We need a referral from a general practitioner (GP), paediatrician (specialist children’s doctor) or local cardiologist for children to be screened. Some of the team are also based at the Heart Hospital, which specialises in inherited cardiovascular disease in adults.
When children reach the age of 16 to 18 years, their care will be transferred to an adult service, either to the Heart Hospital or their local cardiology team. The clinical nurse specialists are closely involved in the transition of your child’s care from one team to another.
How to get referred
The Inherited Cardiovascular Diseases Unit accepts referrals from GPs, paediatricians and paediatric or adult cardiologists, for:
Confirmed or suspected inherited cardiac conditions
Family history of cardiac conditions
Family history of sudden cardiac death (unexplained or secondary to known inherited cardiac conditions)
Cardiac screening of individuals with inborn errors of metabolism, neuromuscular disorders or syndromes associated with cardiomayopathy or arrhythmia.
For more information, please see the hospital's general guide on how to get referred.
How often do we screen children?
We screen children from birth. Thereafter we screen children and young people at regular intervals. Screening may continue into adulthood, although not so often.The team will discuss the frequency of your child’s screening with you at the time of your clinic appointment.
What if my child develops worrying symptoms during screening intervals?
If you are worried about your child please contact the team who will advise you and decide if it is necessary to bring your appointment forward or arrange further tests.
What do I tell my child’s GP/local healthcare team or school about my child being screened or diagnosis?
The team will send you and your GP and local teams a copy of your clinic letter. The clinical nurse specialists are also happy to liaise with local healthcare teams and nurseries/schools providing further information and support. We work closely with the Cardiomyopathy Association, SADS UK, CRY and other support agencies.
What genetic screening is available for children and families?
We are still learning about the disease process and inheritance pattern. Genetic testing may be available in some cases so please discuss this with us. We work closely with genetic specialists and if a family decides to have genetic screening we liaise and work closely with a genetic counsellor to discuss the implications of a genetic test.
We know that not all those who carry the gene will develop the condition. This means that some people may have no symptoms or even no features of the disease but may still carry the abnormal gene(s) that determine the disease. There are many implications to consider before having such a test and the genetic counsellors and other members of the team will support you through these decisions.