Moving On to Adult Services
Moving On
Moving on from the children’s heart service to the adult congenital heart service is an important time in your life. It is a time when you become more involved in dealing with your own heart problem and gradually become more responsible for your own health.
How to find your way around
Use the links below to explore
What will happen?
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 young person’s clinic will help you to become more confident and will help you understand your heart condition.
These are held in the outpatient departments at the Royal Manchester Children’s Hospital and Alder Hey Children’s Hospital in Liverpool.
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 on to the adult service.
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 NHS Foundation Trust
Provides all levels of care including specialist heart surgery and catheter procedures for children with congenital heart disease
Royal Manchester Children’s Hospital
Provides all levels of specialist cardiology care including inpatient and outpatient care. It does not provide any surgery or catheter procedures for children with heart problems
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 were 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 clinic.
What will you talk about in clinic?
This appointment will be informal and is for you. You will be asked to fill in a questionnaire to help the specialist nurse talk to you about the things that matter to you. These conversations will happen slowly and over time they will talk to you about the following:
Your condition
Your heart condition using pictures to help explain it to you.
Medicines
Talk to you about any medicines you are taking and why you need to take them.
Keeping Active
How to keep yourself healthy including the importance of keeping active.
The Internet
How to find teenage friendly information on the internet.
Issues
Issues around growing up with a congenital heart problem.
Education
Going to high school, university and career choices.
Alcohol, Smoking & Drugs
The effects of alcohol, smoking and recreational drugs on your heart.
Relationships
When you are ready, the nurse will talk to you about relationships and having sex and will include information about contraception and pregnancy.
Feelings
How to find help if you are feeling worried, sad, anxious or angry about your heart problem and how it affects you.
Moving on
What to expect when you transfer your care to the adult congenital heart service.
Social Media
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?
You will still see your heart doctor as normal in the children’s hospital. The Young Person’s (YP) Specialist Nurse will see you as well as the doctors and nurses you usually see. You will also be able to meet the adult team.
Can I see the nurse on my own?
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.
When will I stop going to the Young Person’s Clinic?
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?
There are two ways in which your care may be handed over to adult services:
Hand over clinic
You will be invited to a “Hand Over” clinic, where your care will be handed over to the adult team in person. In this clinic you will meet the adult team as well as the team from the children’s hospital.
Direct transfer
Your doctor will send a letter to one of the adult heart doctors and ask them to take over your care.
Who will support you?
The (YP) Specialist Nurse will be there to support you. They will make sure that you are settled in the adult service and will hand your care over to an Adult Congenital Heart (ACHD) Specialist Nurse who will continue to help you.
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:
- Your Heart Doctor from the children’s hospital
- The Young Persons (YP) Specialist Nurse
- The Adult Congenital Heart (ACHD) Doctor
- The Adult Congenital Heart (ACHD) Specialist Nurse
At this clinic you will:
- You will have a scan of your heart and an ECG as normal
- The doctor will tell you the results of your tests and talk to you about how you are doing
- They will introduce you to the adult team. This team is called the Adult Congenital Heart Team or ACHD Team
- They will tell you which adult hospital your next appointment will be at and who will be looking after you
- You will be able to ask lots of questions
- You will be given the contact details of the adult team
What happens if I don’t go to the ‘Hand Over’ clinic?
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.
What happens if I move or go away to university when I get older?
The most important way of looking after your health is 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.
How can I expect to be treated?
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.
Who can I speak to during this time?
Young Peoples Specialist Nurses
Manchester Childrens Hospital
Helpline: 0161 701 0664
Young Peoples Specialist Nurses
Alder Hey Chidren’s Hospital
Helpline: 0151 252 5291
After you have met the adult congenital heart team you can contact them
ACHD Specialist Nurses
Liverpool Heart and Chest Hospital
One helpline for all patients: 0151 254 3333
Useful Links
Click on the links below to find information about charities and support groups that help young people who have grown up with their heart problem.
National patient support group for adults with congenital heart disease
Website: www.thesf.org.uk
Helpline: 0800 854 759
Email: admin@thesf.org.uk
National Support Group run by the British Heart Foundation for young people growing up with congenital heart disease
Teen Heart: for people Aged 13-18years
One-Beat for 18-30 year olds living with a heart condition
This is a support group for adults who have grown up with their heart problem and are being cared for in the North West of England, North Wales or the Isle of Man.
Join via FaceBook: (3) N-WACH Support Group | Facebook
Telephone the ACHD Helpline: 0151 254 3333 to find out more.
National Charity supporting people who have been born with half a heart. They have a youth Zone for young people
Website: https://www.lhm.org.uk/youth-zone/
Would you be interested in meeting with other young people with a congenital heart problem? Please get in touch with the Lead Nurse, called Linda Griffiths to let her know.
Website: https://www.northwestchdnetwork.nhs.uk/
Email: northwestchdnetwork@alderhey.nhs.uk
Twitter: https://twitter.com/NwchdN
Learn more about eating disorders.
Providing advice and support to empower anyone experiencing a mental health problem.
Website: https://www.mind.org.uk/
FRANK provides a friendly, confidential and non-judgmental service to anyone wanting help, information or advice about drugs through a helpline, website, email or text messaging service.
Website: https://www.talktofrank.com/
Drinkaware can help you learn about the impact of alcohol on you, your friends or your family. They offer support, information and advice.
Website: https://drinkaware.co.uk
NHS advice about healthy living, including eating a balanced diet, healthy weight, exercise, quitting smoking and drinking less alcohol.
Website: https://www.nhs.uk/live-well/
Sexual health services are free and available to everyone, regardless of sex, age, ethnic origin and sexual orientation.
Website: https://www.nhs.uk/nhs-services/sexual-health-services/guide-to-sexual-health-services/
Whether you want to understand more about how you’re feeling and find ways to feel better, or you want to support someone who’s struggling, Young Minds can help
Website: YoungMinds | Mental Health Charity For Children And Young People | YoungMinds
Who has helped write this leaflet?
Members of the Cardiac Youth Forum called “hearts4teens” and young people who have gone through this process helped write this information leaflet.
