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Adult Congenital Heart Disease (ACHD)

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


Congenital heart disease (CHD) is present from birth. Adult congenital heart disease (ACHD) is defined as people aged 16yrs and above living with a heart defect that they were born with. It is one of the most common birth defects in the UK, affecting around 8 in every 1,000 babies born. With advances in early diagnosis, paediatric cardiac surgery, medical and nursing care, over 90% of babies born with CHD survive to adulthood. There are now more adult patients with CHD than child patients and the number of adult patients continues to grow.

In 2011, the UK census estimated the population for the North West of England, North Wales and Isle of Man to approximately 7 million people. The estimated prevalence of adults living with CHD is thought to be more than 4 per 1000 adults, so the rough estimate of patients living with ACHD in the North West is in the region of 25,000 patients.

The number of patients with complex ACHD is increasing with 10% of the ACHD population now defined as being within this group. Congenital heart disease may remain undetected during childhood and therefore there is a group of patients who will present for the first time as an adult.

Most patients with ACHD will require easy access to expert advice and management throughout their life. They will require regular monitoring and further investigations. They may require further catheter procedures, cardiac surgery, electrical ablation and pacing procedures. An ever-increasing number of patients require advanced heart failure management, palliative care and sometimes transplantation.

Care for congenital patients

Changes have been made to the way care is delivered across the North West of England, North Wales and Isle of Man for people living with congenital heart disease.

The ACHD service is delivered by the Liverpool Partnership (Alder Hey, Royal Liverpool University Hospital, Liverpool Women’s hospital and Liverpool Heart and Chest Hospital). Liverpool Heart and Chest Hospital is where all adult congenital surgery and interventional procedures are performed. In-patient care is provided at the Liverpool Heart and Chest Hospital, the Royal Liverpool University Hospital, and Manchester Royal Infirmary. The ACHD team is based at Liverpool to ensure that consultant led care can be provided 24-7.

Outpatient services for patients with ACHD are also ran from Manchester Royal Infirmary, Blackpool Victoria Hospital and Wrexham Maelor Hospital. The ACHD service is part of the larger, all age, North West Congenital Cardiac Service which encompasses the care of paediatric cardiology patients as well.

All patients with ACHD, whether simple or more complex, benefit from expert care throughout their lives and our aim is to deliver this as close to home as possible. How often you will need to attend for your 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.