The hardest thing we have ever done - Palliative Care Australia

Conclusions based on public submissions by carers and
service providers
The picture that emerges from the public submissions is that carers for terminally ill people
‘make do’ with whatever information and support is available to them or comes to their
attention. This is dependent on caring being at the right place and at the right time, or
having the know-how to navigate the system. Those fortunate to have had the support have
felt positive about their caring experience: “it was a beautiful experience, and one that I will
value and cherish always”. A number of carers even went on to train as volunteers for
palliative care “to repay some of the commitment shown to them”. Those less fortunate
carried their caring tasks at the expense of their physical, emotional and financial wellbeing
and as one carer put it, “it is an experience I wouldn’t wish on my worst enemy”. The
experiences of carers suggest that a considerable amount of service contact/access is
occurring on a random or ad-hoc basis. This has implications on carers’ health and wellbeing,
which are inextricably linked to the availability, quality, responsiveness and cost of support
from health and community services.
On a social level, the challenge is to improve community understanding of the contribution
carers make to society, by providing more opportunities for carers to speak for themselves
and making available more information about caring to the community in general, so that
carers’ work and needs are not kept invisible behind the walls of their homes. On an
individual level, carers need to access adequate and flexible resources, fairer remuneration,
more respite care, training and equipment, counselling, personal support and home help and
improved access to the paid workforce.
More work is required to ensure that carers’ needs are fully identified and met. In particular,
specialised strategies should be developed to address the needs of special groups, such as
younger and older carers, those from indigenous and CALD backgrounds, those living in rural
areas and those with disease conditions whose eligibility to access palliative care is
restricted. To achieve this, existing programs such as HACC, community aged care packages,
respite care and the various disability support programs will need more resources and the
effective use of these resources. There is a need for a closer examination of the extent that
carers can access services funded by the mentioned programs and how health and
community care sectors can better meet the needs of carers dying people and their carers, in
a socially and geographically equitable manner.
It is clear that some consistency needs to be achieved in carer information and education
development as it is currently disparate and poorly integrated. Carer needs analysis, the
specification of carer core and specific knowledge fields, educational design, resource
development, product delivery, product evaluation and carer engagement in these functions
need to be systematically facilitated, coordinated and monitored. A framework of national
and state level cooperation for achieving consistency in carer education and information
development would help deliver better quality outcomes for carers in this important support
area.
Four additional areas have been highlighted as requiring attention by both service providers
and carers:
• education and training for service providers in assessing and meeting carers’ needs
• increased income support payments and allowances to relieve financial pressure on
carers
• funding the training of more volunteers
• carer participation in policy and planning decisions.
THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
61
61