Role within CASTLE:
Deborah is a lay co-investigator & epilepsy services user.
What’s the most interesting part of the role?
Finding out new things about epilepsy and meeting new people and sharing experiences.
Top tips for those thinking of getting involved in the advisory panels:
Do not be put off by the academics.
Any relevant voluntary or professional experience you’d like to share (including other PPI work):
Realising you know more about living with epilepsy. A doctor prescribes medicines but doesn’t necessarily know what it’s like to live with epilepsy unless they have first hand experience of the condition.
The best thing about having a child with epilepsy?
There is not really a best thing about your child having epilepsy as in an ideal world your child would be health perfect. However, it can help them to have an understanding that not everyone is the same and that some people have different medical conditions. It can also help to bring a family closer together.