The hardest thing we have ever done - Palliative Care Australia

Findings from ‘Caring Costs’ confirm that income support, health care and community
services/support are carers’ major needs. There are significant problems for many carers and
their families with current health costs and private health insurance arrangements,
particularly with gaps in the range of insurable health services which lead to ‘gap costs’.
Although health benefits are paid at present for doctor treatment, many costs of nursing and
other care are not covered. These costs are a major burden and have been compounded by
the shifting of post-acute care and care costs to the community care sector and families.
Early discharge from hospitals and the closing of institutions in the disability and mental
health care sectors has greatly pressured HACC and other disability services programs which
provide care in the community. Waiting lists are long and many carers and care recipients
are missing out. Adequate resource transfers to meet the needs of care recipients and their
informal carers have not accompanied policy changes in these areas, which have seen
institutional care replaced by community care. In fact, carers feel that the shift from
residential to community care has been implemented without adequate regard for the
impact on families and support needed by carers.
Gaps in Service Provision and Support
The current provision of services for informal carers has been described as ‘crisis
intervention’, as it is only in crisis situations of imminent or apparent breakdown that
services respond (Harding & Higginson, 2003). Those carers who appear to be coping in their
role and do not request services are assumed to have no unmet support needs.
According to Schofield et al (1996), use of and satisfaction with medical services and
professionals such as GPs remains under-researched even though medical services are likely
to be the most commonly used services by caregivers. Most research indicates that the use
of formal services by family caregivers is not widespread, for reasons already mentioned in
the section about barriers, above. They include being unaware of their existence, or having
access problems or because the service is inappropriate for their needs. While research was
mainly based on samples of carers attached to a service provider, the views of a large group
of carers not using services remain untapped. Carers’ views on broader mainstream service
provisions such as housing, childcare and rehabilitation programs, which clearly have a direct
impact on the experience of caregiving, are often neglected.
Nationally, carers of the mentally ill expressed extremely low levels of satisfaction with
service provision in key support areas (Mental Health Council of Australia, 2000). These
included: access to respite care and home care services; clearly defined mental health
information/education access points; access to counseling, debriefing, emotional and social
support to sustain their caring capacities; support for their roles in helping to assist
consumer medication programs; a variety of improvements in professional mental health
practice that directly impact on their effectiveness, including timely and practical access to
consumer information and engagement in consumer assessment and treatment/care
planning decisions.
Nankervis et al (2002) called for a more proactive approach by GPs to help ease the burden
of family carers by addressing their support needs. Carers have identified that GPs can help
by:
• recognising their carer status and care responsibilities and including them in care
planning and decision-making
• providing plain-language information to the carer on the patient’s condition, prognosis,
treatment, care needs and management
THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
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