The hardest thing we have ever done - Palliative Care Australia

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It is worth noting that the Australian Government has recently made steps in the right direction in several of these areas of unmet need. A total of $201.2 million was made available throughout the five years of the Australian Health Care Agreement for palliative care (2003-08). A further $55 million was committed to support national activities through the National Palliative Care Program. Initiatives included: access to palliative care medications in the community; assistance for families and increased support to other care networks through the Caring Communities Program; increased resources to carer respite centres to provide respite for carers; carer focused palliative care information and education initiatives, ie production of fact sheets; palliative care equipment program ie grants to purchase equipment for loan to families and carers; a national palliative care education program in residential aged care facilities; palliative care volunteers and initiatives to benefit rural areas and indigenous communities. These initiatives will be evaluated in due course. Hopefully those initiatives which the evidence suggests are successful will be replicated on a wider scale to reach and benefit carers across the country. The last issue causing angst to carers is employment. Government leadership is required in developing policy that encourages employers to allow some flexibility around balancing caring responsibilities with the need to earn an income. A recent conference on carers and employment (Carers UK, 2004) has urged that “a discussion of the converging factors that serve to make the need for, and the needs of, carers as a labour force, and the skills gap in the workforce, is particularly pressing”. The conference highlighted the following workforce projection in the UK, which should give food for thought for Australian policy-makers: An estimated 2.5 million extra people will be needed in the UK workforce within the next 8 years but less than a quarter of these places will be filled by school and college leavers. Meanwhile, more than sixty percent of people will fulfill a role caring for sick or disabled relatives, either full or part-time, which will impact on their ability to work. Helping people to combine their caring and work responsibilities, therefore has the potential both to help fill a gap in the future workforce and prevent carers from becoming excluded from the workforce or trapped in low paid and inflexible jobs. In conclusion, there is compelling evidence to indicate that the work of carers is undervalued and marginalised in the Australian community. The national inquiry in its two parts, the literature review and the analysis of public submissions, reinforce the importance that policy responses and resources be focused urgently on this area of service to help carers perform a vital and important role into the future, particularly as carers are increasingly replacing skilled health workers in the delivery of unfamiliar complex care for people with terminal illness. 62 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
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The Social Impact of Caring for Ter
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Acknowledgments Palliative Care Aus
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Table of Contents Acknowledgments 2
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Conclusions based on public submiss
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Executive Summary Palliative Care A
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Literature Review Background Relati
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Page 18 and 19: A common feature of caring for indi
Page 20 and 21: Table 4: Effects of caring on the p
Page 22 and 23: Impact on Economic Wellbeing It app
Page 24 and 25: Coping with Caregiving Caregivers o
Page 26 and 27: escort may not be considered medica
Page 28 and 29: Carers of children and children as
Page 30 and 31: Needs and Barriers Information and
Page 32 and 33: to conspiracies of silence where bo
Page 34 and 35: • providing information and refer
Page 36 and 37: implicated by the lack of positive
Page 38 and 39: for a terminally ill family member.
Page 40 and 41: • specialised strategies which ad
Page 42 and 43: The Impact of Caring Through the Vo
Page 44 and 45: Carer for husband with Multiple Mye
Page 46 and 47: The financial impact of caring Care
Page 48 and 49: The need for support services Carer
Page 50 and 51: Carer for brother with bowel cancer
Page 52 and 53: Seeking community recognition: sugg
Page 54 and 55: The Needs of Carers through the Voi
Page 56 and 57: • accurate information about the
Page 58 and 59: Recognition Service providers sugge
Page 60 and 61: • for the terminally ill person w
Page 62 and 63: People from culturally and linguist
Page 66 and 67: Dawson, S., & Kristjanson, L. (2003
Page 68 and 69: McGrath, P. (2001b). Returning Home
Page 70 and 71: Schulz, R. & Beach, S. (1999). Care
Page 72 and 73: • Julie Murphy (health profession
Page 74: Palliative care services Palliative
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