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Standing Committee on Health - 30/07/2014 - Skin cancer in Australia

AZZI, Dr Anthony, Director, Newcastle Skin Check

NOBLET, Mrs Jenny, Executive Officer, Hunter Melanoma Foundation

[10:31]

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

Mrs Noblet : No, I do not.

CHAIR: 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 contempt of parliament. The evidence given today will be recorded by Hansard and attracts parliamentary privilege. Thank you for your submission. Would you like to make a short opening statement to the committee?

Mrs Noblet : Yes. I would like to speak a little bit about the Hunter Melanoma Foundation. It is a small community based group with one employee that relies solely on donations and its own fundraising efforts for funding. It was formed in the mid-1980s by patients of the Newcastle melanoma unit, with the primary aim of raising funds to improve facilities for the melanoma unit that was established at Wallsend hospital in 1981. This was achieved with the opening of the new purpose-built facility that accommodates breast cancer and melanoma at the Calvary Mater hospital. This was opened in 2001.

The Hunter Melanoma Foundation then focused more on education. Our region has one of the highest incidences of melanoma in the world. The foundation raises awareness of the prevention and early detection of melanoma and also supports research. We currently fund 1½ PhD melanoma researchers at HMRI and we also fund a cancer-care nurse, who is involved with melanoma trials here at Lake Macquarie Private Hospital.

We know the importance of sun protection in early childhood and we visit primary schools with the sun-safe message, basically reinforcing the no hat, no play; play in the shade message. We have been doing these free visits for six years now. We leave each child with a bag, which I have an example of, which contains information that reinforces this message. Four years ago we developed a DVD, which I also have for you, called Don't Get Cut, and that was targeting teens and young adults. This DVD was sent to all high schools in our region, encouraging schools to include it in the year 9 PD health and PE curriculum. This was also part of a three-month media campaign that we had, the message being that melanoma is not an old person's disease. As a follow-up to that campaign, we recently launched 'Look After Your Selfie', once again targeting teens and young adults and asking them to send us their selfie.

Although the incidence of melanoma is almost the same between men and women, the highest mortality for melanoma is men over 50. With this in mind, two years ago we launched our 'Check Mate' campaign, targeting men 40-plus, the message being a 10-minute skin check could save your life, and urging them to have an annual skin check. This skin campaign went to local pubs and clubs, because we thought that was the best area to target men over the age of 40. It included posters and coasters. To local GPs we sent fridge magnets and posters and our pens, and I also have examples of those for you. We also have two Newcastle buses on which we promote the selfie and Check Mate campaigns, and bus shelters and poster boards in the region.

We found that teens and young adults are the most difficult groups to get our message to, and it does not help that high schools do not apply any of the sun-safe guidelines that the primary schools do. We would like to see more emphasis on sun-safe behaviour introduced into high schools, as well as some ultraviolet radiation education included in the science curriculum maybe, so they have a better understanding. We have seen too many young people—people in their 20s—die from melanoma, and there is little value in a high TER score if you are going to be fighting a battle for your life against melanoma in your 20s. So we think this is a really important issue and something that should be included in schools.

One of the other things that we do is to sponsor a GP education course that is run through the Hunter Postgraduate Medical Institute and that is done biannually. That includes all the new methods in early detection and what is happening with surgical procedures et cetera.

CHAIR: That is great, Jenny. Thanks. I really appreciate the work you are doing, particularly focusing on primary schools. You are right: the evidence we have taken is that the hardest group to get the message through to is high schools. Where do you find the roadblock in that area? Is it through the principals or the staff, or is it just the nonlistening of the teenagers?

Mrs Noblet : I do not think that the staff see it as an issue for them. From our point of view, we have very limited resources and so we focus our resources on where we feel we are going to have the most impact. I must admit that we have not really pushed the high schools. I did meet with the head teachers for the PE, health and education curriculum, and one head teacher just said, 'I don't see it as a problem.' As I said, we are not in a position to push that issue because we just do not have the resources, so we focus on where we can have the biggest impact with the funds that we have.

CHAIR: Do you think that maybe the government should suggest to the state governments, through the education department downstreaming to high schools, that that should be an important focus?

Mrs Noblet : Yes.

CHAIR: We have heard evidence that teenagers still have to go out and do sport even when they have sunburn from the previous day, and that they have sport or PT in the middle of the day. So those sorts of guidelines are just not being followed. There is no focus on minimising the exposure to UV.

