Gl.oncer

Gl.oncer
MsSusanHanson
Director,ConsumerNetworks
CancerAustralia
POBox1201
Dickson ACT 2&2
vorcesnsw
ConcerVoicesNSWInc
POBox50]6
GreenwichNSW2065
rlF 0294361755
org.ou
info@concervoices.
www.concervoices.org.o u
Thevoiceof people
offecledby concer
DearSusan
National Franrework for Consumer Involvement in Cancer Control
Prior to the inteMews which are beingarranged,and the NationatReferenceGroupmeetingto
foltow, CancerVoicesNSW{CVN)wishesto provideother participantswith our eartier submission
of Septemberlast year (attached),and somecurrentsuggestions.
White CancerVoicesAustratia(CVA),our nationalvoice hasagreedto partner with Cancer
Austratiain this project, CancerVoicesNSWhasa few initial reservations.They may be simpty
addressedby ctarification duringthese meetings.
The principalconcernis that while the cancerconsumermovementhasdevetopedvery futty over
the last 15 yearsin Austratia,this doesnot appearto be recognisedby the Frameworkproject's
aimsand may cut acrossthe wetl developedconsumerengagementprocessesatreadyin ptace.
Suchprocessesexist in the consumerorganisationsfor specificcancerslike breast, ovarian,
prostateand of coursegenericaltyvia the CancerVoicesmovement- which in itsetf beganin 2000
when CVNwas set up to pursuethe genericissuessharedby peopteaffected by cancer. We note
that CVAhasyet to devetopsuchprocesses,which may wetl explain their interest in partnering
with CAin this instance.
Our concernis that a top-downFramework,althoughdevetopedin consuttationwith some
groups,may impacton the substantialwork already
consumergroupsand severalnon-consumer
donein this areaby existingindependentconsumerorganisations.The presentproposaldoesnot
recognisethe independentconsumermovement,spearheadedby the two BCAGs(Victoriafrom
19i4 andNSWfrom 19971,by BCNAin 1998,and fottowedby the CancerVoicesmovementand
others.
CancerAustratia(CA)has, to date, relied on a processof bringingtogether invited consumers,
someof whom may be associatedwith the cancerconsumermovement,but not necessarityso.
Thishasunderpinnedan "in-house'modelfor CA'suseand advice. We betieveit doesnot reftect
the best practice principtes{seeattached} usedby thosegroupswhich fottow the Commonwealth
Consumer
AffairsAdvisoryCouncil'srecommendations.
in early 2011,but
Severalof us, as individuals,will be invotvedon the Frameworkconsultations
CVNfeetsthat it is importantthat the purposeof the Frameworkbe ctarifiedat the start. ls it
simptyfor the useof CA? Wewould hope that CAwoutd not expect it to work acrossthe well
developedprocessesatreadyin place. Theseoperateto nominateinformed, trained consumers
who can providethe broadview of peopteaffected by cancer (note, not an organisationalview],
when format requestsfor suchnominationsare receivedvia our websites. For exampte,currently
CVNatonefietds74 nomineesto 142decision-making
committees.
as is bottom-upparticipation'
is a hattmarkof meaningfulconsumerengagement,
Independence
consumerorganisations'
heatth
and major
Thisis wett recognisedby the AustratiJnGovernment
pteaseconsiderour concernsand adviseus aboutthe expectedoutcomeof this exercise. We do
are then.expectedto
of a Frameworkwith whichother organisations
cautionthe devel.opment
atreadyworks' That
themsetves
work, when a vatid andworkabteprocessdevisedby consumers
voluntaryand grassmainty
other
the
may not only causeJufllcation of effort (onewett-fu.nded,
engagement'lf CA
consumer
for
bases
phitosophicat
Uututro a possibleconftictof
rootsUaseOf
to expandthe
hetping
and
supporting
then
wishesto assist,it mightconsiderfirst recognising,
organisations'
consumer
of the cancer
efforts and engagementprocesses
witl be
We are mostwittingto participatein CancerAustratia'sprocessand trust this earty input
takeninto consideration.
Yourssincerely
,0aA
L n /l
,LU
(-/'
p
L/e/e4;4,
AM
CROSSING
SALLY
Chair
31 December2010
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