Family Consultation Work / PPI (Patient Public Involvement)

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.

      1. Advisory panel: We have advisory panels, one based in the north of England and one based in the south of England made up of children and young people with childhood epilepsy and parents/carers.  Each panel is facilitated by a Family Engagement Officer. If you would like more information about these panels or would like to get involved then click here, or email Rachael Martin, FEO: martinra@edgehill.ac.uk and we will get back to you as soon as possible.
      2. Family Events: We hold 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 childhood 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 childhood epilepsy and their parents.

Check out our CASTLE Advisory Panel handbooks, developed with the children and parents from our Advisory Panel, and find out a bit more about us and explain about how we work together:

Recent PPI work

Check out our video about the CASTLE trial made in collaboration with young people with epilepsy and their families.

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.

The story so far and the impact of PPI

Our fabulous families have helped shape and guide some of the research documentation throughout the study through face to face sessions and via technology conferencing tools.

Purple Day 2020

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. 

This year took on a very different theme due to the Coronavirus outbreak but our fabulous staff still wore purple whilst socially distancing and working from home…

Further information

Who is leading the family consultation work?

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.

Rachael Martin is our Family Engagement Officer 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 childhood epilepsy fulfil their potential and have the best quality of life.”

Debbie has been lending her experiences as a mother of a daughter who has childhood epilepsy for the CASTLE study and has facilitated the work in the South of England:

“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”.

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.