I began having absence seizures when I was 16. I didn’t know that’s what they were until I started driving. When I have a seizure I become very disorientated, I stare and they make me drool. I get a terrible headache afterwards. I suffer from depression as a result of my epilepsy and this also means I have problems with my memory.
I feel lucky that I am able to work full time because I have a supportive workplace. But there are lots of other things I find difficult to do. I worry about my safety.
Since 2012 I have been in receipt of Disability Living Allowance (DLA). It was deemed that my epilepsy affected my daily living. I received £174 a month. I don’t drive so this money helped with things like paying for travel.
In November 2017 I received a letter from the Department for Work and Pensions (DWP) telling me I would no longer be able to claim DLA and instead would have to apply for the new benefit Personal Independence Payments. Despite having four to five seizures a month, without warning, I received 0 points. I lost £174 a month, just like that.
I challenged the outcome and following another assessment was awarded four points. This still wasn’t enough to qualify for financial support. Without this money I have had to take more risks getting to and from work and it has reduced my ability to go out with friends, making me feel more isolated. I fear that something will happen while I am out.
I have decided to appeal the decision and continue fighting to get PIP. I contacted my MP to ask him to help me and to tell him that the PIP assessment is too focused on physical disabilities. Unfortunately, in the past he has voted to take money away from disabled people so I wasn’t holding out much hope. He did respond and wrote a letter to Esther McVey, the minister for work and pensions. He asked her what the government were doing for people with epilepsy who were trying to claim PIP. I wasn’t happy with the reply which seemed just like it had been copied and pasted.
I am waiting for a court date. If I lose this fight, at least I tried. It’s a case of principle for me now.