Transition - a journey from child to adult healthcare.
Living with congenital heart disease is like a journey for children and their families. Part of this journey, transitioning from care in the children’s hospital to care in adult health services, can be daunting. However, if it is done well, then this transition process can give young people and their families, an improved understanding of their heart condition and how it impacts on work, sport and other activities and a greater sense of confidence in accessing and negotiating adult health services.
The “transition team” involves the young person, their parents and wider family, the paediatric cardiology team at the children’s hospital, the adult cardiology team and the GP. In order to be a success, transition should be an active, coordinated and planned process. As with any planning process lists can be useful. These are my top tips for some on the key players in any successful transition process.
For The Cardiology Teams
- Have a formal process of transition with a clear pathway of handing over care from the paediatric to the adult cardiology team.
- Start the process of transition early, at about 14 years.
- Have combined clinics with doctors and nurses from both the paediatric and adult cardiology teams.
- Have a specific person in the cardiac team to help with transition. The “go to person” for young people.
- Communicate clearly with the young person, their parents and family and GP about when and where care in the adult service will begin
- Develop written information for the young person about their heart condition, their previous heart operations and their medications ( put together as a heart health “passport”)
- Collect information on the “success” of transition
For Parents and Family
- Gradually encourage your teenager to ask questions about and find out more about their heart condition and how it might impact on their future.
- Gradually let your young person see the doctors and nurses on their own.
- Ask the paediatric cardiac team about the process of transition in their service.
- Ask the paediatric cardiac team for written information to carry in a heart health “passport”.
- Ask the paediatric cardiac team about where and when appointments in the adult service will begin.
- Encourage your child to choose and visit a GP. This may or may not be the family GP.
For Young People
- Ask questions of the cardiology team about your heart condition and what it means for work, study, travel etc
- Ask your cardiology team for written information about your previous operations and medications. Carry this heart health “passport” with you to all your appointments.
- Ask about who you can contact for further information. About things you forgot to ask at the check-up
- Know when and where your appointment is in the adult health service
- Ask about who you should see if you do not feel well prior to your first appointment in the adult service
- Find a GP that you are happy with and see them regularly