Transition

What is transition?

Transition in epilepsy care involves moving a young person with epilepsy from child-focused (paediatric) care to adult neurology or epilepsy services.

Transition should be a planned, gradual process. The aim is to:

• Prepare you and your child
• Hand over responsibility for your child’s care from you to them
• Ensure continuity of epilepsy care and support

Health and social care service managers in children’s and adults’ services should work together to ensure a smooth and gradual transition for your child.

Transition in Northern Ireland

There is no commissioned transition service in Northern Ireland at the moment. Epilepsy Action has worked with The Department of Health to make sure has been added as a key recommendation in the Regional Review of Neurology Services. Speak to your paediatric epilepsy specialist nurse for advice on moving to adult services in Northern Ireland.

What is the difference between child (paediatric) and adult services?

Children’s health services often deal with several issues a child may have, not just epilepsy.  But in adult services, the epilepsy clinic will usually only deal with epilepsy. Anyone with epilepsy will be referred to other specialists for any other medical issues.

Your child will make their own decisions about any health issues in adult care. You can still go to your child’s appointments if they want you to.

Preparing for transition

Transition may not happen until your child is 16 to 18 years old. But your healthcare teams should start planning earlier. Usually, this is around the age of 13 or 14.

The transition process is slightly different for children with complex health and social care needs. This may include children with a learning disability or drug-resistant epilepsy. The process should start early and may last longer.

Transition should be tailored to suit your child’s needs.

Your healthcare professionals should involve you and your child in the transition process.

These conversations should cover things like:

• Information about adult services
• Managing your own epilepsy medicine routine, including organising repeat prescriptions
• Other health issues, such as low mood or poor memory
• Living independently
• Social issues, including driving and sports
• Continuing in education or work
• Contraception and pregnancy
• Sleep problems
• Safety and risk, including sudden unexpected death in epilepsy (SUDEP)
• The risks associated with alcohol and illegal or recreational drugs

Any information about your child’s management plan should be shared with your child in an accessible way. This means that the plan meets their needs and uses language they understand.

Ready Steady Go

Ready Steady Go is a programme to help you gain the knowledge and skills to manage your condition. It’s designed to help people with the transition process and learn what they can about managing their long-term health condition. It is for young people with any long-term condition that are moving into adult care.

If your hospital doesn’t use the Ready Steady Go programme, it’s still possible to use the resources that are part of it for free. Looking at the questionnaires might help you and your child with any questions you have about the transition process.

Top tips

• Talk to your epilepsy doctor or nurse if your child is 16 years old and no one has spoken to you about transition yet
• If your child does not have an epilepsy specialist nurse, check if one is available in your area. Your GP can help you
• Try giving your child some time alone at appointments with their healthcare professional
• Suggest that they make a list of questions they have before their appointments
• Encourage your child to keep a seizure diary. They could use an app or make a note on their phone calendar

More support and information

Epilepsy Action have worked with Young Epilepsy to create 9 booklets designed to help parents get ready for the transition to adult epilepsy care.

You can use this booklet to help you and your child talk about the transition process with your healthcare professional. This will help you and your child make sure you understand the process and make informed decisions about your care.