As the Family Engagement Officer for the South it was my utter pleasure to host a family day for the CASTLE advisory panel members in November. 32 children and their adults joined us for a fantastic day of panel work, rest and play at Kings College London and Somerset House!
CASTLE advisory panel members, their families and CASTLE study researchers gave up a Saturday to come together to celebrate the work we have already done and to continue the important work that the CASTLE advisory panel do.
Our time working was mostly spent playing! CASTLE advisory panel members have very busy lives so most of the time we work remotely over email, the phone and via WhatsApp which is a very efficient way of doing things. Some of us have been working together for many months and so it was lovely to finally meet each other face-to-face! Getting to know each other and sharing experiences of living with epilepsy is an important and rewarding part of the CASTLE panel’s work.
After lots of chatting, Professor Lucy Bray got everyone down to some core business; this time children, young people and their adults worked on the qualitative element of the CASTLE research study ensuring that the qualitative methods and questions are meaningful and appropriate to research participants in the CASTLE study. With such input researchers have a much better chance of optimising the research process in the best interests of participants and researchers.
We held the premier of the video which explains to parents, children and young people what the CASTLE study is all about. Panel members were crucial to the development of this video from its inception to the final cut.
After some hard graft we put some of the CASTLE Professors in the HOT SEAT to answer serious and silly questions from panel members. Many of these questions revealed the huge understanding that parents have of their children’s epilepsy, genetics and the brain. It also revealed that our Professors have a great sense of humour and are game for just about anything!
Finally, after lots of thinking and collaborating we were rewarded with ice skating at Somerset House, right next door to the Kings College building we had been in! We had a fantastic time working and playing together but most importantly we have helped influence the research process to ensure that it works better for children and young people with epilepsy and their families.