Cancer Council SavingLife 2015 campaign messages to the NSW Premier

Messages to the Premier

cancercouncil.com.au/savinglife

Aboriginal population, both Aboriginal and Torres Strait Islander People, are referred to in this document as ‘Aboriginal’ in recognition of the fact that Aboriginal people are the original inhabitants of NSW.

2 | Messages to the Premier

Contents Foreword

1

Messages to the Premier

3

Tobacco Retail Reform

31

Increased Aboriginal Workforce in Cancer Services

39

No Chemotherapy Co-payments

48

Coordinated Cancer Care

57

More Palliative Care Services

63

Other Messages of Support

74

1 | Messages to the Premier

Dear Premier, I’m pleased to present to you these messages from the NSW community. Early in 2014 we asked our community to help finalise our Vision for Change – prioritising the issues that we should present to the State Government for action. When telling us what solutions would make the biggest difference, community members from across 89 State Electorates also took the time to send you a message, and those messages are contained for you in this book.

Over the past six months, community members across NSW have been taking action to make sure that the politicians of the next Parliament understand the need to reduce the oversupply of tobacco in the retail market; ensure that patients receive chemotherapy for free; increase the Aboriginal workforce in cancer services; provide for co-ordinated care for cancer patients and their families; and improve access to palliative care.

I know that fixing these issues will change people’s lives. One story in particular has stayed with me since I heard it just a few months ago. It’s about a woman who couldn’t afford to pay the required co-payment for her chemotherapy, so instead she had been hiding the bills under the mattress of her hospital bed. She was too embarrassed to tell her family that she needed help meeting the costs. This is just one of many stories of hardship affecting cancer patients in NSW. Our Vision is for a NSW where this woman would be able to focus on what is most important for patients – simply getting better.

Solutions to these problems are within reach. Our Vision for Change provides you with concrete opportunities to address these issues and make a difference to lives of people in NSW.

I also know that action to fix these issues would be welcomed by the community. Already, members of our community have collectively had over 90 meetings with state election candidates about these issues. Our community have spoken to candidates from over 50% of the electorates in NSW and have generated media coverage of the issues in our Vision for Change over 100 times. You’ll see some photos of meetings with coalition MPs, supporters within the community and some of the media coverage in the coming pages.

I hope that after reading these messages you agree that we need the changes suggested, and take action to reduce the burden on cancer patients, and the retail availability of tobacco in the community.

Yours sincerely, Jim L’Estrange CEO 1 | Messages to the Premier

Libe ral MP B a rry O’ Fa rre ll & B arb M ottra m

Libe ral MP R obyn Pa rke r

Libe ral MP An dre w Cons ta nc e

Libe ral MP B a rt B as set t & Elle n He ga rty

Libe ral MP Ch arles Ca usic e lli & An dre w Pe nma n

Libe ral MP K ev in Co nnolly & Nic ole Winra m

Libe ral MP G a re th W ard

Libe ral MP G e off L ee & LI B Can dida te

Libe ral MP S tu art Ayre s

Libe ral MP L ee Ev an s

Libe ral MP G a brie lle Upton & Jamie S ey mou r

Libe ral MP M ark S pea k man

Libe ral MP Ton y Iss a & W en dy Wa tso n

Libe ral Pre mie r Mike Ba ird

Libe ral Pre mie r Mike Ba ird

Na tiona ls MP Ada m Ma rs ha ll

Na tiona ls Ca ndida te K ris B ea vis a nd Art B ea v is

Na tiona ls le ade r M P Troy G ra nt & Mel Tre th owa n

Libe ral Pre mie r Mik e Ba ird

Na tiona ls MP John B arilaro

Na tiona ls MP Ke vin Hum phrie s

2 | Messages to the Premier

Su pporte r from More e

Dear Premier

Three years ago on the 23rd of November I lost my beautiful Mum to pancreatic cancer. She was just 62 years old and looking forward to retirement. I watched my Mum fight with ever part of herself to beat this horrible disease but it was too strong and she lost her battle. My Mum was fortunate enough to have private health insurance so was able to access excellent services to help her with her fight, but she saw first hand that many others were not as fortunate as her. People who didn't have access to services like she did. People from all walks of life deserve access to life saving medications such as chemotherapy without having to find the money for co-payments, they deserve better access to cancer care centres to help them on this horrible journey and more palliative care services so they can die with dignity. We owe this to all Australians fighting this terrible disease and those we have lost, like my beautiful Mum. — Family member/friend of someone with cancer, Heathcote Electorate

3 | Messages to the Premier

Dear Premier Watching my mother go through a diagnosis and treatment was eyeopening. We are lucky, we're in metropolitan Sydney and that the frequent trips for treatment and visiting wasn't too arduous. I feel very much for those not in such a situation, or where financial concerns block their treatment.

Imagine the mental turmoil. What was amazing in the radiotherapy waiting room, was the positivity and the laughter. Such spirit from those facing their mortality. How about we reduce how many people need that lounge. Let's reduce the opportunity to develop cancer from known (and legal!) carcinogens. — Family member/friend of someone with cancer, Cronulla Electorate

Dear Premier Please increase palliative care services and no co-payment for chemotherapy drugs. We have a great responsibility to adequately support these vulnerable people with essential care and services in their hours and days of greatest need. — Primary carer, Gosford Electorate

Dear Premier

As a six year survivor of lung cancer (a non-smoker), I agree with the Cancer Council's lobby for more support for the treatment and prevention of cancer, especially the tobacco issue and more palliative care facilities. —Has/had cancer, Lake Macquarie Electorate

4 | Messages to the Premier

Dear Premier There continues to be disparity in the services offered to cancer patients either because of location outside a capital city or due to the nature of their cancer. Many services are poorly funded in regional areas or simply not available, causing hardship to many, for example in my region those requiring palliative care or seeking lymphoedema treatments. Furthermore, it is often difficult to be aware of what options could be made available to you as there is not a coordinated individual patient plan. Different cancers effect people differently and differing levels of support are available depending on the type of cancer a patient has. This needs to be addressed to provide equal opportunities for all cancer sufferers to receive the best possible care and chance of recovery. —Has/had cancer, Terrigal Electorate

Dear Premier

Please ensure that your government listens to the needs of cancer patients in NSW through the advocacy of the Cancer Council and works to provide affordable palliative care, health related-transport and accommodation services for all cancer patients and support for their carers. — Family member/friend of someone with cancer, Vaucluse Electorate

Dear Premier Why are patients suffering from cancer punished by reduced palliative care services, particularly no hospice in rural Wagga Wagga. The high costs of treatment and health related transport, accommodation issues for rural patients needing to travel for treatment. — Primary Carer, Wagga Wagga Electorate

5 | Messages to the Premier

Le a nne & Sh an non from Ce ssn ock

Ca ndidat e Kris B e av is an d Art Be a vis

Dun ca n a nd Man ly MP Mik e B aird

6 | Messages to the Premier

Dear Premier The Cancer Council NSW is right. The five issues of most concern are: • • • • •

increased Aboriginal workforce in cancer services, tobacco retail reform, no chemotherapy co-payments, coordinated cancer care and more palliative care services.

You can take action. You have it within your power.

— Concerned community member, Willoughby Electorate

Dear Premier

As a supporter of the Cancer Council NSW, I would like to bring to your attention the matters they have been addressing to make more people aware of the effects of cancer in our local communities. I personally would like to use this opportunity to point out our Vision for Change, which outlines how the state government can help beat cancer. We've had lots of great activity generated about the campaign - including many local events and meetings with MPs. Now we want to take our campaign to the top! Will you help support the NSWCC with this Vision?

— Has/had cancer, Dubbo Electorate

Dear Premier Increase Aboriginal workforce in cancer services in Shoalhaven wich has three large Aboriginal groups.

More action is also needed in these areas: • • • •

Tobacco Retail Reform No Chemotherapy Co-payments Coordinated Cancer Care More Palliative Care Services with actual people involved in home visitation, with 24hr care.

— Family member/friend of someone with cancer, Kiama Electorate

7 | Messages to the Premier

Dear Premier Please take action on: • • • • •

Increased Aboriginal workforce in cancer services, Tobacco retail reform, No chemotherapy co-payments', Coordinated cancer care and, more palliative care services.

— Has/had cancer, Strathfield Electorate

Dear Premier

I completely support the current campaign of Cancer Council NSW in the five areas on which they will be asking you and your government to take firm and clear action. This is important to people, real people, voters, and we want you to take this really seriously.

— Has/had cancer, Ballina Electorate

Dear Premier I commend to you each of the items that the NSW Cancer Council has identified as needing significant action from the NSW Government.

— Concerned community member, Wagga Wagga Electorate

Dear Premier I am writing to you to share my concern in the ways cancer is tackled. May I respectfully ask that your government provide more palliative care services and ensure there are no chemotherapy co-payments as these are an extra stress/burden on patients who have a likelihood of dying. Tobacco is a big cause of cancer and reform of the retail of tobacco would really help. With Aboriginal people suffering from cancer, an increase in the Aboriginal workforce in cancer services would really assist our First People. With medicinal cannabis being of great assistance to patients with cancer, I urge you to legalise medicinal cannabis for patients with cancer. This assistance can help alleviate the horrific pain. A veterinary surgeon would not be allowed to allow an animal to suffer the way cancer patients do.

— Family member/friend of someone with cancer, Oxley Electorate

8 | Messages to the Premier

Dear Premier

My husband has been battling cancer now for 5 years, he has his ups and downs usually around therapy renewal but as his therapy only has an effective life of 10 years he has begun questioning how we will cope if the incoming Government members do not take proactive action in the overall treatment of this insidious disease, particularly in relation to home palliative care. I ask that you present the Cancer Council's five issues to your Party Room with your endorsement to adopt as policy for your next term thereby ensuring an effective united front in patient care and well-being by State health. — Primary carer, Port Macquarie Electorate

9 | Messages to the Premier

Dear Premier Cancer Council NSW are asking you, as Premier of this State, to recognise and act in five areas of critical importance for cancer treatment, care and prevention. In addition to the imperative of improving human health, action in all these areas will bring significant economic benefits to this State.

— Family member/friend of someone with cancer, Upper Hunter Electorate

Dear Premier

Please ensure your Government takes seriously the requests of Cancer Council NSW in the five areas of action enunciated in their correspondence, and to rightfully pledge adequate funding to address these measures that can affect every citizen of NSW whether they are of voting age or not. These serious matters should be above politics to properly manage all associated risks to ensure the ongoing health of all NSW people.

— Family member/friend of someone with cancer, Heathcote Electorate

Dear Premier The proposals put forward by the Cancer Council are, in reality, quite modest.

• •

•

•

•

Improved availability of palliative care will help people to die with dignity and assist their loved ones in the process.

Practical measures to discourage smoking are imperative. It bemuses me that even with plain packaging and products being kept out of sight, the major supermarkets give priority to a tobacco purchaser over other customers waiting in line on the other side of the designated counter.

Coordination of care in this day and age is a 'no brainer' in terms of ultimate financial savings and in this computerised age should be relatively straightforward to achieve.

Any such savings could surely be used to ameliorate the impact that the co-payment will have on the most disadvantaged chemotherapy patients.

The above issues also have significant implications for indigenous people. The requested increase in the Aboriginal workforce would be clearly beneficial.

— Family member/friend of someone with cancer, Miranda Electorate

10 | Messages to the Premier

Dear Premier I have watched all of my family die from cancer. At 61 years old I have outlived two of my sisters and only have to live another two years before I outlive the third. These aren't settling statistics. Cancer affects us all. Surely all Australians are touched by this insidious disease in their lives.

The Cancer Council is targeting the following five areas of concern: 1.

2.

3.

4.

5.

Increased Aboriginal Workforce in Cancer Services Tobacco Retail Reform No Chemotherapy Co-payments Coordinated Cancer Care More Palliative Care Services

Please make them of concern in your government's health agenda.

— Family member/friend of someone with cancer, Blue Mountains Electorate

Dear Premier I wish to support the efforts of the Cancer Council to take practical action in regard to the care of cancer patients in our State. Specifically: 1.

2.

3.

4.

5.

Increased Aboriginal Workforce in Cancer Services Tobacco Retail Reform No Chemotherapy Co-payments Coordinated Cancer Care More Palliative Care Services — Family member/friend of someone with cancer, Ballina Electorate

Dear Premier

Support the Cancer Council with its Vision for Change. This is an important issue to the voters in this State.

— Concerned community member, Keira Electorate

Dear Premier Please listen to these ideas from Cancer Council. They need some of our funds to be spent on these things.

— Family member/friend of someone with cancer

11 | Messages to the Premier

Su pporte r from Dubbo

12 | Messages to the Premier

Dear Premier Every family in NSW must have been touched by cancer by now. Please consider the following projects: 1.

2.

3.

4.

5.

Increased Aboriginal Workforce in Cancer Services Tobacco retail reform No chemotherapy co-payments Co-ordinated Cancer Care More palliative care services, especially in South East NSW. — Primary carer, Bega Electorate

Dear Premier • • • • •

Increased Aboriginal Workforce in Cancer Services; Tobacco Retail Reform; No co-payments for all medical services including chemotherapy; More Palliative Care Services and Coordinated Cancer Care level is great. Let's keep it that way.

— Family member/friend of someone with cancer, Toongabbie Electorate

Dear Premier Each and every one of the five areas are of high concern and need action taken on them immediately!

— Has/had cancer, North Shore Electorate

Dear Premier

Cancer is one of the biggest killers; it is one of the biggest issues for the human race and needs to be addressed and taken up by all politicians especially the five areas of action outlined in Cancer Council's Vision for Change.

