Moving from children’s to adult epilepsy care is often talked about like it’s just the next step. But for many young people, it can feel confusing, emotional and overwhelming. New doctors. New systems. More responsibility. Less support. Here’s what transition can really feel like, and why it needs to be better.
People often talk about “transition” like it is just a handover: one service ending and another beginning. But for young people with epilepsy, it can feel much bigger than that.
In Young Epilepsy’s transition focus groups, young people described having to repeat their story to strangers, struggling to get answers, and feeling scared by how much responsibility suddenly landed on them. Parents and carers described feeling shut out, unsupported and left to fight on their own.
Research shows that these experiences are common. Studies in the UK have found that young people can lose the joined-up support they had in children’s services. Their mental health can also be affected when support reduces. One review found that only 10 out of 218 NHS providers had epilepsy-specific transition resources available online.
It can feel like starting all over again
For some young people, moving into adult care can feel like starting again with people who do not yet know them, their history or what they need.
“I had to explain my whole background to these new people that I didn't know and explaining the background is kind quite emotional”
“Whenever I've gone to different appointments it's just been no, no, no, no, no. I don't look forward to any of them”
“It's hard to contact someone unless you're almost dying”
Transition can feel less like being supported into adulthood and more like losing the people who knew you best. UK research has found that continuity of care can be disrupted during the move from children’s to adult services.
The responsibility can arrive all at once
Another part of transition that can feel difficult is the sudden shift in responsibility. Young people may be expected to manage appointments, medication, communication and decisions more independently, sometimes before they feel ready.
“They said I'm gonna be independent with it all and throwing all of that responsibility on me scares me a bit”
“I'm all confused about it … I don't have much of an insight on it right now”
“I'm making sure she's [Mum] is helping me through it … I don't think I'll ever be able to be fully independent”
Independence matters. But expecting young people to suddenly manage everything on their own is not the same as helping them build confidence over time. NICE guidance describes transition as a planned process over time, rather than a single point of transfer. It should help young people build skills and confidence step by step.
Parents and carers often feel the support disappears too
Transition does not only affect young people. Parents and carers can also find the change difficult, especially when they have spent years helping to manage appointments, medication and day-to-day care.
“I felt like I was a burden or I was annoying epilepsy nurses”
“All the information is going direct to my son … to his email address and his phones … and he doesn't even look at his phone or read his emails”
“We have the paediatric services there one day and then the day she turned 18, they were pretty much gone”
“It affect your mental health massively, no matter how strong you are, no matter how prepared you are - it is incredibly difficult to fight by yourself”
Research shows that parents and carers can feel anxious and less supported during transition. Some may find it hard to step back, especially when they have spent years managing care and keeping their child safe. Support for mental health can also reduce during this time, which can affect the whole family.
This matters because epilepsy can affect the whole family, not just the young person with the diagnosis. When support changes suddenly, families may need clearer information, practical guidance and reassurance about what happens next.
Why this matters
When young people say they feel confused, unsupported or alone during transition, these are not isolated experiences. Research suggests there are recurring gaps in how young people with epilepsy are supported as they move from children’s to adult services.
Poor continuity of care is a common concern. Young people’s mental health can also be affected when support reduces. At the same time, epilepsy-specific transition information can be hard to find. One review found that only 10 out of 218 NHS providers had epilepsy-specific transition resources available online.
Resources also need to cover the things that young people and families actually worry about, including safety, independence, peer support and how to manage epilepsy day to day. Transition should not just be about moving between services. It should help young people feel more informed, confident and supported.
What would make transition feel better?
Young people and families have described what would make the process feel better: clearer communication, joined-up services, practical information and support that recognises both independence and vulnerability.
“Oh my gosh, they've taken over everything and taken away all that anxiety and uncertainty for us as parents”
“It's a positive thing that the independent charities are doing themselves … I think it's the independent sector that will drive transitioning”
Research and lived experience point to practical changes that could help. These include joint transition clinics, transition specialist nurses, peer support, and resources created with young people, parents and carers.
Young people should not have to “figure it out” alone. Transition should feel supported, joined-up and human. With the right information, the right people and the right support around them, young people can feel more prepared for adult care.
