Congenital heart disease

If you are an existing ACHD patient, find out more about recent changes

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 go to 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. 

The ACHD team

Our team includes:

  • 4 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
  • 5 full-time congenital cardiac surgeons, including neonatal, paediatric, and ACHD surgeons
  • 3 clinical nurse specialists (CNS, in ACHD, one CNS in cardiac obsterics, one CNS in aortopathy, 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 (arrythmias). 

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

Professor Michael A Gatzoulis (clinical and academic lead, ACHD)
Dr Konstantinos (Kostos) Dimopoulos (ACHD and pulmonary hypertension)
Dr Isma Rafiq (ACHD and pregnancy)
Dr Aleksander Kempny (ACHD, pulmonary hypertension and catheter intervention)
Dr Harith Alam (ACHD, pregnancy and ACHD networks)
Dr Fernando Riesgo (heart failure and transplantation)
Dr Wei Li (consultant and lead in ACHD echocardiography)
Dr Sonya Babu-Narayan (consultant and academic lead in ACHD MRI)
Dr Ana Pires (locum, ACHD, PH, and pregnancy)
Dr Justyna Rybicka (locum, ACHD, and heart failure)

Pulmonary hypertension (PH) consultant team

Dr John Wort (lead pulmonary hypertension)
Professor Michael A Gatzoulis (clinical and academic lead, ACHD)
Dr Konstantinos (Kostos) Dimopoulos (ACHD and pulmonary hypertension)
Dr Colm McCabe (joint lead for non-invasive exercise testing, and PH)
Dr Laura Price (pulmonary hypertension)
Dr Wei Li (consultant and lead in ACHD echocardiography)
Dr Ana Pires (locum, ACHD, PH, and pregnancy)

ACHD surgical team 

Mr Darryl F Shore (consultant, cardiac surgery)
Mr Andreas Hoschtitzky (consultant, cardiac surgery)

ACHD cardiac catheter intervention team

Professor Alain Fraisse
Dr Michael Rigby
Dr Aleksander Kempny (ACHD, pulmonary hypertension and catheter intervention)

Clinical nurse specialist (CNS) team

  • Lynda Shaughnessy (senior nurse and network lead for ACHD)
  • Clare Finlay (ACHD)
  • Ella McDonnell
  • Suad Warsama (pregnancy)
  • Fortunate Rusike (aortopathy)

PH clinical nurse specialist (CNS) team

  • Carl Harries (lead CNS for PH)
  • Joana Barbosa
  • Stuart Craig

CHD transition clinical nurse specialist (CNS) team

  • Virginia Castro Meira (lead nurse for fetal, paediatric and transition CNS teams)
  • Loredana Haidu
  • Adrienne Cottam

Patient education

Patient education and empowerment are important components of the ACHD service. The clinical nurse practitioners coordinate education and patient involvement. 

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 . If you are are over 12 and want to find out more about transitioning to the adult ward, find out more

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 

Information for existing patients

If you are already a patient with us, you will be aware that two of the unit’s doctors, Lorna Swan and Rafael Alonso-Gonzalez, left in 2018 to take up positions at the University of Toronto, Canada. We understand that this may have been an unsettling time for many but we continue to provide the high level of care you deserve as our  ACHD patient.

As a result, we have had to make some changes to clinic arrangements. If you have any concerns about this or any other queries, please contact us on: 0207 351 8764.

These changes do not apply to the rest of ACHD and/or PAH clinics. In the meantime, we do anticipate further changes and improvements throughout 2019 as we recruit new consultants and clinical nurse specialists (CNS), to support the service.

We remain committed to providing the best care for you and will keep you up-do-date with any further changes.

Clinic information

Our ACHD clinics now run:

Mondays

  • Dr Swan's clinic on Monday morning at Royal Brompton Hospital is now covered by Dr Isma Rafiq
  • Dr Alonso's Monday afternoon clinics at Royal Brompton and Harefield hospitals, are now covered by Dr Harith Alam

Wednesday

Dr Uebing's Wednesday afternoon clinic at Royal Brompton Hospital, is now covered by Dr Aleksander Kempny and Dr Ana Barradas-Pires

Thursday

Dr Alonso's Thursday afternoon clinic at Harefield Hospital is temporarily covered by Dr Justyna Rybicka. 

Friday

Professor Michael Gatzoulis still runs his Friday morning clinic at Royal Brompton Hospital but the clinic has been split in two. The other clinic is now run by Professor Gatzoulis's consultant colleague, Dr Ana Pires. 

All other ACHD clinics will continue as they are. 

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 by emailing achd@rbht.nhs.uk or calling 0207 351 8764.

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. 

Contact us

Adult congenital heart disease centre and centre for pulmonary arterial hypertension
Royal Brompton and Harefield hospitals, Sydney Street, London, SW3 6NP

Write to us: Royal Brompton, Sydney Street, London SW3 6NP
Telephone: 0207 351 8764
PAH office: 020 7351 8362

Out of hours emergency: call us direct on 020 7352 8121 and ask for the on-call ACHD team, or visit your local accident and emergency department and ask them to liaise with our on-call ACHD team.

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