Major survey on PIP assessments finds 80% of disabled people suffering worse health
A new benefits system for disabled people is making their health worse, leaving many isolated and struggling to pay for food and bills, according to a new report.
A major survey by more than 80 organisations found 79% of respondents said their assessments for personal independence payment (PIP) had made their health worse due to stress or anxiety.
More than a third of those who have had their funding cut in the middle of a benefits shake-up said they were struggling to pay for food, rent and bills, while 40% said they had become more isolated.
A small number even said the PIP assessment process was so stressful it was causing them to have suicidal thoughts.
The Department for Work and Pensions (DWP) said PIP was “a better benefit” than the old system and more people received higher levels of support.
But members of the Disability Benefits Consortium (DBC) warned their findings from a survey of more than 1,700 people showed that PIP is failing “from start to finish”.
Debbie Abrahams, the shadow work and pensions secretary, said: “It is deeply shocking that eight in every 10 of those facing PIP assessments find it makes their health worse, and two-thirds feel their claim was poorly represented by the assessor.
“This is an absolute indictment of the Tories’ punitive assessments and the miserable effect they are having on people trying to access desperately needed support.”
The research marks the first time that PIP, which is designed to help people with extra costs caused by long-term illness or disability, has been assessed in this fashion since it replaced the old system of disability living allowance (DLA).
The DBC survey found:
- Almost three-quarters (71%) of respondents found the PIP application form “hard” or “very hard”, and 11% of respondents were unable to complete it at all
- More than half (58%) said assessors did not understand their condition
- Around two-thirds (64%) who saw their claim form felt it “badly reflected” the answers they had given in their face-to-face assessment
The findings reflect long-standing concerns around PIP, such as a lack of understanding from assessors over mental health conditions and inaccuracies in assessments.
Phil Reynolds, co-chairman of DBC and senior policy adviser at Parkinson’s UK, said: “For the first time, these findings paint the true picture of what it is like to go through the complex assessment process for PIP.
“Shockingly, a small number of people told us the experience of claiming PIP was so distressing that it has caused new conditions to emerge, or even caused suicidal thoughts.
“It is clear that PIP is failing many people from start to finish so it is vital the Government work with us to get a grip on PIP and support everyone who needs it, instead of making their health worse.”
The DBC wants Government to urgently review PIP and make improvements, including simplified application forms, better knowledge for assessors and indefinite awards for people with progressive conditions, removing the need for them to constantly be reassessed.
Half the survey respondents said they were receiving less money under PIP than they were previously entitled to under DLA, or had lost their award completely.
A quarter of these said they were not able to get to medical appointments after their funding was cut.
The report also shows the number of decisions being overturned at appeal is increasing.
In 2013/14, 26% of decisions were changed in favour of the applicant. In the fourth quarter of 2016/17, this had increased to 64%.
Analysis suggests in 2016, around one in every 14 decisions made on PIP was eventually overturned in the claimant’s favour either at mandatory reconsideration or appeal.
The DBC say this suggests the assessment process is failing to make accurate decisions, leading to further stress for the applicant.
It is estimated people also face a 17-week wait for their appeal, without access to the financial support they need in the meantime.
A DWP spokeswoman said more than a quarter of PIP claimants received the highest rate of support, compared to 15% under DLA.
“We are committed to supporting people with disabilities and health conditions, which is why we introduced PIP to replace the outdated DLA system,” she said.
“PIP is a better benefit which takes a much wider look at the way an individual’s health condition or disability impacts them on a daily basis, and is tailored to suit each individual’s needs.
“The latest official research shows that 76% of PIP claimants are satisfied with their overall experience.”
More than 2.4 million PIP decisions have been made, and of these 8% have been appealed against and 3% have been overturned.
The DWP says in the majority of successful appeals, decisions are overturned because people have submitted more oral or written evidence.
PIP claimant: ‘It’s hard enough without feeling like the system is against you’
The Disability Benefits Consortium has warned that the personal independence payment (PIP) system for disability benefits is failing “from start to finish”.
Two PIP claimants tell their stories about trying to get help.
A pensioner with Parkinson’s had to take the Government to a tribunal after her condition was assessed as having improved.
Diane Barrett, 69, from Battersea, south London, was diagnosed with the disease in 2008.
Having received disability living allowance (DLA) for seven years, she was told during her reassessment for PIP that her needs had changed.
She ended up losing the £57 a week she was getting to pay for a mobility car.
“I was absolutely gobsmacked when the letter came,” said Ms Barrett.
“To be told I had improved when I’m living with a condition that is only going to get worse was horrible.
“Without the allowance I couldn’t have a car, which had a massive impact. It totally took my independence and my lifeline away.
“I find it hard to use buses and have fallen a couple of times when I’ve tried, so it was quite scary.”
She said going through the PIP process was a constant reminder of her diagnosis.
