A guide for parents
Preparing for adult heart services
01
A process rather than one appointment
Transition means preparing a young person to move from children’s heart care to a specialist adult service for heart conditions present from birth. It usually involves conversations and learning over time, with the timing agreed locally. Ask which adult service will take over and how the teams communicate. Many people need ongoing specialist checks even after treatment and even when they feel well.
02
What happens next
Learn the parts that matter to you
Young people can gradually learn their diagnosis, operations, medicines, contacts and when to ask for help. Ask about a transition passport, a record of key health information, or another written health summary. Adult-life topics can include work, study, exercise, relationships, contraception and pregnancy planning. Your heart team needs to advise you about these topics.
A general leaflet cannot say what is suitable for your heart and blood flow.
Keep support while roles change
For a young person: choose one skill to practise, such as asking a question yourself or knowing how to contact the clinic. Ask for time to speak privately with the team and explain what support you still want from family. For parents: discuss how to shift from answering every question to helping your child prepare.
Additional learning or communication needs should be included in the plan. Before transfer, confirm the first adult appointment, the named contact and what to do if the invitation does not arrive. You should know who is responsible for care after the move.
03
Questions to ask
Save the questions you want to take to your next appointment. You can edit them in your Journal.
- Who will help our child prepare for adult heart services, and when should we start planning together?
- Which adult team will take over, and how will information and appointments be handed over?
- What support will continue after the move, and who should our child contact if they need help with the transition?
Sources and review
Sources checked 9 October 2026. Independent clinical review pending.
- Evelina London: Transition to adult congenital cardiac services
Accessed 9 October 2026
- British Heart Foundation: Adult congenital heart disease
Accessed 9 October 2026
- British Heart Foundation: Congenital heart disease
Accessed 9 October 2026