When a child or young person is diagnosed with epilepsy, families often need support that goes beyond clinic appointments. Hannah Tompkins, Clinical Nurse Specialist for Epilepsy at Chelsea and Westminster Hospital, explains why she recommends Young Epilepsy to families looking for trusted epilepsy support for children and young people.
Can I still go out with my friends?
Can I go to university?
Will epilepsy stop me doing the things I enjoy?
As a Paediatric Neurology Clinical Nurse Specialist, supporting children, young people and families to live well with epilepsy is a key part of my role. But I've learned that some of the most important questions don't always come up in clinic appointments.
Support for children and young people with epilepsy beyond clinic appointments
I've worked in epilepsy for several years and have referred many young people and families to Young Epilepsy. What makes the organisation stand out is its focus on the realities of growing up with epilepsy.
As healthcare professionals, we can provide clinical advice, treatment plans and safety information. But life with epilepsy happens outside the hospital.
Young people are navigating school, friendships, independence, exams, relationships and plans for the future, all while managing a health condition that can feel overwhelming and unpredictable.
Young Epilepsy helps bridge the gap between what happens in appointments and what happens in everyday life. It gives young people a space to explore the questions and challenges that may not always come up in a clinical setting.
Why childhood epilepsy support needs to be different
One reason I frequently recommend Young Epilepsy is its understanding of the unique challenges children and young people face.
Childhood epilepsy is different from adult epilepsy. Young people are still developing, learning who they are and becoming more independent. An epilepsy diagnosis can arrive at a time when they are already dealing with huge changes in their lives.
For teenagers especially, it can feel as though freedoms are being taken away just as they are beginning to gain them.
Many young people tell me they want to go out with friends, travel, start university and live independently. At the same time, parents are understandably worried about safety and often find themselves asking, "What if?"
Helping families navigate that tension is incredibly important, and it's an area where Young Epilepsy provides valuable support.
Helping young people with epilepsy feel less alone
One of the most common challenges I see is the feeling of being the only person with epilepsy.
Many young people don't know anyone else their age who has the condition. Even if they don't describe themselves as lonely, there can still be a sense of being different or isolated.
Connecting with other young people who understand what they're going through can make a huge difference.
I've seen first-hand how Young Epilepsy helps young people realise they are not alone and that epilepsy doesn't have to define their future.
How Young Epilepsy support helped one young person
A young person I recently referred had been diagnosed with epilepsy around two and a half years earlier. Controlling her seizures had been difficult and the experience had been extremely challenging for both her and her family.
When I met her, she was feeling stressed, overwhelmed and under pressure at school. She was trying to keep up academically while coping with an epilepsy diagnosis and ongoing seizures.
After discussing the support available, she agreed to be referred to Young Epilepsy.
When I saw her again a year later, the difference was remarkable. She had taken part in one-to-one support sessions and was keen to attend face-to-face activities. She had also moved to a school that better suited her needs and was feeling much more positive about the future.
Most importantly, she told me she no longer felt like the only person with epilepsy.
She said she had come to understand that epilepsy was something she would have to live with, but that it did not have to ruin her life. She felt less alone and much more comfortable in herself.
While many factors contributed to this progress, I have no doubt that the support she received played an important role in rebuilding her confidence and helping her look ahead.
How Young Epilepsy supports families beyond hospital appointments
There is only so much healthcare professionals can do on our own.
We can provide excellent clinical care, but children and young people need an entire network of support around them. Families, schools, charities and community organisations all have an important role to play.
Young Epilepsy reaches young people in ways that healthcare services often cannot. It creates opportunities for conversations that feel natural and relevant to their lives, rather than focused solely on their condition.
That's why I see it as a vital part of the support available to children and young people with epilepsy.
Why health professionals recommend Young Epilepsy
I would recommend Young Epilepsy to other health professionals because it provides personalised support and understands the unique needs of children and young people with epilepsy.
I've seen the difference it can make, particularly for young people facing challenges with confidence, isolation, independence or major life transitions.
For families, having access to Young Epilepsy means immediate access to trusted information, advice and support from people who understand the realities of growing up with epilepsy.
