Advocacy Work

HeartKids is the national peak congenital heart disease organisation and the voice of people impacted by the disease.

As a leading consumer health advocate organisation we support patients and their families by advocating on their individual and collective behalf to Australian, State and Territory Governments, health and hospital networks, and other agencies that play a part in your congenital heart disease journey.

To date HeartKids has campaigned for and achieved:

• A National Childhood Heart Disease Action Plan funded by the Australian Government which is currently being actioned.
• Increased investment in research by the Government and others. In February 2019 the Minister for Health the Hon. Greg Hunt pledged $20 million in research funding and announced the Conquering Childhood Heart Disease Research Mission. The most significant single investment in childhood heart disease research in HeartKids 40 year history; and
• To ensure patients and their families/ carers gain equitable access to government assistance and support. HeartKids continues to advocate to the Australian Government to ensure fair, equitable and transparent access to the National Disability Insurance Scheme (NDIS). Currently families and adults living with CHD attempting to access NDIS support are faced with a range of conflicting information regarding eligibility for support. HeartKids continues to lobby the government to clarify this confusion.

Many of our advocacy priorities are based on extensive ongoing consultation with families, heart kids of all ages, and health professionals. Much of the evidence used to support our submissions to Government emanates from the 2011 Congenital Heart Disease White Paper commissioned by HeartKids and the Cardiac Society of Australia and New Zealand.

HeartKids Advocacy Priorities

When it comes to our Advocacy work, HeartKids key current priority areas are as follows:

• Access to support funding
• Access to social, psychological and allied health support
• Bereavement support
• Transition from pediatric to adult care
• Travel for care

Access to support funding

HeartKids families and patients identified lack of access to funding and inconsistencies in access to supportive funding as a limitation of the current system. Consistently, families mentioned that parking at most of the hospitals was expensive and a substantial financial drain given the number of times they were required to visit hospitals. This and other matters have created a financial hardship for heart kid’s families.

HeartKids is calling on the government to ensure congenital and childhood heart disease children and their families have access to the National Disability Insurance Scheme (NDIS) and if appropriate, Health Care Cards and Carers Benefits. HeartKids parents report varying degrees of support and these forms of financial assistance are not universally available to all families, with an ad-hoc assessment of need appearing to be the norm.

Access to social, psychological and allied health support

Given that it has only been relatively recently that the neuro-developmental aspects of congenital heart disease have begun to be investigated in-depth, many families have been coping with brain injuries and psychological and psychosocial conditions with very little support. In many cases, one parent was not able to work, as the child with CHD required additional care.

HeartKids Support Coordinators and family members consulted consistently identified the lack of support services as a major weakness of the current health system. In particular the lack of access to social work services was noted.

Bereavement support for Heart Angel Families

Lack of bereavement support was identified in the 2011 White CHD Paper as a major area of focus. Bereavement support was seen to be particularly difficult for families living outside of the major metropolitan centres. When a family has lost a child the family members rarely want to interact with families.

Whilst HeartKids offers a limited Bereavement Support Program and provides financial assistance to Heart Angel families to access grief and loss counselling, the take up rate of Mental Health Plans and the ease of access of these is a high priority for HeartKids.

Transition from pediatric to adult care

HeartKids has identified an urgent emerging need to develop supporting health care systems and programs for young people transitioning from pediatric to adult care. There is a need for transition processes to assist young people to understand how to assume responsibility for their own health care, and ease the change to adult care. HeartKids families indicated that this was not well done currently, and they reported that many adults with congenital heart disease do not participate in appropriate medical follow up. It was also reported that there were limited options for these teens to access medical and life insurance, often leading to financial disadvantage.

HeartKids is actively seeking Government Support for a national teen transition strategy that puts in place age specific population health strategies that engage young people and support them on their journey into adulthood.

Travel for care

HeartKids families from rural and remote communities report number examples of the difficulties associated with the need to travel for health services. The issues included: lack of sufficient funding to support travel (airfares, taxis, petrol etc.), need for financial support for child care forsiblings, the cost of food while away from home, the lack of visitors when in hospital away from their community, the lack of access to affordable accommodation and inconvenience of travel when surgery is cancelled.

Consistent with the recommendation of the National Health and Medical Research Council there is a need for the introduction of national standards for interstate travel for health care. This should include reimbursement for travel by car and include a formula that factors in fluctuations in the price of petrol.

To this end HeartKids is championing this issue with State and Federal Health Ministers to ensure funding is available to assist families, particularly those in rural and remote communities to access appropriate levels of assistance. We are also advocating that in the event of surgery being canceled due to no fault of the patient then the full cost of travel and lost income be fully reimbursed for all families impacted by congenital heart disease.