Family Consultation Work / PPI (Patient Public Involvement)

Helping parents make the most out of clinic visits for their child’s epilepsy.

On Purple Day this year, we are delighted to share some resources developed by the CASTLE programme advisory panel to support parents when they take their child with epilepsy to a clinic appointment. The ‘this is your clinic visit’ and ‘top tips’ sheets aim to help parents be prepared and empowered to get the most out of a clinic visit for their child. Parents on the advisory panel highlighted how overwhelming clinic appointments can be “after your child is diagnosed it is like a whirlwind” and “you do not always remember the things to ask or what was said”. These sheets are free to download from these links or click on the images to the right. We are also working with charities to share them widely.

The CASTLE research programme advisory panel was set up in 2018 to ensure that the lived experience and knowledge of children with epilepsy and their families guided the research programme. The panel are also committed to raising awareness of childhood epilepsy. We have enjoyed developing these resources and hope that families find them useful.

The clinic resources support the aims of the CASTLE programme, which focus on the wider aspects of childhood epilepsy, considering this condition beyond the medical management of seizures. 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.

“Having the space and time to work with the panel members over so many years has really helped us focus on developing things of importance to the parents”.

If you want to find out any further details about the CASTLE research programme, please check out the rest of the CASTLE website. or follow us on Twitter: @CASTLE_Epilepsy.

Summer Social August 2023

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.

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

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.

Watch the video here: