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Transition - a journey from child to adult healthcare.

8 September 2015  |  Dr Julian Ayer  |  3 Comments

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         

About the Author: Dr Julian Ayer

Dr Julian Ayer
Julian Ayer is a paediatric cardiologist at The Heart Centre for Children, The Children’s Hospital at Westmead. His is also a Conjoint Senior... Read more

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Comments (3)

Emily said on the 2nd December 2015

HeartKids Queensland have informed us that Dr Radford is one of three Adult Congenital Heart specialists at the Prince Charles Hospital, they believe that there will be two more at the hospital next year. Unfortunately at the moment there is not a Teen transition programme in place in QLD, but HeartKids Queensland actively working on this. The contact for Young Hearts in QLD is Jess, her email address is .(JavaScript must be enabled to view this email address) if you would like any further information.

Jenny said on the 11th November 2015

I have a 17 year old daughter who should be well on the way to transitioning. Does anyone in Queensland have a transition plan or an adult congenital Cardiologist other than Dr Dorothy?

Robyn do you have contact details for young hearts.

Many thanks

Robyn Doyle said on the 30th September 2015

There is no “transition team” at Prince Charles Hospital.
As far as I am aware Dr Dorothy Radford is the only adult congenital heart Cardiologist at Prince Charles.
Only one adult congenital heart surgeon, who operates only one day a week.
There are more adults with congenital heart disorders alive than children.
There is no support group for young adults, apart from young hearts which meet for lunch occasionally.

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