HoH Programmes
The
Executive Committee reviewed all HoH programmes in August 2006. The following is
a summary of these discussions:
Provision of Resources
Resources provided to sufferers of complex congenital heart conditions and those
that care for them includes information provided via the HoH website and printed
material such as the HoH Newsletter and brochures. It was agreed that such
resources are essential and funding of this programme was approved for 2006-07.
Telephone Counselling Services
HoH’s telephone support service plays an important role in helping parents
advocate for their children. The Committee agreed that the provision of a 1300
service is desirable. However, this can only be undertaken when HoH secures
funding specifically for this purpose. It was suggested that grant applications
should be submitted in 2006-07 for this purpose. The Committee also discussed
training courses for HoH counsellors and this initiative is currently being
investigated.
Goods/Services for Hospitalised Children
Providing goods/services and equipment can help ease the distress of these
children particularly when they are hospitalised. The following options were
identified by the Committee as means to achieve this:
§
Hospital Packs
Members of HoH have
suggested many items that would be helpful when children are hospitalised for
treatment. These include information resources for parents, reading material,
colouring books, pens, toys and other activity items for children. The Committee
agreed to work towards providing ‘Hospital Packs’ as a matter of priority and
that the programme would be funded through a combination of grants and donations
of goods/services for inclusion in the pack.
§
Purchase of
Medical Equipment
The quality of life of sufferers of complex congenital heart conditions can be
considerably enhanced by ensuring they have access to equipment that allows
better control of their condition. Hearts of Hope Australia has developed the
Medical Equipment Assistance Programme to help meet these needs. Equipment such
as Coaguchek instruments for home monitoring of INR will be provided to children
through this programme. The purchase of such medical equipment is to be targeted
at areas of greatest need and will be funded primarily through grant
applications and fundraising events carried out in the region where the
equipment is required.
§
Equipment
for Cardiac Wards and Intensive Care Units
The Committee agreed
that purchases of equipment for hospitals will be funded through specific
fundraising events as needs are identified.
Community Awareness
Even though 1 in every 100 children are born with heart disorders, the level of
community awareness of these conditions remains very low in comparison to other
childhood diseases. Raising awareness, so that there is a better understanding
of complex congenital heart defects, is one of the primary goals of Hearts of
Hope Australia. Our current approach to raising awareness through family media
stores, the HoH website, newsletter and other published material will continue
to be funded. Additionally, the Committee identified a number of other
initiatives that would help HoH’s aim to raise community awareness. These
include:
§
production of a
calendar that includes information about congenital heart disease, and
§
setting aside one
week each year when HoH will arrange events and media campaigns throughout
Australia that highlight the challenges faced by sufferers of complex congenital
heart disease.
Although
these new programmes will not be implemented until the 2007-08 fiscal year,
planning is already well underway and HoH has appointed a publicity officer to
coordinate all activities in relation to raising community awareness of complex
congenital heart disorders.
Support of Medical Research
Medical research can significantly improve the quality of life of sufferers of
congenital heart disorders. The Committee agreed to continue this programme and
resolved to reserve 10% of funds from charitable collections in 2006-07 to
support research. These funds will be donated to organisations which carry out
research that helps improve mortality rates and the quality of life of the
survivors of complex congenital heart conditions.
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Awareness 
