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Standing Committee on Health
14/04/2014
Skin cancer in Australia

MARKER, Ms Julie, Acting Chair, Cancer Voices South Australia

[15:33]

CHAIR: Welcome. Do you, as a witness appearing before the committee, have any objection to being recorded by the media during participation in this hearing?

Ms Marker : No, I do not.

CHAIR: Thank you. Although the committee does not require you to give evidence under oath, I advise you that these hearings are formal proceedings of the parliament and warrant the same respect as proceedings of the respective houses. The giving of false or misleading evidence is a serious matter and may be regarded as a contempt of the parliament. The evidence given today will be recorded by Hansard and attracts parliamentary privilege. Would you like to make a short opening statement to the committee?

Ms Marker : I will tell you a little bit about Cancer Voices and therefore the perspective that I am coming from, because you may not know us. We are a 100 per cent volunteer grassroots consumer organisation. We have about 800 members, who we mostly communicate with via email or social media mechanisms. We do not provide individual support. We are an advocacy group but we operate also by advocacy involvement, awareness and information. We have a cycling group as well. We are not just people who have had cancer; we are people affected by cancer, so that includes carers, friends, neighbours and general community supporters who support what we do. So our membership draws on all of those different perspectives.

CHAIR: Thank you for that. I might start off with a question: what sort of advisory services are available to South Australian people who are diagnosed with skin cancer, and how effective are those services?

Ms Marker : Cancer Voices themselves do not provide the services. A lot of information and support would come from the Cancer Council, the cancer helpline and the multitude of brochures and booklets, if you are given them or get to know about them. That, of course, does not always happen. What we feel is that there is a lot of awareness about melanoma but there is a lot less awareness about the non-melanoma skin cancers and where to go to get information. To some extent, the non-melanoma skin cancers are treated much less seriously and it is thought of as just part of life that people will get some kind of skin cancer and it will be burnt off or cut off. So there is not quite the same information-seeking behaviour around the squamous cell and basal cell cancers.

Ms RISHWORTH: You talked about whether or not people get to know about the information. Can you just describe some of the feedback that you have been given—this is cancer in general, but obviously we are focusing on skin cancer—about some of the things that have gone wrong for people in the process of diagnosis and treatment, because that gives us an idea of where the system has let them down and obviously they are the people who are most likely to come to you for some advocacy and assistance.

Ms Marker : That is right. I conducted a little online survey, and I have some results of that if I could table those. I have four copies there. I heard some additional feedback from people about what perhaps had gone wrong and what had not. There is often misdiagnosis; we hear about cases where people have been falsely reassured. There have been long delays between when their GP has referred them to somebody and when they have actually been seen. Sometimes the hold-ups have been administrative hold-ups. It seems as if there is not adequate triaging of the referrals that come in, so somebody decides that an appointment can be pulled for somebody else who is more important, but who makes those decisions? Those have been some of the delays that we have heard of that are of concern, but there does not seem to be a system about how we can change that. We have tried to discuss that particular point. Down the track I guess there is also the issue of access to medicines. Yervoy has just recently gone on the Pharmaceutical Benefits Scheme, but that has taken a long time, and until that time people were actually having to do their own fundraising to be able to access it if they were not in a clinical trial.

CHAIR: Are you aware of how long it took?

Ms Marker : For Yervoy to be listed?

CHAIR: Yes.

Ms Marker : No, I am sorry. Probably the experts would know. I am a bowel cancer survivor myself. We all have our silos of expertise. In Cancer Voices we know a lot about different types of cancers, but we realise that we do not know a lot about everybody else's cancer. Cancer treatment in general does increase your risk of skin cancer. You should be told to stay out of the sun while you are having chemotherapy or even radiotherapy, I believe. You are more vulnerable to sun exposure during that time because your immune system is compromised. But not all people are made aware of that or take that on board. So there is some individual responsibility at the same time. We are finding—even from reading some of the previous submissions to this inquiry—that the follow-up is not always adequate for people who have been diagnosed with skin cancer. You are not always told that you have had a basal cell carcinoma and that you could be at risk of melanoma in the future. The general community does not know that.

