The health consumer in New South Wales
What is a health consumer and why should a health consumer be involved in decision making process about his or her health?
A health consumer is a person who uses the knowledge and
experience they gained through treatment to advance the delivery of
health outcomes for cancer patients.
A consumer contributes in a unique way to many health care
discussions. They have a different focus - they have seen the
health care system from the inside and have often been exposed to
more medical teams than the average doctor! They may have dealt
with the GP, the cancer surgeons, medical oncologists or
haematologists, radiation oncologists and specialist cancer nurses
in an array of settings from the chemotherapy suite to the
radiation and theatre suites.
A consumer will often point out the 'obvious' when everyone else
is looking at the bigger picture.
A Consumer Focus Collaboration in 1998 stated:
"The process of involving health consumers in decision-making
about their own health care, health service planning, policy
development, setting priorities and addressing quality issues in
the delivery of health services cannot be overlooked. They have
walked the walk."
This remains the health consumer mantra and has been adopted by
all levels of government in this country.
From the outset, the Cancer Institute has involved NSW consumers
in its work. Following a brief 'honeymoon' period and discussion
with the management team, consumers have gained the confidence of
the Institute and now serve on various bodies and committees,
providing advice at one off consultation meetings, developing,
attending and having a role in focus groups, or appointment to
steering committees and advisory/reference groups for fixed term
projects. This relationship continues to help shape cancer policy
in NSW.
Consumer representatives may be appointed by a consumer
organisation or in their own right but bring skills and expertise
to the body that complements that of other members as well as
ensuring diversity of input.
To complement this, the Institute has shown leadership by
establishing Memoranda of Understanding with consumer groups in
this state and providing funds for ongoing administration. In
addition, for the past three years, the Institute has maintained
two consumer appointments to its Board.
This is to be applauded.
As a consumer advocate, I am reminded of the words by Susan
Sontag from her book, Illness as Metaphor
"Illness is the night side of life, a
more onerous citizenship. Everyone who is born holds
dual citizenship, in the kingdom of the well and the kingdom of the
sick. Although we all prefer to use only the good passport,
sooner or later each of us is obliged, at least for a spell, to
identify ourselves as citizens of that other place."
Being an active health consumer in this state is a means of
shaping health policy in NSW. It is about providing your story,
about collaboration and identifying and raising issues that affect
not only you but the thousands of people whose lives are affected
by cancer in this state each year. We have and continue to make a
difference!
About the author: Mr John Stubbs, BA Dip Acct
Mr Stubbs is the Executive Officer of Cancer Voices Australia
and Manager of the NSW Bone Marrow Transplant Network. Mr Stubbs is
a survivor of Leukaemia and an active representative of cancer
consumers.
He has served on the ANZ Clinical Trials Advisory Committee, the
Radiation Oncology Jurisdictional Implementation Group (ROJIG) and
the Therapeutic Goods Committee under the Department of Health and
Ageing and the Australian Leukaemia Lymphoma Group Clinical Trials
Data Monitoring Committee. He has also served on the Complementary
Therapies Committee of the Cancer Institute NSW.
Top
of page
Top of page
