‘The assessor’s report was full of lies, flaws and fabrication’, says woman with MS, 48, denied disability benefit Janette Harrison says losing £300 a month of her benefits has meant she is forced to make the choice between electricity and food.
Janette Harrison has good days and bad days – as is the nature with multiple sclerosis (MS). “Some days I’m okay, then the next I need to nap three times a day due to the crushing fatigue,” she explains. Indeed, some days she can walk without a stick, then others she needs to use one because her balance, vertigo and vision problems have kicked in. Struggles with her bowel and bladder are a daily constant, however, and mean she can’t use public transport. She says her symptoms – including muscle weakness and numbness – make her unable to hold down a job where you’re expected to be fit for work each day. When the now 48-year-old first developed her symptoms back in 2000, she had to quit her job as a warehouse operative and was awarded the full rate of disability living allowance (DLA) – but now she is forced to manage on £300 less a month. “I have to make the the choice between electricity and food.” She also had to give up her Motability car – which she says has taken away the little independence she once had. “I can’t use public transport because of my bowel and bladder issues and I certainly can’t afford taxis,” she said. “When I’ve been sick and had to cancel plans repeatedly, one by one friends dropped away. “I’m trying to stay positive but losing my car has made me feel even more isolated.”
20-metre rule ‘unfair’ Janette, from Sheffield, is one of thousands of people with MS who have had support taken away since Personal Independence Payment (PIP) began to replace (DLA) in 2013. The MS Society says figures show that one in three people who have the incurable disease had their benefits downgraded and in all, £6 million had been taken from MS claimants since the introduction of PIP.
anette says she cried during her assessment interview when asked about the impact her MS had on her. Not for sympathy, but because she genuinely feels heartbroken by the way the disease has robbed her of the life she once knew. However, this was not noted on her report. What was noted was she could walk 20 metres – which she challenges. The assessor said that I could walk 20 metres because I came to the door – but my hallway is only around nine metres Jeanette Harrison Under DLA, the measure used to determine eligibility for mobility support was 50 metres, but under PIP this has been reduced to 20 metres. Now anyone who can walk one step over 20 metres – roughly the length of two double-decker buses – won’t qualify for the higher level of PIP’s mobility component. “The assessor’s report was full of lies, flaws and fabrication. Answers I gave weren’t recorded in the report. For example, I explained that on some days I can’t drive or cook because I don’t feel it would be safe, but that wasn’t written down. “The assessor said that I could walk 20 metres because I came to the door – but my hallway is only around nine metres. And even if I could one day, with MS it doesn’t mean I can the next day. “She said I was able to pick something up from my coffee table – I don’t even have one. She said I looked presentable – but there’s no note that I sometimes need help with having a bath or shower. My sister helps me with that as well as cooking as I drop things. “She even said I looked ‘well-nourished’ which I took to mean I was fat. I’ve been on steroids for 20 years and been unable to exercise because of my MS so I found this offensive as a measure of how well I am. “She said she saw me bend down and put a harness on my little dog which I didn’t – my sister had been and done that and left it on him. There were so many discrepancies it made me think they’d mixed up my assessment with someone else’s.”
Hannah Smith was told she wasn’t entitled to Personal Independence Payment despite her muscle weakness and mobility struggles. The 28-year-old, who suffers with relapse-remitting multiple sclerosis, says she was treated like she “wasn’t a human being” during her assessment for the benefit. She says the assessor insisted she stand up three times despite her protestations that attempting to was causing her extreme pain. She relies on crutches or a wheelchair to get around and has crushing fatigue, brain fog, pins and needles and numbness. Hannah, from Peterborough, Cambridgeshire, told i: “I was made to feel like a liar when I asked for help. I want the Government to know what they’re doing to us, what they’re putting us through. They treat sick people like criminals.” After a year-long battle to appeal the decision, a tribunal ruled in her favour last month – but she is still waiting for the money which will be back-dated. Constant struggle I’ve asked the Department of Work and Pensions (DWP) to explain why they think I was entitled to the full benefit at first and now 16 years later I’m doing better when I have an incurable, progressive disease but they have no answer Jeanette Harrison Jeanette appealed to a tribunal and a hearing was held in July last year but she was unsuccessful. “I felt like I was a criminal on trial being cross examined. I felt like they were making out I’m lying about my illness.” Jeanette says the cut back in her benefits has meant she is no longer entitled to full housing benefit – and she now has to pay £48 a week and this leaves her with £60 a week for all bills and food. “It’s a constant struggle financially. Some days I really need the heat on because my muscles are cramping up, and I need to use the emergency credit on the meter. That means the next week I have to pay it back and go easy on food. “Diet is known to be extremely important for the health of MS patients. Eating fish rich in omega 3 acids is thought to slow down the disease but I can’t afford fish. Jeanette has the relapse-remitting type of MS, which means she has attacks or flare-ups of symptoms followed by periods of full or partial recovery. “Each relapse leaves its footprint. I’ve asked the Department of Work and Pensions (DWP) to explain why they think I was entitled to the full benefit at first and now 16 years later I’m doing better when I have an incurable, progressive disease but they have no answer.” The DWP has been approached for comment. Jeanette is supporting the MS Society’s Enough campaign. The charity has launched a petition calling on the government to scrap the 20-metre rule as the measure for the higher rate of mobility support.