Having recently experienced an assessment for Personal Independence Payments (PIP) which was both upsetting an insulting, I am calling for a change to the assessment process and questions for people with epilepsy to make the questions applicable and appropriate for the condition. My experience is that the questions and criteria did not cover neurological condition which are extremely variable and unpredictable. 

The lack of knowledge and understanding of the assessors is astounding. 

I opened up a discussion in several social media platform forums for people with epilepsy and the response of was overwhelming as the majority of people experienced the same thing, had been refused and had to go through the lengthy, difficult and stressful appeals process.

I am diagnosed with epilepsy and seizures which are not controlled by medication. I went through a telephone assessment which lasted 2.5 hours. I stated that I have seizures whilst eating, which have caused burns from hot food, choking, biting my tongue and breaking plates and throwing knives and forks. Following this I received a phone call from. The DWP telling me that people with epilepsy do not have seizures whilst eating. Again, in forum discussions, everyone stated that they have had seizures or witnessed family members having seizures at meal times.

At times the injuries incurred by what you are doing at the time can have more of an impact than the seizures themselves. 

I believe that we are not being heard. Not believed. And discriminated against by persons with no medical knowledge. We are being judged by ill informed and uneducated people. This needs to stop and by coming together we can make a positive change.