The adult congenital heart disease team cares for patients who have been born with a heart defect who might need surgery shortly after birth.
We also treat patients who have acquired similar heart conditions, for example patients who have had an infection affecting the heart that has led to a deterioration of the heart’s structure.
Providing a wide range of inpatient and outpatient procedures, from diagnostic testing through to highly complex heart surgery.
The unit is the only centre to provide heart transplantation to this group of patients.
What services we provide
Your doctor may decide that investigations are necessary to determine the severity of your condition and the best way to proceed with management. The investigations include:
- Cardiac catheterisation
- CT scans
- MRI scans
- blood tests
If you are an inpatient, we will arrange for any required investigations to be done when you are in hospital.
If you are an outpatient, you will receive an appointment in the post.
Sometimes congenital heart patients will require intervention for their condition. These are procedures to treat or cure conditions and their side effects without the use of surgery.
If you need an intervention you will be asked to visit one of our wards. Depending on your individual case, you may stay only as a day case or you may need a longer stay with us.
Adults with congenital heart problems sometimes need cardiac surgery.
Our surgical team is available 24/7.
The centre is the only one in the UK to offer heart transplantation to this complex patient group.
If your consultant thinks you may be coming to a stage in your condition that a heart transplant could be required you may be asked to come for transplant assessment. For transplant assessment you will usually stay with us for around three nights.
During your stay you will have lots of tests done, once we have gathered all the information we need from you your case will be discussed amongst the adult congenital cardiologists and surgeons as well as the transplant coordinators.
If you have been asked to come for transplant assessment and you have any questions please get in touch with your cardiologist or specialist nurses.
Where is clinic?
All of our clinics are held in the main outpatients department at the Freeman Hospital.
You should report to the outpatients reception when you arrive and they will tell you which clinic waiting area to go to.
Why come to clinic?
Clinics are an important opportunity for us to see you and for you to see us.
If you have a follow up appointment we will be able to see how you’ve been getting on since you last saw us in clinic or since your last procedure, operation or hospital stay.
If you are a new patient it’s a great opportunity for us to meet and get to know you and tell you about the services we provide. Clinic also gives you the chance to ask any questions you have about your health and condition, or to let us know how you’re feeling.
Who will you see?
While you’re in clinic you will see clinic staff, nurse specialists, echo techs, a consultant or registrar, phlebotomist, ECG tech.
What will happen and how long can you expect to be at clinic?
Firstly, you will checked in and directed to the appropriate waiting area. From there the clinic staff will call you in to check your blood pressure, heart rate, oxygen levels, height and weight.
Lastly, you will visit these areas for further tests:
- Consultation with the doctor
You can expect to be in clinic for approximately 1.5 hours, sometimes you may be in longer.
Once a month we have a joint adult congenital heart disease and obstetrics clinic. If you are pregnant or are planning a pregnancy, you can see specialists from both cardiology and obstetrics.
Advice on family planning, contraception, pregnancy care and delivery planning is all available alongside consultation with your usual cardiologist. This is so we can ensure that you receive the best and most appropriate care and advice.
If you have any family planning or pregnancy questions contact the specialist nurses who will advise and book you into clinic.
In addition to this, we also have links with the Genetics service should you need any information or assistance from them.
Good dental health is important for all patients who have heart problems. A dental co-ordinator is available in all our clinics.
The specialist nursing team is an integral part of our service. Our nurses provide support and advice to patients throughout their whole journey with us – this could be information as basic as parking arrangements and as complex as heart transplantations.
Monitoring patients is a key part of our work. We have monthly meetings where we discuss results and problems occurring in the previous month.
We also submit surgical and catheter intervention results to the national database: the results are available on the The National Congenital Heart Disease Audit Website
We need your help
We want you to have the very best experience when you change from paediatric congenital heart services to adult services and our transformation project is in full swing. Here is a chance to have your say: