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ACHD (Adult Congenital Heart Disease Service) Clinic

Here you can find out about out Adult Congenital Heart Service, our Clinics, our Team, view the Support we offer and find Resources and useful links.

What is Congenital heart disease?

This is a general term for a range of birth defects that affect the normal working of the heart and great vessels.  Congenital means a condition that is present at birth.  Most people with congenital heart disease are well but will need lifelong specialist care.   This is to help identify and treat any problems that may arise.  The frequency of follow-up is determined by your condition and your symptoms.

What does ACHD stand for?

ACHD stands for Adult Congenital Heart Disease. What matters is that the ACHD Service is specifically for adults born with a congenital heart condition.  So this is your service and we want to provide the best care for YOU.

How can I be referred to the service?

  • If you are currently seen in a paediatric (children’s) cardiology service then you will have gradual transition to the adult service from age 14 and your appointments will be in the adult clinic from age 16/18. Your paediatric cardiologist will arrange this with us.
  • Some adults may be diagnosed for the first time with a heart problem that has been present since birth or have been lost to follow up despite a childhood operation or diagnosis. Your GP or cardiologist will then refer you to us.

If you are an adult born with a heart condition that required surgery in childhood and you are not currently under follow up with a cardiologist you are welcome to contact us
directly at ACHDnurses@nnuh.nhs.uk (Norfolk and Norwich University Hospitals NHS Foundation Trust » GUCH Team) and we will advise you.

What will happen during my clinic appointment?

  • We aim to complete investigations to support your review with your consultant. These may include an ECG, echocardiogram, cardiopulmonary exercise test (CPET). On the day or the weeks before.
  • You will see your consultant and ACHD nurse specialist.
  • The clinic aims to provide information and an explanation of your heart condition, what it means to you now, what it may mean in the future and if operations or other treatments may be needed.
  • Discussion and information is also provided in respect of pregnancy, contraception, inheritance/genetics, dentist visits (risks of heart infection called endocarditis) as well as psychological support for patients and their families.
  • Copies of all clinic letters are sent to your GP will be sent to you unless you prefer otherwise.
  • The ACHD Nurse Specialists are always available at a later date to answer any further questions you may have. You will be given their contact details.