Epilepsy research with patients in mind
To mark Purple Day on 26 March, Dr Sam Lyle, Family Engagement Officer for the Changing Agendas on Sleep, Treatment and Learning in Childhood Epilepsy (CASTLE) Programme at King’s College London, blogs about conducting research into treating epilepsy in children with family engagement in mind.
The CASTLE study is focused on rolandic epilepsy, which is the most common type of childhood epilepsy and affects around one in six children with the condition in the UK. Children with rolandic epilepsy find that their learning, sleep, behaviour, self-esteem and mood are often affected, and the condition can cause stress in the family.
Treating epilepsy with drugs to reduce seizures has been the traditional goal of medical treatment. However, simply reducing seizures doesn’t necessarily make much difference to the way children and parents feel. What we do know is that active participation by patients and their carers in health research is associated with better outcomes - which is of course better for all concerned. As a result, we are working in partnership with children and young people with the condition, as well as parents and carers, through our advisory panels. The panels help the researchers by using their experiences to directly inform how the research should be designed, carried out and shared with others.
[Image: CASTLE team members Sam, Allie, Janet and Sophie]
We have two panels, in the north and south of England. My colleague Rachael Martin and I are responsible for facilitating the panels. Rachael’s role involves meeting with epilepsy support groups and epilepsy nurses and leads on the north of England panel, based near Liverpool.
Before writing this blog I asked Rachael her thoughts on being part of the CASTLE study. She said:
I am really excited to be part of this project and thoroughly enjoy working with families to help children and young people with rolandic epilepsy fulfil their potential and have the best quality of life.
Rachael is extremely keen to hear from anyone who lives in the north and would like to get involved in a panel. Please contact contact her at email@example.com
My advice to anyone interested in getting involved in research is that although it may seem daunting initially, you are the experts of your experience, and my job is to make sure that you get the best opportunity to put those experiences to good use in our research.
But what impact are we having? I spoked to Debbie, whose daughter has rolandic epilepsy and is involved in the CASTLE advisory panel she said:
Working with the researchers can be a bit frightening at first as they sometimes talked in ways that I didn’t understand, however, being on the panel is not only helpful but rewarding. You may mention something that helps another family – that’s a great feeling. Then someone else says something and you think, I never knew that! So while you are helping others you are always learning at the same time.
If you or your child would like to find out more about being part of our Advisory Panel you can find out more on our Patient Public Involvement page. There are also ways in which you can take part in the research by visiting the CASTLE website. Panel members are compensated for their time and travel expense, we look forward to hearing from you soon!
The CASTLE programme of research is led by Professor Deb Pal, Professor of Children’s Epilepsy at King’s College London, and Professor Paul Gringras, Professor of Paediatric Sleep and Neurodisability at Evelina London Children’s Hospital.
The King’s Health Partners Neuroscience Institute has an ambitious vision to use our collective clinical, research, and educational expertise to deliver world-class patient care and research.