Tuesday, 27 February 2007
National Ovarian Cancer Awareness Week
This week, 25 February to 4 March, is National Ovarian Cancer Awareness Week, so some people in this chamber, as well as in the wider community, are wearing blue ribbons. I know that sometimes the ribbons get a bit tired and people say, ‘It’s just another cause,’ but I am really hoping that this cause, amongst so many others, will catch the attention of the community and make people stop and ask why we are concerned about ovarian cancer.
It is timely that today the government brought down its response to the October 2006 report of the Senate Standing Committee on Community Affairs called Breaking the silence: a national voice for gynaecological cancers. We welcome the government’s response to that report, which was handed down this afternoon. I have already talked on the record about the fact—and I hope that other people are going to do so as well—that there were 34 recommendations from the committee focused around the evidence the committee received. We were so privileged to have shared in the deep personal experiences of women who were working through their own journeys—that is the common parlance now: the cancer journey—their families and supporters and also an amazing array of professional people in this country who would be able to go anywhere in the world with their qualifications, commitment and real dedication to ending this cancer and finding a cure. We welcome the response from the government and we now have the job of ensuring that the accepted recommendations are in fact put into place.
To coincide with this week, the wonderful National Breast Cancer Centre has released some fact sheets about ovarian cancer. The most reinforced argument that we can have about the need for awareness in our community—show the ribbons!—is the fact that a survey released today, conducted by the National Breast Cancer Centre in their standard process, revealed that half of all Australian women are potentially putting their lives at risk by incorrectly assuming that a pap smear will detect ovarian cancer. This is so disappointing. It makes me fearful but it also makes me angry that in 2007 our health awareness programs have not been able to break through that level of ignorance. Educated and aware women do not understand their own bodies, do not understand the risks that they are facing and, worse than that, feel as though they are being protected by going through a medical process which they do not understand. If there is one message that we can take away from National Ovarian Cancer Awareness Week this year it is that we have to make sure that women, their families and their health practitioners all gain knowledge about this cancer, and we have to make sure that they are aware and that they ask the right questions. Otherwise, the survey results that were brought out today become meaningless and we have not heeded the hope and expectations that those people gave us as their representatives.
I want to quote some of the evidence given to our committee. There were so many things. I reinforce again: please read the report; it is full of valuable experience and knowledge. I want to read two quotes now that link in with the survey that was released. One is from Professor Neville Hacker, the Director of the Gynaecological Cancer Centre at the Royal Hospital for Women, who said:
If you asked the average woman on the street whether she had ever heard of a gynaecological oncologist, she would say no.
Another quote is from Mr John Gower, a wonderful man who works in Queensland as the Chief Executive of the Gynaecological Cancer Society there. I really want to reinforce this quote:
There is a lot of evidence where women have presented with symptoms and in truth the only reason that a final diagnosis of gynae cancer was made was because the patient sat there and said: ‘That’s not good enough. I don’t have a cold.’ ...There are a lot of women alive today who would not be if they had not been assertive about their symptoms.
That is the evidence of knowledge. We know that if women have the knowledge to ask questions, to take their health into their own hands and to work with medical practitioners, a lot of lives would be saved and the mortality rate which is now present for gynaecological cancer would be improved.
In the time that I have I want to talk about two places that I have had the honour to visit in Queensland. Senator McLucas has had this experience as well. One is the Wesley Hospital, which I have talked about here before. It has a very well established process for supporting women through breast cancer—the Kim Walters Choices program. Through that program there is very individual support offered to women and their families, both medically and in their social lives, and it assists them to work through at their own pace what they need to make their own choices—hence the title ‘Choices’. I am really happy that the Choices program, which has been in place now for many years with so many success stories, has now been extended to include women with gynaecological cancer.
