Stepping Across: Helping a Young Person Move from Children’s to Adult Epilepsy Services

The move from children’s to adult epilepsy services is often described as a transition, but that word can make it sound tidier than it is. In practice, it is a handover year: a period in which appointments, relationships and responsibilities gradually change. For a young person, it can feel like being asked to grow up quickly. For a parent, it can feel like loosening a grip that has kept everything safe.

Most UK paediatric epilepsy services begin planning this move between the ages of 16 and 18, though timing varies. Some young people will have a dedicated transition clinic; others will move through a series of letters and appointments. Whatever the local arrangement, a calm and organised approach helps.

Start earlier than the first adult appointment

It is worth asking about transition at least a year before the expected move. Ask who is leading the process, whether there is a young person’s clinic, and which adult service you will move to. If the young person has additional needs, such as a learning disability or autism, ask how those needs will be communicated and supported in adult services.

A named contact makes a difference. That might be a paediatric epilepsy specialist nurse, a transition coordinator or a consultant. Ask for their details and for a clear idea of what happens next.

What to ask before the handover

Before the final paediatric appointment, the young person and their family should have a chance to ask practical questions. These might include:

• Who will be my named consultant and epilepsy specialist nurse in adult care?
• How will my records be transferred, and can I have a summary?
• What is my current diagnosis and seizure type, explained in plain language?
• Which medicines am I taking, at what doses, and why?
• What is my emergency plan if a seizure lasts too long or I have a cluster?
• Who do I contact between appointments, and how?
• How do repeat prescriptions work in adult care?
• What should my GP know, and will shared care arrangements change?
• How often will appointments happen, and are telephone or video reviews available?

It helps to write these down before the appointment. A young person may prefer to ask some questions alone, or to have a parent present for part of the conversation and not the rest. Both can be arranged.

Records and medication summaries

A clear record is one of the most useful things a family can carry into adult care. Ask for copies of clinic letters, the latest seizure diary, relevant EEG or MRI reports, and a medication summary that includes doses, timing and any known side effects. Keep a paper folder and a digital copy if possible.

Medication summaries should be precise. “Two tablets twice a day” is less helpful than the drug name, strength and total daily dose. If the young person uses a rescue medicine, the plan should say when and how to use it, and when to call 999. If allergies or sensitivities exist, these should be recorded too.

In adult services, the young person will increasingly be responsible for repeat prescriptions and appointments. A simple shared calendar, a reminder on a phone, or a named family organiser can help without taking over.

College, university and work

Further education and training bring new routines, and those routines can affect sleep, alcohol, meal times and medication. It is worth planning before term starts. Colleges and universities usually have disability or wellbeing services that can discuss adjustments, exam arrangements, medication storage and accommodation needs. The young person can decide what to disclose, but having the conversation early is often easier than waiting for a crisis.

For university, ask about the process for registering a disability or long-term health condition, and whether support is available through student finance or the institution itself. If the young person is moving away from home, check how prescriptions will be handled and which pharmacy they will use. A little preparation around freshers’ week, late nights and missed doses can prevent avoidable problems.

Building self-management skills

Self-management is not a test that a young person passes or fails. It is a set of skills built over time. These include knowing the names of medicines, understanding what to do about a missed dose, recognising warning signs, keeping a seizure record, booking appointments and asking for help when something feels wrong.

Parents can support this by handing over one task at a time. Perhaps the young person takes responsibility for ordering repeat prescriptions for a few months, then for booking their own GP appointment, then for leading part of the epilepsy review. The aim is not to remove support but to make sure the young person knows how to find it.

How parents can step back without stepping away

At 16, young people in the UK are generally presumed to have capacity to make their own decisions about their care, unless there are specific reasons to think otherwise. That can be a jolt for parents who have managed appointments, medication and school liaison for years. It can also be an opportunity.

Ask the young person what kind of support they want. Some want a parent in the room; some want a parent in the waiting area. Some want help preparing questions; some want to try alone first. Agree an emergency plan together, so that stepping back does not mean abandoning the practical safety net. If confidentiality limits what clinicians can share with parents, ask what can be discussed and how the young person can authorise sharing if they wish.

A practical handover checklist

• Ask about the transition process at least a year ahead.
• Record the names of the adult consultant and epilepsy nurse.
• Request a written diagnosis, medication and emergency plan.
• Keep copies of clinic letters and recent investigation reports.
• Check how repeat prescriptions and GP shared care will work.
• Contact college or university support services before term begins.
• Agree which self-management tasks the young person will lead.
• Discuss what support the young person wants from parents.
• Confirm who to contact between appointments.

The handover year will not always feel smooth. Appointments may be delayed, and adult services may feel less familiar. But a planned move, with clear records and honest conversations about responsibility, gives a young person the best chance to enter adult care as an informed participant rather than a passenger. EpiNet UK will continue to follow the coordination issues that matter to families across the UK.