The adult congenital heart disease (ACHD) unit at Royal Brompton
& Harefield NHS Foundation Trust is one of the largest specialised centres in the world.
In the Trust, we care for congenital heart disease patients from before birth and throughout adulthood. Having the ACHD unit facility means that the transition to adult care can be tailored to the individual young person and be a seamless, coordinated process.
The adult component of the service looks after all patients over the age of about 16 to 18 and provides care for a variety of congenital (present at birth) and inherited heart conditions. This also includes a large number of patients with pulmonary hypertension.
The unit offers all types of treatment, including:
- catheter lab treatment
- specialised drug therapies
- heart operations
- heart rhythm procedures
There is a dedicated transition service looking after teenagers and young adults. There is also a special pregnancy and heart disease service to look after pregnant women who have heart problems.
The ACHD unit provides a full range of inpatient and outpatient care. This includes:
a dedicated inpatient ward (Paul Wood ward)
specialist imaging (including echo, CT and cardiac magnetic resonance)
specialist clinics – eg Eisenmenger, advanced heart failure
a specialist pregnancy and contraception service
a catheter intervention programme
access to a full range of medical and surgical care, including transplantation
an electrophysiology (heart rhythm) service.
The outpatient clinic is where you will interact with the unit most frequently. On the day of your visit, before seeing the doctor, you may require tests such as an ECG, chest X-ray or echo scan.
At the clinic you will be seen by one of the specialist cardiology doctors or a clinical nurse specialist. If you wish to be seen by a specific person please let the clinic nurse know and we will do our best to arrange this.
If you are admitted to the ward you will be looked after by a named consultant and his or her team. The ward has daily consultant rounds, seven days a week, and access to the full range of supportive care.
Research and training
The unit has an active programme of research and training – both of which are vital to the future care of patients with congenital heart conditions.
You may be asked to participate in some of these studies. If so, you will be given information on the study, which you should consider carefully before agreeing to take part.
Looking after your health
The most important way of looking after your health is to remain under regular specialist follow-up. Some patients with simple congenital heart problems can be discharged from long-term care but all others will need to be seen regularly (although this may only be every couple of years). It is important you come to clinic even if you feel fit and healthy.
Exercise and activity
Keeping fit has lots of health benefits. Most patients with congenital heart disease should be exercising regularly. Patients with more severe heart disease might need to work to certain limits. Ask your doctor what kind of exercise is best for you – you might be surprised at how much you might be able to do.
Pregnancy and contraception
Pregnancy and contraception can be associated with extra risks when you have heart problems. Planning is key so please take the opportunity to discuss these issues with your heart specialist sooner rather than later.
The service has a special pregnancy and contraception clinic to allow you to discuss these issues at length.
If you become pregnant unexpectedly and have not had the chance to discuss the issues in advance, please let us know as soon as possible.
Like everyone else, it is important that you have a healthy diet, avoid smoking and other drugs, and drink alcohol in moderation.
Understanding your diagnosis
The more you understand about your heart condition the more able you are to be involved in any decisions that need to be discussed. You will also be able to explain your heart condition to other doctors who may not be heart specialists.
If your heart disease is complicated, ask the doctor to draw you a picture of your heart or to give you a 'heart passport' with all the important information.
It is the hospital policy to send you copies of all your correspondence and you should keep this in a file. Having a copy of your heart tracing (ECG) is also a good idea.
If you are admitted to a hospital somewhere else always remind staff there about your heart condition.
During working hours, the best point of contact at the Trust is the clinical nurse specialists. At night, contact should be made through the on-call adult cardiology registrar.
Many people with congenital heart disease find patient associations an important source of support and so you may want to consider joining one of these.
Endocarditis (an infection of the heart) is rare but can be serious. To avoid these infections you should:
look after your general health
look after your teeth and gums (infections can come from your mouth) – be sure to visit the dentist regularly
take antibiotics before dental work if you have a high-risk heart condition, such as a metal valve.
Other possible sources of infection are the skin (skin conditions, piercings, tattoos).
Other precautions might help to reduce risks so please discuss with your doctor. If you develop a fever or have signs of an infection ask the doctor to take a blood test (blood cultures) before you take antibiotics.