— Family member/friend of someone with cancer, Pittwater Electorate

13 | Messages to the Premier

Dear Premier I would endorse the Cancer Council's request for action on the following five points: • • • • •

Increased Aboriginal Workforce in Cancer Services Tobacco Retail Reform No Chemotherapy Co-payments Coordinated Cancer Care More Palliative Care Services

I'm especially mindful of the needs of those who are suffering and their requests for the legalisation of medicinal cannabis. I think we, who are well, need to do all we can to alleviate their suffering.

— Family member/friend of someone with cancer, Oxley Electorate

Dear Premier

Please support the Cancer Council on the 5 issues they are putting forward. If you have had a family member die from cancer as I have, you will see the sense in what they are putting forward.

— Family member/friend of someone with cancer, Newcastle Electorate

Dear Premier I would like to say action on the following: 1.

2.

3.

4.

5.

Increased Aboriginal Workforce in Cancer Services Tobacco Retail Reform No Chemotherapy Co-payments Coordinated Cancer Care More Palliative Care Services

Thanking you in anticipation.

— Family member/friend of someone with cancer, Kiama Electorate

14 | Messages to the Premier

Su pporte rs fro m North Sy dne y

Dear Premier

I have had two friends pass away in the last two years, both as a result of cancer. Jim was aged 68 and Luke just 17. Cancer is an insidious disease that affects so many of all different ages. It was incredibly hard to watch Luke's parents struggle to stay positive for their son while he was alive but I can't imagine the pain they go through every day having lost their only son.

But sadly there are thousands of families in Australia alone that lose loved ones to cancer. Just about every person I know has lost a friend or family member to cancer. As Premier of NSW, I urge you to support Cancer Council's 'Vision for Change' for cancer support and care so that the Cancer Council can build on their already incredible achievements and improve the lives of all people affected by cancer. — Family member/friend of someone with cancer, Northern Tablelands Electorate

15 | Messages to the Premier

Dear Premier I support the Cancer Council's drive to improve cancer care delivery in this State. I find it hard to believe that we have to campaign for things that any moral society would have provided without question. The things most urgently needed are: 1.

2.

3.

4.

5.

Increased Aboriginal Workforce in Cancer Services Tobacco Retail Reform No Chemotherapy Co-payments Coordinated Cancer Care More Palliative Care Services.

I call on the State Government to ensure these much needed services in our effort to finally beat cancer - and to at least make life more bearable for those going through such a dreadful experience.

— Family member/friend of someone with cancer, Blue Mountains Electorate

Dear Premier

I am writing to you to endorse the Vision for Change of the Cancer Council NSW - and specifically its five priority areas. Please give this issue very careful consideration.

— Concerned community member, Marrickville Electorate

Dear Premier It would be good to do better with cancer: • • • • •

Increased Aboriginal workforce in cancer services, Tobacco retail reform, No chemotherapy co-payments, Coordinated cancer care, More palliative care services.

— Family member/friend of someone with cancer, Ku-ring-gai Electorate

16 | Messages to the Premier

Dear Premier As a supporter of the Cancer Council and having lived through the death of my husband from lung cancer, I urge that your government take action on the following areas: • • • • •

Increased Aboriginal Workforce in Cancer Services tobacco retail reform no chemotherapy co-payments coordinated cancer care more palliative care services.

I beg you and your Government to please help to beat cancer.

—Family member/friend of someone with cancer, Marrickville Electorate Dear Premier Please make a commitment to future action for: 1. Increased Aboriginal Workforce in Cancer Services 2. Tobacco Retail Reform 3. No Chemotherapy Co-payments 4. Coordinated Cancer Care 5. More Palliative Care Services It's only with your commitment to the above programs that we can continue to prevent and treat cancer effectively. We are all affected by cancer in one way or another - it's important to every person, every voter.

— Family member/friend of someone with cancer, Balmain Electorate

Dear Premier

Australia is called the 'lucky country' however, over many years now I have experienced the decline in assistance in the health system that does less to benefit all who are in need of essential services. There is a lot to consider about every aspect of everyone's health and all Australians should have access to real and proper health benefits. The five suggestions above are very important and I support any effort to see them eventuate.

— Has/had cancer, Wagga Wagga Electorate

17 | Messages to the Premier

Su pporte rs from B ega

Dear Premier

I have had friends and family with cancer previously but until my husband was effected I didn't fully realise the full effect it has on immediate family. It is all encompassing. I am young and resilient at 46 years of age and had the ability to stand up and try and get appropriate care for my husband but so I often I felt like I failed simply because the services aren't available. You do get the point of accepting death from cancer as your fate but it is how you live your life with your loved one until the end that makes a difference.

With all the other stresses of living with cancer you should not have to be worried about paying for chemotherapy, not getting the equipment required to give them quality of life or stressing about parking or being too tired to drive home but knowing you can't afford to pay for accommodation. By providing better facilities and services for cancer patients and their carers we can keep people out of hospital thus saving so much money and freeing up beds but also providing them dignity in a loving peaceful home environment. — Primary Carer, Keira Electorate 18 | Messages to the Premier

Dear Premier I want to ask for the following points to be actioned by your Government: • • • • •

Increased Aboriginal Workforce in Cancer Services Tobacco Retail Reform No Chemotherapy Co-payments Coordinated Cancer Care More Palliative Care Services

More and more people are being affected by your Government's inaction.

Please help the most vulnerable in our community by standing up and doing something useful. You have it in your power.

—Family member/friend of someone with cancer, Marrickville Electorate

Dear Premier

All of the five listed services are essential and it is a crying shame that we have to prioritise them in our voting. Make them all available free or at reasonable, low costs so they can be accessed by all.

— Has/had cancer, Wagga Wagga Electorate

Dear Premier May I please ask you to increase the NSW Government's focus on the following five areas of concern: • • • • •

Increased Aboriginal Workforce in Cancer Services Tobacco Retail Reform No Chemotherapy Co-payments Coordinated Cancer Care More Palliative Care Services —Concerned community member, Hornsby Electorate

19 | Messages to the Premier

Northern Star, Lismore NSW 29 Nov 2014, by Luke Mortimer General News, page 8 - 456.00 cm2 Regional - circulation 15,352 (MTW

20 | Messages to the Premier

Dear Premier As a voter who lives in regional NSW, I beg you to take action on the following in the lead up to the next election: • • •

Further reforms on tobacco sales and assistance for smokers to give up; More palliative care services in regional NSW; No chemotherapy co-payments, no matter who you are.

—Family member/friend of someone with cancer, Dubbo Electorate

Dear Premier Our concern in the Hawkesbury is the total lack of services for cancer patients.

•

•

• •

Long travel to centres for chemotherapy puts a huge strain on patients and carers. When will we see our locals get the care they deserve in our own hospital?

We also need treatment without the impost of co-payments putting added strain on families. Why is NSW the only state that still has this payment?

More nurses to provide coordinated care for patients is not a want but a need and the right for anyone suffering cancer.

More palliative care nurses for those who are nearing the end of their suffering so that they can die with dignity and the love and care from trained professionals.

I implore you to heed the plea of many NSW constituents if your government is to be voted back in to power in 2015.

—Family member/friend of someone with cancer, Hawkesbury Electorate

Dear Premier

More and better coordinated cancer care will improve the outcomes for patients. More Aboriginal workers will improve the experience of indigenous patients as well as non-indigenous.

—Family member/friend of someone with cancer, Vaucluse Electorate

21 | Messages to the Premier

Dear Premier

Please put in water-tight reforms on tobacco retail and more funding for cancer research and palliative care facilities for patients. I also think it will be good to put money into educating the public on how to prevent cancer (diet, lifestyle, environment, stress management etc.) and how to manage the disease into remission when people are diagnosed with it. Education on various forms of cancer is important and useful to the public. I also think money should be put into research for alternative therapies/medications for curing cancer.

—Family member/friend of someone with cancer, Manly Electorate

Dear Premier Please improve the following, particularly those in rural areas; • • • •

No Chemotherapy Co-payments Coordinated Cancer Care More Palliative Care Services Also consider further assistance with accommodation, for those who have to travel to cities or larger regional centres, in order to access treatment for cancer. This includes cost for their primary carers, as well as the patient themselves.

—Family member/friend of someone with cancer, Orange Electorate

Dear Premier Cancer is curable but research needs to be funded. I have a dear friend who has been a taxpayer all her working life. She is now a pensioner and relies on the public health system to support her during her treatment. I strongly urge you to continue to provide the necessary services of coordinated cancer and palliative care for all patients in need of these services, but in particular to those older Australians, who through no fault of their own, find themselves struggling to find the necessary financial peace at the end of life's journey.

—Family member/friend of someone with cancer, Wollondilly Electorate

22 | Messages to the Premier

Dear Premier I am one of the fortunate ones who has survived cancer, although not without major and disabling long term side-effects. It affects every area of the being and life - family, friends, employers, work mates and those who care for you. I have also worked for many years in areas where many have been diagnosed with cancer; many never recovered. The costs of life-saving medications are frequently out of reach of many - imagine at your first visit being told there is a drug that MAY cure you but it will cost you $100,000.00! These drugs should be available to all, not just the few who can afford them. We give drug addicts methadone to control their addiction but can't help those afflicted with life-threatening illnesses. We also need more palliative care areas to provide care and support to both patients and their families. We forget our indigenous people - for many there are no facilities for treatment. They often have to travel long distances away from their families. —Has/had cancer, Camden Electorate

Dear Premier

Cancer is the biggest killer in Australia. The social cost for communities is enormous. It affects not only the patient but their family, friends and workmates. It involves hugely expensive tests and treatment to save each life. Co-payments could mean the difference between life and death, literally. Having different arrangements in regional NSW is unfair and unacceptable. People in regional areas have enough extra challenges like availability of treatment and transport to treatment. Something that Sydneysiders don't have to contend with. We also lack palliative care in regional NSW. I would like to see a focus on regional areas of NSW rather than just Western Sydney. We may not have as many voters but we deserve equality of care. — Family member/friend of someone with cancer, Goulburn Electorate

23 | Messages to the Premier

Su pporte rs fro m Sy dne y Ca nc er Advo ca cy Netw ork

Dear Premier

As a palliative care volunteer in a rural community, I see firsthand every week the impact of lack of coordinated care for cancer patients. Oncologist saying to decide before next visit whether or not to continue with treatment, but no mention of anyone to talk to about their issues or once the decision is made to be told "palliative care nurses will be in contact". Nobody explains the practical and emotional issues or the dying process/options with regards to care, wills etc. On the trip home they talk to a volunteer who then picks up the pieces for them!! What happens to those without support? Their treatment is addressed but they aren't told about the services in our local community, or about the palliative care room in our town where they and their family can be together and be cared for by those who know and care about them. We need a coordinated approach so nobody is left to face a cancer journey alone! — Concerned community member, Upper Hunter Electorate

24 | Messages to the Premier

Dear Premier The Cancer Council NSW's Vision for Change makes common sense! It is all about prevention and investing NOW for future benefit. It is about time the Government took a longer view when it comes to our State's health rather than focusing on the short-term election cycle. The very nature of cancer means that we may not see immediate results but that does not make them any less important or beneficial to the people with cancer and their carers. Simple things like reforming tobacco retail can have an immediate impact on the availability of cigarettes helping people give up smoking and acting as a disincentive to take it up in the first place. Selling tobacco benefits no one except the tobacco companies. Why not leave an amazing health legacy for our community?? We also have a fantastic opportunity to improve the cancer experience for all NSW cancer patients, including for Aboriginal people. Cancer does not discriminate and we need to ensure that all cancer patients get the best care.

—Family member/friend of someone with cancer, Dubbo Electorate

Dear Premier

Please address the following: • Attention to cancer patients and their families in remote and regional areas.

• Coordinated cancer care for patients and their families.

• Palliative care that is available for all patients and families.

— Family member/friend of someone with cancer, Goulburn Electorate

Dear Premier I would like you read these issues and take them seriously. I have had cancer and now volunteer at a radiotherapy information centre at my local hospital. I currently have a good friend who is terminally ill with cancer. It is an insidious illness and to watch people suffer is agonising. Please take the time to think about these issues and maybe make cancer a word that is not heard with fear of dying as soon as the word is said.

—Has/had cancer, Gosford Electorate

25 | Messages to the Premier

Dear Premier Please support funding for: • • • • •

Palliative care services Free chemotherapy for patients Affordable accommodation near cancer services, Affordable car parking for patients and carers Free lymphoedema related garments for those suffering that illness.

My father suffered from a Leukaemia related illness for 6 years and it was traumatic time for our family. Going to Royal North Shore hospital and being a guinea pig to treatments and having blood transfusions (at palliative care) to stay alive. If it wasn't for palliative care nurses and doctors at St Vincent's Hospital in Lismore, my father wouldn't have those years with us. Please support these key issues as it needs addressing for future patients.

—Family member/friend of someone with cancer, Lismore Electorate

Dear Premier

Cancer affects so many people it can be devastating, health wise and cost wise. We don't want co-payments for chemotherapy we need more cancer care units and more palliative care services. More Aboriginal workforce in cancer services and continued education in the benefits of not smoking.

— Family member/friend of someone with cancer, Monaro Electorate

Dear Premier I would like to ask you to consider taking action to assist cancer patients and their families to get the best treatment and services possible during and after their diagnosis of the disease. All cancer patients in NSW should be able to have access to a wide range of care and palliative care services no matter where they live. No financial burden should be put on them at this time so I would also ask that no chemotherapy co-payments be attached to their treatment.

