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Congenital heart disease

Congenital heart disease (CHD) is a heart condition present from birth. As one of the most common birth defects in the UK, it affects approximately 8 in every 1,000 babies born, and with advances in paediatric cardiac surgery and cardiology, over 90% of babies born with CHD survive to adulthood. As a result, there are more adult patients with CHD than paediatric patients.

Care for all ages

At Royal Brompton and Harefield hospitals, we practice using a vertical model, which means caring for CHD patients of all ages within one service: from pre-birth (fetal), younger children (paediatric) to adults with congenital heart disease (ACHD). We strongly believe that structuring care this way provides continuity and helps you navigate the health services as you move through life's challenges and milestones. 

In our centre, we have also developed several other services that are important for CHD patients, including the pulmonary hypertension (PH) and pregnancy and heart disease services. 

All patients with CHD, whether simple or more complex, benefit from expert care throughout their lives. How often you will need to go to hospital appointments depends on your current condition. Your medical team will give you more information about your heart and make a management plan with you, including how often you need to go to the ACHD clinics. 

Going to your appointment

It is extremely important that you attend your planned appointment, even when you feel well because there could be changes to your heart that you may not be aware of. If you haven't received an appointment for a follow up at the ACHD clinic, please contact our appointments office, or your consultant's secretary to help arrange your next appointment. 

Appointment enquiries

Royal Brompton Hospital
Phone: +44 (0)207 351 8011

Harefield Hospital
Phone: +44 (0)1895 828 696 

You can also contact your consultant's secretary

The ACHD team

Our team includes:

  • 6 full-time ACHD consultants, three full-time PH consultants, and two full-time consultants working across both ACHD and PH
  • 1 ACHD, and two PH consultants also work in the team as part of our joint working with Guy's and St. Thomas's Hospital
  • 1 academic consultant in cardiac ACHD MRI
  • 1 consultant lead in ACHD echocardiography
  • 4 full-time congenital cardiac surgeons, including neonatal, paediatric, and ACHD surgeons
  • 2 consultant electrophysiologists with a special interest in ACHD
  • 5 clinical nurse specialists (CNS), 3 CNS in PH, and three CNS in CHD transition
  • 1 clinical psychologist

This is in addition to an extended group of specialists in imaging, anaesthetics, surgery, interventional cardiology and electrophysiology (arrhythmias). 

There are close clinical and academic ties between the ACHD and paediatric cardiology department, providing seamless care from childhood to adulthood. 

ACHD consultant and specialist team

Pulmonary hypertension (PH) consultant team

ACHD surgical team 

ACHD cardiac catheter intervention team

Arrhythmias and Pacing (Electrophysiology)

  • Prof Sabine Ernst (arrhythmias)
  • Dr Tom Wong (arrhythmias and pacing)

Clinical nurse specialist (CNS) team

  • Hajar Habibi (Lead)
  • Clare Finlay
  • Ella McDonnell
  • Carlo Tongol
  • Melissa Hackett

PH clinical nurse specialist (CNS) team

  • Carl Harries (lead CNS for PH)
  • Stuart Craig
  • Eva Moriarty 

CHD transition (age 12 to 21) clinical nurse specialist (CNS) team

  • Virginia Castro Meira (lead nurse for fetal, paediatric and transition CNS teams)
  • Loredana Haidu
  • Danielle Poole
  • Michelle Lambell

Patient education

Patient education and empowerment are important components of the ACHD service. The clinical nurse practitioners coordinate education and patient involvement. Patients and their family can also explore the educate and empower series for ACHD patients.

Advice and education cover lifestyle issues such as contraception, insurance, employment and sport. Patients and their families also find additional support from patient groups such as The Somerville Foundation or the British Heart Foundation

Transition CHD service

Our hospitals have one of the most developed transition services in the country, providing education and support to young people with CHD and ensuring a smooth transition from paediatric to ACHD services. 

If you are the parent/carer of a child over the age of 12, who will soon transition to adult care, find out more. Find out more about transitioning to the adult ward

Contraception

Family planning is important to many of our ACHD patients. Find out more about different contraception, their effectiveness and any side effects they have when combined with other contraceptives or other medication. 

Pregnancy

We also provide obstetric and gynaecological care for patients with CHD. This is provided jointly with the high-risk maternity team from Chelsea & Westminster Hospital.

New developments

  • Advanced ACHD heart failure and transplantation clinics are run jointly with the transplant team from Harefield Hospital
  • A risk stratification service for serious arrhythmias is run by the ACHD, MRI and electrophysiology teams
  • We have developed specialist ACHD-PH/Eisenmenger clinics throughout our network, run by experts in ACHD and PH
  • National and international preceptorships run on a yearly basis, providing education for UK and overseas ACHD and PH consultants 

Clinic information

Our ACHD clinics run on:

Mondays

  • Dr Isma Rafiq's clinc runs in the morning at Royal Brompton Hospital
  • Dr Harith Alam's clinic runs in the afternoon at Royal Brompton and Harefield hospitals

Tuesday

  • Professor Michael Gatzoulis' ACHD video clinic runs in the afternoon

Wednesday

  • Dr Aleksander Kempny's ACHD clinic runs in the afternoon at Royal Brompton Hospital

Thursday

  • Professor Dimopoulos' ACHD clinic runs on Thursday afternoon at Royal Brompton Hospital

Friday

  • Dr Claudia Montanaro’s ACHD clinic runs on Friday morning at Royal Brompton Hospital (former Professor Gatozulis’ clinic. Some patients traditionally seen in the Friday morning ACHD clinic will be invited to attend a Tuesday clinic. 

We are committed to providing patients with the best possible care. If you have any queries about these clinic changes, please contact the ACHD team:

Phone: +44 (0)20 7351 8764

Email: gstt.achd-rbh@nhs.net

Education & research

As well as being a major research facility for CHD and cardiac surgery, our ACHD centre also provides national and international specialised training for cardiologists, cardiothoracic surgeons, and allied disciplines. 

Specialist international clinical fellows are an integral part of our centre and contribute to the worldwide reputation of the organisation.

National and international meetings in the field – coordinated from Royal Brompton and the National Heart & Lung Institute – are also an integral part of the programme's academic curriculum. Find out more about Royal Brompton's 12th advanced symposium on ACHD

Members of Royal Brompton Hospital's ACHD centre are sought-after conference speakers and contributors to major literature in this emerging cardiovascular field.  The team strives to share its learning with colleagues worldwide and has produced numerous highly regarded textbooks and articles. 

Find us

Adult Congenital Heart Disease Centre and Centre for Pulmonary Arterial Hypertension
Royal Brompton Hospital
Sydney Street
London
SW3 6NP

For information about how to get here, including public transport and parking information, visit our Royal Brompton Hospital directions page.

Contact us

Appointment enquiries: 

Royal Brompton Hospital
Phone: +44 (0)207 351 8011

Harefield Hospital
Phone: +44 (0)1895 828 696 

You can also contact your consultant's secretary

Clinical Nurse Specialist Teams 

Monday to Friday, 9am to 5pm

CHD Adult Team 

For patients aged 21 and over 

Phone: +44 (0)207 351 8764

Email: gstt.achd-rbh@nhs.net

CHD Transition Team 

For patients aged between 16 and 21

Phone: +44 (0)330 128 8772

Email: gstt.transitionchd-rbh@nhs.net

Out of hours emergency

Phone: +44 (0)20 7352 8121

Ask for the on-call ACHD team, or visit your local accident and emergency department and ask them to contact our on-call ACHD team.

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