Moving on
From the age of thirteen onwards (when you are in year 9 at school) you will be invited to come to a young person’s clinic.
The more you know about your heart condition and how to take care of yourself, the more prepared you will be when it is time to move to the adult service.
The young person’s clinic will help you to become more confident by helping you to understand your heart condition.
Where do the young person’s clinics take place?
The young person’s clinics take place at either Royal Manchester Children’s Hospital or Alder Hey Children’s Hospital. You will be invited to one of these. It may be possible to have a virtual appointment if you live a long way away. Click on the links below to find out more about these hospitals.
Alder Hey Children’s Hospital
Provides all levels of care including specialist heart surgery and catheter procedures for children with congenital heart disease. They also look after children with heart rhythm problems including heart problems that are passed on through your genes. We call this inherited cardiac conditions (ICC).
Manchester Children’s Hospital
Provides all levels of specialist cardiac care including inpatient and outpatient care. It does not provide any surgery or catheter procedures for children with heart problems. They also look after people with inherited cardiac conditions (ICC).
What happens at the young person’s clinic?
Your heart doctor will refer you to the young person’s clinic. This clinic is run by specialist nurses. They help look after young people who have a heart problem. They will arrange to see you in this clinic. They will be as flexible as possible to avoid you missing too much time from school.
These appointments may be via a video link so that you don’t have to travel to the hospital. You may also be invited to a group appointment where several young people will be seen together.
You will be given information about your heart condition to keep. You may find it helpful to bring this with you each time you come to the clinic
What happens at the young person’s clinic?
What will you talk about in clinic?
Your heart condition using pictures to help explain it to you.
Explain any operations or procedures you may have had when you were growing up.
Talk to you about any medicines you are taking and why you need to take them.
How to keep yourself healthy including the importance of keeping active.
How to find teenage friendly information on the internet.
Issues around growing up with a congenital heart problem.
Going to high school, university and career choices.
The effects of alcohol, smoking and recreational drugs on your heart.
When you are ready, the nurse will talk to you about relationships and having sex and will include information about contraception and pregnancy.
How to find help if you are feeling worried, sad, anxious or angry about your heart problem and how it affects you.
What to expect when you transfer your care to the adult congenital heart service.
The adult specialist nurses run a private Facebook page called ‘NWACH Support Group’ that you can consider joining once you turn 18 years of age.
Will I see my usual heart doctor and nurses?
Yes, it is always possible to see the nurse on your own. You could start the appointment with someone else in the room to support you. This might be your Mum, Dad or carer but it could also be your friend or someone you trust. As you get older and are used to attending these clinics you may want to meet with the nurse on your own. This will be up to you to decide. An important part of this process is supporting and preparing your whole family for the move to adult services.
Different people are ready to move on at different times. Some people are ready to move to adult services at 16 years of age and some need to wait until they are 18 years of age. You may only need to come once or twice, or you may need to come many times. The (YP) Specialist Nurse will work with you to agree when you are ready to move on to adult services.
How will my care be transferred over to adult services?
Hand Over clinic
What is the ‘Hand Over’ clinic like?
At this appointment your care will be handed over to the adult team. This can be helpful if you have a heart condition that is complicated or if you have lots of different needs. The (YP) Specialist Nurse will tell you whether you need to be seen in this type of clinic. You might want a member of your family or a friend or someone else that you trust to support you.
You may see the following people in this ‘Hand Over’ clinic:
What will happen at this clinic?
What happens if I don’t go to the ‘Hand Over’ clinic?
Your doctor will send a letter to one of the adult heart doctors and ask them to take over your care.
You will receive the same support and information from the (YP) Specialist Nurse. Your care will only be transferred to adult services when you both agree that it is the right time. This will be sometime between the ages of 16 and 18 years of age. The (YP) Specialist Nurse will continue to support you until you have settled into your adult care. You will be able to meet the adult team before your care is moved and you will be told how you can contact them.
Regardless of how your care is transferred, the (YP) Specialist Nurse from the children’s hospital will be there to support you. They will make sure that you are settled in the adult service.
The adult congenital heart service has a team of specialist nurses to support you once your care has transferred. The Adult Congenital Heart (ACHD) Nurse Specialists look after adults with congenital heart problems. The Inherited Cardiac Conditions (ICC) teams also have a small number of specialist nurses in adult services too. If you have a heart condition which is not congenital or inherited you will be referred to your local adult cardiac team. You will be given the contact details of the adult nurses before your care is transferred and you may be able to visit the adult hospital before your first appointment there.
It is important when you move away from home that you continue to have regular check-ups. If you change address or go away to university the Specialist Nurses will make sure that your care carries on as normal whilst you are away at University.
You will always be treated equally and with respect. The staff will do everything to ensure that you feel comfortable. They may check with you what name you would like to use and how you would like to be addressed.
Getting ready for your appointment in the Young Person’s Clinic
Whilst you are waiting to be seen the (YP) Specialist Nurse may ask you to fill in a questionnaire. This will help the nurse talk to you about the things that are important to you. Click on the links below and have a look before your appointment.
| Alder Hey Children's Hospital | Manchester Children's Hospital |
|---|---|
| YP Specialist Nurse | YP Specialist Nurse |
| Helpline: 0151 252 5291 | Helpline: 0161 701 0664 |
Useful links
Please click here for more charities that you may find helpful.
