When Jean Parker lost her PIP payments in 2015, she found that not only her assessor, but also her appeal judge, had a complete lack of understanding of brain injury.
Despite having been in receipt of benefits for three years, and having submitted medical evidence, Jean was deemed to have no cognitive impairment and scored 0 on all components of her assessment.
When I went for my interview the first thing the assessor told me was that she hadn't looked at my previous claim and she would do so later. That threw me straight away.
The 66-year-old, who lives in Wirral with her husband John, lives with the lasting effects of a subarachnoid haemorrhage including fatigue, headaches and memory problems. This can make everyday tasks such as choosing the right toilet cubicle, catching a bus or giving a cashier the right change, a near impossible task. But Jean felt her PIP assessor made light of her daily struggles.
"To some people it might seem trivial, but a simple thing like going to the ladies or gents toilets causes problems for me," she said. "I still have to stop and work out what the signs mean. I often get it wrong and the assessor made light of that.
"I can't catch the bus because I can't recognise when I need to get off unless I have someone with me. My assessor asked why I can't just get a taxi. But if the driver needed directions, I wouldn't be able to tell them.
"I have no problem using a card machine, but I can't count change. I have to give the person at the till more money than needed and trust they give me the right change. When you put all of the little things like that together, they become an issue."
Jean's previous assessor had a good understanding of brain injury, but she could not say the same of her most recent assessor.
The first assessor was a physiotherapist. He fed back to me what he concluded from our conversation, to double check if anything was wrong. But my latest assessment felt pre-empted. It felt like she had already made up her mind. The assessment was rushed and she seemed preoccupied on her computer.
"The report stated that I had no cognitive impairment. If I had scored some points but not enough to receive PIP that would have been easier to accept. But to score zero on every component was definitely incorrect. The assessor never asked me any questions that tested my memory, so I don't know how she could have arrived at some of her results."
Because of this dramatic change in score, Jean appealed the decision. But the appeal judge also had a lack of understanding about Jean's daily struggles.
"The judge said he had read all of the evidence and was quite happy with what was written so he didn't need to ask any questions," said Jean. "I didn't go into an oral hearing expecting to be dismissed from speaking. I felt like I didn't have a voice."
His report stated that either the first assessment was incorrect or I had improved. That was like saying I shouldn't have received PIP in the first place or I had improved substantially enough not to need it. It was such a kick in the teeth.
People who are over 65 whose PIP payments ended more than a year ago cannot renew their claim or make a new claim. Jean's PIP was stopped just before her 64th birthday, leaving her unable to try and claim for PIP again.
She had the option to apply for Attendance Allowance, entitling her to less money than before. But while living with effects of brain injury, and caring for her sister, she could not face going through the process again.
"At that point I might have taken it further but my sister had ovarian cancer and was living with us. Mentally, I couldn't cope. The upset of it all left me mentally unstable. Once I had calmed down and accepted this was how it was going to be, I accepted that I'm only one person and I can't take on the establishment."
Jean's husband John decided to apply for Attendance Allowance on Jean's behalf. She was surprised when the application was successful. She now receives £58 a week, considerably less than her original PIP payments.
"There was no assessment in place to show how my brain injury effects me on a daily basis. There needs to be a fairer assessment of people's needs, by people who understand brain injury."
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