Congenital heart disease

For healthcare professionals

The adult congenital heart disease (ACHD) unit at Royal Brompton & Harefield NHS Foundation Trust is one of the first and largest facilities of its kind in Europe.

The programme encompasses a national and international tertiary referral centre providing highly specialised care for adolescents and adults with congenital heart disease.

Facilities

The ACHD unit has its own designated inpatient facility within Paul Wood ward with specific provision for adolescents and young adults. This is in the context of a wider cardiology and cardiothoracic facility with state-of-the-art catheter laboratories, non-invasive investigative procedures and highly-specialised support services. Specialist echocardiography, cardiac physiology, electrophysiology, cardiac CT and cardiac MRI are all available on site.

The centre provides sub-specialist outpatient and inpatient care for ACHD intervention, pregnancy, Marfan syndrome, transitional care and pulmonary arterial hypertension. Obstetric and gyncaecology care for patients with congenital heart disease is provided jointly with the high-risk maternal team from Chelsea & Westminster Hospital.

The centre is at the forefront of ACHD intervention with an extensive catheter lab programme including percutaneous pulmonary and aortic valve replacement.

The ACHD unit serves as a major research facility for congenital heart disease and cardiac surgery. The unit provides national and international specialised training for cardiologists, cardiothoracic surgeons and allied disciplines. Specialist international clinical fellows are an integral part of the unit and contribute to the worldwide reputation of the organisation.

National and international meetings in the field – coordinated from the Brompton and the National Heart & Lung Institute - are an integral part of the programme's academic curriculum.

The team

The team includes seven full-time specialist consultants (five ACHD cardiologists and two pulmonary arterial hypertension intensivists), a consultant in cardiac ACHD MRI, a consultant in echocardiography, three full-time congenital cardiac surgeons and four clinical nurse specialists.

This is in addition to an extended group of other specialist imagers, anaesthetists, surgeons and electrophysiologists. There are close clinical and academic ties with the paediatric cardiology department, providing seamless care from childhood to adulthood.

Professor Michael A Gatzoulis (academic lead)

Dr Lorna Swan (clinical lead)

Dr Kostos Dimopoulos

Dr Anselm Uebing

Dr Gerhard-Paul Diller

Dr John Wort (pulmonary arterial hypertension)

Dr Phil Marino

Dr Philip Kilner (consultant in cardiac ACHD MRI)

Dr Wei Li (consultant in echocardiography)

Mr Darryl F Shore (cardiac surgical lead)

Mr B Sethia (consultant cardiac surgeon)

Mr Hideki Uemura (consultant cardiac surgeon)

Clinical nurse specialists

Carl Harries (pulmonary arterial hypertension)

Lisa Parfitt (pulmonary arterial hypertension)

Lesley Jones (ACHD and pregnancy)

Lynda Shaughnessy (transition from paediatrics to ACHD)

Patient education and empowerment are important components of the ACHD service. The clinical nurse practitioners co-ordinate education and patient involvement. Advice and education covers lifestyle issues such as contraception, insurance, employment and sport. Patients and their families also find additional support from patient groups such as the GUCH Patients' Association.

Education

Members of the Royal Brompton ACHD Centre are sought-after conference speakers and contributors to the major literature in this emerging cardiovascular field. The team strives to share its learning with colleagues worldwide and has produced two highly regarded textbooks, Diagnosis and Management of Adult Congenital Heart Disease (Elsevier 2003) and Adult Congenital Heart Disease: A Practical Guide (BMJ/Blackwell Publishing 2005).

History

The unit was established in 1975 by Professor Somerville, one of the founders of the field of adult congenital heart disease (ACHD), at the National Heart Hospital. In 1989 the unit (also known as the “Grown-Up Congenital Heart” or GUCH Unit) relocated to the Royal Brompton Hospital. Since then the unit has gone from strength to strength.

In 2003 the unit was designated as a national centre for adults with pulmonary arterial hypertension. In 2006 the ACHD clinic at Harefield Hospital was integrated into the overall service - providing adult follow-up for many of the patients operated on by Sir Magdi Yacoub in childhood.