Case study: Supporting young people with epilepsy, in partnership with Shout

Epilepsy can be one of the most frightening, isolating and misunderstood conditions a child can experience. Approximately one in every 200 children and young people has epilepsy.

For them life can be very different from that of the other children and young people around them. Epilepsy takes its toll on their physical and mental health, as well as impacting their education and social life.

Young Epilepsy is dedicated to standing up for children and young people with epilepsy. We’re here for them. It is our job to listen and work with them so they can fulfil their potential. We coordinate research that improves diagnosis and treatments. We campaign for children’s rights. We support young people in school and college. We deliver cutting edge health services and provide innovative tools, information, and practical help for living everyday life.

As the Head of Support and Inclusion, I lead our Youth Support team, which works directly with children and young people with epilepsy. The team helps young people better understand their condition, deal with challenges, and to see a future full of potential. Our Inclusion team collaborates with schools to provide education professionals with information, training, and resources to better support students with epilepsy in their care.

At Young Epilepsy, we understand that living with epilepsy can be challenging, especially for young people. That's why we offer a range of support services designed to help them thrive and fulfil their potential, including the Shout service. They provide a safe space for young people to share their experiences, ask questions, and learn new strategies to manage their condition.

Our latest #UnderstandMyEpilepsy campaign aims to raise further awareness and enhance understanding of epilepsy among the general public and healthcare professionals. This campaign focuses on the unique challenges faced by young people with epilepsy and advocates for better support systems to help them thrive.

In 2021 we launched our #OnTopOfEpilepsy campaign, to raise awareness of the links between epilepsy and mental health and call for mental health support to be integrated into epilepsy care for young people. As part of this campaign, we surveyed young people to find out more about their experiences of epilepsy and mental wellbeing.

99% of young people said that living with epilepsy had had an impact on their mental wellbeing. 77% said this impact was significant, describing things such as: anxiety/worry, depression, overwhelm, lack of control, fear, stress and feelings of suicide.

We wanted to ensure that young people had somewhere to turn to when such issues arose.

52% also said they didn’t find it easy to talk about how living with epilepsy made them feel, so with Shout being a free and confidential text service, available 24/7, we thought it would be a valuable initiative to invest in.

We started our partnership with Mental Health Innovations and Shout almost two years ago now. We decided that our key word would be PURPLE, as purple is the international colour representing epilepsy. There’s even an annual event on the 26 March called Purple Day to help increase awareness and to dispel common myths and fears.

We worked closely with the team to ensure that the volunteer responders understood epilepsy, how it impacts mental health and any epilepsy-specific signposting they could use – like letting texters know about the information on our website and our support services. This was crucial for us, as we know young people value getting mental health support from someone who understands epilepsy and its challenges.

We’ve worked closely with MHI over this period to develop content that speaks to the issues young people with epilepsy face.

We regularly promote the service on our social channels, have a prominent banner across the homepage of our website and have included details of the Shout support service on our youth facing materials too.

We’ve also developed virtual backgrounds with details of the service on, so when the team are running one-to-one support sessions, online support groups or youth clubs, it’s there for young people to see without it being a big deal.

The number of young people accessing the Shout text service through our keyword is steadily increasing. We’ve used our keyword reports to shape our messaging and schedule posts to go out at specific times, based around the key concerns that have been coming through. These are pretty reflective of the issues highlighted in our survey, with stress/worry and low mood/sadness being the main reasons for texting.

As well as our Youth Support Services, we have a community of over 200 young people that belong to our Youth Voice Network. They help to ensure that young people are at the centre of everything we do at Young Epilepsy. They help shape the direction of the charity and ensure that we understand the experiences of young people and work to support them as well as campaigning for wider change.

We’re working with the network to improve access to mental health support more widely for young people with epilepsy. This includes policy influencing and developing co created information and resources on emotional wellbeing.

Our account manager Amy has been amazing. She’s linked us up with the marketing team to update our assets and messaging, inline with the most common challenges our texters are facing, all in a youth-friendly way.

I’ve also attended some of the webinars that have been put on for partners. It’s been great to hear from other organisations who are using the service, and really interesting to hear about MHI’s latest insights and initiatives.

Go for it! The support you’ll get from the team is fantastic, and the help their volunteers provide to young people really can make all the difference