I had bowel cancer. I had had fluorouracil treatment with bowel cancer. Shortly afterwards, I had a mark on my skin that became quite inflamed and painful. It turned out to be a basal cell carcinoma. They thought the disinhibition while I was having the bowel cancer treatment had allowed that skin cancer to take off. It was excised. I was not told that there might be any need for follow-up or anything like that. There are opportunities for more awareness in a lot of capacities in the secondary prevention area as well as in the primary prevention area.

Mr WYATT: I have three key areas which I want to explore with you. Firstly, how much of a role do you have as an organisation with respect to the South Australian clinical network? I am assuming that they have a well-structured model of clinical care for cancer.

Ms Marker : I am one of the consumer reps on the Cancer Clinical Network steering committee. It has just been restructured. Cancer Voices South Australia have had members on that committee since 2008, when the Cancer Clinical Network was established. I should probably also point out that through Cancer Voices Australia we are involved at the national level and that there are connections with Melanoma Patients Australia at that level. We are also a member of the Consumer Health Forum and we are also involved with Health Consumers' Alliance of South Australia. So there is quite a network and a lot of interaction so that we are aware of all kinds of things that are happening. Through my work on the clinical network and also as a consumer rep for SAHMRI in the cancer stream, I am quite well aware of the research initiatives that are developing as well.

Mr WYATT: How effective is your voice on that structure and structures?

Ms Marker : We are actually asked for our opinion quite a bit. Having said that, when I went to inquire about some issues with administrative delays, I was concerned that we were not getting through.

Mr WYATT: The reason I am asking is that, when I read through all the submissions, what I do not see is reference to carers of those who have cancer. I read the Victorian submission and there is strong reference to the patient and to ensuring that the patient is aware et cetera, but I do not see in my readings a reference to carers, who are often the partner or a family member, the impact on family in helping them to understand what it is that the person with cancer is going through or what understanding they have of it. What is it like in terms of using your voice to change and affect that thinking?

Ms Marker : Carers are absolutely vital. Many of our members are carers, so I apologise if I made it sound as though it were just cancer patients themselves who were speaking.

Mr WYATT: I understand where you are coming from.

Ms Marker : Carers have equal opportunity to be appointed to many of these positions, and we do have a number of carers who are speaking up in those roles. In some instances, it is more that we are wanting the carers to actually step forward than that they are not given the opportunity if they do.

Mr WYATT: Is there a reason they do not step forward?

Ms Marker : They are too busy looking after people while they are going through it, or they feel a little second class—I hesitate to say those words—

Mr WYATT: It is fine to say that.

Ms Marker : but they feel a little as if it is not them that is going through it. I was a carer myself for my mother-in-law who was 85 when she was diagnosed with breast cancer, and in some ways I feel that it was harder being a carer than it was going through my own three metastatic colon cancer instances—trying to recognise what she did and did not want to know; going along to the medical appointments; and not speaking for her but, if she did not say things, speaking up on her behalf.

Mr WYATT: What would you like the committee to consider in its report in respect of carers?

Ms Marker : Carers are very important at actually motivating people to go to a GP for early diagnosis. That came out in our survey: that many people would be prompted to go and have skin cancer lesions checked out if they were prompted to do so by their carers, by their families—that they would be more likely to do so than do it themselves, particularly men. I think carers have an exceptionally important role with early diagnosis and treatment for men.

Mr WYATT: I just want to explore something else with you. Earlier today, I raised the issue of medical literacy. We talk about Standard Australian English but, in certain occupations and jobs and positions, there is a language that is used that we often do not connect with. How did you find the medical literacy and the explanations around the terms with your illness? Was it sufficient, and did it always come readily in terms of it being offered to you to explain it in plain English terms as opposed to medical and treatment terminology?