—Family member/friend of someone with cancer, Port Macquarie Electorate

26 | Messages to the Premier

Su pporte rs from NSW

Dear Premier Please take action to provide assistance for the following: 1.

2.

3.

4.

5.

6.

1.Increased Aboriginal workforce in cancer services 2.Tobacco retail reform 3.No chemotherapy co-payments 4.Coordinated cancer care 5.More palliative care services More help for families of cancer sufferers.

—Family member/friend of someone with cancer, Kogarah Electorate

Dear Premier

My brother in-law died from brain tumours last year. He was 53. My sister was left with debts for cancer treatment that were well over $20 000. She had private health cover. Why do patients and their relatives need to live in fear of financial ruin as well as death? Medicare co-payments are unfair and cruel to the sick and their relatives. Chemotherapy and other treatments extended my brother in laws life (9 months from diagnosis to his death).

This gave his family some time to grieve, accept and value some quality time and achieve some 'bucket list' experiences. My sister desperately needed assistance from the palliative care team. It did not come. 2 weeks before he died my sister again requested urgent assistance. Two hours AFTER Michael passed away, the palliative care nurse knocked on the door. That was disgusting, cruel, distressing and demeaning to the grieving family. Please make real changes to policies and financial commitments to help people with serious illness. — Family member/friend of someone with cancer, Charlestown Electorate 27 | Messages to the Premier

Dear Premier

So many people are profoundly affected by cancer. I sincerely hope that if re-elected your government will commit to increasing palliative care services, ensure that there are no chemotherapy co-payments, further extend tobacco retail reforms and ensure that Aboriginal communities have Aboriginal carers and medical staff. I hope that these will be policies that you commit to prior to the election. — Family member/friend of someone with cancer, Vaucluse Electorate

Dear Premier Cancer unfortunately is becoming more and more prevailing and it is time for care and cost of care to take a step forward. There is a clear need for more coordinated care and support for patients and their families and still there is a clear need to relieve the financial burden of the cost of treatments.

Patients cannot focus on healing if they need to worry about the cost of chemotherapy and other essential treatments. The forthcoming election provides a good opportunity for the Government to come forth with a better plan that is compassionate and all inclusive. —Family member/friend of someone with cancer, Rockdale Electorate

28 | Messages to the Premier

Dear Premier Please do all you can to help combat this frightening and devastation disease. The five areas I am asking for you to take action on include: 1.

2.

3.

4.

5.

Increased Aboriginal workforce in cancer services Tobacco retail reform No chemotherapy co-payments Coordinated cancer care More palliative care services

—Family member/friend of someone with cancer, Bathurst Electorate

Dear Premier

These are all important issues and everyday ordinary citizens face these problems sometimes totally alone.

— Concerned community member, Ku-ring-gai Electorate

Dear Premier Cancer affects everyone in some way, at some stage. Please help Cancer Council improve the journey for those directly affected, by listening to our election agenda. Thank you.

—Concerned community member, Willoughby Electorate

Dear Premier I support the Cancer Council's Vision for Change.

—Primary carer, Newcastle Electorate

Dear Premier Please support Cancer Council's policies.

—Primary carer, Goulburn Electorate

29 | Messages to the Premier

Singleton Argus, Singleton NSW 21 Nov 2014, by Louise Nichols General News, page 6 - 212.00 cmÇ Regional - circulation 2,488 (-T--F--)

30 | Messages to the Premier

Tobacco Retail Reform Dear Premier Smoking is one of the greatest of modern scourges, having huge impact on health and wellbeing, including the biggest preventable cause of cancer. All major parties are committed to reducing smoking. The party in Government in NSW has a duty to enhance action against, and tighten controls on tobacco. Among all the actions state governments can take, reducing the retail availability of tobacco will have the greatest effect. Convenience retail outlets like gas stations, convenience stores, vending machines in pubs, newsagents dominant availability, and are particularly concentrated in disadvantaged communities with high smoking risk. Gradually reducing these through, say a restricted licensing scheme would be a powerful statement of government support for those trying to quit and stay quit, would enhance the returns from existing NSW tobacco control expenditure, and change the norm in the community that it's OK to sell tobacco anywhere anytime. —Family member/friend of someone with cancer, Strathfield Electorate

Dear Premier

Provide more funding for cancer and restrict cigarette sales. — Community member, Campbelltown Electorate

Dear Premier Please stop people who are now infants from ever being allowed to buy tobacco products. This would phase out smoking altogether in Australia over a 25 year period. It would have to be a Nationally co-ordinated approach. —Concerned community member, Newcastle Electorate

31 | Messages to the Premier

Dear Premier Please support the five issues put forward by Cancer Council NSW. All of these issues are important and will lessen the burden of cancer. The issue of tobacco retail reform is particularly important to me because my father was a smoker and died of smoke related diseases. I watched him battle his addiction and I knew that he wished he could quit. I believe that having tobacco so readily available makes it hard for people to quit. This is why I believe that a positive licencing scheme that controls the number, type and location of shops able to retail tobacco will help provide more support for those trying to quit and also make it harder for young people to start. A cancer diagnosis is life changing. It affects every aspect of a person's life physically, mentally, emotionally, financially, so to make a difference, I hope that as Premier you will stand with us and help implement these five issues to make a difference. —Concerned community member, Willoughby Electorate

Dear Premier Stop the sale of cigarettes in supermarkets —Has/had cancer

Dear Premier

The NSW Government has taken great strides in tobacco control in recent years and smoking rates have declined, but we can't become complacent.

Smoking rates are unacceptably high in rural areas. Tobacco should not be able to be sold 'anywhere and everywhere'. It is catastrophic for health, causing immeasurable harm and suffering to users and those around them, not to mention health costs. Please legislate where and how tobacco (including e- cigarettes) can be sold. —Concerned community member, Tamworth Electorate

32 | Messages to the Premier

John

G ra ha me

33 | Messages to the Premier

Dear Premier Stop the sale of cigarettes in supermarkets —Has/had cancer

Dear Premier Provide I am writing to you to ask you to promise to take action to prevent cancer by introducing tobacco retail reform. I think it is also important to control the massive increase in e-cigarette smoking which needs legislation to limit or ban it.

— Has/had cancer

Dear Premier Ban junk food advertising and more regulation of point-of-sale of tobacco.

—Primary Carer, Keira Electorate

Dear Premier

Having cancer is a very stressful time in people's lives. People often have to give up work. All of the issues above can drain ones finances.

The availability of tobacco for teenagers to buy on impulse and start smoking is a massive problem. We need to reduce the number of outlets and regulate this industry.

— Family member/friend of someone with cancer, Swansea Electorate

Dear Premier Get serious about reducing the availability of tobacco.

— Has/had cancer, Coogee Electorate

34 | Messages to the Premier

Dear Premier Ramp up the fight against tobacco.

• • • • • • •

Licensing retailers and smokers, increasing quit-smoking services using a variety of techniques, declaring tobacco smoke a toxic air contaminant and not allowing children into any space where smoking is allowed, bring forward tobacco-free prisons, smoke-free stage performances and take advice from the experts for robust definition for smoke-free outdoor dining and drinking, bringing these areas smoke-free prior to the next election. Additionally, declare all retirement villages and multi-unit public housing smoke-free.

Smoke-free CONCURRENT outdoor dining and outdoor drinking in NSW

by July 2015, to protect all workers and patrons, to de-normalise smoking in young people's eyes and help those who are quitting from relapsing whilst drinking. Strict definition of outdoors, allowing smoke to escape (not current 75% enclosed).

These measures will save billions in cancer prevention and healthcare, allowing funds to become available for other major health issues including obesity, alcoholism and mental health problems.

—Concerned community member, Manly Electorate

Cessnock Advertiser, Cessnock NSW 24 Sep 2014 General News, page 3 - 130.00 cm2 Regional - circulation 17,000 (--W----)

35 | Messages to the Premier

Singleton Argus, Singleton NSW 13 Jan 2015 General News, page 5 - 190.00 cm2 Regional - circulation 2,488 (-T--F--)

36 | Messages to the Premier

Ka th

Dear Premier

As a young person, I am aware of the negative cultural association between cigarettes and alcohol within my age group. Consumption of alcohol is often paired with cigarette smoking, and many young people I know will buy cigarettes and alcohol together in preparation for a social night out. Friends of mine have often said that they only smoke when they drink or only get a craving for a cigarette after having had a few drinks. I believe that to dissuade this behaviour, cigarettes should be banned from being sold at liquor retail outlets. — Family member/friend of someone with cancer, Pittwater Electorate

37 | Messages to the Premier

Increased Aboriginal Workforce in Cancer Services Dear Premier I have been effected by breast cancer and I am one of the lucky ones. I am a Aboriginal woman who had cancer. On my journey I have found that there is not a lot of Aboriginal workers who work at cancer centres. This at some stage can put Aboriginal men and woman off because of their cultural background. I have found that this is one of the big problems to why they most likely die, due to getting their results too late. This is one of the problems that Aboriginals come up againt as there is no Aboriginal worker at these centres. They would relate to them quicker and thus this may help them on their journey. As it is not a easy road to travel, also we need more education to the communities on this matter. Men are slowly getting on board but still there is that 'too late' syndrome. If we can help in getting these centres an Aboriginal worker this problem will help Aboriginal people.

As we know Aboriginal business is everybody's business. —Has/had cancer, Wagga Wagga Electorate

Dear Premier

Aboriginal men and women with cancer problems are very shy and they respond well to trained Aboriginal advocates. We need money to train Aboriginal people as Cancer Care Advocates please. — Has/had cancer

38 | Messages to the Premier

Bega District News, Bega NSW 13 Oct 2014 http://www.begadistrictnews.com.au/story/2620718/indigenoushealth-at-heart-of-cancer-council-campaign/

39 | Messages to the Premier

Dear Premier Fifteen years ago I survived colon cancer. I was 54. Four years ago my beloved husband died as a result of metastatic ocular melanoma. I know what cancer means and I also know that my family's experience with cancer is not uncommon in Aboriginal communities. It is essential that you increase Aboriginal representation in the cancer care workforce so that the service is respected and used by aboriginal people. It is a matter of justice in health care. My other passionate concern in this area is palliative care. My husband and I received outstanding palliative care support while he was dying. It was this support which gave us both the confidence and practical advice to make the decision that he should die at home. This was so important to both of us and our daughter. I will be forever grateful to the palliative care nurses. And while it was not my major concern at the time, the State's investment in district palliative care support saved the hospital budget thousands of dollars.

Has/had cancer, Balmain Electorate

Dear Premier

Aboriginal Closing the gap in Aboriginal health must be core business for the state government. Until the great disparity in cancer outcomes for Aboriginal people is addressed, the State is failing in its duty to provide just outcomes for all citizens of this state. — Has/had cancer, Newcastle Electorate

Dear Premier Research has shown that to close the gap in cancer survival rates for Aboriginal people we need to have more Aboriginal health workers in cancer services. Make this a priority in the upcoming NSW State elections. —Family member/friend of someone with cancer, Gosford Electorate

Dear Premier Please try to help those who often cannot help themselves. We should be equal, but sadly our indigenous people seem to be left behind and miss out on what a lot of us take for granted. I would also like to see rarer cancers get more funding.

40 | Messages to the Premier

—Has/had cancer, Wollongong Electorate

Dubbo Photo News, Dubbo NSW 02 Oct 2014 General News, page 20 - 225.00 cm2 Regional - circulation 12,000 (---T---)

41 | Messages to the Premier

42 | Messages to the Premier

Daily Liberal, Dubbo NSW 13 Dec 2014 General News, page 4 - 265.00 cm2 Regional - circulation 3,038 (MTWTFS-)

43 | Messages to the Premier

Dear Premier

Help us to not only 'Close the Gap' but to help my people to be able to have a good chance of a good future. — Primary Carer, Lismore Electorate

Dear Premier I really think that we need all the changes to be done by the Government for this to work but the one i think that should be really looked at is the Increased Aboriginal Workforce In Cancer Services.

44 | Messages to the Premier

Manning River Times, Taree NSW 05 Dec 2014 General News, page 6 - 150.00 cm2 Regional - circulation 3,239 (-TW- F)

45 | Messages to the Premier

Manning Great Lakes Extra, Manning NSW 11 Dec 2014 General News, page 7 - 102.00 cm2 Regional - circulation 19,479 (---T---)

46 | Messages to the Premier

No Chemotherapy Co-payments Dear Premier I would like patients to have more help with chemotherapy drug fees and with special drugs needed for treatment.

Has/had cancer, Goulburn Electorate

Dear Premier When people develop cancer they often experience terrible financial stresses. But despite this, many local health districts charge high prices for chemotherapy drugs. Not only is this poorly targeted impost on people at a time when they are down on their luck, the policy and charges vary depending on which hospital one attends, making health costs a lottery with inadequate consumer information up-front. Please eliminate these charges and make this a state-wide policy. —Family member/friend of someone with cancer, Strathfield Electorate

Dear Premier

No chemotherapy co-payments. A male patient who attended an appointment at Liverpool was going to be charged a chemotherapy copayment. I can only imagine the added pressure for this family - he was a recent arrival and had four children. Although this may not seem like a large amount (up to $180) for a family who are already struggling emotionally and financially it can be extremely frustrating. Let's make it similar to other states and stop the co-payment in NSW and ACT. — Concerned community member, Liverpool Electorate

47 | Messages to the Premier

Oliv ia an d Is abe lle from Ma itlan d

Dear Premier

Thankyou for your work attempting to make chemotherapy in public hospitals free. I recently received a bill which I was unaware I would receive for $290 to pay for my first Chemo therapy treatment. I expect to receive more as I am halfway through 6 treatments, so I may be up for about $1800.I have continued to try and work through my Chemo as I am a single parent so there is no other income in my home. However I have reduced my hours as it is not possible some days to work when I am unwell. I am not in a medical fund due to the cost and concern that I would not be able to pay the thousands of dollars you hear people are charged after a hospital stay for above threshold costs.

