The PPI team have created a new video to say thank you for the parents and children who are helping make the CASTLE epilepsy study as family focussed as it can be – watch this short video to see what our advisory panels have been up to so far:
PURPLE DAY 2018
The PPI team are really pleased to support Purple Day, an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th, people all over the world are invited to wear purple to show their support for epilepsy awareness. This day is an excellent opportunity to raise awareness about the important work the PPI team are undertaking to support epilepsy research as part of the CASTLE Study. Click here to view blog
As a team we are really committed to making sure that our research is relevant for children and young people with rolandic epilepsy and their parents/carers. Our family consultation work aims to make sure children and young people with rolandic epilepsy and parents/carers guide the way our research is designed, carried out and shared with others.
Our family consultation work aims to make sure children and young people with rolandic epilepsy and parents/carers guide the way our research is designed, carried out and shared with others.
Who are we & what are we doing?
We have two main ways we are carrying out this consultation work.
- Advisory panel: We have advisory panels made up of children and young people with rolandic epilepsy and parents/carers. We will have two panels, one based in the north of England and one based in the south of England. Rachael and Sam are the Family Engagement Officers for the CASTLE study and their job is to facilitate the panels. Rachael leads this work for the North of England and is based near Liverpool. Sam leads this work for the South of England and is based in London. If you would like more information about these panels or would like to get involved then click here, or email Rachael (for the North) or Sam (for the South) and we will get back to you as soon as possible.
- Family Events: We will also be holding Family Consultation events in various locations across England to talk about the CASTLE research programme and this will help us develop wider networks with children and young people with rolandic epilepsy and their parents/carers to help advise the research programme.
There are lots of ways you can let us know your thoughts and opinions. We want to hear from children and young people with rolandic epilepsy and their parents.
Who is leading the family consultation work?
Rachael Martin is based at Edge Hill University and runs the family consultation work in the North of England.
“I am really excited to be part of this project and I am looking forward to working with families to help children and young people with rolandic epilepsy fulfil their potential and have the best quality of life.”
Sam is based at Kings College London and runs the family consultation work in the South of England.
“Getting involved in research may seem daunting at first, but you are the experts of your experience, my job is to make sure that you get the best opportunity to put those experiences to good use in our research. I really look forward to working with you on the CASTLE study and having some fun along the way!”.
Debbie has been lending her experiences as a mother of a daughter who has rolandic epilepsy for the CASTLE study:
“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”.
The family consultation work is led by Professor Lucy Bray, Professor Bernie Carter, Dr Chris Morris and our parent co-applicants Janet Currier and Deborah Roberts.
Take part in the this study
To register your interest in this study, please complete our short online form. A member of our team will be in touch with you very shortly.