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The Australian National Standards of Care for Childhood-onset Heart Disease are now available for public consultation

Work on the Australian National Standards of Care for Childhood-onset Heart Disease (CoHD Standards) began in 2020 and is the first prioritised key focus area in the National Strategic Action Plan for Childhood Heart Disease launched by Minister Greg Hunt at Parliament House, Canberra (Feb 2019). This was the culmination of a 10-year process of joint professional, family engagement and advocacy facilitated through HeartKids Ltd. This project offers a unique opportunity to secure continuing and enhanced excellence in care delivery for CoHD in Australia.

Childhood-onset Heart Disease includes a range of heart abnormalities manifesting before birth, after birth and throughout childhood. These conditions are a mix of congenital heart disease (mainly structural abnormalities of the heart present from birth), genetic heart abnormalities evident in childhood, abnormalities of heart rhythm, and abnormalities affecting the heart and acquired in childhood.  The identification of these conditions as ”childhood-onset” reflects the lifelong journey for patients, and the important role of adult congenital heart disease cardiologists in following and supporting the health and medical needs of patients with congenital heart disease.

Development of the CoHD Standards has been led by a Steering Committee with representatives from cardiology, cardiac surgery, general  paediatrics, adult congenital heart disease (ACHD), nursing, psychology, and importantly parents and patients. Content has been drafted by twelve working groups incorporating over 130 memberships from across Australia, including a range of interdisciplinary health experts and patients and families of diverse cultural backgrounds and geographical locations.

Public Consultation on the Standards of Care

Stakeholder input and public consultation is now being sought for this first draft document, and will remain open until the 23rd of December 2021. To create the most collaborative, effective and complete document, we encourage feedback from all who might be interested.

About the CoHD Standards

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The Australian National Standards of Care for Childhood-onset Heart Disease Steering Committee acknowledges the Traditional Owners across the land and pays respects to Elders past, present and emerging. We recognise their strength, resilience and capacity and acknowledge their connection to culture, Country, and sea.