My current chemotherapy is in the Mater Hospital Newcastle-a public hospital. So I was shocked when I received a bill for my chemotherapy drugs.

Please let me now how I can continue to support your efforts for Policy change.

48 | Messages to the Premier

Dear Premier I live in a region where all the oncology units in SNSW LHD ask chemotherapy patients pay the co-payment for their chemotherapy. This seems quite unfair as we know that some LHD are getting around the payment by admitting their patients as day patients where you sign a form and go home with a bag of drugs and never see a bill. Our local patients don't even have the cost of the drugs discussed prior to administration and get a surprise bill in the mail around cycle 2. No one in the health services discusses the cost as they are to embarrassed and it is not really an appropriate conversation when you are talking about lifesaving treatment BUT there is also a cost. We don't expect people to pay for radiation treatment which is just another modality of treatment but we expect them to pay to be injected. Private patients in my local area can't even use there private cover for chemotherapy in SNSW LHD, this is wrong. We already pay more for power, petrol etc. Please fix this.

—Concerned community member, Bega Electorate

Dear Premier

No chemotherapy co-payments! When my husband had to undergo chemotherapy I could not believe how expensive it was. Our grocery money to feed our three young sons went to saving their Dad instead.

— Family member/friend of someone with cancer, Keira Electorate

Dear Premier Having had breast cancer and going through four months of chemotherapy and then three months of daily radiation treatment I am now on a five year plan for tamoxifen. This has been the most expensive past two years that I have ever experienced at a time when income stops. My employer made my life so difficult at work due to my having cancer that all he wanted was for me to quit my job, as if I had some contagious disease. I did quit due to the pressure of my boss and the pressure of the treatment. I was easily out of pocket by $20k in the first year. I was not on the public health system as I had private insurance. I am now questioning whether private health insurance is worth it as a friend of mine who is in the public health system did not have nearly as much expense as I did and was also in access of public benefits that I could not get. The health system should be the same for all with no chemotherapy co-payments, coordinated cancer care, and more palliative care.

—Has/had cancer, Willoughby Electorate

49 | Messages to the Premier

Bay Post, Ulladulla NSW 12 Sep 2014, by Josh Gidney General News, page 4 - 303.00 cm2 Regional - circulation 3,400 (--W-F--)

50 | Messages to the Premier

B ra d & Mitc h from Mait la nd

51 | Messages to the Premier

Dear Premier When privately insured, chemotherapy costs are onerous, especially for aged pensioners. Long lasting issues such as Lymphoedema do not attract any Medicare rebate for essential therapy, and compression pumps.

Likewise help for associated problems of neuropathy are non existent. All cancer patients should be able to access free treatment, we needed to borrow from family for my treatment!

—Has/had cancer, Parramatta Electorate

Dear Premier

All five issues need to be addressed and the stand out one for me is copayment for chemotherapy. People in the West are already doing tough, this just adds to more stress. Don't you think it's enough just coping with cancer without the worry of all the added money problems?

— Family member/friend of someone with cancer, Blacktown Electorate

Dear Premier In our case both my husband and I both had cancer. The cost of chemotherapy plus the car parking when you had to stay all day was very high. These are both important issues for me.

—Has/had cancer, The Entrance Electorate

Dear Premier With all the carcinogens that the Government allows its people to be exposed to, it has a duty to provide chemotherapy free of charge!

—Primary Carer, Manly Electorate

52 | Messages to the Premier

Daily Liberal, Dubbo NSW 08 Dec 2014 General News, page 9 - 342.00 cm2 Regional - circulation 3,626 (MTWTFS-)

53 | Messages to the Premier

54 | Messages to the Premier

55 | Messages to the Premier

Coordinated Cancer Care Dear Premier Living with cancer is a terrible sentence and is made harder because cancer care isn't coordinated and readily available. MRI scans are not available quickly enough and treatment programs do not always start as quickly as they should, lessening the likelihood of recovery for some patients. Given that the statistics are so bad (I believe it's one in three people will develop cancer at some time in their lives), more funding needs to be allocated to all levels of cancer diagnosis, treatment, palliative care, family support and counselling. There is nothing harder than watching someone you love deteriorate and pass away due to cancer that wasn't diagnosed promptly and treated effectively. Please increase funding to the Cancer Council NSW. Family member/friend of someone with cancer, Pittwater Electorate

Dear Premier

Cancer visits most families at some time in their lives. Better and more coordinated services for treatment of patients should be a high priority for the government. — Community member, Miranda Electorate

Dear Premier Please give more funding to facilitate more social workers for cancer patients and their carers. In my electorate there are serious deficiencies in psycho-social and many other areas of important support and cancer care co-ordination. With a new Cancer Centre to be opened in Albury next year it will be essential to address this area of cancer care. —Primary carer, Albury Electorate

56 | Messages to the Premier

Dear Premier Healthcare should be at the top of the Government's agenda, as it applies to all sections of and age groups within, the community, In reviewing the issues identified by the Cancer Council, I found it hard to rank them, as they are inextricably linked. However, for regional and rural constituents, transport and accommodation close by to services are paramount, without which the type and level of care cannot be administered. Co-ordination of care must be linked to those issues otherwise there is a terrible waste of funds and time. Then, of course, the care has to be appropriate and available. —Has/had cancer, Dubbo Electorate

Dear Premier

People affected by cancer, patients and carers need help to manage the complexity of the health system to ensure continuity of care. Lack of care coordination causes additional stress at an already difficult time and puts patients and families at risk of being disengaged from care or not receiving appropriate and timely care. This is a serious issue particularly for the poor prognosis cancers, pancreas, brain, ovarian and lung. — Family member/friend of someone with cancer, Epping Electorate

Dear Premier As someone who has been dealing with cancer issues since 2004 (with private health insurance and a very supportive family), I have learned to negotiate and make sense of the very complex "world of cancer care".

Unfortunately, some people are not as lucky as me and need extra funding and support and it is up to our government to make sure that everyone has the appropriate level of care for their illness and financial situation. We are all citizens of NSW and deserve no less. The Cancer Council do an amazing job but they can't do it alone - please help them to help people going through this awful disease to get the best outcome possible. —Has/had cancer, Pittwater Electorate

57 | Messages to the Premier

Su pporte rs fro m More e

Su pporte rs Alison & S te ve

Su pporte rs fro m S in glet on

58 | Messages to the Premier

Dear Premier Coordinating of cancer care is so important for people in the early stage of diagnosis. We need more funding for this.

—Primary Carer, Albury Electorate

Dear Premier It's not until you go through it personally that you realise how important this all is. The lack of co-ordination in treatment and support just adds to the stress of what patients and carers go through.

—Community member, Lane Cove Electorate

Dear Premier

Every person is entitled to access the treatment and care they need for a successful health outcome, irrespective of where they live, their age or their socio-economic status. People should not 'fall between the cracks' because they are isolated, they are unable to afford expensive transport, therapies or aids, or because we fail to identify their needs because there is no co-ordinated approach to their care. Treatment has to involve the patient, their carer and their family. The carer and family will be there at 3.00am when medical intervention is not. Support for patients needs to include emotional health as well as positive disease prevention and treatment.

— Family member/friend of someone with cancer, Orange Electorate

Dear Premier All of these issues are important to cancer patients and their carers. Money needs to be spent on improving them, but I feel that if there was more coordination of services so patients knew what, where and how these services could be accessed, then there would be less stress for them financially and emotionally.

—Community member, Shellharbour Electorate

59 | Messages to the Premier

Daily Liberal, Dubbo NSW 11 Dec 2014 General News, page 2 - 502.00 cm2 Regional - circulation 3,626 (MTWTFS-)

60 | Messages to the Premier

Dear Premier

I would like to see the reintroduction of the workers compensation for people like myself that used to be covered until dumped by work for only having a permanent disability of 20%. Since recently completing another course of radiation therapy treatment, I see a need for a more coordinated cancer care system. — Has/had cancer, Lismore Electorate

Dear Premier Being a cancer patient is hard enough to deal with but the financial worry and burden of care borne by your family adds to the stress. I was lucky my family was there every step of the way but not everyone is so lucky. I am well and back working due to the good care of doctors, nurses and family. —Has/had cancer, Lake Macquarie Electorate

61 | Messages to the Premier

More Palliative Care Services Dear Premier Please be aware that not all sufferers from terminal cancer can receive the level of palliative care they need. End-stage cancer leaves the patient in a debilitated and painful state, only relieved by excellent palliative care. May I add my voice both as a cancer sufferer and carer to the calls for more funding for better cancer care, that cancer victims may have a dignified and pain-free end to their lives. —Has/had cancer, Lane Cove Electorate

Dear Premier

When a cancer patient is at end-of-life, palliative care is crucial; sadly, this type of care is waning with lack of enough specialist staff and either specific service in hospitals, or palliative centres/hospitals. More palliative care services are definitely needed. — Family member/friend of someone with cancer, Marrickville Electorate

Dear Premier Coffs Harbour has a particular need for an increase in all of the Saving Life issues identified above. However, if I had to choose only one, difficult as that would be, I believe that there be a purpose built Palliative Care Hospice for the mid-north coast. As an Anglican Priest, I have walked many a journey with cancer sufferers and their families and know that an identifiable place where all palliative care services are discretely located would very much ease the journey and its sometime unbearable load. —Has/had cancer, Coffs Harbour Electorate

62 | Messages to the Premier

Border Mail, Albury-Wodonga 29 Dec 2014, by Natalie Kotsios General News, page 9 - 424.00 cm2 Regional - circulation 18,822 (MTWTFS-)

63 | Messages to the Premier

Coffs Coast Advocate, Coffs Harbour 15 Nov 2014 General News, page 11 - 198.00 cm2 Regional - circulation 31,163 (--W--S-)

64 | Messages to the Premier

Dear Premier My Dad is suffering from prostate cancer. Through his treatment I see a lot of people in the same boat. As we live in the best country in the world we are blessed for what services we get but I do think we can do better. These are our loved ones and they need help. Watching someone slowly die would have to be the most tragic situation anyone would have to endure. For the patient and the ones left behind and we need to make this time a stress free and compassionate as possible. The people who work in palliative care are simply incredible souls but we need more of them to cope with the influx of terminally ill loved ones. Please give our people a better chance of finding the care the deserve in their remaining days. —Primary carer, Wyong Electorate

Dear Premier

Everyone has a right to adequate palliative care and support for their families at this very difficult time. — Concerned community member, South Coast Electorate

Dear Premier My daughter was in palliative care for over eight weeks dying of cancer.

Megan was just 37 and left behind three beautiful daughters. Most nurses and Megan's doctors were wonderful and caring. What is needed in palliative care is better trained doctors and nurses on weekends not a skeletal roster and certainly not doctors/nurses just out of medical school who have no idea how to interact with dying people with respect, courtesy, empathy and sincerity. E.g. my daughter was unable to go to the bathroom at all, two young temp nurses came in and totally humiliated her by saying 'they needed to put a nappy on her'!!! We also experienced a young Dr who failed to give Megan some serious pain relief and when I spoke to him all he said was 'well it won't make much difference anyway'. Another time we had to wait for a doctor to come so my daughter could have a blood transfusion and the doctor couldn't do it properly. More experienced staff on weekends in palliative care! —Family member/friend of someone with cancer, Blue Mountains Electorate

65 | Messages to the Premier

Daily Liberal 10 Dec 2014 http://www.dailyliberal.com.au/story/2753106/push-for-more-palliativecare-doctors-and-nurses/

66 | Messages to the Premier

Su pporte r Tony

Dear Premier

Please consider enhanced funding for palliative care services that are already established and working hard to deliver good outcomes in areas of limited service provision. The funding given for palliative care packages in the home for the last week of life is very inadequate for the needs of the palliative care patients in reality. Support and care is needed for patients for the length of time they need it not just for a short time at end of life, and who can predict when that last week or so of life will occur. —Primary Carer, Myall Lakes Electorate

67 | Messages to the Premier

Dear Premier Palliative care services in the form of inpatient wards or preferably a separate dedicated unit, but on grounds of public hospitals, or nearby, would be preferable. This would save many families the heart wrenching task of ringing around searching for a PC bed in overcrowded nursing homes. All people in their last days deserve special treatment in a nice medical facility (if that is preferred) as much as the children and their families who use Bear Cottage. Also, the Government should be setting up a YoungCare hospital in some accessible place. The rehabilitation hospital at Mona Vale Hospital would, in my opinion, be a perfect site in such a lovely, scenic location. Wouldn't it be great to see young people who need constant care all their life offered a separate dedicated unit that catered to young people? For they should not have to spend all their lives looking at the elderly people in their end stages and have no special services or support just for them. This rich country surely can do much better in relation to health care. —Family member/friend of someone with cancer, Manly Electorate

Dear Premier Without a cure for cancer at hand, then we ask for you and your cabinet to please provide services for early detection, care, treatment and ongoing support. As community members we ask for your time to discuss the experiences of those who have first hand discovered the gaps in systems.

