Grown-up/Adult Congenital Heart Service (GUCH/ACHD)

Here you can find out about out Grown up/Adult Congenital Heart Service, our Clinics, our Team, view the Support we offer and visit our Resources for 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 do GUCH and ACHD stand for?

GUCH stands for Grown-up Congenital Heart Disease and ACHD – Adult Congenital Heart Disease, so they mean the same thing.  Both terms are used interchangeably and whatever term you prefer is fine by us. What matters is that the GUCH/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 and we will advise you. (nnu-tr.guch@nhs.net)

What will happen during my clinic appointment?

  • We aim to provide a one stop clinic so you can have the majority of investigations required at the same visit. These may include an ECG, echocardiogram and exercise ECG or six minute walk. You should therefore allow around two hours for your clinic appointment.
  • You will see your consultant and GUCH 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 GUCH Nurse Specialists are always available at a later date to answer any further questions you may have.