The implementation of a cross-jurisdictional clinical network for congenital heart disease

Abstract

Introduction: Reorganisation of healthcare services into clinical networks has emerged in recent years as a mechanism to improve patient outcomes. In 2014, an International Working Group Report recommended the cessation of surgery in Northern Ireland (NI) for children with Congenital Heart Disease (CHD). This resulted in children from NI travelling to Great Britain (GB) to receive lifesaving surgical intervention, a significant risk to the child and at great cost to the health services and families. The group made a number of recommendations that included the creation of an All- Island CHD Network to enable the CHD services in NI and Republic of Ireland (ROI) collaborate with each other and work as a single Network to achieve essential national and international standards for CHD service provision. Objectives: To develop an All-Island Congenital Heart Disease (CHD) Network to provide high quality and timely access to specialist cardiac services for all children and young people on the island of Ireland. The core objectives of the All-Island Congenital Heart Disease (CHD) Network are: a) Appropriate CHD treatment for all children and young people on the island of Ireland as close to home as deemed appropriate. b) Timely access to quality treatment through the creation of a single waitlist that is aligned to international wait times. c) Provision of a safe and sustainable model that serves the needs of children and families into the future. d) Development of a research and innovation hub that delivers best practice solutions utilising a unique genotype on an all-island approach. Methods: A framework for an all island clinical network for congenital heart disease was developed to manage the all-island service delivery model. This built on existing services and drew them together in a network of care which is service user focused and locally responsive. The basic concepts of the network are of partnership, service integration and formal arrangements. The network consists of linked groups of health professionals and organisations from primary, secondary and tertiary care, working in a co-ordinated manner, to ensure equitable provision of high quality, clinically effective services. Results: To date, all NI Cardiac Catheterisations are carried out in ROI. In addition, all NI emergency and urgent surgical cases have been transferred to ROI, thereby eliminating the need for children and families to travel to Great Britain to have their surgery performed which resulted in a negative experience for families. During 2018, it is planned to commence the transfer of elective surgical patients to the ROI waiting list, with the plan that there will be an all-island surgical waiting list in 2019. The Network model of care includes the development of services in regional centres, implementation of an all island CHD research strategy and the development of a joint training and education programme for health care professionals. Conclusions: The all-island CHD Network is a linked group of health professionals and organisations from primary, secondary and tertiary care, working in a co-ordinated manner, to ensure equitable provision of high quality, clinically effective services to this complex cohort of patients.