This leaflet aims to give you and your parents/ carers some information about what to expect during the process of transitioning from children’s to adult services.
What is transition?
We use the term ‘transition’ to describe the process of moving from the children’s service to the adult congenital heart service. This usually happens when you are around 16 years old.
Why do I need to think about it now?
It’s important to start thinking about it now so you can prepare yourself. The more you know about what’s ahead, the smoother the transition will be.
As you get older, you’ll take more responsibility for your health. Up until now, your family/carers may have made most decisions about your heart condition. But during transition, we’ll help you, and those supporting you, learn to be more independent and understand your heart condition better.
Why do I need to move to the adult services?
The adult service is designed to provide you and your carers with the best care, treatment, and support as you get older.
Where will I go for my heart check when I am 16 years of age?
We run clinics in Leeds, Bradford, Sheffield and Hull, so it will depend where you live as to where you will be seen. The adult congenital heart doctors and nurses travel to these clinics, so we hope you won’t have to travel too far.
Is the adult clinic any different?
During your check-ups, the process will be quite similar. Your echo (scan) will be done by a trained sonographer in a separate room, not by the doctor. The healthcare team will address YOU directly, asking questions about your heart and any symptoms you may be experiencing, instead of asking your parents/carers. Don’t worry though, the team are happy for you to bring someone with you to clinic, which at first is likely to be your parents or carers.
Getting Ready
We can help you get ready to move to adults by:
- Helping you to understand your heart condition and any medications that you are taking.
- Discussing contraception and pregnancy as this may have implications for you and your heart condition.
- Making sure that you know who to contact if you have any questions or worries.
- Talking to you about having a healthy lifestyle and the importance of exercise.
- Giving you information about support groups for young people with congenital heart disease.
- Talking to you about school and your future career and whether your heart condition may affect this.
- Understanding the importance of being seen as an adult and continuing regular check-ups throughout your life.
What happens now?
About a year before your first adult appointment, you’ll get an invite to a virtual transition information session. Here, you’ll meet some of the adult team who’ll fill you in on what to expect in the adult service. These sessions happen twice a year, and it’s a good idea to go if you can.
A few months before your first adult appointment, you’ll receive a phone appointment with the adult specialist nursing team. They’ll talk you through what to expect, and you and your family can ask any questions you have.
If you don’t get an invite to one of these sessions but think it would be helpful, maybe because you’re feeling particularly worried or you have other medical issues, just let the nurse specialists know, and they’ll arrange something with you.
Top Tips
- Your parents/carers can still be involved in your care during this time and be there for support; talk to them about how you are feeling.
- Remember this change may be difficult for your parents, talk together about this.
- If there is something that you don’t understand or want to know more about, just ask, don’t be embarrassed.
- Write questions down as you think of them and bring them to clinic so you will remember to ask them.
- When you are ready, think about coming into part of your clinic appointment on your own.
Tips for parents/carers
- You will have been making most of the decisions about your child’s care so far. During transition we can help them, alongside you, to become more independent and to understand their heart condition better.
- It can be really hard to think about ‘letting go’ and you may worry about the transition process. The child and adult teams work closely together and will try to make the transition as smooth as possible.
- Encouraging your child to start making health related decisions for themselves will help to ensure they take responsibility as an adult.
- Some young adults get ‘lost to follow-up’ in the transition process, in that they stop attending their appointments due to various reasons. We would like to work with you so that this doesn’t happen.
- If you or your child would like to read a bit more about transition and ways in which you can promote some independence, please go to www.readysteadygo.net and look at the information sheets and questionnaires.
- Please do get in touch with the child or adult nursing teams with any questions.
Where to get more information and advice
Leeds Congenital Hearts
Web: www.leedscongenitalhearts.com
and look at the teen section
Teen Heart
Teen Heart is a British Heart Foundation Support Group for people aged 13-18 with a heart condition. By joining you can meet other young people with similar experiences. Sign up for free at yheart.net
The Somerville Heart Foundation
Web: https://sfhearts.org.uk/
Information and support for young people and adults with congenital heart disease