Inherited cardiac conditions patient information

Find out what to expect from your appointment with our inherited cardiac conditions service.

Before your appointment

You may be asked to come to hospital for additional tests before your clinic appointment including an echocardiogram (cardiac ultrasound), heart monitor (small portable machine), an exercise stress test (a treadmill machine with the ECG attached) or blood tests. The results of these tests will be available at your appointment.

You are welcome to call the clinical nurse specialist before your appointment to discuss what will happen or to pass on any information about your family’s health.

Family history

Please bring a detailed family history with you to your clinic appointment. This should include information about the health of your immediate and extended family. This information helps us to identify any previous family history which may be linked.

Please include information about sudden deaths (including cot death, car accidents, drowning), miscarriages and sudden infant or childhood deaths in your family history. If you have copies of post-mortem and/or coroners’ reports for any deceased relatives, please bring these with you. If your family member has been diagnosed with a condition please bring their information or clinic letters if they agree to share these with you. All information will be kept strictly confidential.

During your appointment

Appointments can take up to two and three hours, as some tests are required on the same day. The department often gets very busy and you may have to wait longer. Please be patient while we get all of your results together so that we can give you a complete assessment.

Genetic testing may be available for certain conditions and we will discuss this with you during your appointment. There are many implications to consider before having such a test and our team will support you through these decisions.

We have play specialists available in our family clinic to help make your visit as easy as possible – please let us know if you would like us to arrange this for you.

Cardiac screening tests

Everyone attending our clinic will have an ECG and echocardiogram:

An ECG records the electrical signal as it is conducted throughout the heart. An ECG is entirely safe, not painful and only takes a few minutes.

An echocardiogram is an ultrasound scan of the heart. A picture of the heart is produced from which an accurate assessment of the size and function of the heart can be made. The scan takes from 30 to 40 minutes and is not painful. 

Other tests that may be required include:

A 24/48-hour ECG recording (or Holter) is an ECG monitor that continuously records the heartbeat over 24 or 48 hours. You wear the monitor under your clothes and can continue with normal daily activities, including exercise.

An exercise test (ETT) assesses the rhythm and function of the heart at a faster rate, while on a treadmill. Blood pressure is monitored during the test. The test takes approximately 45 minutes and allows symptoms not obvious at rest to become apparent when the heart is working harder. We recommend you wear loose comfortable clothing and trainers for this test.

An MRI scan uses a magnetic field to take pictures of your heart. You will be required to lie on a bed within a tunnel. You will have a contrast injection to enable us to see your heart more clearly. An MRI scan usually lasts between 40 minutes to an hour.

After your appointment

If we diagnose an inherited heart condition, we will plan your care based on the results of your tests, your medical history and any effect the condition may have on your daily life. Many conditions will require regular monitoring and some may need treatment with medicines.

It can be difficult to come to terms with learning that you may have inherited a heart condition, or that other family members may have inherited a heart condition. Our nurse specialist specialises in the care of those with inherited conditions. We can also give information about charity organisations who offer support.

If no heart condition is found we may still keep you under review on an outpatient basis.

The team will send you and your GP a copy of your clinic letter.

When someone is diagnosed with an inherited cardiac condition it is advised that their first degree family members (parents, siblings, children) be assessed for the same condition. In order to help this process we will give you a letter to pass on to your relatives’ GPs.

Learn more about inherited heart conditions

 

Further information and support

If you have any questions or would like some more information, please contact our clinical nurse specialist on 07768 980 832. You can also email the service at imperial.icc@nhs.net.

Further online resources

• Sudden Adult Death Trust
• Cardiomyopathy Association
• Cardiac Risk in the Young
• Marfan syndrome
• Winston's Wish (for bereaved children)