A pensioner with Parkinson’s says he has been forced to live in “Dickensian times” after he was denied Personal Independence Payment (PIP) benefit despite his debilitating condition.
It comes after a report by MPs found the system of health assessments for benefits “continues to let people down”.
Stanley Smith says he has been left taking antidepressants from the stress of battling with assessors as well as his illness, and being on a low income.
The 65-year-old said the DWP failed to understand the “fluctuating and degenerative” nature of Parkinson’s, from which actor Michael J Fox also suffers. Symptoms range from being unsteady and feeling unwell to tremors and stiffness or “freezing”.
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Mr Smith, from Shoeburyness, Essex, was a taxi driver for 40 years and diagnosed with Parkinson’s in 2019. In November he was forced to give up employment when he became too ill to work.
Employment and Support Allowance gave him £77 a week, which went up to £117 in March. The father-of-two first applied for PIP in August 2021, which would potentially give him a further£160 a week.
Personal Independence Payment (PIP) is paid to people with an illness, disability or mental health condition that makes carrying out everyday tasks difficult.
To qualify for the full amount, Mr Smith needed to score 24 points in an assessment on daily living. The more difficult someone finds day-to-day life and getting around, the more they are awarded.
He was awarded zero points even though his symptoms, including worsening pain, make working impossible.
“When I read the report I wondered if it was talking about the same person,” he said. “During the interview I had one of my involuntary muscle attacks and I couldn’t breathe. The interviewer said ‘do you wish to stop the assessment and do another day?’ I said ‘no, I can’t do this again’. I took 10 minutes to calm down.
They don’t understand Parkinson’s. When you tell them that on some days tablets don’t work as well, that you have to keep changing meds, they are surprised— Stanley Smith
“I tried to get benefits for the cost of living and nothing came from that, either. So we have just my wife’s wage. But she works in London and has to pay over £100 a week in fares. So we are just left with some of her money and £117.”
He says he often goes to bed in the day because he doesn’t put the heating on, and that he and his wife, Jackie, feel as though they are in Victorian times, enduring bleak hardship.
“When I was a taxi driver, I said to friends that we were going back to Dickensian times,” he said. “Lo and behold, my friends have now said I was right.”
Advisers at Parkinson’s UK helped him to appeal against the decision to award him no points, and he was then awarded just four. After a second challenge last month, a tribunal awarded him another nine points, making 13 in all but still far short of the 24 total.
As a result, he is due to start receiving another £126 per week but had to fight to get that.
Mr Smith believes there is little understanding of what Parkinson’s is, which has led to his battle to secure benefits.
He said: “They [the DWP] don’t understand Parkinson’s. They don’t realise how difficult it is. They think it’s just taking some tablets and it’s OK. When you tell them what your day is like, with your on and off times, that on some days tablets don’t work as well, that you have to keep changing meds and starting different ones again, they are surprised.
“It seems to be banging our heads against a brick wall with the system I have been paying into since the age of 15.”
A recent report by the Work and Pensions Committee found a “profound lack of trust” in the system of health assessments for benefits, which “continues to let people down”.
According to committee chair Labour MP Sir Stephen Timms, several measures must be put in place to improve the system.
Sue Christoforou, of Parkinson’s UK, said: “So many people with Parkinson’s come to us when they have been refused PIP to say that the assessment decision just doesn’t reflect their reality.
“The DWP’s own statistics show that between March 2015 and December 2022 well over a third (38 per cent) of PIP claims made by people with Parkinson’s were initially assessed incorrectly.”
A DWP spokesperson said: “Entitlement to PIP is assessed on the basis of the level of needs arising from a health condition or disability, rather than the health condition or disability itself.
“Mr Smith was assessed by a qualified health professional using all the information available to us at the time.”