Mrs Noblet : That is right. This is what our DVD focused on: the fact that it is one of the most common cancers of both males and females from the age of 14 to 29, and people, especially young people and a lot of other people, think of it as an old person's disease, and it is definitely not an old person's disease.

CHAIR: With all these awareness programs you are running, do you gauge which are the most successful? Have you got evidence?

Mrs Noblet : Our Check Mate program targeting men over the age of 40 has been our most successful campaign.

CHAIR: How do you keep stats on that?

Mrs Noblet : We have used local people. We used local people with our DVD for young adults as well. One guy in particular has received a number of phone calls from people who knew him many years ago, who played football with him, and said: 'I saw your ad. It made me go and have a skin check. They found a melanoma that I didn't know I had.' We have had people come into the melanoma unit who have had a melanoma diagnosed and say that that was what prompted them. It is difficult to always gauge how successful campaigns are, and it is things like that. When people come into the melanoma unit they have been diagnosed with a melanoma, and the unit staff always have an initial meeting with them and talk to them about different things, such as their sun-safe behaviour patterns in the past, and that is one of the things they usually say: 'What were you concerned about?'

The most common site for a male for a melanoma is on their back, and it is very, very difficult to check your own back. It does not matter how many mirrors you have; it is very difficult to check your own back. This could be why there is such a high mortality in men over the age of 50, because they do not realise that they have something on their back.

CHAIR: As a not-for-profit organisation not supported by any funding from state or federal government, do you see areas in the skin cancer area where there is wastage or inefficiency, where you say, 'I wish the funding was going into this because we see that as a waste of government funding'?

Mrs Noblet : It is simpler for us because we are in a smaller community. It makes a difference at the grassroots visiting the schools and leaving the children with a bag of information. They get a wristband, a fridge magnet, a sticker and all these things that are going to be a continual reminder for them. We tell them to use their melon and save their skin. I think that has a greater impact on them and will stay with them. So I think there are a lot of things that can be done more at the grassroots.

Mr WATTS: I was having a look at your 'look after your selfies' campaign on Instagram. It looks fantastic. There is a lot of engagement. It made me wonder whether there is a way of sharing those success stories and awareness building with national cancer campaigns and other local networks. It is not something I have seen in my area but it is something that would easily transfer to young our people.

Mrs Noblet : We would be more than happy to share it at a state or national level.

Mr WATTS: But there are no existing structures for sharing success stories?

Mrs Noblet : No.

Mr WATTS: As a not-for-profit, you would not have the resources to do formalised evaluations of your campaign's effectiveness or anything like that?

Mrs Noblet : No.

Mr WATTS: So it is just feedback from people like me looking at it and thinking it looks very successful.

Mrs Noblet : Yes. It is just the feedback we get that gives us an idea of how we are going and what impact we are having.

Mr WATTS: It seems like you have put a lot of the focus of your awareness efforts on building GP awareness. How would you characterise current levels of GP awareness compared to, say, 10 years ago?

Mrs Noblet : It is certainly much better than it was in the past.

Mr WATTS: What are the areas that need to be improved?

Mrs Noblet : I talk in workplaces and people will often volunteer their own information. Quite often someone will say, 'My wife went to the GP three times because she was worried about this lesion and finally they took it off to keep her happy and the results came back that it was a melanoma.' What I would like to see before any lesions are removed is for them to be photographed, because they are all so different. I say to people, 'If I could put a photo in front of you and say, "This is what a melanoma looks like, so if you have something like this on your skin make sure you get it looked at," I would, but they are all so very, very different.' They can develop in something existing on your skin. They can be something new that appears on your skin. People will ask me, 'What do you think of this?' I do not even go there. I just tell them, 'If you are concerned about it, if it has been there for a while, get it checked.'

The message I give to young people is that our bodies are amazing things. Our immune systems will heal any cuts, knocks, scratches or bruises, but if something is still there after four or five weeks and is not healing then there is a reason why and so they need to get it checked out. Because melanomas look so different, it would help in education, especially in GP education courses, if there could be photographs to look at. I know Dr Sillar, who was one of the people who initiated the melanoma unit, would show slides to young medical students and ask, 'Which one do you think is the melanoma?' They are very, very hard to detect and so I would like to see them being photographed beforehand. When they come to the melanoma unit they have already been removed. People can take their own photos. It would be good if they came along with a photo of what it was beforehand.