That effective model of personal support linked to a very strong hospital has now been extended to women who are working through gynaecological cancer. It provides medical support and very skilled personal knowledge from women who have gone through this process themselves and it can offer as little or as much help as a woman needs. I think that is so important. It is not intrusive. You are not told what you must do or should do; you are encouraged to make your own choices through the process. Through the extension of the process on the campus at Wesley Hospital, and also through their regional visiting service across Queensland, this kind of personal knowledge, support and interaction is now available for those people who are working through gynaecological cancer. They have information and special exercise programs which work with women so that they can regain their own strength. They have multidisciplinary teams—how often have we heard that term?—with physiotherapists, peer support coordinators, specialist nurses and councillors so women can make their own decisions in private about what they want to do for their health and their families. I know that we will be talking about this again as we work through how the response to the recommendations of the Breaking the silence: a national voice for gynaecological cancers report will be put in place. I know I will be able to come back here and talk about the personal experiences of so many women.
The other centre that I had the privilege to visit in the last couple of months was at the Royal Brisbane Hospital in Queensland—one of the largest centres looking after women with all forms of illness but in particular gynaecological cancer. I had the privilege to talk with a number of the case managers, specialist nurses and amazing doctors who operate in that area and see their personal commitment to the patients and their families. Every woman who presents at that hospital brings her own experience but also that of her friends and family, because cancer does not only affect the person who has the condition; it affects their whole family and also their friends and support networks. This clinic at the Royal Brisbane Hospital allows those women to share their experience. We hope that it can be enlarged, because the demand is so great. That is also the plan that is being worked through at the Brisbane hospital, because they want to provide the services as best they can.
I know that Senator Adams will be talking about the patient travel scheme at some time, if not this evening. We cannot let that go unnoticed. When someone is ill and they need to travel to get the best possible care—and sometimes the best option is to travel to where the service can be provided—we as a community have a responsibility to ensure that they have the best possible support for their travel and accommodation so that they, their family and their carers can all take part in what must be a personal choice for how that journey will take place. If we cannot get appropriate support on such simple things as travel and accommodation, we are nowhere near getting the kind of specialist, professional medical help that must be provided.
This week we have National Ovarian Cancer Awareness Week, and we wear the ribbon, but we need that awareness and knowledge much more strongly entrenched in the wider community so that those voices that have been silenced can be actively heard and we can maintain a strong response, because we are better than a silent community.
I too rise this evening to speak on Breaking the silence: a national voice for gynaecological cancers and the government’s response to that report. As a member of the Senate Standing Committee on Community Affairs, which held an inquiry into gynaecological cancer in Australia last year, I am delighted with the government’s response to the committee’s report. This inquiry drew people from all walks of life to give evidence to the committee’s eight public hearings, which were held in Canberra, Sydney, Melbourne and Perth. We also made two site visits. It was a great opportunity for the committee to meet with so many experts in the area of gynaecological cancer. Witnesses included women with gynaecological cancer, survivors, gynaecological oncologists, medical and allied health professionals, representative bodies—of which there are a terrific number—and consumer advocacy groups.
This all started with the committee holding a roundtable in March 2006 to discuss gynaecological health issues. It was obvious from this roundtable that an inquiry was needed into this area of women’s health—an area that was very rarely spoken about but affects so many Australian women. I wish to acknowledge and thank all the women who came forward and told us their very personal stories, including the difficulties they have had in dealing with their gynaecological health issues. Many travelled great distances at their own expense to give evidence to the committee. Gynaecological cancer, unlike breast cancer, has not been highlighted in the way that it should have been. So we wear our ribbons—and, for those who do not have them, the Government Whip, Senator Jeannie Ferris, has a great big basket of them. I would love to see everyone wearing them in the Senate tomorrow.
Getting back to the release of the government’s response to the report, our recommendation 1 was:
... that the Commonwealth Government establish a Centre for Gynaecological Cancers within the auspices of Cancer Australia.
Of course, Cancer Australia was a Commonwealth initiative. They have just had their first meetings and are really starting to make a difference. Recommendation 1 continued:
The Centre will have responsibility for giving national focus to gynaecological cancer issues and improving coordination of existing health, medical and support services and community projects.
