It was such a joy to bring together some of the CASTLE advisory panel members from the North of England at our family day held in March. Advisory panel members, their families and some of the CASTLE study team gave up a Saturday to come together at Knowsley Safari Park to evaluate the work we have done over the last six months and to focus on some new work for the CASTLE research programme.
With the very busy lives our CASTLE advisory panel members have, a lot of the work is done remotely over email, phone or text so it is always lovely to get together for face to face meetings. Getting to know each other and sharing experiences of living with epilepsy is an important part of learning and working together.
After meeting over a fabulous lunch, it was down to business. The children, young people and their parents/carers worked on helping to write the lay summary from the first part of the CASTLE research programme – the CHOICE study. We discussed ideas around how research findings are usually shared and how it is important to make sure that documents for families are relevant, informative and appropriate in age, language and presentation. We all finished the day having learnt lots through sharing our valuable ideas and experiences.
Author: Rachael Martin, Family Engagement Officer