Ms Marker : I am perhaps a little bit lucky because my background is in science and in health sciences, but I hear a lot from other people about learning a whole new language. What usually happens is that you are dropped into a cancer diagnosis. It is like landing in a whole new country where you do not know their culture and you do not know the language and you can't read the signs and you have to find out a hell of a lot in a short time because it is vital. So it is a steep learning curve. I think that increasingly the medical profession is trying very hard to improve their communication. In fact, just this morning I and some other consumers were speaking to palliative care nurses from the perspective of cancer patients, and we have a series of 16 similar tutorial sessions with small groups of third-year medical students, trying to get them to understand what it is like—the whole impact on your life, your family, your finances—so that they can realise that we are not always hearing what they are saying, and giving them tips in communication to make sure that they are asking back, 'What did you understand from what I have just said?' so that it is not focusing so much on their performance at giving out information but also about thinking about it from the perspective of the person receiving it and checking what they took in and what they understood of those words or what the implication of that was.

The couple today both heard the same words from the doctor but they drew completely different conclusions. He thought it was going to be fine and she thought it did not sound at all good. In another instance, in terms of treatments, she wanted him to have radiotherapy; he chose not to. It took them a year before she came to accept that it was his right to choose and that he chose quality of life and she wanted him to try everything.

Mr WYATT: How often do you provide support and advice to people in that circumstance?

Ms Marker : We are just people affected by cancer. We are not counsellors. We do not actually provide that as a service, but, if we meet people at events or when we give talks, of course we talk to people and share our experiences. It is about hearing somebody else's story. People find that helpful and they can draw some tips from that.

Dr SOUTHCOTT: The Flinders Centre for Innovation in Cancer has done some work on cancer survivorship. Is that something that Cancer Voices has been involved in?

Ms Marker : Yes. The Flinders Centre for Innovation in Cancer Survivorship Conference was held in February 2013. I was chairing the consumer advisory group that advised on the program from a consumers' perspective. We are already in the planning stage for the 2015 conference. We have pretty regular contact with Bogda Koczwara and the Flinders Medical Centre Foundation, as well as the—

Dr SOUTHCOTT: I noticed the recent obituary of Ashleigh Moore who was involved with Cancer Voices. There is quite a strong link between Cancer Voices and Livestrong. Do you use their materials? How does that work?

Ms Marker : All their material is online. We met with the head of Livestrong, Doug Ulman, when he came to Australia in 2009. There was a Livestrong global cancer campaign that was about eliminating the stigma of cancer, raising the profile and getting grassroots involvement. We have been quite influenced by that philosophy. They have really good resources.

Dr SOUTHCOTT: I agree. They are online and they have resources for everything, it seems.

Ms Marker : Their key personnel are people who have been affected by cancer. In particular, when Ashleigh was first diagnosed with head and neck cancer in 2005, he found those resources and they spoke to him as a young man in a way that many of the other more factual type resources did not. They helped with the emotional understanding of the impact of cancer. The Livestrong Foundation is a youthful foundation. Again, for young people that is really helpful. The emphasis at that time on exercise has been found to be a very valuable contributor to survivorship and to doing as well as you can all through your treatment. We have taken that on board. It is not just about illness; it is about wellness. Cancer Voices is doing a lot to advocate for wellness, right from that moment when you are first diagnosed. What do you call yourself if you do not call yourself a survivor from that point in time and think about yourself as a survivor in terms of doing as well as you can, whatever your prognosis?

Dr SOUTHCOTT: Thank you.

CHAIR: Julie, thanks for coming along today to assist the committee with a different point of view. If you have been asked to provide additional information, could you please forward that to the secretariat by Monday 28 April?

If you feel you have any other information you can forward to us, that would be appreciated, and the secretariat will write to you if we have any further questions. Again, we really appreciate you coming along today and taking the time to give your evidence.

Can I ask a committee member to move that the submission from Cancer Voices South Australia be accepted as evidence and authorised for publication. So moved by Mr Southcott.

Can I also ask a committee member to move that the proof transcript of evidence given before the committee today be authorised for publication, including publication on the parliamentary database. So moved by the Deputy Chair.

I now declare this public hearing closed.

Committee adjourned at 15:55