Federal Health Minister launches new Standards of Care for childhood-onset heart disease
For the first time, Australian families affected by childhood-onset heart disease (CoHD) will have a specific framework to guide their medical journey following the release of universal standards of care in Canberra today. Federal Health Minster Mark Butler joined HeartKids in launching the Standards of Care, which will provide clarity, clinical direction and wholistic support to the hundreds of thousands of Australian families living with CoHD. CoHD is the biggest killer of Australian infants in the first year of life, and on average, a child is born with the condition every three hours.
“These standards of care are a credit to the team of more than 130 who have painstakingly worked over the past four years to craft a framework that will have practical benefits for the CoHD community,” Minister Butler said.
The CoHD National Standards stipulate the benchmark in high-standard healthcare for all health professionals involved in treating the disease, and will help patients, families, and carers to know more about what to expect when it comes to their journey. The Standards of Care have been developed with funding from the Federal Government via the National Plan for Childhood Heart Disease.
HeartKids CEO Lesley Jordan said the CoHD Standards are centred around the principle of living well, and takes a whole of life approach that reflects the reality that many people and their families manage this condition their entire lives.
“As every family who has faced a health challenge knows, having clarity around the best standards of care and what to expect, takes a huge amount of stress out of the situation.” Ms. Jordan said.
“These Standards of Care contain best practice frameworks around twelve priority areas including mental health, transition to adult care, CoHD care in regional and remote communities, and priority populations. They are an extremely important resource for all families living with this disease. They are an invaluable resource, and we are proud to see them released today.”
HeartKids is the only not-for-profit organisation nationally dedicated to supporting and advocating for children, teens, and adults impacted by CoHD, which remains one of the largest causes of infant death in Australia. More than 80,000 Australians are affected by CoHD.
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