The DWP disability benefits system has ‘failed people living with Parkinson’s for a decade’

“I had never been made to feel like a criminal before,” says Phil Bungay, a 56-year-old with Parkinson’s disease, as he recalls standing in court fighting for his disability benefits which were stripped away by the Department for Work and Pensions (DWP). 

“Going through the court process and being treated as a criminal was the lowest of the low for me. I’m not a criminal here. I’m just going through hoops to appeal because they got it wrong. It is unbelievable.”

Bungay was diagnosed with Parkinson’s disease 11 years ago. It is a complex, fluctuating and degenerative neurological condition which people experience in different ways. There are more than 40 symptoms, and Bungay says it can change from minute to minute.

Parkinson’s is unpredictable and that makes it difficult to understand, including for policymakers and benefits assessors. People like Bungay struggle to “fit into the boxes” set by the DWP, with forms asking him to describe how his condition affects his day-to-day living. 

• What would a fair disability benefits assessment look like? 
• ‘Stressful and depressing’: More of your stories from DWP benefits assessments

But his condition cannot be categorised in these black-and-white terms. He might be looking well in the afternoon “but they didn’t see that earlier in the morning I couldn’t move”. 

Bungay worked as a civil servant for the Ministry of Defence, but he had to give it up because of the impact Parkinson’s was having on his life. “That was a hard thing to take,” he says, “that I wasn’t employable anymore.” 

He was awarded the personal independence payment (PIP) following his diagnosis but he was aware that the DWP asks for claimants to notify them when their condition changes or deteriorates. His condition had worsened, but when he reported this and his PIP was reviewed, it was withdrawn completely. 

“I was astounded when they came back and said they were taking it all away,” he adds. “Parkinson’s gets worse over time. It doesn’t get better.”

Bungay went through the first stage of appealing – the mandatory reconsideration – and was refused PIP again, but he had his benefit restored to the full level when he appealed it at tribunal. And he is far from alone. 

Previous reporting from The Big Issue found the DWP rejects almost 90% of mandatory reconsiderations, but official statistics show 68% of claimants win their case when appealing the decision at tribunal, during which officials have more time to consider an individual’s case. 

A DWP spokesperson said: “We support millions of people with disabilities every year and our priority is that they receive a supportive, compassionate service. 

“In the majority of cases we make the right decision. All our disability assessors are qualified health professionals, and we are investing in their skills so that everyone has a positive experience when claiming PIP.”

The Big Issue has not seen evidence to confirm the DWP makes the right decision “in the majority of cases”. Campaigners fear many people cannot face the long and “traumatic” appeals process and accept the initial outcome of their assessment. This is recorded as a “right decision” by the DWP.

The number of overturned decisions is higher for people with Parkinson’s, according to the national charity Parkinson’s UK. Over a third (38%) of people with Parkinson’s had decisions changed at mandatory reconsideration between 2015 to 2022. 

Sue Christoforou, a senior policy and campaigns adviser in financial health at Parkinson’s UK, said: “The DWP has failed people living with Parkinson’s for a decade. And shockingly, the rate at which initial PIP decisions for people with the condition are overturned is, on average, 10% higher than for people with other conditions.

“DWP have confirmed our assumption that this is due to assessors not having a good enough understanding of how Parkinson’s affects everyday life and its fluctuating nature. This must change.”

Bungay was left without the financial support he needed to pay for his medication and believes he may not have survived without the support of his friends and family – including his wife and three children. He describes it as the “worst of times”. 

As a former civil servant, Bungay sees the necessity for paperwork but believes the entire process needs reviewing. “They need people assessing who know about Parkinson’s and understand Parkinson’s. I want to campaign for others, so they don’t have to go through the same experience I had to go through.” 

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