Adult congenital heart disease (ACHD) teams specialise in the diagnosis and management of adults (>16-18 years) with congenital cardiac lesions. If diagnosed and followed in childhood, teenage patients will be transitioned from the paediatric team to the adult team over a period of several years. Specialist transition teams facilitate developing independence in the young person learning to understand and manage their heart condition and health. A few individuals are newly diagnosed with congenital heart defects during adult life; these are often more minor conditions such as atrial septal defects.  As patients with ACHD are aging, care is becoming more complex. The leading causes of hospital admission are heart failure and arrhythmia. Centres are now developing specialist clinics in complex rhythm problems, device management, advanced heart failure management and ACHD transplantation to meet these needs. 

The ACHD team includes cardiologists, imaging specialists, interventionists, surgeons, clinical nurse specialists, intensive care doctors, anaesthetists and a whole range of other specialists with knowledge of congenital heart disease. The team cares for patients with all degrees of disease severity - although patients with simpler lesions may be cared for nearer to home by their local cardiologist who has an interest in ACHD. 

Specialist surgical ACHD centres (Level 1 centres) offer care for all aspects of adult congenital heart disease including congenital cardiac surgery and percutaneous intervention.  In some regions there are also non-surgical specialist cardiology ACHD centres (Level 2 centres). These offer many aspects of care but do not operate on patients or do percutaneous intervention.  The final type of ACHD centre is the local centre (Level 3). These local centres may host joint specialist clinics with the specialist centres and will care for patients with less complex disease.

NHS England produced a series of standards in 2016 which described the roles of the different centres and provided recommendations for different aspects of care such as psychology, pregnancy and palliative care.

https://www.england.nhs.uk/wp-content/uploads/2015/07/Item-4-CHD-Report.pdf

Anyone seeking additional information about Adult Congenital Heart Disease and related issues should get in touch with the BCCA ACHD representative via  bcca@bcs.com and they will be able to address a range of queries and signpost accordingly.