Mr WATTS: You think that is relatively rare as a current practice?

Mrs Noblet : Some of them do. I think the skin cancer clinics tend to. I know Dr Reid who works with the melanoma unit and also has his own skin cancer clinic will always photograph them.

Mr WATTS: We have heard some calls for a national register collecting this kind of data. Do you think that would be a worthwhile—

Mrs Noblet : I think having a photograph of it in the patient's file would be really good. We had a boy of 15 come to us a couple of years ago. He was part of our selfies campaign. He thought he had a mosquito bite on his shoulder because it was itchy. It was his dad who said after about four or five weeks, 'Daniel, there's something wrong here because it is still there.' It was only a superficial melanoma. The GP only removed it because his dad was anxious. He did not think it was anything to worry about. Nobody has a photo of that; nobody knows what it looked like.

Mr WATTS: Anecdotally it feels like you are suggesting that some GPs are not taking this seriously enough?

Mrs Noblet : When I mention Daniel, he had brown hair, brown eyes, medium brown skin, did not sunburn, did not have a lot of moles on his skin, had no history of skin cancer melanoma and he was 15 years old. From the GP's point of view, he did not look like he was high risk and someone you would think, 'Yes, this could be something to worry about.'

Mr WATTS: That training in identification becomes more and more important.

Mrs Noblet : Yes.

Ms HALL: How many volunteers do you have working with the foundation?

Mrs Noblet : It varies. Our committee obviously is all volunteers. We have nine on our committee. The membership is $11 and most of the membership is through patients at that melanoma unit. They can indicate whether they want to be a volunteer or not in various areas. It does vary but there is probably a small, core group of about 10 whom I can call on to help me pack the bags for the schools. That is one of the things that is quite labour intensive—organising to go to a school, especially when you have a school like St Therese's that has 600 pupils and you have to pack 600 bags to take to that school.

Ms HALL: Do you have a support group that runs from the foundation?

Mrs Noblet : Yes, there is a melanoma support group. One of our committee member runs that. She is the facilitator and she is also involved with Melanoma Patients Australia, and that is where she did her facilitating course. That is held bi-monthly at the Cancer Council and they provide the rooms for them to meet.

Ms HALL: Is the linkage to that support group effective?

Mrs Noblet : It is promoted through the melanoma unit. I think it is effective. Lisa is always available for people and she would probably be the one who would be able to speak to that more than me. It is a valuable resource and it varies as far as the number of people who come to it.

Ms HALL: I have had constituents who have contacted me about the support group and the foundation. In high schools, there are no covered outdoor learning areas and there are the relationships, the peer pressure and the general attitude of teenagers is not conducive to sun safe campaigns and messages. The selfie is a unique way and so is social media. Has the foundation investigated using social media and linking in to young people through social media to a greater degree?

Mrs Noblet : That was the idea of the selfie. That was the starting point for us. I think we have about 700 or 800 followers on Instagram that we can keep in touch with.

Ms HALL: You also have a Facebook page too.

Mrs Noblet : Yes.

Ms HALL: How many followers do you have there?

Mrs Noblet : I have no idea. We have someone who looks after the social media. I am not a social media person. I have never done a selfie. I do not Instagram. I do not Tweet. I am not even good on Facebook.

Ms HALL: It is 778, so around the same as on Instagram. Maybe the foundation could give some more thought to the social media and linking with young people in that way.

Mrs Noblet : Yes.

Ms HALL: At high schools, there is no covered outdoor learning areas. Do you think that a recommendation from this committee around the need for provision of shade in high schools would be good?

Mrs Noblet : I think that would be a good idea.

Ms HALL: What other ideas do you and the foundation have for linking to high schools? I gather when you go to visit schools, you visit primary schools.

Mrs Noblet : We just visit primary schools. As I said, we developed the DVD which we put out to schools three years ago.

Ms HALL: Year 9.

Mrs Noblet : I don't know whether that is still being used in the schools. Later this year we are going to be following that up with high schools and see whether it is still being used. We are involved in Pit Stop, but that program is only in the Upper Hunter. They don't seem to do it in the Newcastle local high schools, and we are involved with that, which is year 9.

Ms HALL: What about Surf Life Saving? We are going to hear from them later.

Mrs Noblet : I think surf culture is one of the big reasons why we have such a high incidence in our region. We have instigated a number of things with Surf Life Saving, but I think they have other issues and they don't see sun protection as a priority.