Through consultation we can assist in the gathering of insight and from this we believe improvements will be made with the allocation of funds to specific areas. Premier, cancer is on the increase. It's not going away and for some forms they are presenting massive increases in diagnosis. I am passionate about funding into the research of the GI cancers as I lost my husband to oesophageal cancer 5 years ago when he was just 41. My 3 children and I find the need to work towards improvements in diagnoses and treatment. For those that are unsuccessful, then palliative care is essential support if they choose it. To have dedicated palliative care centres would be welcomed and I believe very busy. —Community member, Riverstone Electorate

Dear Premier

In order that we all live well, our society in NSW needs policies to ensure people can choose rationally to die in a humane and dignified manner. —Concerned community member, Wagga Wagga Electorate

68 | Messages to the Premier

Western Advocate, Bathurst NSW 05 Dec 2014, by Jacinta Carroll General News, page 6 - 222.00 cm2 Regional - circulation 2,926 (MTWTFS-)

69 | Messages to the Premier

Wollongong Advertiser, Wollongong NSW 10 Sep 2014, by Agron Latifi General News, page 9 - 223.00 cm2 Regional - circulation 70,847 (--W----)

70 | Messages to the Premier

Dear Premier We need more trained palliative doctors and more palliative care beds.

—Family member/friend of someone with cancer, Fairfield Electorate

Dear Premier The incidence of cancer is increasing every year and the treatment is improving very well in Australia. The education of the public is excellent, but please make diagnosis, treatment and palliative care more available for everyone especially the country and regional areas of NSW. Can the cost of these facilities be keep down some how?

—Has/had cancer, Willoughby Electorate

Dear Premier

I have experienced through a family member the benefits of palliative care.

For 106 days (a further 7 days in nursing care which he did not like -My brother in law would have preferred to have stayed at Port Kembla Hospital Palliative care). His wife was ill with her own cancer issues and unable to care for her husband. It is essential that more funds are made available to provide this service in more regional locations. The support services for the wife and family was much needed and appreciated.

— Family member/friend of someone with cancer, Keira Electorate

Dear Premier Please take action to increase palliative care and all other cancer related issues.

—Community member, Roseville Electorate

71 | Messages to the Premier

Su pporte r from NSW

Dear Premier

When will you understand how hard and tough people are dealing with this type of problem. Please help the next lot at least. It's too late for my parents however. If you listen now and help with such small matters really honestly you may need the help yourself one day our generation now heads into palliative care services as we grow older anyway! Compassion and quality of life. — Family member/friend of someone with cancer, Murrumbidgee Electorate

72 | Messages to the Premier

Other messages of support Dear Premier I have struggled with breast cancer and while undergoing extensive chemo and radiation therapy I have been unable to work due to the risk of infection due to my lowered immune system. However due to the constraints of Centrelink I have been forced to go through all this and cover the expenses of medication to reduce the side effects all on $260 per week. My expenses have averaged $100 per week leaving me with $160 per week to pay for my housing, food and bills. This puts me in a position where I am not only fighting cancer but trying to survive on a weekly amount that is more than $200 per week below the poverty line. However if I was eligible for a disability allowance I would be trying to survive on an amount that is just below the poverty line. Why is it that people with an illness plus have additional costs to an average unemployed person, be ineligible for a disability pension? —Has/had cancer Dear Premier As a Christian man, husband and parent with duty of care for the people of NSW, take a breather please, in the order of priority make decisions that will directly support the well being of those who need it most for this we don't mind paying a levy/tax knowing we are supporting those most in need. God Bless you. —Has/had cancer, Ku-ring-gai Electorate

Dear Premier

I wish and dream of a world free of any type of cancers. Please help us in a step towards curbing tobacco related cancers; a step towards a world free of tobacco -free of cancer. — Family member/friend of someone with cancer, Strathfield Electorate

73 | Messages to the Premier

Su pporte r Ja ke

Dear Premier

In January 2012 I was told my Dad had pancreatic cancer. I had never heard of it but thought that most cancers were survivable. I was then told Dad had 18 months left - yet he died after 120 days! I didn't believe it, couldn't believe it. How could any illness take someone that quickly? it was unfathomable.

What followed were the absolute worse three months of life, devastating for my Dad, heartbreaking for us, pancreatic cancer destroyed my Dad SO quickly, one minute he was walking, the next he couldn't, one minute he was here the next he was gone. It was brutal, I will never really recover from what I saw happen so rapidly... to this day I cry at the fact he was rushed into hospital never to go back home. So today, I think of my beautiful brave Dad who didn't complain and who had no idea what this disease was. I will continue to be the voice for my Dad that was silenced by a disease of which survival rates haven't changed in 40 years— yes still at 5%. — Family member/friend of someone with cancer, Cronulla Electorate

74 | Messages to the Premier

Dear Premier The stress of cancer is an enormous emotional and financial strain which affects so many people. My personal experience of having an aggressive form of cancer has been devastating. My brother died as a result of brain cancer within a few months and left behind five young children. Please consider the impact of inadequate or lack of funding affected by people cancer.

—Has/had cancer, Hornsby Electorate

Dear Premier Please make it as easy as possible for people with cancer to fight for their lives; Provide the resources, minimise the expenses where possible.

—Family member/friend of someone with cancer, Sydney Electorate

Dear Premier Make treatment and costing easier for patients.

—Has/had cancer, Drummoyne Electorate

Dear Premier

Please consider that all patients require the best treatment possible especially when suffering from cancer. Quality of care should not be determined by the size of ones income.

— Primary carer, Marrickville Electorate

Dear Premier Please assist people more with cancer. It affects 1 in 3 so the people close to you will be affected one day. It's bad enough to have cancer at no fault of your own, so to have the added burden of medical expenses would be so stressful. The best we can do for those affected is make the medical cost free.

—Family member/friend of someone with cancer, Newcastle Electorate

75 | Messages to the Premier

Dear Premier Please make sure cancer sufferers get the best available treatment and at little or no cost.

—Family member/friend of someone with cancer, Heathcote Electorate

Dear Premier

Having cancer is the hardest thing; losing my job plus being sick. More should be done to help partners/carers, plus education on better eating plus no payments for drugs.

— Has/had cancer

Dear Premier It's bad enoughto be diagnosed with cancer but then having to find the money to try and beat it. This is something the government should be responding to so there is less stress on the patient.

—Family member/friend of someone with cancer, Vaucluse Electorate

Dear Premier More needs to be done to ease the financial burden on those undergoing treatment for cancer and their families. Please arrange better support for these folk.

—Family member/friend of someone with cancer, Wagga Wagga Electorate

Dear Premier People don't ask to get cancer and when they do issues faced can cause huge family stress not to mention loss of income. They need help with the cost of treatment and also the cost of proper after treatment for lymphoedema which is a terrible thing to live with. Patients should have access to both of these things free of charge. Please consider these issues as a priority.

—Family member/friend of someone with cancer, Ryde Electorate

76 | Messages to the Premier

Dear Premier Cancer of any kind is a frightening illness often not caused by the patients themselves. It affects all members of the patients family and friends and needs a great amount of money thrown into both research, early detection (if possible) and treatment. Many patients and their carers are unable to work during treatments so this should be as cost free as possible. However, patients who have contributed to their condition, through continued smoking or other lifestyle reasons should not be treated too generously.

After all there are a lot of cancers which can now be prevented!

—Has/had cancer, The Entrance Electorate

Dear Premier Cancer patients should be treated free of charge.

—Family member/friend of someone with cancer, Macquarie Fields Electorate

Dear Premier All cancer patients should not have to pay for treatment or car parking when attending hospital appointments.

—Family member/friend of someone with cancer, Newcastle Electorate

Dear Premier

We need to put funds into helping cancer patients. Cancer is a terrible illness and some people die in terrible circumstances. If we can eliminate unnecessary costs and burdens on people who are sick and trying to get better with treatment. Put yourself in a the same situation, you have the power to make change please help those who need it.

— Family member/friend of someone with cancer, Miranda Electorate

77 | Messages to the Premier

Su pporte r from More e

Dear Premier

As a cancer survivor I feel the expense incurred, the overwhelming information at the time of diagnoses, the emotional trauma and the unknown future of the patient all need to be considered in any program to be implemented by the government. My treatment for breast cancer involved attending the Cancer Care Centre for 15 months for IV treatment every 3 weeks. I attended a private facility which meant I had to incur the cost. City patients we able to access it free. The X-rays, nuclear medicine scans on my heart and pathology c osts all had to be covered by me. How is this fair on regional patients? The radiation cost me thousands of dollars and yet a friend from the city didn't pay a cent. This is overwhelming at the time when you are trying to be positive without the added burden of the financial aspects of this treatment.

For me, the money was borrowed for my treatment. — Has/had cancer, Wagga Wagga Electorate

78 | Messages to the Premier

Dear Premier A person living with cancer has enough worries without having to worry about cost of treatment. It can be very confronting trying to deal with all the treatments necessary.

Primary Carer, Strathfield Electorate

Dear Premier A lot of help is needed with cancer patients. We need to raise enough money to help these people with financial needs e.g. more chemotherapy departments, free medication and free transport Has/had cancer, Wyong Electorate

Dear Premier

Families coping with cancer need all the support we can give. They do not need to have the extra burden of using services that add a financial problem as well. — Family member/friend of someone with cancer, Fairfield Electorate

Dear Premier Cancer treatment is not just about medical care. It is about EVERYONE being able to access the best care, look after themselves and their families and be removed from worrying about the day to day arrangements for their care and their lives.

Family member/friend of someone with cancer, Granville Electorate

Dear Premier Cancer patients have enough to deal with as it is. You have the power to make it easier for them. Would you want your family to suffer any more than they have to if you could help them not to? Please do everything you can to assist them with financial and other support. —Family member/friend of someone with cancer, Monaro Electorate

79 | Messages to the Premier

North Shore Times, Sydney 10 Oct 2014, by Danielle Nicastri General News, page 5 - 168.00 cmÇ Suburban - circulation 72,698 (--W-F--)

80 | Messages to the Premier

Dear Premier Action please, to save lives.

—Family member/friend of someone with cancer, Lane Cove Electorate

Dear Premier The stress of cancer is an enormous emotional and financial strain which effects so many people. My personal experience of having an aggressive form of cancer has been devastating. My brother died as a result of brain cancer within a few months and left behind five young children. Please consider the impact of adequate or lack of funding affected by people with cancer.

—Has/had cancer, Hornsby Electorate

Dear Premier As a Cancer survivor following 2 bouts of melanoma in 1990 and 2011 I fully support the efforts of the Cancer Council and sincerely hope and pray that your re-elected Government will do everything in its power to eradicate cancer from our society - I know you cannot do this on your own but you can certainly make the right noises in the right areas for change. God bless you and the family and keep up the good work of change for NSW. —Has/had cancer, Bankstown Electorate

Dear Premier

As one directly affected by cancer (prostate), and having lost my wife to cancer, I would like to stress the need for increased funding in this area. As a voluntary worker at Royal North Shore Hospital and a proud supporter of The Cancer Council, I see the continuing problems caused by lack of financial support. I urge you to increase state funding in this area to enable patient assistance, medical research and carer assistance to be improved.

— Has/had cancer, Davidson Electorate

81 | Messages to the Premier

Dear Premier Patients in the country have a harder time with treatment of cancer.

—Family member/friend of someone with cancer, Murray-Darling Electorate

Dear Premier The Cancer Council is a good organisation with some good ideas. Please listen to them.

—Family member/friend of someone with cancer, Parramatta Electorate

Dear Premier

We need to look at transport as another important issue which families are affected by. Once you're told 'you have cancer', there are so many things to consider. In order to get to your treatment, a lot of people cannot drive, so getting community transport is all that's available for them. In some areas you have to pay for this facility and others you don't. There is no equality. If you have to pay this just adds another cost to the family budget which already has been blown out with added cost of cancer treatment. I sincerely hope this is an important issue to be discussed.

— Primary carer, Parramatta Electorate

Dear Premier Make funding towards ending all forms of cancer in New South Wales and Australia a top priority for your Government. Australia has the highest rates of skin cancer in the world.

—Family member/friend of someone with cancer, Port Macquarie Electorate

82 | Messages to the Premier

Dear Premier

I have a cancerous nasal tumour and I have illegally been using cannabis oil. When I visited my surgeon he could not operate because the tumour had shrunk. My surgeon asked me what have I been doing, I told him I used cannabis oil and he approved of it. I'm thankful for the medicine that helped me so greatly. Can you please legalise it so sick people can access this medicine legally? — Has/had cancer, Lismore Electorate

Dear Premier As a community we MUST increase cancer awareness and let our community know early detection is an absolute MUST. Over 90% of cancers can be treated if detected in the early stages or "stage 1". Government needs to assist in getting the message to our community. —Family member/friend of someone with cancer, Tweed Electorate

Dear Premier I was diagnosed with Ovarian Cancer on my 49th birthday. I am now seventy years of age which I am lead to believe is quite remarkable as my CA125 blood tests within the range considered safe. Having said that I would appreciate it if the new research that is being done on ovarian cancer gets more promotion so that there is a greater chance for other women being able to live out their lives without worrying about the possibility of a recurrence of their cancer. I was fortunate that I was diagnosed when I was in stage 2 ovarian cancer therefore my chances of being operated on, having chemotherapy- 6 sessions, and recovering were far greater than someone who was diagnosed in stages 3 or 4. The crux of my thoughts is that there could possibly be a scheme similar to breast screening. Anyway that is my message to you Mr Premier, please look into the mortality rate of those women who have been diagnosed with ovarian vancer. This will give you cause to pause. —Has/had cancer, Wyong Electorate

83 | Messages to the Premier

Dear Premier Something needs to be done about smoking in clubs. It really is the only main area where staff still have endure cigarette smoke. Even prisons are going smoke free.

—Family member/friend of someone with cancer, Penrith Electorate

Dear Premier I would like to see the campaign and posters about skin cancers and melanoma actually placed on the beachfronts and recreational areas to remind people. I know there already is a big sun safe task force and implementation plan but it doesn't seem to stipulate this.

