Advocacy

In the last 20 years great strides have been made in researching the causes of childhood heart disease, and in improving treatment and care for those affected by it. Many more Heartkids are  surviving into adulthood to lead active and productive lives, even if that means a little more care and support is needed to help them along the way. HeartKids is no longer simply about supporting babies and toddlers, now we are about supporting a growing group of young adult and adult Australians.

Beating childhood heart disease (CHD) is a continuing challenge, and won’t happen unless there is ongoing high-quality analysis and advice, based on an empathic understanding of the need of patients, identifying what works and what is needed in the future to ensure that our ability to treat and care for our fellow Australians with CHD and their families.

This is why HeartKids Australia joined with the Cardiac Society of Australia and New Zealand to commission an independent expert to look at the CHD environment, current and emerging patient and family needs, the available treatment and support services for CHD, and what gaps need to be addressed to make all these as effective as practically possible.The result is the “White Paper” on Childhood Heart Disease in AustraliaCurrent Practices andFuture Needs, prepared by LaTrobe University academic Professor Sandra Leggat.

Professor Leggat consulted objectively and extensively with patients, families, care workers, clinicians and researchers. She looked closely at what is needed to both make CHD manageable for patients, families, care providers and the wider community, and what can be done to keep Australia’s CHD effort as truly world-leading as it is.

Professor Leggat’s “White Paper” makes a number of recommendations targeted at clinicians, the HeartKids community and Commonwealth, State and Territory governments. At a time when hospital-centred health reform is again in the spotlight, she particularly makes some very sensible – and not necessarily greatly expensive – recommendations about better planning, distributing and coordinating CHD services and resources, as well as performance standards that could fit under the sort of monitoring regime just agreed to by the Council of Australian Governments.

Just like a government White Paper, this is a discussion document with suggestions for consideration and adoption. It is not intended as a list of lobbying demands. Above all, HeartKids Australia and the Cardiac Society both want this “White Paper” to be a catalyst of robust discussion and debate in the CHD family and clinical community about not just about what’s best for them, but might just help ensure that the pain and heartbreak of CHD is avoided or mitigated for thousands of future Australian children and their families.

Download a copy of the White Paper