All fired up

[#1]

Hi everyone, I work at CCNSW in the policy and advocacy unit. It is good to see so much discussion here. I think you make a good point craftyone, my work brings me into contact with many patients and survivors and only a few times have I met someone who has, or had bowel cancer (actually I should clarify that I've only met a few people who have been comfortable , or willing to openly discussing it, I may have met others and not even known) I'm encouraged by the response to the the current campaign, however, there's been around 12,400 sign up's nationally which shows that the bowel cancer issue is getting on the radar. Lets hope the energy continues to rise....... Kelly

[#2]

Hi Sorry all for the silence, been up in FNQ on hols. Beautiful! Did you win? Of course, mind you I would write that whatever your answer:)I guess you blew my cover somewhat in trying to get people to think about what's their driver. I think cancer experience is often going to be the main driver. In advcoacy terms the power of the personal (experience) can often bridge that disconnect between 'an issue' stats/info/cause and us as people or you as a person. R

[#3]

Hi Sailor Again sorry for taking so long to respond. Thanks so much for sharing your insights and ideas. Will respect your ask that we don't quote you. What are my reasons for getting involved in Advocacy? My personal drivers are around equity, social justice and supporting communities to speak out and play an active role in civic society. Transport - On a personal note as a Brit I still find the size of NSW let alone Australia mind boggling. We've done some work to chip away at the 'tyranny of distance' that regional and rural residents face. Cancer Cocunl NSW with allies including NSW Farmers Association, the Country Women's Association, NSW Council of Social Services, Cancer Voices NSW, the Leukaemia Foundation NSW, the Hepatitis C Association, Muscular Dystrophy, Bourke Aboriginal Medical Service, New England Renal Support Association and Epilepsy Action ran the less distance for assitance campaign. http://www.cancercouncil.com.au/editorial.asp?pageid=1918 Also, work quite closely wwith NSW Council of Social Services and Community Transport Organisation e.g. joint reports http://www.nswcc.org.au/editorial.asp?pageid=2377 Low socio economic groups - I agree that this is not sufficently addressed. In policy docs and submission CCNSW often makes specific reference to equity of access whether this be distance disadvantaged, financially disadvantaged etc. Indigenous and CALD groups - Again you're spot on with the point you make. As an organisation have started to take some more substative steps e.g. In partnership with the Aboriginal Medical Health Research Council and a steering committee of Aboriginal community memebers recently ran Advocacy Training for Aboriginal People. Thanks again for sharing your thoughts. Rory

[#4]

Hi Craftyone Thanks for sharing your experience and thoughts. And no I don't think your first statement was too long. I apologise for being so tardy in my response. It is tough to get the media excited about bowel cancer and the general lack of awareness in the communit is diasapointing as you say. Hence the whole Make a Noise! cmapaign (forgive the plug) to Get behind bowel cancer http://www.getbehindbowelscreening.com.au/ Rory

[Sailor]

Hi Rory No Quotes - usually I end up any post I make with a quote from a sailing or sea theme - so 'no quotes' means that I haven 't added a quote. Feel free to quote me as much as you like. This last weekend there was some advocacy training and this was a list of some principles that were derived In advocacy you are working on behalf of others - not dealing with your own issues. Your most powerful tool is your own story - use it to illustrate the issues you are addressing on behalf of others. Do your homework before you get on your white horse and load the six shooter - get the facts, the evidence, the knowledge before you take any action. Forget the white horse and six shooter - you’re not the hero or out to save the world. Seek partners in any advocacy action - a band is heard more readily than a solo player. Activism can be fun but building partnerships works better. Using a problem solving, rather than conflict approach, draws people in and builds relationships. You don’t always have to win – “win/win” rather than “win/lose” builds stronger relationships. Know why you are an advocate and what drives you, so that you know where the lines in the sand are drawn. What we are wanting is sustainable change - big change is made up of a lot of little changes . Because you are not seeing results does NOT mean nothing is happening - in good advocacy a lot happens behind the scenes. Credibility and influence are something that you earn. I commend them to all. Cheers Sailor

[#6]

