Although national guidelines in the UK recommend that all patients with significant adult congenital heart disorders (ACHD)are followed within a specialised adult congenital or grown up congenital heart(GUCH) service, there has been no evidence base to support particular intervals for review nor the investigations that should be done at each visit.
Patients followed at the adult congenital service based in Edinburgh, either within Edinburgh or at outreach clinics serviced from Edinburgh, are seen less frequently than in larger centres. The main reason is lack of resource, particularly clinic room and technical support availability and lack of consultant time.
Despite this, there have been no emergency admissions provoked by the review interval and only 2 patients in the past 5 years have had an unexpected deterioration in their condition, requiring intervention within 3 months of their latest attendance.
The recruitment of DGH cardiologists who were prepared to develop an interest in ACHD has permitted an increase in the number of clinic slots from 300 to 480 with minimal loss of quality as all provide 12 lead ECG and TTE availability but not necessarily exercise testing at the same visit.
This is still insufficient to permit the frequency of review desired by the consultants in charge. Plans to accommodate this in future include written information to patients indicatign when earlier review should be sought, nurse directed telephone consultations to confirm earlier review is not required and interim attendance for investigations outwith regular outpatient attendances.