A focus on youth with epilepsy

  • Youths engaged in camp activities
  • Youths engaged in camp activities
  • Youths engaged in camp activities

Youth engaged in camp activities

Bringing young people together who have a shared life experience of epilepsy.

Epilepsy Action Australia recently delivered three Youth Conferences in Sydney, Newcastle, and Wagga Wagga, NSW, for 16-24 year olds living with epilepsy. They were able to share their experiences, build connections and create new friendships while learning about their own epilepsy and new ways to view it. These conferences provided a safe platform for the people attending to express their thoughts and gain new ways to manage their own mental health and self-talk.

There were full agendas with guest speakers, workshops, and fun activities to support the group to explore trust, develop knowledge and skills and look beyond their epilepsy over the two-day events. The workshops covered epilepsy management, mental health and wellness, mindfulness, strategies for building independence and personal storytelling. Plus a range of engaging activities, from art therapy, circus activities and African drumming.

Many of those attending had not met others living with epilepsy before. Each person chose to share a part of their own story with the group, making themselves vulnerable, moving others to view their life a little differently, and positively. Social connections were made as they discussed similar challenges and characteristics of their epilepsy while appreciating everyone had their own set of issues and experiences.

Everyone walked away with new strengths and confidence in telling their own story. Owning the narrative of their story is empowering and by the end of the weekend contributed to improving their confidence and self-esteem.

Alex: "It was a really positive experience. I got to make some wonderful friends and meet some new people who could relate with me on a lot of things, and I found it really useful. I would have stayed a week if I could!"

Indi: "It was a chance to create new connections, build a support network, have relatable conversations. I’d definitely recommend going if you are thinking about it – it is a really safe space."

Erin: “I am more confident explaining my epilepsy to others…. and to speak out in youth groups about epilepsy related topics and help supporting others.”

“Seeing other people grow in confidence after hearing mine and others’ stories is a big achievement as it’s showing that we are all doing something right.”

Transition to adult healthcare services

After listening to the experiences of young people, and recognising a need in the epilepsy sector, Epilepsy Action Australia has developed resources to help youth with epilepsy to transition to adult healthcare services.  There are currently limited epilepsy specific transition tools or resources available, so this is an important step forward in supporting young people moving into adult services. Epilepsy can be a complex condition, there are many forms and there can be many associated comorbidities and social issues, so a supported transition is paramount. 

Moving from paediatric to adult health services is a gradual process, and generally involves a team of people. Without good planning, a negative transitional experience can lead to poor health and social outcomes due to barriers, fragmented care and lack of access or engagement. Young people find themselves in an adult environment where they need to take charge with discussing their health and take control over their health-related decisions, so being prepared is essential.

It is hoped that these resources will better prepare the young person and facilitate a positive and more collaborative and smooth transition. They include:

  • A downloadable Transition Checklist
  • An online Interactive Quiz
  • A video resource “It’s Hard for Parents too!” from psychologists from Macquarie University
  • A video of young people’s experiences and tips
  • To view these resources, click here

These events and resources were generously funded by NSW Government Department of Communities and Justice, Australian Government – NSW Government Disaster Funding Arrangements 2018 and Newcastle Permanent.

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