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 an advisory panel, made up of children and young people with childhood epilepsy and parents/carers. Our panel is facilitated by a Family Engagement Officer and we meet regularly which has happened virtually over the past year due to COVID 19. If you would like more information about the panel or would like to get involved email Rachael Martin, FEO: firstname.lastname@example.org and we will get back to you as soon as possible.
- Family Events: When it is safe to do so, we look forward to holding Family Consultation events in various locations across England to talk about the CASTLE research programme and these will help us develop wider networks with children and young people with childhood epilepsy and their parents/carers.
See below to see what we have been up to:
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:
Summer Social August 2022
It was amazing to finally hold the first face to face meeting since lockdown rules ended. Members of both our North and South panels met on one of the hottest days of the year at the wonderful Coombe Abbey in Coventry in August. We discussed the progress of new trial as well as celebrating the importance and the impact that the advisory panels have had on the process to date. It honestly felt like the families had known each other for years. Such a fantastic network of people who will hopefully provide support for each other for many years to come. The venue was absolutely stunning and after some very ‘posh’ refreshments for lunch the families enjoyed the extensive grounds in the glorious sunshine. Huge thanks for those who braved the heat and travelled to attend. We missed those who couldn’t make it but already looking forward to next time.
Recent PPI work
The PPI team have created a new video to say thank you to the parents and children who are helping make the CASTLE epilepsy programme 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 on the CASTLE research programme
The fabulous children, young people and parents who are part of the CASTLE Advisory Panel (CAP) have helped shape and guide all parts of the CASTLE research programme including:-
- The focus on sleep as an important part of life and outcome for children and young people with epilepsy.
- The logo and name of the Sleep-E trial.
- The way families will engage with the COSI sleep intervention.
- The documents (patient information sheets, questionnaires, consent procedures) which families will read and complete as part of the study.
- Lay summaries to help share the work we have completed so far.
Purple Day 2022
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 #PurpleDay we celebrate with the launch of a short video ‘When epilepsy walks with you’ written, voiced and produced by children and parents from the CASTLE advisory panel. The video hopes to raise awareness of the impact of epilepsy on every aspect of a person and their family’s life, how it is about more than just seizures and medication. Living with epilepsy is challenging, to try and help cope with these challenges children and parents talk about how they try to focus on small positives and stop and appreciate day to day pleasures.
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.
- Professor Lucy Bray: Brayl@edgehill.ac.uk
- Professor Bernie Carter: Carterb@edgehill.ac.uk
- Dr Chris Morris: email@example.com
Rachael Martin is our Family Engagement Officer based at Edge Hill University and facilitates the family consultation work:
“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”.