The role of specialist nurses in cardiac genetics - the Victorian experience: supporting partnerships in care

Abstract

Objective: In Victoria, Australia, a unique referral process exists for families who require investigation for possible inherited cardiac disease. This is spearheaded by a team of specialist nurses located at the Royal Children’s Hospital Melbourne (RCH), the Royal Melbourne Hospital (RMH) and the Victorian Institute of Forensic Medicine (VIFM), who ensure that all potentially at-risk families are offered the opportunity for clinical assessment and consultation. Setting: In Victoria, approximately 5,500 deaths are reported to the Coroner each year. Where there is a suspicion of a causative heritable cardiac condition, the surviving relatives are offered referral to a tertiary centre for assessment and screening. Subjects: A specialist nurse employed by the VIFM is the focal point for forensic pathologists to flag families requiring referral. Concurrently, specialist nurses within the cardiac genetic services of RMH and RCH accept, review, triage and action these referrals. All three services work closely to create a seamless model of care, which is age appropriate and provides ease and equity of access to consistent care. Primary argument: The nurse specialists are a critical part of the multidisciplinary team, providing the first entry point into the hospital system. Their background experience encompasses intensive care and cardiology nursing. This is essential to the provision of professional and empathetic care in which families can approach the difficult issues surrounding post mortem consideration of a diagnosis. Conclusion: The Victorian nurse led system is an effective model, which could be trialled in other jurisdictions, and other disorders, where multidisciplinary care is required.