Pearl Kelly is awaiting a decision from a tribunal about whether to overturn the decision by the Department for Work and Pensions to cancel her benefits payments
A disabled woman who suffers from a rare condition that causes tumours to grow all over her body has had the benefits she relies on stopped by the government. Pearl Kelly, 21, has a genetic disorder called neurofibromatosis. It causes benign tumours to grow along her nerves all over her body.
In order to treat the condition she has had around 20 operations over the past 15 years and her first operation when she was just five-years-old. When she was eight-years-old doctors fused her spine to help fight the rare genetic disease. The operation stopped her from growing taller than 4ft 2 (127cm). Pearl, from Orrell Park, in Liverpool, also suffers from other health conditions including a curvature of the spine, rheumatoid arthritis, osteoporosis, and heart problems, the Liverpool Echo reports.
The young woman said she cannot walk without using crutches and also suffers from poor mental health . All of these factors, she said, means she is unable to work.
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She has now been told the Department for Work and Pensions (DWP) has stopped paying her personal independence payment (PIP) – a benefit awarded to people to help them with the added costs of disability. Pearl, who has contested the decision, said she needs the benefit, worth around £450 a month, to help with the costs of travelling to hospitals across the North West.
She is now waiting to appear before a full appeal tribunal when she hopes to overturn the decision. Pearl said: “I am an out-patient at several hospitals across Liverpool and Manchester. I have to use public transport to travel some fairly long distances. Sometimes my appointment might be first thing in the morning so I have to travel at peak times.
“And there are the cups of coffee and snacks while I am waiting around. Just the odd coffee and a biscuit. Although I receive another benefit I need the PIP money too.” Pearl said she has spent a year filling out massive forms to become eligible for the PIP benefit.
She said: “I first applied in April 2015 and became eligible in March the following year. Some of the forms I had to fill out were nearly 60 pages long.” Athough the benefit is not means tested, claimants are medically assessed by private companies who employ health professionals. Claimants need to secure eight points to be eligible for the benefit.
Pearl said: “I have found the whole process bewildeirng. I am someone that can can’t walk from one room to another without becoming short of breath. How can they say I am not eligible.” She also said that her childhood was complicated by her illness and that bullies made things worse. “I hated school because of the bullying. I was picked on because I was different. In the end though I just felt sorry for the bullies because they were so ignorant. ”
As a teenager she relied upon crutches to move around but still managed to get 11 GCSEs at grade C or above at Walton secondary Archbishop Beck. The school played its part by offering her assistance upstairs, helping carry her bags and providing extra comfy chairs. Pearl later spent two years studying at Hugh Baird College but missed large chunks of the course to poor health.
Pearl said that she was determined to fight the DWP. She said: “I need this money and I think I am entitled to it. I get out of breath walking from one room to another and cannot walk without crutches.
“Travelling around the North West on public transport is stressful and expensive. I need help. I am obviously hoping that the decision will be overturned at a tribunal later this year.”
A DWP spokesperson said: “PIP takes a much wider look at the way a person’s health condition or disability impacts them on a daily basis. The quality of assessments has risen year on year since 2015, but one person’s poor experience is one too many.
“We’re committed to continuously improving assessments and have announced we’re piloting the video recording of PIP assessments with a view to rolling this out widely. Under PIP 30% of claimants receive the highest rate of support, compared to 15% under DLA (Disability Living Allowance).”