Working with families to raise awareness of childhood epilepsy
Prof Lucy Bray from Edge Hill University who leads the Patient and Public Involvement (PPI) element of the CASTLE programme reflects on the experience of working with the advisory panel.
The CASTLE (Changing Agendas for Sleep, Treatment and Learning in Epilepsy) research programme led by Prof Deb Pal, King’s College London, and Prof Paul Gringas, Evelina London, is focussed on the wider aspects of childhood epilepsy (Rolandic Epilepsy or BECTS (Benign childhood epilepsy with centrotemporal spikes)) considering this condition beyond the medical management of seizures.
The research programme aligns with the growing recognition that the management of Rolandic Epilepsy or BECTS requires consideration of all aspects of a child’s life. The work of the CASTLE team also acknowledges the importance of research being shaped by people with lived experience of epilepsy and the team have an ongoing commitment to try and make sure this happens.
This short blog reflects on the ongoing work and impact created by families from the research programme advisory panel. The panel was established in 2018 to ensure that the lived experience and knowledge of children with epilepsy and their families guided the research programme. Since then, the panel, led by myself and Rachael Martin, has grown in size and ambition into a community with the shared goal of raising awareness of childhood epilepsy.
During one of our advisory panel meeting, the conversation wandered to how members wanted to ‘do more’ to raise awareness of the day to day reality of living with epilepsy. So, over the past six months the panel have worked via Zoom, WhatsApp and email to create, write and voice the short video ‘When epilepsy walks with you’. Whilst the video highlights the challenges which can be faced when living with epilepsy, the panel were also keen to consider how the condition helped them focus on and appreciate ‘the little things’ in life.
One panel member said that when they watched the final video they were “Very proud of how we all face the challenges of this condition and our resilience to keep going and it also reminded me of the riches and gifts epilepsy it has brought to my life”
The video launched on Purple Day, 26 March 2022 and has been shared via Twitter, YouTube and the CASTLE website. One young person from the panel challenged the team to make sure it was shared on TikTok - and so we have and we are still trying to “go viral”!
A panel member commented that “I love it and hope we can share it widely to get the message out to as many people as possible. I think it can really increase understanding, empathy, acceptance and support.”
Being able to work with the young people and adults on the panel is a massive privilege and I have learnt so much from working with them. Over time the members have become a community where highs and lows are shared, and we work on things which matter to them. Having the space and time to work with the panel members over so many years has helped to step beyond the more common consultation level of PPI towards a more collaborative way of working.
The advisory panel would love you to watch their video and share it widely and watch this space for future work.