The hardest thing we have ever done - Palliative Care Australia

Public Submissions
Introduction and Overview
As part of the National Inquiry into the Social Impact of Caring for Terminally Ill People,
submissions were invited from individuals, families and organisations in the form of one or
more of the following:
• letters or case studies describing unpaid carers’ stories and experiences
• descriptions of unpaid carers’ needs and the extent to which they are being met
• policy statements and/or recommendations relating to unpaid carers of the terminally ill
• information relating to the needs of unpaid carers and the extent to which they are
currently being met by government, other institutions and the community
• copies of recent relevant reports or publications
• relevant research data and/or literature reviews.
A total of 131 organisations were contacted via letter and/or e-mail and invited to make a
submission. Champions were assigned to follow-up with a total of 23 organisations. In
addition, a national advertisement was placed in the Australian newspaper and also
circulated through:
• the PCA newsletter
• PCA Member Association newsletters
• PCA’s e-mail list
• stakeholders newsletters and e-mail lists
• the PCA website
• professional magazines
• community newspapers around Australia.
This analysis is based on submissions received from 20 individual carers, six volunteers in
palliative care and 23 support organisations/ service providers. A further twelve submissions
were in the form of newsletters and other printed material, published articles and conference
presentations, the content of which was incorporated into the literature review where
appropriate. The list of contributors to the inquiry is in the appendix.
In the first part of this section carers describe, in their own words, the impact that caring
has had upon their lives in terms of mental, emotional, physical and social issues, work
opportunities and financial costs, and in particular if they lived in rural areas. Carers also
expressed their need for support services, and voiced their feedback on palliative care
services and the role of caregiving. The majority of carers who responded to the inquiry were
female, either wives or daughters, caring for husbands or parents with mainly cancer or
dementia. Two males were caring for their wives with Motor Neurone Disease (MND).
In the second part of this section, support organisations and other service providers
describe the needs of unpaid carers and gaps in service provision and support, and in
particular those of special groups. The two parts conclude with recommendations to ease
the burden of caring and improve the status and quality of life of carers, in the domains of
information and education, financial and work-related issues, support services and
community recognition.
THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
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