Our congenital heart disease (CHD) centre is one of the largest in the country. Clinical teams treat more than 10,000 patients with these diseases each year. Many receive care from their first few days of life.
Royal Brompton Hospital has an international reputation for specialist paediatric services. It is the third largest UK centre for paediatric cardiac surgery and the largest UK centre for congenital heart services.
Adult congenital heart disease (ACHD)
The adult programme encompasses a national and international referral centre providing highly-specialised care for adolescents and adults with congenital heart disease. Having the adult unit means that the transition to adult care can be tailored to the individual young person in a seamless, coordinated way.
CHD in children
Our congenital heart disease (CHD) service for children is one of the largest centres in the UK. It treats patients from all across the country, as well as international patients, and provides world-renowned care and innovative treatments.
Transitioning from our child to adult services
Transition is the term we use to describe moving from the paediatric (children's) cardiology service to the adult service.
It is a period during which patients become more involved in dealing with their heart problem and more responsible for their own health.
The congenital heart disease transition process
If you are our patient, when you turn 13, you will start to come to our young persons' congenital cardiology clinics. These are run by our transition team and the majority of the patients attending will be teenagers.
The clinics have been set up to help you become more independent and to understand your condition better. At the young persons' clinic the emphasis will be on you and on helping you look after yourself.
The more you know about your condition, its treatment, and how to take care of your health, the more prepared you will be when it is time to move over to the adult service.
Who will help me through the congenital heart disease transition process?
The specialist transition nurses will talk to you about your condition, and the transition care plan. They will also talk to you about issues around growing up with congenital heart disease, including exercise, employment, insurance, and sexual health, and will give you information on support groups.
You can ask the team any questions you may have about moving into the adult cardiology service.
Will I be expected to be seen on my own at the young persons' clinic?
Whether or not your parents come into your doctor’s appointment with you is entirely up to you. When you first start coming to the young persons' clinic you may want your mum, dad or guardian to see the doctor with you.
It is often useful to have someone with you during clinic. Sometimes you may forget some of the things you discuss, which the person who was with you may remember.
As you grow older and get used to attending these clinics you may take the decision to talk to the team by yourself. An important part of transition and the young persons' clinic is preparing your whole family for your move from a child patient to an adult patient.
What if I want to discuss an issue that I don't want my parents to know about?
This is absolutely fine. You could start the appointment with your parents in the room and then have time alone with the nurse or doctor at the end of the appointment if you would like. It is entirely up to you.
Remember that whatever you say to our doctors or nurses is treated in confidence – this means it will not be discussed with anyone else without your permission.
The adult congenital heart disease department
When will I stop going to the paediatric outpatients department and move to the adult department?
Different people are ready to move on at different times – some people move on at 16, some at 18. Part of the role of the transition nurse specialist is to suggest when you are ready to move on and make sure you are comfortable with the decision.
What is the adult department like?
Our adult congenital heart disease (ACHD) unit is one of the largest specialised centres in the world. It provides a full range of outpatient and inpatient care for patients with a variety of congenital heart conditions.
Our ACHD team works closely with doctors from the paediatric cardiology team that has looked after you over the years. Our transition nurse can answer any questions you may have about the adult unit – just ask.
Will I still go to Rose ward if I have to be admitted?
If you are 15 or under and need to come into hospital you will be cared for on Rose ward. If you are 16 years or older you will generally stay on Paul Wood ward but will be looked after by your paediatric consultant until you have officially transferred to the adult department.
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 and so it is really important that you let us know if you change your address or go away to university. Some patients with simple congenital heart problems can be discharged from regular care but others need to be seen regularly – although this may only be every couple of years.
As you get older you will become responsible for making and attending your outpatient appointments. Remember that it is very important to let us know if you are unable to attend an appointment you have booked.
Transition care plan
This is a document that you will work through with the nurse specialist during the transition process. This gives the adult services doctors information about you and your future plans.
The care plan takes you through understanding your heart condition as well as looking at things such as travel insurance, future career plans, healthy living advice and knowing who to contact and when.
Rhythmic Beats is a pan-London event for adolescents with congenital heart disease. The next event will be hosted by Royal Brompton & Harefield NHS Foundation Trust in summer 2018.
The congenital heart disease service at our Trust provides lifelong care, from before birth through to adulthood. Our transition service helps young people move seamlessly from paediatric to adult services, all within the Trust.
These stories come from patients or parents of patients who have been treated for some form of congenital heart disease (CHD) at the Trust.
At the Trust, we treat over 12,500 CHD patients. The stories below are just a very small number of the many patients who have received excellent care at the Trust.
- Alexander Ellis - Alexander Ellis was diagnosed with a serious form of congenital heart disease when his mother had a routine 20-week scan at St George’s hospital in Tooting. Consultant fetal cardiologist Dr Julene Carvalho from Royal Brompton picked up an abnormality called double outlet right ventricle where the heart’s two great arteries both arise from the right ventricle.
- Sophie Lyons - Sophie Lyons was born at Princess Alexandra Hospital in Harlow and although she was quite blue in colour, her heart condition wasn’t picked up. Sophie says: “A friend of my mum’s, who is a midwife, saw me at home a couple of days later and thought that something was wrong, so I was taken to see my GP who identified a heart murmur.”
- Lucy Hijmans - When Lucy Hijmans was born, her heart was only able to deliver half the oxygen she needed and she could only just breathe for herself. Following an early pregnancy scan, her mother’s obstetricians referred her to Dr Julene Carvalho, a consultant cardiac foetologist at Royal Brompton, who diagnosed her heart problem as transposition of the greater arteries, which is a type of congenital heart disease.
- Sarah Howell - Sarah Howell, 34, has been under the care of Royal Brompton since birth. She was born with tetralogy of Fallot, a congenital condition causing a number of structural abnormalities in the heart. These defects mean that oxygenated and non-oxygenated blood mixes, causing the overall amount of oxygen in the blood to be lower than normal.
- Alexander McPhee - The birth of Alexander McPhee, a beautiful baby boy weighing a healthy 8lbs 13oz, was a cause for much celebration. Until his mother Libby received the type of news that every parent dreads.
- Tracie Giddy - Now aged 35, Tracie Giddy has been treated at Royal Brompton for her heart condition since she was two days old. Tracie was diagnosed with left atrial isomerism and double-outlet right ventricle, an extremely complex heart condition.
- Samuel Liu - Samuel’s mother Wai discovered that her son had a complex heart condition when she had her 20-week scan during pregnancy. Wai was immediately referred to Royal Brompton where she was seen by fetal cardiac nurse specialist Susanna de Sousa and consultant fetal cardiologist Dr Julene Carvalho.
Patient information leaflets
Below are patient information leaflets that will be useful for patients with congenital heart disease and their parents.
Cardiac catheterisation (for children) - July 2015 (1.33MB)
Paediatric critical care - information for parents and carers - Royal Brompton Hospital - September 2014 (pdf, 506KB)
When your child goes home after heart surgery - Royal Brompton Hospital - July 2016 (pdf, 487KB)
After your heart operation - Royal Brompton Hospital - January 2018 (pdf, 2.17MB)
Innocent heart murmur - July 2014 (pdf, 370KB)
Adult congenital heart disease unit
Royal Brompton Hospital, Sydney Street, London, SW3 6NP