—Concerned community member, North Shore Electorate

Dear Premier Cancer requires an intense and time consuming battle from the affected and those caring for them. This disease has a ripple effect touching many. It has a great impact on the community and makes life an absolute bitch. I say this from first hand experience, so please be aware your participation is imperative. Show your heart and give us all the confidence to vote and show our gratitude.

—Primary carer, Upper Hunter Electorate

Dear Premier

As cancer touches most of the community in someway, it is of the utmost importance that government does all within its power to fund and make available ALL forms of cancer treatment, research opportunities.

— Family member/friend of someone with cancer, Maroubra Electorate

Dear Premier Legalise the herb from nature!

—Family member/friend of someone with cancer

84 | Messages to the Premier

Su pporte rs fro m More e

Dear Premier

Sadly, we know that cancer affects every family at some stage. To watch someone suffering cancer gives a feeling of total uselessness. The only relief is to see they are receiving the best treatment and care, and this covers many aspects. I have seen friends and relatives suffer from this truly horrible disease, some have survived, and tragically, some not. It is only through ongoing research, and improvements in treatment, that we can hope to keep those we care for alive for longer. — Family member/friend of someone with cancer, Drummoyne Electorate

85 | Messages to the Premier

Dear Premier I am living with prostate cancer I would like to see more support when having treatment and more work go into looking for a cure for the biggest killer of men in Australia —Has/had cancer, Northern Tablelands Electorate

Dear Premier Please help these people the best we can thanks.

—Concerned community member, Wakehurst Electorate

Dear Premier After watching my only sister battle with bone cancer which had stemmed from undetected breast cancer. The only thing I would like to ask is when people have breast reductions is it possible that the doctors send the tissue away for mandatory testing if any cells are present. Also could the intravenous vitamin injections which help support the immune systems ravaged by chemo have some sort of Medicare help.

—Family member/friend of someone with cancer, Wollondilly Electorate

Dear Premier

I cannot understand why your government shows the slightest sympathy to the tobacco industry. The ONLY thing it does is to peddle harm to the most vulnerable and lowest socio-economic level. An industry that does nothing but seek to addict its customers to a very costly path to lung cancer, emphysema and heart disease.

— Has/had cancer, Coogee Electorate

Dear Premier People with cancer need help. Please help —Family member/friend of someone with cancer, Drummoyne Electorate

86 | Messages to the Premier

Dear Premier we need more money for all all aspects of Cancer research and for assistance for people suffering from cancer and families involved —Community member, Heffron Electorate

Dear Premier It is hard to define experience with cancer - I have lost my father and numerous friends unfortunately too many to mention. I am an active fund raiser for cancer research. What saddens me is the inaccessibility of cancer treatment in country areas, subsequently leading to a higher cost of treatment in larger regional centres. It horrifies me that people are opting not to have treatment due to the cost of staying in another town. I live in a regional area and I am not naïve enough to believe that there will be treatment available everywhere. I do however believe that rural patients need to have more affordable accommodation where they have treatment. Please make a commitment to rural NSW to make a health difference.

—Concerned community member, Burrinjuck Electorate

Dear Premier We want strong action re smoking in apartment blocks. Smoking on balconies is creating smoke drift and causing illness and quality of life issues.

Smoking in outdoor restaurants should be banned. Queensland have done it. What is so hard about this? Preventative health is cheaper than treating illness.

—Family member/friend of someone with cancer, North Shore Electorate

Dear Premier

My best friend has just been diagnosed with liver cancer. All the help is needed to research cancer and help patients through this very difficult time — Family member/friend of someone with cancer, Campbelltown Electorate

87 | Messages to the Premier

Dear Premier

The last NSW cancer plan only mentioned children twice and did not mention the 'adolescent and young adult (AYA)' cohort. Victoria has a detailed cancer service for paediatric patients (PICS) and AYAs (On Trac at Peter Mac). I have discussed this issue with the previous Liberal Premier and did not receive any subsequent communication that the government was interested in this issue. Will the Premier actually commit to funding a detailed cancer plan for the paediatric and AYA oncology cohorts or are they forgotten again? — Primary carer, Ku-ring-gai Electorate

Dear Premier As a mother who was recently diagnosed with stage 4 inoperable lung cancer, I have been very surprised about the lack of support for and the horrible stigma attached to lung cancer. While I have been lucky to have received counselling support from the Cancer Council, there still seems to be a general neglect for those affected by this disease which is the Nation's top cause of death. I am constantly reminded of this neglect when I see posters and advertisements about breast cancer.

As a young woman who has never smoked a cigarette in my life, I would like the NSW Government take the lead in increasing awareness that lung cancer is the leading cause of death in women (smoker or not). Early detection is crucial. I wish I knew, for the sake of my 3yr old Jessica. —Has/had cancer

Dear Premier An incentive for patients and carers on changing the buying behaviours of non-processed foods replacing them with seasonal fruit, veggies, organic lean meats and fresh fish. Nutrition is a key ingredient to the wellness of cancer patients in every location city and rural. Let's work together to ensure this generation can act as a catalyst to change food choices. If we are able to directly change the buying behaviours of our food consumption, not only shall it benefit the patients but also encourage better nutrition. This would mean large corporates, Woolies and Coles, work together creating a discount loyalty card for cancer patients. Together we can be stronger by choosing the right foods. Our health is our wealth. —Has/had cancer, North Shore Electorate

88 | Messages to the Premier

Wyong Express Advocate 3 Oct 2014

89 | Messages to the Premier

Northern Star, Lismore NSW 17 Nov 2014, by Luke Mortimer General News, page 7 - 460.00 cmÇ Regional - circulation 9,509 (MTWTFS-)

90 | Messages to the Premier

Dear Premier Please do everything that you can to stop cancer —Has/had cancer, Burrinjuck Electorate

Dear Premier We need all the support from the Government to help in beating cancer.

Fundraising is helping but more support is needed.

—Family member/friend of someone with cancer, Coffs Harbour Electorate

Dear Premier

As a sufferer of skin cancer with a very drastic disfigurement, I implore you to continue your support of cancelling solariums, they are dangerous and cause squamous cell carcinomas and melanomas. If I knew then what I know now, I would NEVER have used them. Young people need to be protected.

— Has/had cancer, Hornsby Electorate

Dear Premier 1. Lung Cancer prognosis in the last 20 years hasn't changed. To be able to get past two years is considered a miracle. To make it past five years is rarely heard of. Why hasn't the treatment and prognosis for lung cancer improved like it has for the other more popular cancers ?

2. Place a commitment to review how cannabis oils and the plant itself can help in the treatment of cancer. There are proven studies and testimonials all over the internet.

—Primary carer, Wyong Electorate

Dear Premier Please support the ideas of the NSW Cancer Council.

—Concerned community member, South Coast Electorate

91 | Messages to the Premier

Dear Premier It is a sensitive subject but a lot more funding needs to go into researching a cure for the 'silent cancers'. It is a disgrace that the survival rate for pancreatic cancer is no further advanced than 50 years ago. It is a tragedy.

The other cancers that need more funding are brain cancer and ovarian cancer. Silent and deadly. I have recently lost my husband to pancreatic cancer and my mother-in-law to ovarian. Diagnosis is difficult and usually too late to cure. Please consider increasing funding to these cancers.

—Family member/friend of someone with cancer, Cronulla Electorate

Dear Premier Do everything possible to save lives —Has/had cancer, Epping Electorate

Dear Premier

Please, can you instigate conversation regarding the out of pocket expenses of pathology services for cancer victims. Personally, I was out of pocket nearly $1000 for pathology on malignant melanoma. I was able to continue working and able to meet this bill but I am a lucky one. If I had to stop work for any period, this would have been financial disaster. Just something else to worry about.

— Has/had cancer, Oxley Electorate

Dear Premier Please listen carefully to Cancer Council concerns and petitions!

—Concerned community member, Wagga Wagga Electorate

Dear Premier I am a cancer survivor. Please help to increase the chances of so many more.

—Has/had cancer, Myall Lakes Electorate

92 | Messages to the Premier

Dear Premier I am sure, as Premier of NSW, you will do your best to fight against the devilish disease which is spreading and creating havoc in Australian Lives.

—Family member/friend of someone with cancer, Sydney Electorate

Dear Premier I support the Cancer Council's campaign to beat cancer. The Parties' responses to this campaign will dictate the way I vote at the next State election.

—Has/had cancer, Sydney Electorate

Dear Premier Please support the Cancer Council in every way possible. The Council needs the full support of Government to help defeat this insidious disease.

—Family member/friend of someone with cancer, Clarence Electorate

Dear Premier

As a registered nurse I would strongly encourage you, and ask that you hasten and ensure marijuana for medical use legislation gets passed through the parliament ASAP. Pain relief is very important for anyone suffering from cancer pain and current medications are not always effective — Concerned community member, Coffs Harbour Electorate

Dear Premier My husband died from cancer and whilst the treatments were good, so much more needs to be done in terms of research. I urge you to include the issues listed.

—Family member/friend of someone with cancer, Cronulla Electorate

93 | Messages to the Premier

Dear Premier

I support the message of cancer services gaps detailed by the Cancer Council wholeheartedly. If you've seen and lived it firsthand, you cannot possibly deny these needs.

— Primary carer, Manly Electorate

Dear Premier Help us beat lung cancer. More funding, more research, more access to trials and treatments.

—Has/had cancer, Wollondilly Electorate

Dear Premier Carers need help as well.

—Primary carer, Maroubra Electorate

Dear Premier Do all you can. Leave nothing undone that you can do.

—Family member/friend of someone with cancer, Drummoyne Electorate

Dear Premier • • •

Legislate for every preventative and precautionary measure, especially clean air, smoke/smoking and vehicle emissions.

Support scientific research.

Make the cancer journey as comfortable and affordable as possible for patients/sufferers.

—Family member/friend of someone with cancer, Maroubra Electorate

94 | Messages to the Premier

Dear Premier Please support requests from Cancer Council.

—Family member/friend of someone with cancer, Auburn Electorate

Dear Premier Cancer care is of enormous importance as the number of afflicted persons is very high. However I will not bother you with figures which without doubt you are very familiar with. Although this State electorate is a NP blue ribbon seat and therefore of no consequence to the Governments of any colouration, people here are suffering just as they do in Newcastle, Sydney or Wollongong. Please use your influence and power to have cancer services improved in the whole of NSW. —Family member/friend of someone with cancer, Coffs Harbour Electorate

Dear Premier

In 2002 my daughter was diagnosed with breast cancer. For the next 8 years the cancer spread through her body including bones, ovaries and liver. She passed away at 11.30 pm on Tuesday the 9th of March 2010.

She was 49 and the mother of a 15 year old girl. It is a vicious, evil disease, painful, debilitating causing years of agony for her family. We must all work together to save these beautiful people and at least give them hope.

— Family member/friend of someone with cancer, Maroubra Electorate

Dear Premier People in rural NSW deserve to have the same quality health care as we have in Sydney. Please have the courage to provide it.

—Has/had cancer, Sydney Electorate

95 | Messages to the Premier

Dear Premier Needs more funding for research and better hospital services. —Family member/friend of someone with cancer, Lakemba Electorate

Dear Premier

Services for regional and rural Australia need more consideration and assistance. The patients have to travel great distances for treatment and when they cannot afford treatment they miss out. Rural patients are just as important as city patients. — Family member/friend of someone with cancer, Port Macquarie Electorate

Dear Premier As a resident of the Hunter Region, neglected in terms of funding relating to cancer treatment until recent media disclosure of the shameful extent of that inequity in funding, I call on the Premier to act to address these issues.

Regional and rural areas require a more equitable share of funding to address the impacts of lack of specialist care, number of available beds and chemotherapy chairs etc.

Family member/friend of someone with cancer, Swansea Electorate

Dear Premier Stop and take a moment to think about the people in the bush.

Family member/friend of someone with cancer, Wagga Wagga Electorate

96 | Messages to the Premier

Dear Premier Look after the people in the country areas who have cancer.

—Family member/friend of someone with cancer, Barwon Electorate

Dear Premier Please consider country and remote area patients and carers when reviewing the health budget. Also note the impact of losing a regional airline to cancer patients undergoing treatment. Some towns only have a once a day service and driving is not an option for someone who is ill. The return journey after chemo must be quick rather than a 4 or more hour journey.

—Family member/friend of someone with cancer, North Shore Electorate

Dear Premier It is imperative that cancer sufferers be able to physically get to the treatment they desperately need, and not be financially disadvantaged by their illness. You must act. Thank you for your support and partnership.

—Family member/friend of someone with cancer, Lakemba Electorate

Dear Premier A lot of people cant afford the costs.

—Has/had cancer

Dear Premier

A person's financial state should not be the determining factor in obtaining the best and stress-free treatment when dealing with cancer. All levels and aspects of treatment should be readily available and affordable to cancer sufferers.

— Family member/friend of someone with cancer, Fairfield Electorate

97 | Messages to the Premier

Nepean News 21 Aug 2014

98 | Messages to the Premier

Dear Premier People who develop cancer and the related problems i.e. lymphoedema have enough to cope with and do not need the stress as to how they are going to afford the treatments required.

—Has/had cancer

Dear Premier Say a member of your family has just been diagnosed with cancer; now as a family man ask yourself how important it would be for you to be near that loved one. Again, ask yourself I. II. III.

how long will treatment take? how much will treatment cost? can I afford the treatment? Expenses might include hospitalisation, specialists, medication, therapies, accommodation, transportation and other cancer related service costs? As The Cancer Council launches it's newest campaign Saving Life 2015: Vision for Change, as Premier you can bring awareness to this issue so appropriate funding can be made available to assist those thousands of Australian's who ask themselves these questions every day.

