General Congenital Heart disease Clinics
We run weekly general GUCH clinics with Dr Head or Dr Freeman with a GUCH Nurse Specialist, for diagnosis and follow-up of grownup congenital heart conditions. Patients attending an outpatient appointment may usually require one or more of the following tests on the day of clinic: ECG, Echocardiogram and Blood testing. These and other tests, that can be arranged to find out how the heart is doing, are explained on our Cardiac Investigations page.
The team also run a number of sub-specialist clinics:
Led by Dr Leisa Freeman, supported by a GUCH Nurse Specialist. Screening and monitoring clinic for people who have abnormality of their aorta (“aortopathy”) associated with conditions such as Marfan syndrome, Loeys Dietz syndrome, Ehlers Danlos (type IV only) and familial thoracic aortic aneurysm and dissection. Dr Freeman is also a medical advisor to the Marfan Patients Association. We took part in AIMS (Aortic Irbesartan Marfan Study), an important trial in Marfan Syndrome – which is no longer recruiting new patients.
A bimonthly, joint maternal cardiology clinic, led by Dr Leisa Freeman and Miss Fran Harlow or Mr Jonathan Lartey (both maternal medicine consultants) and supported by a GUCH Nurse Specialist. We care for women with congenital heart disease, but also acquired heart disease and rhythm disturbances that may be pre-existing or presenting for the first time in pregnancy. All pregnant women who attend this clinic will be discussed in the maternal medicine multidisciplinary meeting (MDT) to provide a birth plan and post-delivery plan. Specific fetal (baby in the womb) scans will be arranged since congenital heart conditions can be passed on from mum or dad to baby. Dr Cathy Head also provides a maternal cardiology service at Guys and St Thomas’ – so there is always an expert in maternal cardiology available.
Pulmonary Hypertension Clinic
The pulmonary hypertension service is run in conjunction with the Pulmonary Vascular Disease Unit (PVDU) at Papworth Hospital. This is a service for people who have been diagnosed with raised pulmonary artery pressures either as a result of congenital heart disease (PAH-CHD) or other conditions. Joint satellite clinics are held at NNUH at least 4 times per year, run by Dr Head, a consultant from the PVDU and both specialist nursing teams. In between patients may additionally be seen by Dr Head at NNUH, or attend Papworth if necessary.
GUCH Echocardiography Surveillance Clinic
If you are stable and well but need periodic assessment to exclude possible complications of your condition, we can review you in one of our monthly Echocardiogram and GUCH Nurse Specialist-led clinics. You will have an Echocardiogram to assess your heart and a consultation with the GUCH Nurse Specialist, to discuss any concerns and for health promotion. A report from your review will be sent to your ACHD/GUCH consultant.
NNUH Clinic Location
The above clinics are held in Outpatients East, Level 3, Norfolk and Norwich University Hospital, Colney Lane Norwich NR4 7UY.
Network ACHD/GUCH Clinics
James Paget University Hospital (JPUH)
Transition describes the process of preparing and moving on from children’s services to adult services, and beginning to take responsibility for your own health. As you become a young adult, an adult service is the best place for you to get the care that is right for your needs. Our goal is to makes sure you have all the information you need growing up as a young person with congenital heart disease. We give out a transition pack with lots of supplementary information. Our transition clinics all include a paediatric cardiologist, an adult congenital cardiologist and a nurse specialist. They are held as follows;
- NNUH: Dr Freeman and Dr Graham Derrick (Consultant paediatric cardiologist. Great Ormond Street Hospital)
- Ipswich hospital: Dr Head and one of our GUCH Nurse specialists, with Dr Sujeev Mathur, Consultant paediatric cardiologist, Guy’s and St Thomas’ Hospital
On occasion it may be appropriate to be seen in the Genetics clinic run by visiting Consultant, Dr Sarju Mehta, Clinical Geneticist at Cambridge University Hospitals Trust. The purpose of this review would be to determine why conditions occur and the likelihood of it happening again in your family. This includes screening and assessment for Marfan syndrome, Loeys Dietz syndrome, Noonan syndrome, Turner syndrome, Costello syndrome and 22q11deletion. As the understanding of the genetic cause of congenital heart disease increases, so the benefit of a review in the geneticist clinic increases. This is particularly true if there are a number of people within an extended family who have congenital heart conditions. Dr Freeman or Dr Head would make this referral.
Good dental hygiene and regular dental visits are important in preventing endocarditis (infection on the lining of the heart or heart valves). We can refer our GUCH patient to our specialist dentistry service, The Siskin Centre, if they have conditions that cannot be treated by their regular or community dentist and have complex medical needs. This is held within Norwich Community Hospital, Bowthorpe Road, Norwich, Norfolk, NR2 3TU.