Adult Congenital Heart Disease

The Sheffield Adult Congenital Heart Disease Clinic is a collaborative service provided by Sheffield Teaching Hospitals Foundation Trust and the Congenital Heart Centre at Leeds General Infirmary. Dr Laurence O’Toole leads the service locally and Drs Kate English and James Oliver visit from the Leeds Unit.

The service is part of the Yorkshire Adult Congenital Heart Disease Network. The clinic runs according to the Department of Health 2006 guidelines on ACHD services and we are contributing to the ongoing NHS England review of Congenital Heart Services. The service is supported by dedicated administration staff (Mrs Rachel Bramhall and Mrs Sandra Hodgkins).

The ACHD clinic runs once or twice per month at the Chesterman Unit, Northern General Hospital. There are two Consultant Cardiologists, a visiting specialist ACHD nurse and an echocardiographer trained in congenital heart disease in attendance. There is a lunchtime multidisciplinary meeting involving the Cardiac Radiologists. The collaborative clinic has been running since 2005. Currently, there are over 1000 patients under active review.

Congenital heart disease affects about 1% of all babies. Twenty years ago only 15% of babies with the most complex congenital heart disease survived to the age of 18 years but advances in children’s heart surgery mean that well over 90% now survive into adulthood. This had driven the need for coordinated expert long term care for this growing population of adult patients.

The health concerns of patients with adult congenital heart disease include:

  • Patients with Congenital Heart Disease whose childhood corrections require ongoing surveillance and potential further revision
  • Patients with newly recognized congenital heart defects or those who were not treated in childhood
  • Patients with new rhythm disturbances and/or those who might need pacemakers
  • Patients with congenital heart problems considering pregnancy
  • Patients with exercise and training issues
  • Patients with adult cardiovascular or other age-related health concerns

Many people born with heart disease, even people who have had very major surgery as a child, have been lost to cardiac follow-up often as they entered adult life. A significant number have residual heart problems, and, sometimes, an uncertain prognosis. The ACHD clinic offers cardiac assessment and long term surveillance to these people. There are numerous general health issues which could affect ACHD patients such as suitability for pregnancy, genetic transmission, employment, insurance and the prevention of endocarditis.

We are keen to hear of any potentially suitable patients. An overview of ACHD-related conditions is given below. In general, we do not assess patients with Marfan syndrome, hypertrophic cardiomyopathy or other conditions classified as within the remit of the inherited cardiac conditions service. We do assess patients with genetic conditions that have a high rate of congenital heart and blood vessel defects (e.g. Trisomy 21, Noonan and Turner syndrome patients).

If you have a patient aged 16 years or above in South Yorkshire with potential congenital heart disease whom you feel may benefit from reassessment then please contact:

Dr Laurence O’Toole.
c/o Adult Congenital Heart Secretary
Chesterman Wing
Northern General Hospital
Herries Rd
Sheffield S5 7AU

Clinic days

Monthly clinics on Monday & Thursdays – Chesterman Wing, Northern General Hospital

Details on how to find us and other transport information can be found here

ACHD related conditions

Anomalous pulmonary venous drainage (partial or total)
Aortic regurgitation
Aorto-left ventricular fistulae
Atrial septal defect (primum & secundum)
Atrioventricular canal defects (partial or complete)
Coarctation of the aorta
Conduits, valved or nonvalved
Congenital aortic valve disease
Congenital mitral valve disease (including parachute valve)
Congenitally Corrected Transposition of the Great Arteries (ccTGA)
Cyanotic congenital heart disease
Double-outlet ventricle
Ebstein's Anomaly
Eisenmenger syndrome
Fontan procedures
Infundibular right ventricular outflow obstruction
Mitral Atresia
Abnormalities of atrioventricular or ventriculoarterial connection (i.e. criss-cross heart, isomerism, heterotaxy syndromes)
Patent ductus arteriosus
Pulmonary Atresia
Pulmonary valve regurgitation
Pulmonary valve stenosis
Right ventricular outflow tract obstruction
Single Ventricle Physiology (also called double inlet or outlet, common or primitive)
Sinus of Valsalva fistula/aneurysm
Sinus venosus atrial septal defect
Subvalvar or supravalvar aortic stenosis (excluding HOCM - hypertrophic obstructive cardiomyopathy)
Tetralogy of Fallot
Transposition of the Great Arteries
Tricuspid Atresia Truncus arteriosus & Hemitruncus
Ventricular septal defect


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