—Family member/friend of someone with cancer, Hornsby Electorate

Dear Premier

Please do not ignore the cost of chronic diseases caused by cancer, or the cost of hospital admissions where complications arise because of lack of funding for adequate support to prevent complications i.e. cellulitis in lymphoedema patients. Adequate funding for good community support is so important.

— Concerned community member

Dear Premier We need government funding at reasonable levels instigated across the cancer Journey —Family member/friend of someone with cancer,

99 | Messages to the Premier

Dear Premier Please give financial priority to those who are suffering great anxiety and stress due to the diagnosis of cancer, let alone the great financial and emotional burden caused by lack of income, separation from family and long term outcome of their diagnosis.

—Family member/friend of someone with cancer, Northern Tablelands Electorate

Dear Premier

Cancer is so unfortunately widespread in the community. Based on this I urge you to fund it as such and promote collaborative working arrangements in cancer research and care between State and Federal Governments as well as with private parties.

— Family member/friend of someone with cancer, Charlestown Electorate

Dear Premier Introduce funding for cancer issues into the budget —Family member/friend of someone with cancer, Coffs Harbour Electorate

Dear Premier Please provide funding for free compression garments for people of any age who have primary and secondary lymphoedema. Please provide funding for lymphoedema clinics in ALL public hospitals. Thank you.

—Has/had cancer, Hornsby Electorate

Dear Premier Lymphoedema services need to be funded by NSW Health, to make it sustainable for the future. Band-Aid solutions like what is happening in Northern Sydney is not good.

—Concerned community member, Willoughby Electorate

100 | Messages to the Premier

Dear Premier Please support better access to and publicly funded high quality Lymphoedema services.

—Concerned community member, Epping Electorate

Dear Premier Lymphoedema needs more funding and understanding!

—Concerned community member, Heffron Electorate

Dear Premier Please consider Lymphoedema and associated treatments/bandages more seriously.

—Family member/friend of someone with cancer, Hornsby Electorate

Dear Premier

Provide better health care for ageing population. Better diagnosis and treatment for lymphoedema.

— Concerned community member, Hornsby Electorate

Dear Premier Cancer patients have enough to deal with. Let's not make their situation any more difficult.

—Family member/friend of someone with cancer, Wyong Electorate

Dear Premier Please remember that 'together we can make a difference' —Concerned community member, Orange Electorate

101 | Messages to the Premier

Dear Premier Please consider the consequences of giving so much treatment to people we need to support them managing the consequences.

—Concerned community member, South Coast Electorate

Dear Premier

Cancer patients need support. It is a hard, long journey that many people will endure with very little support from State health services. It is just not good enough!

— Family member/friend of someone with cancer, Murray-Darling Electorate

Dear Premier Think about your family… How would you feel if one of them had cancer?

—Has/had cancer, Hornsby Electorate

Dear Premier Bugger the cost, just do the right thing.

Family member/friend of someone with cancer, Menai Electorate

Dear Premier Give cancer patients and their families much more help and consideration in their time of need.

Family member/friend of someone with cancer, Wyong Electorate

102 | Messages to the Premier

Hawkesbury Gazette 4 Dec 2014 http://www.hawkesburygazette.com.au/story/2741936/cancer-forum-hits-up-pollies/

103 | Messages to the Premier

Dear Premier Do something about the appalling situation you have inherited in relation to cancer care in NSW. —Has/had cancer, Davidson Electorate

Dear Premier We hope that you will help us to help ourselves and make this journey a bit easier.

—Has/had cancer, Castle Hill Electorate

Dear Premier

Cancer will affect everyone in some way at some time in their life.

Education, research and co-ordinated care services are the keys to fighting cancer.

— Family member/friend of someone with cancer, Epping Electorate

Dear Premier Do your best to cure cancer before you or your family experience it then it's too late.

—Family member/friend of someone with cancer, Maitland Electorate

Dear Premier My brother suffered the cancer journey at age 46. He at least was able to use his private health cover to lessen some of the burdens for his family. All of the above goals for 'Saving Life 2015' must become a reality! Cancer requires specialist care and services equally to all those suffering despite their circumstance or where they live.

—Family member/friend of someone with cancer, Newcastle Electorate

104 | Messages to the Premier

Dear Premier Get rid of your top heavy management on the big salaries in the health system, and get more skilled workers at the front who have the knowledge and time to improve our health care experiences and achieve better health outcomes, and save the state's money at the same time. Sicker is not cheaper to fix. Act sooner, less problems, less cost.

—Has/had cancer, Maitland Electorate

Dear Premier

Cancer and alcohol are destroying this country's population rapidly.

A priority should be given to the treatments and help the families and carers.

— Family member/friend of someone with cancer, Ballina Electorate

Dear Premier A large part should be dedicated to preventing cancer. One well-known cause of cancer and other (cardio and respiratory) diseases is related to coal, and the damage it inflicts to communities living near coal mines or along the rail corridor. Politicians should stop funding new mines and instead subsidise the renewable energies industry. Most importantly and feasible right now, the Government MUST demand that coal companies cover their loads.

—Concerned community member, Newcastle Electorate

Dear Premier Cut retired politicians payments, pensions and free travel and put this towards better care for cancer patients.

Family member/friend of someone with cancer, Baulkham Hills Electorate

Dear Premier If you can't prevent it, detect it EARLY! —Has/had cancer, Newcastle Electorate

105 | Messages to the Premier

Dear Premier

Early detection is crucial. It reduces suffering, increases survival rates and in the long term reduces costs. My wife has had cervical cancer and a radical hysterectomy. In both cases, detection was later than could have been with a more rigorous screening regimen.

— Family member/friend of someone with cancer, Davidson Electorate

Dear Premier BAN SMOKING IN PUBLIC AREAS! Please make this a state-wide decision, not just something done by some local councils not others.

SMOKING KILLS .. it should be removed from all public areas immediately!

—Family member/friend of someone with cancer, North Shore Electorate

Dear Premier Transportation and accommodation during cancer treatment needs to be provided for the cheapest price or free —Has/had cancer, Albury Electorate

Dear Premier Assess the needs of those who need best care and rank their need in relation to the disease they have. I think each need is candid courtesy. The facilities requested should be tested to ensure the avoidance of important resources being misused.

—Family member/friend of someone with cancer, Epping Electorate

Dear Premier This issue is one that shows how a country regards its own people. There are some very poor quality examples round the world —Family member/friend of someone with cancer, Sydney Electorate

106 | Messages to the Premier

Dear Premier Please maintain and improve the level of service for all medical conditions we don't want an American healthcare system.

Has/had cancer, Port Macquarie Electorate

Dear Premier We need Medicare funding for lymphoedema services and compression garments.

Concerned community member, Willoughby Electorate

Dear Premier Please make lymphoedema services a priority. So many people a dealing with this serious health condition on their own. It effects their everyday living in ways you can't imagine. Any financial support would be incredible.

Family member/friend of someone with cancer, Hornsby Electorate

Dear Premier Our health system needs to be fully funded. My experience with hospitals (my brother recently died of bowl cancer and was being treated in the public hospital system) is that they do not have the staff nor resources required to adequately treat members of the public effected by cancer. —Family member/friend of someone with cancer, Port Stephens Electorate

Dear Premier

There is no qualified person in private practice in Tamworth who is willing or able to provide Lymphoedema services. We have one person in the physiotherapy department in the public hospital who has training in Lymphoedema, but because of her work load in physiotherapy can only provide minimal service. In the Cancer Centre we do not have a physiotherapist to care for Lymphoedema sufferers. — Has/had cancer, Northern Tablelands Electorate

107 | Messages to the Premier

Su pporte rs fro m th e Can ce r Ac tion Ne tw ork

Dear Premier

I have met people who have been on a cancer journey and have been cured, only to find that they were left with a life long problem of lymphoedema. They were supported during their cancer journey by the health system but their lives have been greatly affected by the lack of knowledge of health professionals, lack of access to treatment and cost of treatment of lymphoedema. It is a tragedy to see people who have huge limbs that impacts their quality of life significantly with pain, loss of function to the level of not being able to walk, when the condition is treatable. It is imperative that these people receive funding for compression garments just as diabetics get funding for insulin and needles. — Family member/friend of someone with cancer, Ryde Electorate

108 | Messages to the Premier

Dear Premier Please allocate sufficient funds for control of this dreadful decease which can affect ALL families —Has/had cancer, Wollongong Electorate

Dear Premier You won't understand until it happens to somebody in your family...I hope it never does because services are pathetic!

—Has/had cancer, Coffs Harbour Electorate

Dear Premier

Cancer not only affects the person who has it, but the patients family. To make the cancer battle less of a burden and to alleviate the stress, we need to have services in place to make sure these people with cancer are not forgotten about or made to feel like they are a burden.

— Primary Carer, Tamworth Electorate

Dear Premier You were elected with a huge groundswell of support from Western Sydney which a game changer for your party. Please recognise the major health access issues that cancer patients face in these areas.

—Family member/friend of someone with cancer, Strathfield Electorate

Dear Premier Please help to fix this vital health issue.

—Family member/friend of someone with cancer, Lake Macquarie Electorate

109 | Messages to the Premier

Dear Premier

Cancer affects the entire family, so support in these areas have an extended effect. e.g. providing transport may mean that the main wage earner can continue to work and support the family instead of taking time off and losing essential earnings. This in turn saves the government expense as the transport supports the family to be financially independent. Treatment can only work if the patient has access to it, if it is too hard they may not get essential treatment in time.

— Family member/friend of someone with cancer, Cronulla Electorate

Dear Premier Come out and visit people in rural remote areas with cancer /or fighting cancer and see how they cope. No transport- community transport, limited medical services, no family support, etc.

—Concerned community member, Orange Electorate

Dear Premier I believe we need to ensure all people of NSW should have access to cancer treatments and have ease of access to all relevant services.

—Has/had cancer, Blacktown Electorate

Dear Premier If it was you or a family member suffering would you do something to help?

Stop making a difficult time for people even more difficult.

—Family member/friend of someone with cancer, Blue Mountains Electorate

110 | Messages to the Premier

Dear Premier Services in country areas are being downgraded all the time. There should be a concerted effort to decentralise the services. There is no justification for concentrating the services in NSW (Sydney, Newcastle, Wollongong). If NSW (Newcastle, Sydney, Wollongong) residents had to travel to a country area for some services it would make NSW residents more aware of what is happening in rural areas.

—Has/had cancer, Northern Tablelands Electorate

Dear Premier Thankyou for attempting to reign in the costs stick to it.

—Has/had cancer, Davidson Electorate

Dear Premier Please do not FORGET us in the country regions, we need help to cope with this terrible disease.

—Family member/friend of someone with cancer, Goulburn Electorate

Dear Premier

I believe lack of affordability and accessibility to cancer care services in regional Australia is a massive issue and needs to be addressed urgently.

Let NSW lead the way in providing improved services for the entire community. This is my plea as a young cancer survivor and mother.

— Has/had cancer, Bega Electorate

Dear Premier People living in regional NSW are just as likely to need cancer treatment as city residents, their journey is made so much more painful/stressful both financially and psychologically by the lack of services close to where they live —Family member/friend of someone with cancer, Dubbo Electorate

111 | Messages to the Premier

Su pporte rs fro m th e B lu e Moun ta ins

Su pporte rs fro m Ma nn in g Va lle y

Su pporte rs Amy & Ch ief

112 | Messages to the Premier

Dear Premier As a single widower for 10 years, my three children had their mother become deceased from ovarian cancer aged 33 when the children were aged 1, 3 and 5, there has been very little support. Some local palliative care services under NSW Health were helpful at the time. Among an 11year journey, we have fortunately navigated the cost of travel and accommodation, extended time off work, reduced income earning capacity and care out of our own pockets. Compared to the true cost of medicines, the PBS supported equitable access, although a constraint at the time with three small children. Essentially, we were not eligible for a concession card, and eroded own hard-earned savings over the period of treatment and while re-surfacing over the coming years. While it is understood that there is not an unending funding pool for attendances, medicines, parking, travel and other expenses, short-term assistance or concessions to tangibly navigate this would be real and would have eased the burden. Cancer is ubiquitous and community directed policies to support SNAP (smoking, nutrition, alcohol, physical activity) risk factors remain critical to arrest the prevalence.

Funding will never suffice unless it is linked to lifestyle behaviour change and attention to the underlying and causative effects of cancer. Incentivising or providing concessions to those undertaking positive steps to navigate, reduce their risk and their burden of cost to the health system may be part of a new direction in policy. Additionally, programs for palliative care support may be implemented to be provided to the wider population. One known to the NSW Government is the Quest for Life Centre at Bundanoon.

I look forward to your Government progressing policies for the population of NSW and care and prevention for cancer. —Primary Carer, Newcastle Electorate

Dear Premier

Having attended a cancer function in Sydney last week our family has decided to make a bequest in our will. We feel the Government should do much more to try to eliminate cancer by supporting R and D funding wherever possible and definitely not reducing funding. The Cancer Council raises many millions - it should be a Government priority to do much more. — Family member/friend of someone with cancer, Port Macquarie Electorate

113 | Messages to the Premier

Dear Premier I have lymphedema and need to wear a compression garment. In Australia these are expensive and look horrid. I have chosen to go get coloured ones from overseas. Makes little difference to cost as we get no reimbursement for these. We need to get a) funding for these and b) get someone to supply nicer looking garments in Australia (maybe an incentive for authorized dealer). I know people who don't wear them for the above reasons.