The government’s response to this was:
The Commonwealth Government agrees to establish a Centre for Gynaecological Cancers within the auspices of Cancer Australia. Once the Centre has been established, the Government will ask it to undertake an early assessment of existing gynaecological cancer services and to provide a national focus to gynaecological cancer issues.
I quote from their minister’s press release this afternoon:
The centre will receive $1 million in seed funding to support its establishment and initial operation. It will provide education and increase awareness among medical and allied health professionals about gynaecological cancers and—
as has been said—
will operate under the auspices of Cancer Australia.
The $1 million for the new centre is in addition to investments totalling almost $13.6 million over six years to 2009 that the government has committed to programs for women’s cancers. Over half of this investment is currently delivering breast cancer and ovarian cancer programs through the National Breast Cancer Centre. The National Breast Cancer Centre delivers the ovarian cancer program and breast screening program and will be working closely with the new Centre for Gynaecological Cancers.
It is important to note that gynaecological cancers affect the lives of the more than 3,800 Australian women who are diagnosed with it each year. During 2005-06 the National Health and Medical Research Council provided more than $44 million for research into gynaecological cancers. The National Cervical Screening Program has helped to reduce the incidence of cervical cancer by 57 per cent and mortality by 58 per cent in the past 10 years.
Our recommendation 3 was:
The Committee recommends that a working group be formed, with the support of Cancer Australia, consisting of individuals with experience and expertise in gynaecological cancers to best develop the roles, responsibilities and priorities of the Centre for Gynaecological Cancers.
It is very important that we have the correct expertise, along with the people who have gone through this—the survivors and also consumers. It is just so important that the group consists of the right people. The Commonwealth’s response to this was that it:
... agrees with this recommendation and will seek advice from Cancer Australia and the relevant professional organisations ... on the composition and terms of reference of the working group.
That is very important.
I will move to the work that has been done in the screening program, which I think is very important. The committee recommended:
... that the Commonwealth Government’s funding and leadership of the National Cervical Screening Program continue and that strategies be implemented to improve screening participation rates for Australian women, particularly for Indigenous women.
As Senator Moore has just commented, this screening does not give a positive diagnosis of ovarian cancer; it is for cervical screening. We really need to get this message across, and I think that after tonight we will. The response is that the Commonwealth government will continue its funding and leadership of the National Cervical Screening Program, and it has initiatives in place which aim to improve the screening rates for Australian women.
In 2006-07, budget funding was continued to encourage general practitioners to increase rates of participation in this program, particularly for women who were lapsed or had never been screened, including our Indigenous women. Since the initiative commenced, almost 190,000 previously underscreened women have been screened by their GPs. Once again this is a wonderful initiative, and the fact that this program will be carried on is very important. The screening program at state and territory level employs Indigenous staff to advise on communication and cultural matters, which is very important, and uses Aboriginal health workers wherever possible to provide services or communicate the importance of screening to Indigenous women.
I am rather disappointed about some of our other responses. Senator Moore has already noted the patient assisted travel. I will keep working on this. It is unfortunately a state responsibility, but I believe we should have national guidelines so that the borders of our states are broken down and women who have to go to another state for treatment can do so without any of the problems they are experiencing at the moment.
The other thing we put forward was lymphoedema. Many gynaecological cancers with lymph nodes being removed from the groin area eventuate with lymphoedema. It is an insidious disease and very difficult. I have it in the arm, which is easier to manage but is hard enough. But when you have it in your legs and in your body and you are trying to deal with it yourself, plus having to wear very heavy and expensive garments to prevent the swelling, it is really difficult. The people who can help us are allied health professionals and physios. We are trying to get further support for people with this condition, because it really is difficult. Gynaecological cancer patients do get it, and I think it is now my responsibility to those people who gave evidence at our inquiry to improve the lot of rural and regional women who have to travel for their treatment for gynaecological cancer and also of those women who have lymphoedema. These are my two issues for the next year.