Hi Everyone, What gets me fired up? I'll tell you. This may not sit well with alot but here are my main issues:- a) The way medicine is practiced here. I can tell you there is a vast difference between the way cancer and other terminal illnesses are approached elsewhere. The medical profession and govt don't seem to be proactive about a) testing b) catching cancer in its early stages, c) providing aggressive treatments in a timely manner, d) educating the public on the importance of testing and the symptoms that they should be seeking professional advice on. This is costing many lives in itself. I see other issues:- b) The ratio of specialists/doctors to patients is shockingly inadequate, if your a public patient you are going to wait weeks, or even months and this can in quite a few cases be too late to take action in a timely matter. c) lack of funding, focussing care on the young and deeming the elderly a lost cause. d) but my biggest dissapointment and shock is the policies that seem to guide the looking after of the terminally ill and elderly in this country. Palliative care is my final issue, and I can tell you not all facilities are the same, I have witnessed patients left soiled for hours, deprivation of food and liquids, because these patients are zonked on morphine and they have been left with cold trays and when not touched simply taken away. Not only this but the legality of do not resusitate orders and the lack of education and information passed onto family members. I could go on and on. But this is why I've decided to write a book, so others didn't find out like I did, and to talk to those that want to see a vast improvement in services, hope is no longer a word used in Palliative Care and this is in my opinion fundamentally wrong.

[Sailor]

Dear PS I can not let your statements go unchallenged, but I do realise the risk that we will get into fruitless arguments. So wherever possible I will quote sources of information. I think it would be a good idea if you were to do the same. I cannot comment on palliative care, it is not something that I have been involved with either personally or in any other capacity. I do take exception to your first paragraph. I have good professional knowledge of the way cancer is practiced elsewhere and here and personally I am very glad that I was treated for my cancer in Australia. I received world's best practice cancer care and for my second round, treatment that was available nowhere else in the world. At the time I was regularly in touch with consumer groups in North America and they were amazed at the standard of treatment available here. My first round of treatment was as a private patent in a public hospital, my second round as a public patient in a public hospital. There was no difference in the treatment or care I received. That is my personal experience and therefore anectdotal. Evidence. Australia's survival rates are amongst the best in the world - see references on Cancer Australia's website www.canceraustralia.gov.au. We are among the top five in the world. That doesn't say that we can be complacent as there are statistically significant differences between rural and metropolitan areas and across the socioeconomic divide. However, the differences are not huge. For example: 5 year survival in eastern Melbourne is 64% overall and in Western Melbourne 56% ref: Cancer Survival Victoria 2007. The medical profession, nursing, allied health and consumer organisations are working together to address these issues. The Minister yesterday released a statement that five regional cancer centres are now involved in conducting clinical trials. In the last budget $560M was made available for rural and regional cancer centres. The Federal Government now fund thirteen Cooperative Oncology Groups to conduct clinical trials of aggressive new cancer treatment - four of these groups are new in the past three years - source of data - canceraustralia.gov.au. If you read government policy in all states, you will find early detection and prevention are major priorities and the Victorian Government in its cancer action plan has set targets for achieving these - www.health.vic.gov.au/cancer. The Cancer Councils in all states have been active in sending out the messages on testing , symptoms and action to be taken. The focus on the young and ignoring the elderly I really take exception to. Apart from children, the largest group to have benefited, as indicated by increased survival, is the over 60's. It has been realised in the last few years that a group missing out have been adolescents and young adults and so there has been extra funding to this group - done on the basis of need, not neglecting another group. If you need references for this look at those on the Cancer Australia website I won't comment on palliative care - but I will comment on some aspect of terminally ill. It was consumer groups in this country that achieved a change in the law regarding access to superannuation. Can I suggest, that you become involved with a consumer organisation and work to achieve change. I can be very effective. Cheers Sailor If you want to build a ship, don't drum up people to collect wood and don't assign them tasks and work, but rather teach them to long for the endless immensity of the sea. Antoine de Saint-Exupery

[#8]

