Inherited cardiovascular conditions (ICC) is the term given to describe a range of heart conditions which can be passed through families.
We run a comprehensive ICC service which cares for everyone, from children in the womb, through to adulthood.
Coming for an appointment
There are a number of reasons why you could have been referred to the inherited cardiovascular conditions (ICC) clinic at Royal Brompton Hospital. It could be because:
- a family member has been diagnosed with an inherited heart condition or has died suddenly from a suspected, or confirmed, heart condition which may be inherited
- you have experienced symptoms which need further investigation
It may be neither of these reasons, but we may want to take a closer look. Whatever we do, we will discuss it with you at every step. If a heart condition is found, we work towards reducing any further risks and alleviating any symptoms you may be experiencing. Part of our job also involves reassuring other members of your family who are not immediately at risk. If you would like to discuss what your results might mean ahead of your appointment, please contact the clinical nurse specialist team (CNS).
Family history
We know how hard it can be to talk about the sudden death of a family member, but in order to find out if anyone else is at risk we may need to ask you about the events surrounding their death. Sometimes, this may not be possible. We recognise that people may not want to have these discussions in front of other family members, so make every effort to work around this. If this is the case, please let us know, either on your arrival or by contacting the CNS before your appointment.
Your medical details will remain confidential at all times, unless you tell us that you are happy to share medical information for the benefit of your relatives.
What to bring with you
If you are invited to an appointment, we would like you to bring:
- an up-to-date list of all your medication, including doses
- any medication that you may need during the day
- a pair of trainers if you are having an exercise test
- any additional information you have learned about your family history
- things to do - there will be time between tests and meetings, so bringing a book (and toys, etc for children you may have brought with you) is a good idea
Where to go for your appointment
When you arrive at Royal Brompton Hospital, please:
- enter via the Chelsea Wing entrance on Dovehouse Street
- follow the signs for ECHO/non-invasive department, on level 3
Once there, please report to the ECHO/non-invasive reception desk
If you need wheelchair access, please:
- enter via the Sydney wing entrance on Sydney Street
- follow signs to Chelsea Wing and take the lifts in Sydney Wing to level 3
From there, you can use the link bridge. If you require any further help, please ask at Sydney Street reception.
Appointment queries and questions
Contact the:
- ICC scheduler: 0207 352 8121 ext 82832 about outpatient or clinic appointments at Royal Brompton
- clinical nurse specialists (CNS): 0207 352 8121 ext 82205 or 88823 about any concerns or queries
- appointments department: 0207 351 8121 ext 88011 about follow-up appointments
If we can’t take your call, please leave a message and a nurse specialist will call you back.
The tests
You will have several cardiac tests during your appointment. We try to book arrange these for the morning, but sometimes, they may have to take place in the early afternoon. You should get most of your test results back in the afternoon, during your consultation. You may not need all of the following tests and they will be arranged depending on your need:
- Electrocardiogram (ECG)
Also known as a 24-hour ECG or Holter monitor, this test can tell us if there are any problems with your heart’s rhythm - Echocardiogram (echo)
an ultrascound scan which allows us to see the structure of your eart and how well it pumps blood around the body - Exercise stress test
This monitors your symptoms, heart rhythm and blood pressure during exercise - Genetic testing
a genetic test can help us find out if you have an inherited heart condition - ICC imaging test
This test creates a visual image of the inside of your body so we can check the function of certain organs - Blood tests
these are tests for genetic or routine testing
Test outcomes
An inherited heart condition is found
If we find that you have an inherited heart condition, the next step involves agreeing on a treatment plan. Your treatment will be based on your test results, medical history and the effect the inherited condition has on your daily life. Treatment may include medication or lifestyle changes, such as doing gentle rather than competitive exercise.
Your diagnosis also means that we can screen other relatives, such as children, brothers and sisters. We understand that the discovery of this condition be emotionally difficult for you and your family, but we are also here to discuss your concerns and anxieties. If it is helpful, we can also refer you to our clinical psychologist for more support.
No inherited heart condition is found
If your tests show that you do not have an inherited heart condition, we may still continue to see you until we are sure, particularly with children.
Various changes occur in the electrical system of children’s hearts as they grow, so we continue to monitor these changes until we are sure there is no risk from an inherited condition.
Research
Research into cardiovascular (heart) and respiratory (lung) medicine is central to our mission, and as a result, we have an international research reputation. If you would like be involved, taking part in our research trials would really help us.
During your visit, you may be approached by a member of the research team for a particular study. They will explain the research study and, if you are interested, provide information to help you decide if you want to take part. If you decide not to take part, your clinical care will not be affected in any way.
ICC and parents
If you are a parent:
- with a pre-existing heart condition
- who has a history of ICC within their family
- whose child has been diagnosed with a heart condition, before birth, or after
Our ICC services focus on the care of both parents and children. These include:
Fetal cardiology
Find out more about our team of specialists who care for babies with heart conditions, before and after birth
Paediatric psychology for ICCs
We have a dedicated clinical psychologist who can assess and offer support to children with inherited heart conditions, their family and carers
Pregnancy and heart disease centre
This service supports and cares for pregnant women with pre-existing cardiac conditions or those whose conditions arise during pregnancy
ICC Contact sheet (pdf, 2.4MB)