Transition to adult heart services

We hope that you will be ready to go to the adult clinic by the time that you are 16 years old, though we understand that not everyone will be ready by then. Some young people may go when they are 17 or 18 years old. All young people must move to adult heart services by the time they are 18.

Before you go to the adult clinic you will have worked through the 'transition passport'. This is a plan which makes sure you have been given all the information you need growing up as a young person with congenital heart disease.

Our team will be fully involved in your care during transition. You will also meet with the adult team during this time and will be able to look around the facilities at St Thomas' Hospital.

The children's heart outreach sisters from Evelina London will support and help you. You will also be introduced to the adult congenital nurse specialist who will be involved with your transition and will support you once you have made the move to adult heart services.

You will learn:

• about your heart condition – what it is and how it affects you
• what care and treatment you have had and what you may need in the future
• lifestyle issues such as alcohol, piercings and tattoos, smoking, family planning and career options.

You will be able to ask questions at any time if there are things you want to know more about, or things that concern you. 

Your parents can come to clinics with you for as long as you want them to – even into adult services if you wish.  

As you get older and become used to attending clinics, you may decide to talk to the doctor by yourself.  

It is important that we prepare you and your family for your move from being a child patient, to being an adult patient.

Until you are 16 years old, your parents have a right to come to clinic with you. 

However, that does not mean that they have to spend the whole of the consultation in the room with you. You can always have time on your own with the doctor at the end of your appointment, or you could ask to see the outreach nurse or nurse specialist alone.

Anything you discuss with your doctor or nurse will be treated confidentially. This means it will not be discussed with any one else without your permission.

While you are going through the transition process, you are still under the children's team, so you will be admitted to Evelina London. 

Once you have completed transition, you will be admitted to the adult heart wards at St Thomas' Hospital.

If you move away it is important that you let us know. Regular check-ups are essential to make sure you stay healthy and if you move away we will need to refer you to a heart specialist near your new home, who can continue to monitor you.

If you go away to university, it may still be possible to see the team at St Thomas' Hospital, as we can schedule your appointments to be during your university holidays. However, it is also important for you to have a good doctor near your university, who knows about your condition and can help you if you unexpectedly become unwell.