‘My Three-Year Battle with the DWP Over PIP: I Just Didn’t Want to Go On’

Natalie Bloomer and Samir Jeraj speak to Karen White about her difficult experience of being moved from the Disability Living Allowance benefit to PIP.

Karen White has multiple sclerosis (MS) and osteoarthritis. She needs a walking frame to get around and is often in pain. 

For the past three years, the 46-year-old’s life has been made much harder due to a long battle with the Department for Work and Pensions (DWP) for money she should have been entitled to.

Until October 2016, Karen was receiving Disability Living Allowance (DLA), which allowed her to take care of her health and live a fuller life. She was able to arrange transport to take her to an MS support centre in a neighbouring town and would buy vitamins and supplements to build up her strength.

All that changed when the DWP informed her that she would need to be moved onto the new Personal Independence Payment (PIP), which replaced DLA in 2013.

She was told to attend a test which would determine if she was entitled to the benefit. The test awards points based on activities a person has difficulty doing or requires help to do. This can include things like getting dressed, preparing food or taking a journey. 

Karen’s long fight was for around just £35 each week. A small sum for many, but a significant amount for her. 

Karen was scored zero points and her claim for PIP was refused. 

“It feels terrible when you hear that,” she says. “You worry a lot.”

She went on to challenge the decision and, the following May, a tribunal decided that her money should be reinstated, albeit at a reduced rate. But, just several months later, she received a letter from the firm Capita, which carries out the assessments for disability benefits, telling her that she needed to provide more evidence to support her claim.

“I thought it was done after the tribunal, but then they were asking for more,” she says. “I started gathering all of my documents together to send in and hoped that would be enough.”

Then, at the beginning of 2018, she received another letter – this time telling her that she needed to make a new claim. She did as she was asked.

“In July 2018, they told me my claim was unsuccessful and they stopped my money,” Karen says. “It led to a breakdown, I just didn’t want to go on. I stopped taking all my medication, it was a bad time.”

Despite how low Karen was feeling, she decided to continue her fight and appeal the decision again. The long wait for a tribunal hearing left her struggling to make ends meet.

“I had to start using a food bank,” she says. “It helped so much, but I wasn’t able to take care of my diet in the same way as I had before. I lost weight and muscle mass, which has made me much weaker. I joke that before I had MS I could do kickboxing, now I can’t even kick a box.”

A survey carried out by the MS Society, of people with the condition who lost support in the transfer from DLA to PIP, found that 65% said the process had a negative impact on their MS and 39% had to reduce spending on food. 

“It led to a breakdown, I just didn’t want to go on. I stopped taking all my medication, it was a bad time”

Karen White

In 2017, a report into PIP and Employment Support Allowance (ESA) by the Commons’ Work and Pensions Select Committee found that incorrect decisions and other problems with the application and assessment process had fuelled a lack of trust among claimants. It was noted that “in a sizeable minority of cases, things go very wrong indeed” and that the “consequences – human and financial – can be enormous”. 

This month, almost a year after Karen made her last appeal and nearly three years since she first had her benefits cut, she won her case at the tribunal. Her money will be reinstated and will also be backdated, meaning that the DWP will owe her a lump sum on top of her monthly payments.

“They told me the result there and then,” she says. “Last time I had to go home and wait for them to send me the outcome, but this time they just asked me to wait outside. Five minutes later they called me in and said I was successful.”

Karen’s long fight was for around just £35 each week. A small sum for many, but a significant amount for her. 

“It will really take the pressure off,” she says. “I can’t wait to start eating healthy food again. I’ve won, it’s all over for now.”