Skip to main content

Groundbreaking Project

Fife Launches Groundbreaking Congenital Heart Disease Project 

A groundbreaking project to identify patients with Adult Congenital Heart Disease (ACHD) in the community who are not currently under follow-up care has been launched by NHS Fife.

Congenital heart disease is a term for heart defects that develop before a baby is born, affecting just under 1% of all births. The condition can take different forms and can include issues with the heart valves or holes between the chambers of the heart.

Major advances in cardiology and cardiac surgery mean that the majority of infants with congenital heart disease now survive into adulthood, leading full and active lives. Many of these patients, however, require life-long follow-up care to monitor potential health problems arising from the heart defect.

Currently, there is no overarching database of ACHD patients in Scotland and it is recognised that throughout the UK there is a potentially sizeable number of adults who are not identified through hospital patient lists or do not receive follow-up care.

Whilst regular follow-up care is not always necessary, identifying patients and ensuring that their congenital heart disease diagnosis is recorded on the appropriate hospital database means that specialist advice can be given if a person is receiving hospital care for other reasons.

NHS Fife is now undertaking a detailed project to identify Fife ACHD patients who are not on current patient lists, ensuring that relevant and up-to-date information is recorded in their hospital records, with follow-up care offered where appropriate.

The first phase of the project will begin in liaison with Fife GPs and will involve a search of GP lists for patients who are coded as having an ACHD diagnosis. This information will then be compared to data on NHS Fife’s central cardiology database.

Patients who are coded as having an ACHD diagnosis and who do not appear on the central cardiology database will have their hospital and GP records reviewed, and where an ACHD diagnosis is confirmed the database will be updated and appropriate information filed in their hospital case notes.

The project will begin in Inverkeithing Medical Centre and is expected to be rolled out in GPs across Fife by the autumn.

NHS Fife Consultant Cardiologist Dr Lynn Miller is leading on the project, with support from Fife’s Heart Disease Managed Clinical Network (MCN).

Dr Miller said: “We know that many adults with congenital heart disease diagnosis are not under follow-up care.

“The reasons for this are wide-ranging and include disengagement with healthcare in adolescence and young adulthood, along with people moving away from childhood addresses for university or work and forgetting to communicate that change to the hospital. In addition, advances in investigation and treatment mean that some patients who had been formally discharged from follow-up care may now benefit from attendance at a regular clinic.

“Not all patients with congenital heart disease require to be seen by a specialist or general cardiologist on a routine basis, but there are thought to be a number of adults who would benefit from regular follow-up.

“Even when a regular review is not required, identifying these patients and ensuring the appropriate documentation of congenital heart disease is in local hospital case notes means that individualised advice can be given if a person is admitted to hospital with, for example, an acute illness or for maternity care.

“This is a significant project which will allow us to offer ongoing cardiac care to patients who would benefit from regular follow-up and, additionally, it is expected that the findings will help to inform future service planning for this particular patient population.” 

Dr Brian Montgomery, Medical Director for NHS Fife, said: “NHS Fife is pleased to be involved in this exciting initiative which will ensure that people with ACHD are identified and receive the correct care and follow-up to meet their individual needs.”

The second phase of the project is set to launch in Fife later this summer, in conjunction with patient support groups, and will raise general awareness of ACHD among the public.

« View all News
image description

Help & Advice

Information on managing your heart condition, including Physical, Emotional and Mental Health.

Read more
image description Make a Donation

Make a donation to The Somerville Foundation today and you will help us to continue to offer the valuable services we provide to those born with a heart condition.