Role within CASTLE:
Janet has been a lay co-applicant since 2015.
What’s the most interesting part of the role?
Learning about what professionals are doing in the field and thinking about how to involve families and patients in the research. I am a parent of a teenager with epilepsy and I have epilepsy myself, so the CASTLE project feels very close to my heart. In my working life I have been a youth and community arts development worker. I have trained and supervised people working with young people and I am really interested in children and adolescent development. Much of my work has been about finding creative ways to help young people reach their potential. I am also an artist and spend a few days a week on my painting practice. in my spare time (what spare time?) I love walking and running and cooking in my kitchen.
Top tips for those thinking of getting involved in the advisory panels:
No to be intimidated by jargon or acronyms. That your experience of living with epilepsy is really crucial.
Any relevant voluntary or professional experience you’d like to share (including other PPI work):
I have a background in Youth and Community Work and an MA in Applied Anthropology and I have a special interest in participant involvement and in participatory research – especially in creative evaluation and research methods. I have epilepsy and I have a teenager with epilepsy.
The best thing about having a child with epilepsy?
I think it has made him a more compassionate and empathetic young person. He has been through such a lot because of having epilepsy and I think it has made him more sure of who he is and more confident about standing up for what he believes – even if that goes against the flow. Like many challenges in life dealing with epilepsy has in its own way been enriching to all of our lives.