A GROUNDBREAKING action plan on the leading cause of death of Australian babies has had the input of a former Tamworth girl.
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The federal government committed last week to delivering a Conquering Childhood Heart Disease National Action Plan by October.
“It’s the first time that childhood/congenital heart disease has been part of the government’s national health agenda, and the first time internationally there has been a commitment to a national action plan,” HeartKids chief executive officer Mark Brooke said.
And ex-Tamworth heartkid Claire Hollinworth was one of the people whose experience helped to inform the HeartKids input into the plan.
Miss Hollinworth was part of a HeartKids roundtable discussion late last year, to share her story and recommendations as someone who had three open-heart surgeries by the age of four-and-a-half.
Miss Hollinworth describes it lightheartedly as “a lot of plumbing work … cut here and paste there” to help her survive without a left ventricle.
The talks included health minister Greg Hunt, Steven Ciobo MP – HeartKids Ambassador and a heartkid parent, Minister for Health The Hon. Greg Hunt, HeartKids board member Jan McClelland AM, and Mr Brooke.
On Wednesday – the HeartKids’ awareness and fundraising Sweetheart Day – she was also there by invitation for the government’s announcement of work on the action plan.
The National Childhood Heart Disease Action Plan will be jointly developed with HeartKids, which will receive $150,000 to undertake the work.
“I was really honoured,” Miss Hollinworth said.
“It’s really nice that people want to listen and hear our stories, because every story is different.”
Miss Hollinworth – who now works in wedding planning and styling in Canberra – said she felt one of the biggest issues to be addressed in the plan was the transition from being a child patient to an adult patient.
“Going from paediatric to adult care is a little bit overlooked,” she said.
“You have to then take everything on yourself, but the system misses you a little bit …
“You have to find new specialists to trust; people that you can be confident in for your health care.”
Mr Brooke highlighted this as a major focus for the action plan.
“Congenital/childhood heart disease is a chronic condition that not only affects babies and children, but also more adults than ever before,” he said.
“Childhood heart disease requires lifelong specialist care.
“This funding is the first step on the road to setting priorities and providing quality, equitable care so that every Australian CHD patient receives the care they need to help them live life to the fullest.”
About HeartKids and CHD
It will be the first time HeartKids, the national charity that supports children, teens and adults affected by childhood heart disease, has received funding from the Australian government.
Congenital heart disease is the most common birth abnormality, affecting one in every 100 infants.
Eight babies are born with it every day and four die from it each week. There is no known cure.
More about the plan
The Conquering Childhood Heart Disease National Action Plan will be released in October 2018 and will make recommendations to the Australian government on the following:
- Models of Care – Best practice models of care of all people living with and or impacted by childhood heart disease including infants, children, young people, adults and their families, so that quality of life is improved and the burden of disease is reduced;
- Neurological and mental health – Strategies to address the neurological and mental health issues for patients and their families;
- Workforce and Infrastructure – Define the workforce and infrastructure priorities of childhood heart disease to ensure equity of services;
- Research – Prioritise and identify gaps in childhood heart disease research to inform the Medical Research Future Fund 'Childhood Heart Disease Mission';
- Financial Impact – how to address the tremendous financial impact of childhood heart disease and
- Evaluation – Develop the measures to better understand patient care and to ensure timely implementation of the Action Plan.
Carolyn Millet
Based at The Northern Daily Leader, Tamworth, and Namoi Valley Independent, Gunnedah. Covering general news and features on community, council, arts, business, health, education, entertainment and rural matters.
Based at The Northern Daily Leader, Tamworth, and Namoi Valley Independent, Gunnedah. Covering general news and features on community, council, arts, business, health, education, entertainment and rural matters.
