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Intended for parents/carers of, or patients who have been prescribed Epistatus.

Intended for parents/carers of, or patients who have been prescribed Epistatus.

Transition from Paediatric to Adult Care

About Epistatus®

What is transition?

The process of planning, moving and receiving support from children to adults’ services is called transition. It is a gradual process, to give young people with epilepsy time to get ready to move to adult care and to help make the plans with them to do so. The process might include: 

  • Discussing what their healthcare needs as an adult might be

 

  • Deciding the services best for them and where they want to receive their care

Moving away from a team of doctors and other healthcare professionals that the young person with epilepsy knows can seem daunting, but getting involved in the process means they can feel more confident and happier with the transition.

why do young people with epilepsy need to transition?

  • As they get older, they might find that there are some things they want to talk about, or aspects of care they want, which children’s services cannot properly provide
 
  • Through transitioning, adults’ services will be able to help them with all sorts of things, such as higher education, travelling, careers and sex
 
  • They might even find that they want to be seen in a more grown-up environment

when do young people with epilepsy need to transition?

  • Everyone will have a different time that is right for them, depending on the care and support they need
 
  • The reason it might be discussed, or they might be reading about it, is to begin thinking about how to prepare for it
 
  • It is important that they are involved in the discussion of when they are ready to transition, because their doctors and other healthcare professionals might have an idea, but it is up to them to help decide

can they choose where they transition to?

  • Yes, as part of the process, their healthcare team help them look at where their healthcare needs will be best met and how it will fit into their future plans
 
  • Their doctor or other healthcare professionals will be able to help them make the best decision by giving them helpful information
 
  • It is a good idea to visit many of the places they could choose from and meet some of the people who will be supporting them. This will help them make the decision that’s best for them

who can help them get ready to transition?

  • They will be able to get information and support about transitioning from their current doctors and other healthcare professionals.

This may include:

    • Discussing what to expect and how the young person with epilespy can be involved

 

    • Talking to them about their epilepsy, treatment and any side effects they might experience

 

    • Speaking to them on their own for part of their appointment and working towards being on their own for their whole

appointment

    • Educating them on when to get help during an emergency and key contacts that may be needed 

 

    • Helping them to understand how their epilepsy might affect future education and career aspirations

 

    • Educating them on support networks available for them before, during and after the transition

 

    • Helping them understand the importance of a healthy lifestyle, involving exercise and diet, avoiding smoking and practising safe

sex

Support from family

Up to now, the young person with epilepsy’s parents or carers have been really important in looking after their health and can give them lots of useful advice for moving into adult care. In this process, their parents or carers will still be important and be involved in their care.

For any questions, worries or concerns the young person with epilepsy might have, they could speak to their parents, carers or healthcare team. They might also want to talk about practical issues, such as how to get to appointments, getting repeat prescriptions and asking questions at an appointment.

During this process, remember that their parents or carers might be finding the process difficult too, as they hand over the responsibility to the young person with epilepsy. This might be hard for them, and they might have worries too. Speaking to each other about how they feel could help both young people with epilepsy and their parents or carers through the move.

UK-EPI-2400066

Date of Preparation: November 2024

Questions to ask

questions the young person with epilepsy or their parents / carers might want to ask:

  • What is the plan for me to transition? Does it include things such as your health and wellbeing, education, employment?
 
  • When am I transitioning to adults’ services?
 
  • Can I choose where I move to?
 
  • Can I meet the new adults’ services before I leave?
 
  • Can I have an on-site visit of the new adults’ services?
 
  • Are there any people in my age group I can speak to about the transition process?
 
  • What do I need to know before I move?
 
  • When am I able to start getting involved in my healthcare?
 
  • How will my epilepsy affect my future, for example education and employment?
 
  • Am I eligible for any benefits or entitlements and how can they be used?

NICE Guidelines:

“Transition from children’s to adults’ services for young people using health or social care services”

  • This guideline discusses the overall process of transitioning a young person from children’s to adults’ services
 
 
UK-EPI-2400066

Date of Preparation: November 2024
Understanding Epilepsy
Adults
Transition from Paediatric to Adult Care
FAQs