National Strategic Action Plan for Childhood Heart Disease
The National Strategic Action Plan for Childhood Heart Disease* (the Action Plan) aims to reduce the impact of CoHD in Australia. It outlines priority areas and actions to help people with CoHD live longer, healthier and more productive lives.
*Childhood Heart Disease (CHD) is a term used in the Action Plan that covers both congenital heart disease and heart conditions that develop in childhood (acquired). It can be used interchangeably with CoHD.
The Action Plan
The Action Plan provides a guide improvements for the care of thousands of patients, and save lives. It coordinates policy action for tackling CoHD across the nation and drives collaboration in management, care and support, research and community awareness. The Action Plan also focuses on three priority populations that are disproportionally affected by CoHD — Aboriginal and Torres Strait Islander people, adolescents and young adults who are moving from paediatric to adult cardiac health services and people living in remote, or rural and regional locations.
In 2020, the Commonwealth Department of Health awarded HeartKids with $6 million over five years to implement some of the recommendations from the Action Plan. HeartKids’ role is to facilitate the development of standards of care for people impacted by childhood heart disease and increase the availability of quality, relevant information and education resources about CoHD.
The Australian National Standards of Care for Childhood-onset Heart Disease
The Australian National Standards of Care for Childhood-onset Heart Disease. The Standards of Care will provide the first national standards and a framework to ensure all Australian patients and families affected by CoHD receive excellence in comprehensive cardiac care. The second draft is now available for public consultation until the end of December 2022.
Health Professional Education Portal
The CoHD Health Professional Education Platform is a digital, self-paced suite of education modules, co-designed with a range of clinical subject matter experts, for health professionals who care for people impacted by CoHD, including: cardiac specialists, primary care, allied health, mental health and other health care professionals.
Education and Information Resources
A suite of educational and information resources for parents and carers, teens, adults and those who support them in a mix of videos, factsheets, podcasts, easy reader content, and resources designed specifically for key priority populations like those from a non English speaking background and Aboriginal and Torres Strait Islander People
Teen Camps
HeartKids Teen Camps provide an opportunity for young people aged between 13 -17 years with a heart condition to connect with others experiencing a similar journey, share stories and develop new friendships. Camp activities encourage young people to increase their level of independence, build health care skills, and develop self-confidence. For many camps can be life changing events.
UpBeat Teen App
UpBeat is an app designed for teen and young adult people with CoHD who are beginning to independently manage their health care and life . It is a tool that helps users easily navigate the transition fro the paediatric to adult hospital process and the self-manage their condition, while connecting them to relevant support services and resources. UpBeat is available for download for free in the Apple App Store and Google Play.
Research
National Strategic Action Plan for Childhood Heart Disease