Your treatment

In this section you can find some practical information about your first hospital visit, screening and genetic tests. We will add information about treatment options shortly.

What happens after I have been referred?
A nurse specialist will contact you before your outpatient appointment to explain what will happen on the day and the tests you may need. They will also ask you for more information about your family. This helps us to gain valuable information regarding your family history or condition. This is also an opportunity for you to ask questions. Our lead nurse specialist for inherited cardiac conditions is Andrea Grieger, who can be contacted on 07768 980832.

Father and child with play specialistHow long will my first hospital visit take?
You may be with us for at least two to three hours on your appointment day. Please be patient while we get all of your results together so that we can give you a complete assessment. Sometimes this involves coordinating complex test results.

There are play areas within the paediatric department for those families attending the family clinic. We also have play specialists available in our family clinic to help make your visit as trouble-free as possible and to help explain the visit to your child.
 
What about family screening?
When a child or adult is diagnosed with an inherited cardiac condition it is advised that their family members 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. The letter will explain the diagnosis and recommend that your relative be referred to a specialist unit such as ours for a detailed cardiac screening. The tests involved for this will vary according to the particular condition. However, in most cases each family member will have an electrocardiogram (ECG) and ultrasound scan (echocardiogram) as part of their assessment.

Our screening services
We are able to provide a screening service for families of affected individuals. Families can be seen together, easing the burden for the family in terms of travel and communication difficulties.

If you are worried about yourself or your child between visits please contact the team who will advise you and decide if it is necessary to bring your appointment forward or arrange further tests.

Young boy with doctorWe can screen children from the age of one year, but we usually start the process around school age (five years onwards). Thereafter we screen every year until they have finished their growth period (usually around the age of 20).

Screening may continue throughout adulthood, but usually on an infrequent basis (every three to five years). The team will discuss the frequency of your or your child’s screening with you at the time of your clinic appointment.

What genetic tests will be performed?
Genetic testing is usually only available on a research basis in the UK. However, in some conditions (such as long QT syndrome) clinical genetic testing is routinely available.

In order to help you understand the implications of a genetic test result for both you and your family, we work closely with a consultant geneticist, Dr Kay MacDermot. During your initial consultation you will be given further information on the genetic test so that you are able to give fully informed consent to testing for either yourself or your child.

There are many implications to consider before having such a test and Dr MacDermot and other members of the team will support you through these decisions.