I took the DWP to court and won - but it was the worst time of my life
Steve Johnson, a self-employed farmer based near Thirsk, North Yorkshire, took the DWP to court to fight for his entitlement to disability benefit PIP after he was diagnosed with the progressive neurological condition in 2020.
Johnson, who also cares for his wife Gilly, who lives with MS, currently receives universal credit and the daily living component of personal independence payment (PIP).
When he first applied for PIP, he was awarded zero points.
He felt the assessment assumed that because he worked in agriculture, he must be physically fit. However, he was struggling with his symptoms of Parkinson's, such a his right-sided tremor, difficulties sleeping, and loss of strength.
Charities like Parkinson's UK have raised significant concerns about how recent and proposed government benefit cuts could disproportionately affect people with conditions like Parkinson's because symptoms can present differently from one day to the next.
Current benefit assessments are often under scrutiny for failing to understand or account for fluctuating conditions like Parkinson's, leading to people like Steve being refused PIP payments by the DWP.
While PIP payments avoided the chopping block in the latest round of government cuts, the disability benefit is up for investigation next Autumn, when the government will explore the impact of restricting the eligibility criteria for the payment.
Success rates for taking the DWP to tribunal for PIP appeals are consistently high, with around 60-70% of cases assessed at court overturning the DWP's decision, Johnson said the stress of the process significantly worsened his symptoms.
He told Yahoo News: 'My stress levels went through the roof. It just made my symptoms 10 times worse.'
'They twisted everything I said'
Speaking about applying for PIP, Johnson told Yahoo News: "I applied for PIP with some assistance. I had a telephone assessment and I got one of the most upsetting letters back I've ever read.
"They twisted everything I said. There's several times in this refusal letter that said, because I cared for my wife, I must be all right. Because I worked in agriculture, I must be all right.
"My GP was incensed. He read the letter and said, do they have any idea what Parkinson's is? He then wrote to them to back me up.
"My mandatory reconsideration came back, even with extra evidence, And it was just a cut and paste. It was just a generic, computer says no response. It didn't even mention Parkinson's.
Left without an option, Johnson decided to take his PIP case to tribunal.
While the farmer was advised that he had a very strong case, he didn't realise how nerve-racking it would be.
He said: "It was so hard. I remember trying to drink a glass of water because my throat was dry, and then my tremor went into overdrive.
At one point, his home was pulled up on Google Maps by the court while he was questioned about walking to the local shop.
"They said, according to Google Maps, your local village shop its 750 metres away. Could you get to the village shop? Could you walk?," he explained.
"I said, I don't know, I've not walked to the village shop two or three years now.
"They made me give an answer on a guess. All of a sudden, a guess was taken as a definitive answer.
"I was just mentally, physically, emotionally, absolutely drained," he added.
A few days later, Johnson found out his appeal was successful.
"We didn't get the decision there and then we got a letter a few days later and sure enough, they've given me the full 12 points for daily living, and four for mobility," he said.
While Johnson was overjoyed to finally have the support, the experience took its toll.
"It was two hours of the worst time of my life," he added.
'It's like a hidden trap door'
Sadly, the farmer's benefits battle is far from over.
Now, he is fighting to challenge the DWP after his transitional protection was removed from his universal credit payments when his income dipped.
When a person is taken off a legacy benefit — like working tax credits, in Steve's case — and moved onto universal credit, they have a 12-month guarantee that they will not be worse off when they move to the new system.
But as Johnson explains, self-employed farmers experience "feast or famine", so his income can vary significantly from month to month.
Earlier this year, the farmer was alarmed to discover his universal credit benefits support dried up, and in his worst month, he received zero support.
He told Yahoo News: "We went through three months of where I wasn't doing enough work, I wasn't selling cattle, but I had to pay the contractors. So I had a lot of bills and so I had a negative bank balance.
"But it triggered this lower threshold rule, where the DWP apparently says if your income dips below a certain level — which they don't tell you about this until it happens — the government takes off your transitional protection.
"We went from getting £986 to £800, then zero the next month."
Steve is hoping to take part in a mass appeal investigating the impact of lower income threshold issues affecting transitional protection.
"To me, it is fraud. How come the DWP are not carrying on my profits but my losses are included in my totals?
"It's like a hidden trap door they don't really talk about. Then when I started challenging it, I was told it's in my claimant commitment.
"It isn't in my commitment at all, it's only written in the law itself. It's hidden."
'We'll keep fighting'
While Johnson receives the universal credit health top-up, people with Parkinson's hoping for support after April 2026 are likely to see their support halved under the government's welfare bill, Parkinson's UK has warned.
While the government said 200,000 people with severe conditions will still be entitled to the higher rate of universal credit health top up once the payments are cut £97 p/w in April 2026 to £50 p/w, there are fears Parkinson's patients will not qualify as severe because of a lack of understanding about how Parkinson's affects day to day life.
As the chart below illustrates, those with neurological conditions will be among the hardest hit should the PIP cuts go ahead next year, with around 38% of claimants projected to be affected.
"The government's decision to cut universal credit costs is appalling. We believe that, despite the government's claims, savings are being made by effectively making people with Parkinson's ineligible for the higher rate health element," Juliet Tizzard, the director of external relations at Parkinson's UK, told Yahoo News.
"The bill clearly states that someone must be constantly unable to do certain tasks to qualify. This will penalise people with Parkinson's, whose symptoms come and go. Until we can be certain that people with fluctuating conditions will not be penalised, we'll continue campaigning for a fair system.
"We're thankful to the MPs who tried to stop the changes to universal credit, and for every campaigner who raised their voice.
"We stopped the cuts to PIP, and while we're disappointed by the result today, this setback won't stop us. We'll keep fighting for better support, care and treatment for the Parkinson's community."
The government has been approached for comment.
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