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Childhood Heart Disease White Paper Childhood Heart Disease White Paper The “White Paper” on CHD, Childhood Heart Disease in Australia – Current Practices and Future Needs, was 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. Key Findings • It is estimated that there are approximately 64,000 people currently living in Australia with congenital heart disease. • Approximately half of these (32,000) are under the age of 18. • The number of adults (those over 18) living with CHD is increasing by 5% per year. • Survival rates of children affected by CHD have risen significantly over the past 20 years as a result of enhanced medical interventions. (Instead of a mortality of 85% during childhood following the natural course, over 85% of these infants are now expected to reach adulthood) • CHD is still the greatest killer of infants in Australia – (overtaken by accidents and cancers after the age of 5) • Death rates in Australia’s indigenous community, as a result of CHD, are 2.6 times higher than for other Australians. • Australia indigenous communities have some of the highest rates of rheumatic heart disease in the world. This is as a result of streptococcal infections and is totally preventable. • Recent studies have indicated that children with CHD may have higher neurodevelopmental, psychosocial and behavioural needs as a result of their conditions and procedures, which may affect their schooling. • Three recent State health system reviews have highlighted the current pediatric health system organisation may be contributing to suboptimal patient outcomes. • There is a need for a national patient registry to track diagnosis, treatment, outcomes to provide accurate information of health system planning. • There is a need to define the role and relationships of services and programs to enhance the coordinated care network for children and adults with CHD. • There are shortfalls in trained staff to meet the future needs of the growing population of those living with CHD. • There is no cure for congenital heart disease. Even survivors of successful childhood treatment can face life-long risks from congenital heart disease, including heart failure, rhythmic disorders, stroke, renal dysfunction, and neurocognitive dysfunction. • Less than 10 percent of adults living with complex congenital heart disease currently receive recommended cardiac care. Many individuals with congenital heart disease are unaware that they require life-long specialized health surveillance. Delays in care can result in premature death and disability. • The estimated life expectancy for those with congenital heart disease is significantly lower than for the general population. The life expectancy for those born with moderately complex heart defects is 55, while the estimated life expectancy for those born with highly complex defects is between 35 and 40. 18
“White Paper” Recommendations The following recommendations relate to the potential role of HeartKids in addressing some of the issues raised in this Discussion Paper, and are conditional on sufficient funding being raised by HeartKids to support ongoing operations as well as strengthening the strategic planning and focus as it grows and defines itself as an organisation: Channel 9 Telethon Distinctive Home and Land Lottery Tickets $ 10 Book of 4 for $ 30 ARE YOU FREELING LUCKY? 1. It is recommended that HeartKids, in consultation with the specialist clinicians and service providers, develops an effective strategy to create greater understanding and awareness of the needs of children with congenital heart disease and their families. 2. It is recommended that HeartKids considers broadening its funding base to enable the expansion of its family support services into the community (including regional areas and transition into the education system) and developing an appropriate and effective national support structure for families with CHD. 3. It is recommended that HeartKids works with the Aboriginal and Torres Strait Island communities to advise the Commonwealth Government on how best to provide family and healthcare support to the heart kids and their families in these communities. 4. It is recommended that HeartKids works with the specialist clinicians and service providers to identify information that is scientifically accurate and relevant to parents-to-be and heart kids families about the prevention of both congenital and acquired forms of childhood heart disease, and to disseminate that information to the community. 5. It is recommended that HeartKids works with hospitals, specialist clinicians, the National Health and Medical Research Council and the National Institute of Clinical Studies to develop, test, publish and disseminate relevant information on the causes, diagnosis, treatment and management of congenital heart disease including management of the disease and its complications throughout life. Where possible information brochures could be provided in languages other than English. 6. It is recommended that HeartKids considers partnering with the cardiac care hubs and bereavement experts to ensure that bereavement support is as available and sensitive to family needs as reasonably possible First prize a furnished country style home or $250,000 cash. Donated by Distinctive Homes, Freeling Estate, Taste Furniture and Supreme Kitchens. Home valued at over $400,000. Second prize $20,000 cash. TE2245_2011_HomeLandLottery__DL Flyer.indd 1 Sponsored by MMadvertising & tav productions. Licence No. M12245. Photos for illustration purposes only. Tickets can be purchased through HeartKids SA from 8th July 2011. 17/06/11 12:47 PM If you would like a copy of all 20 recommendations, please contact 08 8332 2901 or mail@heartkidssa.org.au Buy a book for $30, receive a free ticket and a chance to win $5,000 cash 19
Page 1 and 2: Quarterly Newsletter of South Austr
Page 3 and 4: Contents Contents 1 Front Cover Lar
Page 5 and 6: Are you going to be part of this ye
Page 7 and 8: Siblings Australia Siblings Austral
Page 9 and 10: Regional News Regional News Pt Linc
Page 11 and 12: Alex Hudswell’s India Alex Hudswe
Page 13 and 14: Recent Events and Activities Recent
Page 15 and 16: Upcoming Events and Activities Upco
Page 17: Upcoming Events and Activities Upco

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