Epilepsy can be one of the most frightening and isolating conditions a young person can experience. The loss of any sense of safety, living in an unpredictable world, not knowing when their next seizure will happen. All this takes its toll on a child’s or young person’s mental and physical health, as well as impacting their education and social life.
That's why our Support and inclusion team works with young people and their families to help them through their diagnosis and beyond, to better understand their rights, as well as helping them get access to the right services and support.
Why are our Support and inclusion services needed?
Thousands of children and young people with epilepsy are frightened, lonely and their condition is misunderstood. Children and young people with epilepsy urgently need support because their epilepsy means they are missing out on education, work and social life. Without support, this can impact them now and for the rest of their lives.
Epilepsy doesn’t just affect a young person when they’re having a seizure, it can affect them every day, in all areas of life. Children and young people with epilepsy may struggle at school and they are four times more likely than their peers to have a mental health problem. Children and young people with epilepsy may struggle with anxiety, lack of confidence and low self-esteem.
Epilepsy is often stigmatised, and children and young people may be discriminated against, even bullied, because of their epilepsy.
Often adults responsible for their care don’t understand the condition and can be overprotective or misinformed about how epilepsy affects young people, their behaviour and learning.
We know that it's vital to educate others about childhood epilepsy. When schools, colleges and universities are clued up on epilepsy, they can better support their pupils and students with the condition.
How can we help?
Our Support and inclusion team works with children and young people with epilepsy aged up to 25 years old who have a range of abilities and needs. Our team is here to help, and with their knowledge and experience can respond to each child’s or young person’s individual needs.
Our Youth support coordinators provide one-to-one guidance, whole-family support and social get-togethers for children and young people with epilepsy, and their families. The support we offer includes:
- Giving a young person a safe space to speak.
- Informing young people of their rights.
- Creating a community for young people, to meet others with the condition and share their stories.
- Empowering young people to improve their outlook on living with epilepsy, building their resilience, confidence and independence.
- Helping children and young people manage their wellbeing and mental health, signposting them to the help they need
If you think you or your child needs support from our Youth support coordinators, for one to one or group support, please contact us using this form.
Our Inclusion programme helps parents, caregivers and professionals working with young people to better understand, through a young person's eyes, what it's like to live with epilepsy, to ensure children and young people are not left out. Our Inclusion programme includes:
- Improving adults’ understanding of childhood epilepsy, so its not a barrier to children and young people fulfilling their ambitions, like everyone else.
- Providing information, resources and training for education professionals to ensure children and young people with epilepsy are fully included and can thrive at school, college and university.
- Helping those living with epilepsy to better understand their rights to equality and opportunity, ensuring they can fully access education and health services.
- Providing information and training for employers so young people with epilepsy are not discriminated against in the workplace.
If you are a professional or community leader working with children and young people with epilepsy, take a look at the training and resources we can offer to help you by clicking here.
Not every child with epilepsy needs our direct support. We have an online resource that’s available to every young person aged 13 and over with epilepsy.
The Channel is a user-led online resource for young people with epilepsy. Filled with relevant and appropriate content The Channel helps young people to navigate the world around them, helps them better live with the condition and enjoy life to the full.
Our Young Reps are young people living with epilepsy, they help co-create age-appropriate content in a language and style young people can relate to but in a well informed and trusted way so young people can get the facts and life hacks they need, straight up.