Dear Sailor, Thank you for the thought provoking response. I too, have alot of experience with the healthcare in the United States, I lived there and my regular physician was voted the best physician in the US in 2005. I am also 100% sure that if my father had been diagnosed and received treatment from the US he would still be alive today. Unfortunately, against my advice and timing, my father received his treatment here. So we may agree to disagree even though I appreciate your opinion and the items you have quoted. I would not pay much heed to those survival rates simply because you need to compare the populations of Australia vs United States and the fact that many choose not to have insurance. My insurance was via my husband's medical plan with his employer and was exceptionally good, much better than for the highest level of cover I pay for with MBF here. I'm not sure what consumer groups you have been in contact with, but currently, the United States is having a huge debate and a big outcry from citizens who realise what a public healthcare system will do to their high standard of healthcare and its obvious even to the majority of Americans that theyre standards will slip once govt are involved. They see the nightmare that is the NHS, Canada and Australian healthcare. That's another argument altogether. Again, I agree to disagree because I've received expert treatment for the most minor of things and doctors are accountable should they not diagnose a disease as soon as a patient presents symptoms. For example my father in law had a fall, after all testing which was done promptly they discovered he had water in the brain and went into surgery a week later. He never presented with prostate cancer symptoms at all, but because of his age group, assessing certain risk factors they decided to test him for prostate cancer, did a PSA test, realised he had a high PSA, unlike what would happen here, they advised the only way to confirm prostate cancer was a biopsy, and they performed one, even if he did NOT present with any prostate problems at all. Thankfully the test was negative. Here, my father went to TWO doctors who dismissed the blood in the urine 5 years ago, upon my fathers insistance of a specialist, they did a biopsy a month later and discovered he was stage 3 prostate cancer. Believe me, he isn't the only one here who has had this experience, what I've seen in the past 5 years is an eyeopener. It's well known fact that 90% of clinical trials as well as newest treatments and medication are not brought to Australia first, but are tested and used upon others successfully for years in Europe and the United States before they are available to Australians. Secondly, the United States for example are VERY proactive when it comes to testing for and the management of cancer, because unlike is practiced here, they would rather cover their behinds than get sued. Therefore they are very proactive to test and diagnose with their patients, I would only wish the same standards would be applied here. Also you don't wait to see a doctor or specialist and aren't left in a queue for surgery. My insurance was that good. Even my medications were covered and all for a $15 co-pay when I saw a doctor. I never once went into a full doctor's surgery where I had to wait 2 hours to see a GP. Palliative Care is something thats not discussed very well, and should be. I want to be a part of changing what is happening here. Alot of it would bring you to tears if you saw what I'd witnessed in a few facilities. Not good enough. I can tell you that there are many who go to the US for treatment, but not too many of the world's population come to Australia to get treated for cancer.

[Sailor]

Dear PS We could go on until the cows come home citing personal stories and experiences. They are valuable. We could also go on doing values based comparisons of the US healthcare system and the Australian. Not a lot can be achieved. I suspect that our differences are values based and therefore not reconcilable. I did invite you to present evidence for your assertions. I suggest that you might do so. It will make you case more powerful - look at the third of the principles of advocacy that I posted a few days ago. I also think that you need some evidence to back up your assertions about clinical trials in this country. On a personal note, I was diagnosed with aggressive prostate cancer after a visit to my GP. I had no symptoms, but he did a check up as routine healthcare. I didn't have to threaten to sue my health insurance fund to get experimental treatment, as many consumers in the US have. I see no further point in continuing this discussion. I responded as I do not like the Australian healthcare system being put down and I am very aware of the deleterious effects of thinking that things are better overseas and that you will, by paying lots of money, get treatment in the US or elsewhere that is not available here. Regards Sailor Duty is the great business of a sea officer; all private considerations must give way to it, however painful it may be. Horatio Nelson

[#10]

Dear Sailor, Thank you for the response. I won't defend the health system here that's for sure. But I will say there are some fantastic doctors here, but few and far between in my experience. Yes we have different expectations and values when it comes to medical treatments. I'll leave that where it is. But with regards to clinical trials for prostate cancer I can only tell you that trials for Provenge (not here), Aribaterone (came rather late to Australia). The FDA was tough on Provenge vaccine, but their most recent trials in the US have proved successful and I suspect this will be up for FDA approval in the not too distant future. Here I quote:- "Then we have denosumab, a new targeted therapy to stop bone loss, increased bone density and prevented spinal fractures in men receiving androgen-deprivation therapy for prostate cancer. The study was a Phase III trial supporting the application for approval from the Food and Drug Administration (FDA) filed by Amgen Inc., the primary sponsor of the NEJM report. Since the PCF was founded in 1993, there has been important growth in the number of new drugs and clinical trials for prostate cancer. Sixteen years ago, there were no new drugs in the development pipeline and only two clinical trials in process; in 2008 there were more than 30 drugs in development and over 60 clinical trials in process. Abiraterone, ipilimumab, MDV3100 and provenge are among several other promising new drugs that were supported by PCF funding and are now either in clinical trials or awaiting FDA approval. Ipilimumab and provenge are both immunotherapeutics that have been shown to stimulate the body's own immune system to fight cancer." One can only wonder when these developments will hit our shores, I know for a fact that Aribaterone commenced earlier this year in Australia after a couple of years in the USA. The sad thing is you won't see a possible Provenge trial here until mid to late next year if you're lucky. On a side note, sorry that you are suffering from aggressive prostate cancer, my father passed away two weeks ago from a procedure that was a spinal block and I won't go into anymore details but it wasn't the cancer that killed him. But he was in the terminal phase. And I say a prayer for you that you won't go through what he went through. Despite our differences, I wasn't trying to piss you off, but share my experiences and points of view, I wish you the very best.