This stress and worry eventually led to depression, which fuelled a lack of sleep that caused her tremor and stiffness to get worse.
“I was sent my claim form after my assessment, there were so many basic details that were wrong, including saying that I lived in a flat with someone else. I live alone in a house,” Ms Barrett said.
“Despite these mistakes, my appeal was turned down. I ended up going to a tribunal and it took just 10 minutes for the judge to overturn the decision.
“As soon as it happened, my son and I looked at each other and cried with relief.
“I felt that finally someone was listening to me and believing me about how my condition affects me. It had been so stressful and confusing from start to finish, I was glad it was over.”
However, those with progressive conditions like Parkinson’s face being reassessed at regular periods to claim PIP.
According to recent figures from the Department for Work and Pensions (DWP), 3,500 people with progressive conditions were reassessed for PIP between April and October last year.
The Government says this is necessary to ensure people are getting the right level of support.
But Ms Barrett said: “The thought of being reassessed again in five years’ time is really worrying, it hangs over you.
“I wish the Government would think more about long-term conditions.
“People with conditions like Parkinson’s and MS are not going to get better, the system just does not take that into account.”
A man with Parkinson’s nearly had his mobility car withdrawn while his wife was on maternity leave with their second child.
Michael Gibson, 36, from Preston, was diagnosed with Parkinson’s when he was 18.
Depending on how his medication is working, he can be stiff and struggle to walk, or dyskinetic, which causes involuntary movements.
When his wife was on maternity leave, he was reassessed from DLA to PIP and was told he would lose his mobility car.
“It was a horrific time, I can’t use public transport so I didn’t know how I was going to get to work,” he said.
“As a father of two I was worried about paying the bills and this stress had a massive impact on me.
“I have never experienced my Parkinson’s symptoms as bad as when I was going through the PIP process.
“It was frightening, I felt like I had progressed 10 years with the condition.
“My employers have been really supportive but it started to affect my work and I had to reduce my hours. I was in a really dark place, I became very inward and depressed.”
Mr Gibson asked for a mandatory reconsideration so the DWP would reconsider the decision, but the process took so long that his car was due to be taken away before he had even got a response.
“I had to borrow money from my dad to pay for the car outright or it would have been taken away,” he said.
Figures from the Motability charity show 59,000 people have lost their eligibility for a vehicle since 2013 – 45% of all those on the scheme that have been reassessed.
Of these, more than 4,000 have since re-joined following a successful reconsideration or appeal.
Mr Gibson said he had a “terrible” experience with his PIP assessors, adding: “At one point I was asked how long would I have Parkinson’s for, and another assessor told me that I wouldn’t be eligible before she’d even started the assessment.
“Assessors are determining people’s futures with very little or no knowledge of the conditions people are living with.
“Under DLA I felt supported, but having that support taken away made me feel isolated and alone.
“It’s hard enough as a younger person living with a progressive, long-term condition like Parkinson’s without feeling like the benefits system is against you too.
“After months of stress and worry, the decision was overturned which was a big relief, but people with long-term conditions should not have to go through this.”
A woman whose teenage daughters are profoundly deaf said she has had a “horrendous” experience trying to help them claim PIP.
Anne McRae has two 19-year-old daughters, Emma and Rachel, who are profoundly deaf and wear cochlear implants.
Having qualified for DLA from birth, they have now been refused PIP.
Ms McRae had to apply for PIP on her daughters’ behalf because the DWP requires everyone to call and ask for a form, with Emma and Rachel unable to hear on the phone.
She said the assessors carried out crude tests, like making her daughters face a wall and try to hear things behind them.
“Aside from how dehumanising it was, it’s not even a valid test,” Ms McRae said.
“Our whole experience of PIP has been horrendous. My daughters have always been profoundly deaf, that’s never going to change, so why are they suddenly being denied support?”
She said their assessment reports made a number of incorrect assumptions about deafness, including that their eyesight would compensate for their hearing.
Ms McRae added that the assessment report made no mention of supporting evidence from a doctor, specialist teacher or a support officer from the National Deaf Children’s Society.
Susan Daniels, the charity’s chief executive, said 85% of the PIP decisions it has challenged have been overturned at appeal.
“All across Britain, deaf young people are being denied vital benefits – not because they don’t need them, but because the application process is not accessible for their disability,” she said.
“The Government must urgently make PIP applications and assessments fairer if vulnerable people are to get the support they need.”
A DWP spokeswoman said: “Under PIP, 29% of people receive the highest rate of support compared to 15% under the outdated DLA system, and more people with conditions such as MS and Parkinson’s are receiving the highest possible rates.
“PIP assessments are carried out by qualified health professionals who combine their clinical knowledge with an understanding of the fact that not everyone with the same disability is impacted in the same way.
“Decisions are made following consideration of all the information provided by the claimant, including supporting evidence from their GP or medical specialist.”
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