I certainly want to welcome the initiative of formulating Cancer Australia and I want to go on record this evening very briefly in this debate to acknowledge that we now have information about what this body is going to do and to make some comments about the kind of work we did . A number of us in this place were involved in the Community Affairs References Committee report, The cancer journey: informing choice, and we have spoken about it. I know that Senator Adams speaks about it quite regularly when we have the opportunity.
That particular inquiry was formulated in very special circumstances. There was an urgency and a passion around the issue because of the experience of Senator Peter Cook. What came out of that particular inquiry that operated over a couple of months last year was some genuine commitment and hope for the future. That particular inquiry attempted-and I think successfully-to draw together the experience, the knowledge and the hope of a range of people in the Australian community who want to be involved. I know these words sound very similar to words I have spoken before in this place but, as Senator Webber has said, today we brought down the select committee report on mental health and consistently, whilst we were taking evidence and working through the process, the similarities came forward. But I will focus on this particular initiative. Those of us who were privileged to be involved in the committee that produced The cancer journey: informing choice were able to work with a range of people across the Australian community who had amazing knowledge. These people had great expectations-of what was going to come out from this committee and from what they were led to believe by the promises made by the government during the previous election campaign. One of the positive aspects of that election process in 2004 was that for once the issue of cancer care was an election issue. Too often things like individual experiences are caught up in wider policy announcements but during the election process in the last federal election there were quite considerable and detailed policies before the Australian electorate focusing on the treatment and the development of research around cancer in Australia. That has got to be positive. After the election was over there was stated public commitment from the government that they were going to proceed with a number of quite specific initiatives that were put forward at that time.
Our experience on the committee was that people had read that particular government proposal. They had accepted it and they wanted to be part of it. In fact, in framing the evidence that they gave to our committee, and subsequently when our committee framed our recommendations, we openly referred to what we hoped would be the role of Cancer Australia. There was a feeling when we were doing the community consultations and the submissions and the drafting of the report that was handed down in this place in June last year that Cancer Australia was imminent and that very soon the 12 specific recommendations in the committee recommendations-I think that there were over 30 recommendations-referring to the role of Cancer Australia would be operational. Almost 12 months later we see this legislation-through the role it gives Cancer Australia and what is says Cancer Australia will provide to the community-picking up some of those things. In the list that is here in the legislation, Cancer Australia will be providing national leadership and coordination of cancer control. Certainly they were two things that were pointed out during our cancer inquiry that we desperately needed. There needed to be national leadership to draw together the various research bodies and treatment models that both Senator Hutchins and Senator Webber have referred to, and there needed to be genuine coordination in our community. We were looking at a real coordination and liaison role for this central body, instead of having people working in isolation and sometimes in fact operating in a very competitive model, seeking the research funding and the research brains across the country and finding that there was almost direct competition to draw to particular research areas the best brains and the best knowledge. In fact there was definitely a need at the national level to draw a more coordinated approach.
With the best will in the world, if people are actively competing there may be less encouragement to share knowledge and success, and sometimes less chance of getting a better result by working together.
Clearly, the role of Cancer Australia must be to make recommendations to the government. That was said during the election promises: that the government would take the best possible advice. The role of this new body would be to provide detailed recommendations to the government about policy-and there is a range of things there-and also about priorities, because in this wide range there will always be a need for prioritisation. That is a very difficult issue and, in trying to balance where the best value would be for immediate funding and consideration, there must be a process that involves a coordinated approach that looks across the whole view and does not get caught up with individual demands and the definite emotion and need that comes forward. There is need everywhere. We just have to be able to better organise and plan around that.
Throughout our process there has been very deep interest in the budget area. Whilst the new body, Cancer Australia, will not be determining exactly what the budget will be, it must have a role of overseeing what will be a dedicated budget for research into cancer. Consistently we had evidence during the cancer inquiry, and during the recent roundtable exercise on gynaecological cancers, to which Senator Webber referred, about the absolute need for a high level of funding into research. We know that the expertise is here in Australia. We are confronted by the amount of knowledge and commitment we have. But consistently the call comes that research must be effectively funded. Unless we do that at the local level, the resources will go elsewhere or be diverted into other areas of research. So the idea, as put forward by the government, of the dedicated budget being overseen by this new body is strongly supported.
I particularly like the last one. Being an ex-public servant, I am very keen to see anything in a statement that says something like 'undertake any other functions as required', and I note that, in the process, that is one of the roles for Cancer Australia. So, given the concept of having the body and having its role spelt out the way it is in the legislation, of course we support it, and of course I will be supporting Senator McLucas's amendments. The issue that I would like to mention very briefly at this moment is the make-up of Cancer Australia. Through people being involved in their health issues, we have a greater knowledge now of the role of consumers. I do not actually like the term 'consumer', but it is accepted in the industry. By having people who are part of the process, who are living the experience, being involved in whatever way in the development of policy and in the coordination and administration of what goes on, the role of consumer is being reinforced in a range of areas. We heard today that the role of consumers in mental health is one that must be enhanced and also put into whatever legislation or regulation is developed. I add my voice to that call in the formulation of who exactly will be on Cancer Australia, because it must allow for people who have the immediate experience to be involved in this process. We need to be aware of the process that will be followed to appoint people to this body and of what kind of background they will have. We also need that process to be very public and transparent.
My point tonight is to show concern that a body that we had hoped would be imminently put in place in June 2005 is still in the consideration phase. It is sad that there has been that delay in the process, as we who were working with the community 12 months ago were of a clear understanding that this body was going to be instituted very quickly and in place and that the work would actually be being achieved rather than it happening sometime in the future. Of course all actions need effective planning and will operate into the future, but the delay in the introduction of Cancer Australia has already, in some ways, caused some distrust and concern in those bodies that the government needs to be involved in where we go next. All these areas rely firmly on a spirit of trust, a sprit of involvement and a spirit of loyalty. When you have already had a delay in expectations being met, it makes it that much harder to implement a positive move into the future.
I trust that the government will acknowledge that there is some concern in the community and in the medical profession about this delay and some hope that we will be able to move more effectively into the next stage, taking into account that there must be involvement in the community. Senator Webber and Senator Hutchins were explaining about the model of care in this area being transferred from one which is imposed upon people to one which is actually stimulated by the person at the centre of the treatment model. That same model should be extended, I believe, to the administration and the development of the policies from here on. It must involve those who are best able to talk about what it is like to live the cancer journey. We strongly endorse the development of the Cancer Australia model. We have awaited it for too long, but we hope that it is yet another stage in something that the Australian people have been led to expect-that we will be a leader in this field and that we will involve all of our community in our joint effort to defeat cancer in Australia.
30 March, 2006
