought to qualify. "She deserved pip," he said, "but it was a 'computer says no' situation."
Both men said they could be assessing people with conditions on which they had no specialist experience (for example a mental health nurse assessing scoliosis) but would have just 20 minutes to prepare.
The stories chime with Vickers' experience. She said that it felt as if turning up with neat hair and in a smart dress went against her. It's as if they have a certain type of disabled person in their mind, she said, and she didn't fit. "But what is a disabled person supposed to look like".
Vickers - who has faced other separate assessments that qualify her for a blue badge and assistance dog - found the process too stressful and decided against taking her case to tribunal.
She said the experience left her feeling "a lesser person."
James Taylor, director of strategy at disability equality charity Scope, said:
“Amid the biggest cost of living crisis in a generation, we’ve exposed that the government has spent hundreds of millions of pounds fixing wrong decisions.
“Life costs more if you’re disabled, and disability benefits are meant to help address these costs. But wrong benefits decisions throw disabled people’s lives into turmoil."
He said too many disabled people had to "endure degrading and stressful benefits assessments with assessors who don’t understand their condition".
But a spokesman for the Department for Work and Pensions said: “We strongly refute allegations from former assessors, based on anecdotal recollections from several years ago. They paint an inaccurate, misleading picture of assessments.
“Assessment providers have consistently exceeded claimant satisfaction targets based on independent research and, in the vast majority of cases, the right decision is made first time.
“Our priority is that the millions of people we support every year get the benefits to which they are entitled and to ensure they receive a supportive and compassionate service.”
The department highlighted figures that show since 2013, when PIP was introduced, 4.7 million initial decisions were made – and only 5% were overturned at appeal.
However, if those that go to appeal - over half are overturned at the first stage known as mandatory reconsideration, while among those that reach tribunal - 75% are overturned.
The DWP also said the system had been improved so that decision makers can proactively contact claimants if they think specific evidence could help their claim. A disability green paper published last year also looks into what more can be done.