Ms HALL: We will ask Surf Life Saving about whether they see it as a priority later. What about sporting groups?

Mrs Noblet : Another area is definitely sporting groups, and I know a lot of clubs, especially bowling clubs, have started to put shades over the bowling greens and things like that. I quite often get people calling me, saying 'The bowling club is doing this and this.' I tell them that we cannot go to a bowling club and say, 'You need to make sure your bowls are going to be played from three o'clock in the afternoon.' It is up to the members to say, 'I'm not going to be playing bowls at 12 o'clock in the middle of summer, because it is too hot.'

Ms HALL: Cricket clubs? Little Athletics and all those kinds of clubs?

Mrs Noblet : That are doing sports in the middle of the day—yes.

Ms HALL: And they have young people involved in them. Does the foundation actively engage with them?

Mrs Noblet : No.

Ms HALL: That is because there is only one employee.

Mrs Noblet : We just don't have the resources to do that.

Ms HALL: Where do you get your funds from?

Mrs Noblet : Local community, donations and our own fundraising efforts.

Ms HALL: You were talking about the incidence of skin cancer in the Hunter. Would you like to elaborate on that for us? There is a very high incidence—how does that relate to the rest of the state; how does it relate to the rest of the country? I am sure you have got those figures.

Mrs Noblet : From what I understand, it is similar to what it is in Queensland, and both are higher than Australia as a whole. Why do we have such a high incidence? I think our beaches, our lakes and you just have to look at a day like today and we are in winter. We have a very mild climate. One of the areas that there is not enough emphasis on is UV levels. We talk about what the temperature is going to be but not the UV level—and we talk to young children about the UV index and how important it is to know what it is. We are told that you should be protecting your skin for anything over three. On a day like today it is probably four. In winter it is two but it is now going to gradually increase until it is quite high in summer.

Ms HALL: It was put to us in Perth that there would be a benefit in every school being—it is three today, by the way—able to measure the UV index at their school.

Mrs Noblet : In Newcastle we actually have one of six live feeds in Australia. The Hunter Melanoma Foundation bought a UV monitor in the mid-nineties. That sits on the roof of the Mater Hospital and gives a live feed to radiology in Victoria. If people go on to the Bureau of Meteorology website, the BoM website, they can find out what the UV level is now in Newcastle.

Ms HALL: Yes. It is 2.3 now and it is forecasted to be three during the day.

Mrs Noblet : That is something that would be really important, especially in high schools. We go to the Upper Hunter and visit schools up there as well. I was up at Merriwa before Christmas and on one day it was 36 degrees and the UV was 12. It was 27 degrees the next day and the UV was still 12. People do not realise that the temperature can change but the UV stays the same. It is the UV that does the damage.

Ms HALL: You talk about the Upper Hunter, and that is not close to the surf or the lake yet it still has that very high UV reading, which would impact on that population.

Mrs Noblet : Yes.

Ms HALL: Do you notice any difference between the Upper and Lower Hunter?

Mrs Noblet : No. The melanoma unit keeps a database of information but I do not have that information at hand.

Ms HALL: What does that database include?

Mrs Noblet : All the information that people give when they are interviewed on their first visit to the melanoma unit.

Ms HALL: Do you think that would be useful for the committee to get an understanding of melanoma?

Mrs Noblet : You would have to ask the melanoma unit. That is something that would have to come from the melanoma unit. But, yes, it probably would be useful.

Ms HALL: Maybe the secretariat could follow that up with the melanoma unit.

Mrs Noblet : It would include where the melanoma was, the depth of the melanoma and other information.

Ms HALL: That would be good. You said that there is a melanoma nurse at Lake Macquarie Private Hospital.

Mrs Noblet : The cancer care coordinator.

Ms HALL: A cancer care coordinator?

Mrs Noblet : The coordinator for the melanoma trials. We fund her. She works one day a week with Professor Hersey. He does the melanoma trials. She is the cancer care nurse for the people who are involved in the trials.

CHAIR: As you know, every government has limited funding. But, if the government was to direct funding into certain areas for skin cancer, would you say that a database would be in preference to research or would you think research would be in preference to a database and what areas of research would you talk about?

Mrs Noblet : I do not know whether I am really in a position to comment on that. Professor Burton, who went to Victoria a number of years ago, always said that any research that was done or any statistics that were derived had to come from pathology, because that was where you would get your true result from. Lesions were sent to pathology and that is where you would find what the number of melanomas or skin cancers et cetera were. I think there is a lot of funding, and I think research is well funded. There is a lot of great research that is being done. For melanoma, in particular, there have been some really good breakthroughs in the last 12 months with the different drugs that are showing an incredible result.

CHAIR: I have one last question, and I would like to recall one of the representatives from Newcastle Skin Check, because I would like them to answer the question as well. The question goes back to your reference with regard to taking photos of melanomas before they are excised. Do the characteristics of melanomas, BCCs and SCCs lend themselves to a database—like a fingerprint database—that could be used on a national basis, if there were a national register?

Dr Azzi : No, it does not lend itself to a fingerprint. There are specific features for melanoma that, when you do dermoscopy, you look for those specific features—and they could be in varying amounts or in different combinations in different lesions—and use that information in combination with a few other bits of information that you have from looking at the patient and looking at the rest of their moles in general.

If someone has an individual lesion that looks so abnormal and looks different to everything else—the so-called ugly duckling that we talk about—that is a concern. But if every spot on their body looks exactly the same, it does not matter how bad it looks they cannot all be melanoma. So you have to look for the different lesion. There are atlases that people get when they buy a dermatoscope and it goes through all the different features of melanoma et cetera. There are a whole lot of lesions that you can diagnose with a dermatoscope—not just melanoma.

CHAIR: How thick is that book?

Dr Azzi : It is probably about 150 pages and it is usually full of pictures.

CHAIR: I was thinking that, if you have got something you suspect is a melanoma you could put it into a software program that says, 'It looks exactly like this.'

Dr Azzi : There are software programs that actually do an analysis. You take a photo and the software will do an analysis of the likelihood of this lesion being a melanoma. There are new programs being developed at the moment with machines that measure the electrical impedence through a lesion to give you a likelihood of whether or not it is abnormal. There are other machines that look through images and slice through the skin as if you are putting it under the microscope so that you can actually look at the cells. There is one in development at the moment at the University of Queensland. I do not know the exact details but it is another system where you apply an instrument to the skin and it looks at the likelihood of this being a melanoma.

CHAIR: Jenny, was your idea of taking the photos for data collection in general?

Mrs Noblet : More for—

Dr Azzi : Education.

Mrs Noblet : education and also for the doctors' own information and to be able to put that in the file. As Dr Azzi would agree, sometimes they do not look like a melanoma.

Dr Azzi : Exactly. That is why we take thousands and thousands of photographs. We probably have 10,000 photographs in our database at work of lesions from BCCs, SCCs, melanomas and things that we did not think were melanomas. From an educational point of view and a feedback point of view, it is the only way to go. Not only do we do it for lesions that we excise, we also do a lot of monitoring of lesions. With something where you think, 'I don't think it is that bad but we'll take a photo,' we will check it again in three months or six months. We put the images up side by side on the computer and we can compare the images and see whether there is any difference. As soon as there is a difference we know that it needs to come out.

I know you have been talking about numbers. I just called up my database—the SCARD database—that we track all our lesions with. I just called it up for the last two years. In the last two years I personally had 78 in situ melanomas; 20 invasive—less than a millimetre; six greater than a millimetre; and two metastatic melanomas. That is over 100 melanomas in two years that I have personally picked up, When you are looking at where on the body these are, I can give you a breakdown on every part of the body: one on the nose, three on the ear, 12 on the face, two on the scalp, eight on the neck, nine on the shoulder, two chest, two abdomen, 38 on the back, 10 on the arm, eight on the forearm, one on the hand, four on the thigh, five on the lower leg and one on the foot.

CHAIR: So the majority of the upper body and trunk.

Dr Azzi : The advantage of using the SCARD database is you can get an instant breakdown of all your lesions, not just melanomas. We have it in for BCC and SCC.

CHAIR: Thank you for coming in today, Mrs Noblet and Dr Azzi, back to table for us. If you have been asked to provide additional information or if you feel you have further information that would assist the inquiry, please forward it to the secretariat by 13 August. If we have any further questions we will send them through the secretariat, in writing, to you. Thank you coming; we really appreciate your submission and time.

Mrs Noblet : Would you like me to leave that information with those—

CHAIR: That would be great. Ms Hall moves that it be accepted as an exhibit. Thank you.

Proceedings suspended from 11:05 to 11:27