—Has/had cancer, Goulburn Electorate

Dear Premier To help the Norfolk Island people with funding, now that they have to go overseas for treatment as they do not have doctors who are keen to do any theatre work because of litigation.

—Has/had cancer

Dear Premier

Cancer affects approx. 1 in 3 people directly, and I'd guess more than 2 in 3 indirectly. It costs a huge amount to treat - both in the medical system and for those affected. Many, many people suffer. We need more emphasis on prevention and on treating the whole person, in a coordinated way. This will save Government money, citizen money and improve quality of life for patients, family and friends.

— Has/had cancer, Drummoyne Electorate

Dear Premier Lymphoedema treatment needs specific Medicare rebates/EPCP number to cover one hour treatment for a course of 20 sessions to bring under control.

Then compression garments ought to be fully funded, as PBS prescription to control the condition. No garment means no control. Lymphoedema if neglected leads to life threatening infection/intensive care admission costing a fortune. It is cost effective to treat early and control and prevent the deterioration into chronic disease.

—Concerned community member, Sydney Electorate

114 | Messages to the Premier

Dear Premier All we are hearing about in today's climate is budgetary pressure. This does nothing for the standard of living of cancer sufferers. Try to be a little more creative in your thinking and look towards the provision of services that might make a real difference. A small percentage of the lease funds for the port of Newcastle would make a huge difference if allocated to cancer services.

—Concerned community member, Charlestown Electorate

Dear Premier

Please understand the cancer journey nightmare for individuals and ensure services are tailored to those needs. You may have to listen to patients and carers to get this information.

— Has/had cancer, Sydney Electorate

Dear Premier Concern yourself more about people and less about votes.

—Family member/friend of someone with cancer, Lake Macquarie Electorate

Dear Premier When you have cancer, you can't work. So you have less money coming in, if any at all. Then your partner, if you have one, takes leave (any paid leave will run out quickly over the course of a battle with cancer). So you have little or no money coming in and you have to travel over 600km each way to have surgery and chemotherapy and stay there for weeks at a time. Where do you think the money is going to come from to pay for the fuel to get there, for the parking at the hospital and for the accommodation for the patients carer??? IPTAAS requires payment upfront and then only gives you back a portion and the accommodation is capped at a very unrealistic rate that you can't get accommodation anywhere close to a hospital for. Do you think the petrol station, parking station or hotel will take an "IOU when I get my IPTAAS money back"?

—Family member/friend of someone with cancer, Murrumbidgee Electorate

115 | Messages to the Premier

Dear Premier Please understand the cancer journey nightmare for individuals and ensure services are tailored to those needs. You may have to listen to patients and carers to get this information.

—Has/had cancer, Sydney Electorate

Dear Premier

Please make your mark improving health services for those with chronic diseases like lymphoedema and cancer by improving training of relevant professionals to diagnose and treat lymphoedema; make the general population realise not all who are fat or have a fat limb have bad diet and ensure reliable transport and parking options for those of us receiving treatment and attending many medical appointments required as we age our conditions deteriorate. It would be wonderful if free mammograms and other diagnostic tools were available after a cancer diagnosis.

— Has/had cancer, Ku-ring-gai Electorate

Dear Premier I appeal to your universal humanity and Christian values of helping the poor, needy, the sick and the dying--so please can we put more thought into supporting the Cancer patients and their families. Government should be funding a lot of cancer support and research being that this horrible disease is widespread and can hit anyone...I urge you to champion this noble cause, especially so in the next budget.

—Family member/friend of someone with cancer, Manly Electorate

Dear Premier Please lighten the stress for cancer patients and their families by assisting with the costs that are associated with treating this insidious disease.

—Has/had cancer, Albury Electorate

116 | Messages to the Premier

Dear Premier There are too many cancer related charities spending excess money on administrative costs that could be shared if there was a more cohesive structure. Having lost my seemingly well 37 year old sister to bowel cancer, more research and education must be done. Please.

—Family member/friend of someone with cancer, North Shore Electorate

Dear Premier Helping the people affected by cancer is one of your most important jobs.

After all this is practically everyone.

—Has/had cancer, Balmain Electorate

Dear Premier

I am a Lymphoedema therapist. I see many patients each week who live with this disorder and need desperate funding to help with treatment and garments. Without this care, their health often continues to fail and their quality of life is further worsened. Lymphoedema is often a consequence of cancer surgery - it's management must be put high on the agenda for funding and support.

— Family member/friend of someone with cancer, Canterbury Electorate

Dear Premier It is time to look at easing the financial burden and the added emotional stress through lack of services to people diagnosed with cancer in our state.

Saving Life 2015!

—Has/had cancer, Drummoyne Electorate

Dear Premier Please do not cut cancer health services.

—Has/had cancer, Cronulla Electorate

117 | Messages to the Premier

Hills Shire Times, Sydney 20 Jan 2015, by Bev Jordan General News, page 13 - 138.00 cmÇ Suburban - circulation 64,467 (-T-----)

118 | Messages to the Premier

Dear Premier Please do all you can to attack cancer and to make it more bearable for those with it undergoing treatment. E.g. parking, transport, palliative services etc.

—Has/had cancer, Blue Mountains Electorate

Dear Premier It's about time the Government injected more funds to all avenues. So many people are sick of tax payers money being wasted on useless spending.

One that comes to mind is the "rainbow coloured" painting to a pedestrian crossing in Oxford St Sydney for the Mardi Gras at a cost of $100,000. I am sure the Cancer Council could have put these funds to better use. How many other similar money wasting projects have been carried out in the past and present?

—Concerned community member, Myall Lakes Electorate

Dear Premier Of major concern is the high level of inadequate health literacy - greater than 50% - among the Australian population. Similar concerns exist elsewhere e.g. in Europe. We should be taking every action we can to help these people live in a healthy fashion and seek and receive adequate health treatment - even when they don't know enough to seek it or probably follow public health information. So Government should make it easy for communities to help them take reasonable care of their health. We all would benefit from this - with lower health costs overall, and greater spirits of mind and productivity from the more healthy population.

—Family member/friend of someone with cancer, Willoughby Electorate

Dear Premier

For cancer patients living in Western NSW and Far Western NSW, travel and accommodation costs are a huge burden on families and individuals.

The costs involved may force some cancer patients to reconsider their treatment options as they are cannot afford the higher cost of accommodation at hotels or motels and public transport plus be away from their family and friends for an extended period of time.

— Has/had cancer, Barwon Electorate

119 | Messages to the Premier

Dear Premier Improving lymphoedema services and rebates for garments will not only ease the burden on those individuals suffering from lymphoedema, but it will reduce the cost to the health system caused by expensive and frequent hospital admissions for cellulitis. Cellulitis requires treatment with IV antibiotics in hospital for 24-48hrs, followed by at home nursing for once or twice daily antibiotics intravenously for at least a week, and then often long courses of oral antibiotics afterwards. Without treating lymphoedema, patients will often get recurrent episodes of cellulitis (multiple episodes per year). By providing access to garments and a lymphoedema practitioner, the government will be able to minimise the physical and psychological impact of lymphoedema on the individual, but also the economic impact on the health care system.

—Concerned community member, Ryde Electorate

Dear Premier

Please follow common sense and give cancer patients the proper care and assistance that they need. They should not have to deal with extra financial suffering over something that they can't stop.

— Family member/friend of someone with cancer, Parramatta Electorate

Dear Premier Please consider and listen to the messages that we are trying to get across to the Government. These are very important matters that affect a lot of people.

—Family member/friend of someone with cancer, Cronulla Electorate

Dear Premier I implore you to lead your Government to make decisions based on conscience.

—Family member/friend of someone with cancer, Northern Tablelands Electorate

120 | Messages to the Premier

Dear Premier As an advocate of CC Cancer Advocacy Network, it is imperative that people like me are interested to know that cancer concern is not only in the agenda campaign but the implementation of it is considered a priority.

—Has/had cancer, Wyong Electorate

Dear Premier Every person, independent of financial status, is entitled to excellent health care. We are becoming similar to the US in that only those with private health cover get the additional extras. In fact the public system is often making up the shortfall of the private system and bleeding the public of its health $.

—Concerned community member, Pittwater Electorate

Dear Premier

Cancer affects everyone in some way and we as a country and state need a standardised and affordable system of treatment and care for all regardless of socio-economic status.

— Has/had cancer

Dear Premier The word cancer is a really frightening word and people need to be supported from the very beginning. As soon as a diagnoses is made not left to find things out for themselves.

—Has/had cancer, Bankstown Electorate

Dear Premier If your son or daughter, had untreated lymphoedema leading to lifethreatening infection, immobility, genital or facial swelling, loss of income, depression, would you remain apathetic to this condition?

—Family member/friend of someone with cancer, Goulburn Electorate

121 | Messages to the Premier

Dear Premier

If Cancer has affected your family, then you know what we have gone or are going through... If it hasn't, then be thankful for small mercies...

Our husbands, wives, children, parents and other family members need your help to be able to live their lives as comfortably as possible...

Help them, PLEASE...

— Family member/friend of someone with cancer, Wollondilly Electorate

Dear Premier Please do not cut research dollars for clinical trials etc. We have brilliant dedicated medical minds striving for a cure and so many beautiful people dying in the meantime. Even if it involves a "levy" so funding could be increased it'd be well worth it. The statistics show how widespread this dreadful disease is. Please help!

—Has/had cancer, Wyong Electorate

Dear Premier You have the chance do something very worthwhile here in making the journey to wellness less of a financial burden - please don't blow it!!

—Concerned community member, Kiama Electorate

Dear Premier The primary responsibility is for the health and well being of all your citizens, other very important issues like education come afterwards. There is no need having an education if you are too ill to work, or even worse - you die due to a poor health system.

—Concerned community member, Parramatta Electorate

122 | Messages to the Premier

Dear Premier Please visit the oncology unit in Moree and hear from sufferers of cancer —Family member/friend of someone with cancer, Barwon Electorate

Dear Premier Look after the people who need assistance as a lot of cancer patients cannot afford the ongoing costs of care —Has/had cancer, Lismore Electorate

Dear Premier There should be immediate service for people having cancer issues irrespective of location in the state —Family member/friend of someone with cancer, Monaro Electorate

Dear Premier Give cancer patients a fair go and give them free parking and more and cheaper parking —Family member/friend of someone with cancer, Maitland Electorate

Dear Premier

It is time that Lymphedema and its treatment is recognised by the government instead of the burden of care falling to the patient... In this way only those who can afford treatment get the corrected care... I have lymphedema, I write a blog about this and I am in touch with many and the stories are heart wrenching when people do not get the care they need... Having cancer is enough but the side effect of Lymphedema stays with you for the rest of your life... It is a mental, physical and financial burden that no one should have to carry alone... It is time it was recognised.. Thank you..

— Has/had cancer, Maroubra Electorate

123 | Messages to the Premier

Dear Premier Early intervention for lymphoedema after cancer is best —Primary Carer, Ku-ring-gai Electorate

Dear Premier We are from the country. It does not, I believe, give you or the government the right to treat us and our health needs as unimportant. It seriously concerns me that the cost and accessibility of health care to country people is causing reduced health outcomes for country people. Please make equitable health services for all people in NSW a priority.

—Family member/friend of someone with cancer, Orange Electorate

Dear Premier

As a cancer survivor I know what the effects of a cancer diagnosis are.

Cancer affects not only the cancer patient but the whole family. Very often a cancer patient will not be able to do work of any kind. They will face huge health costs as well as emotional, psychological and physical pain every day. As Premier I ask you to do all in your power to support cancer patients during their cancer journey.

— Has/had cancer, Baulkham Hills Electorate

Dear Premier More support is needed for primary carers.

Family member/friend of someone with cancer, —Ryde Electorate

Dear Premier Please consider the needs of people living in rural areas. There should be funding available and facilities developed to ensure that all people have equal access to health care regardless of where they live. We all pay taxes, yet the returns are not always fair.

—Family member/friend of someone with cancer, Northern Tablelands Electorate

124 | Messages to the Premier

Dear Premier Please review the inequities in cancer care and funding. It its not a level playing field and it is time to address this matter.

—Has/had cancer, Blue Mountains Electorate

Dear Premier To give cancer care a much higher priority, together with the Minister for Health.

—Has/had cancer, Balmain Electorate

Dear Premier Please put health first. Without it there is no quality to life ~ everything else is only possible and enjoyable if people have a level of health to be able to live a life that pain free, and not incredibly financially burdened to achieve that.

I cannot comprehend that $ are spent on other frivolous or entertaining pursuits when people are not receiving A+ medical care as and when they need it!

—Family member/friend of someone with cancer, The Entrance Electorate

Dear Premier

Please don't make a diagnosis of cancer harder and more expensive for the country patient, let there be equality of services and costs for all. A decision to live in the country shouldn't mean that your health and pocket should suffer if diagnosed with cancer. We all pay the same taxes as city residents sometimes more.

— Concerned community member, Bega Electorate

125 | Messages to the Premier

Dear Premier Spend Australians money on Australians first, get your priorities right!

—Family member/friend of someone with cancer, Burrinjuck Electorate

Dear Premier The above services are need urgently, but also these facilities and services need to be addressed and improved for all people but scaled as per individuals financial structures so as the people who do not have funds available can be treated immediately.

—Family member/friend of someone with cancer, Heathcote Electorate

Dear Premier

My message is cancer is no discriminator and is wiping out whole families. In order to consign this terrible disease to the history books, State Government must play a much larger role. Much greater funding is needed for research which will lead to prevention. Funding is also needed to assist those who are experiencing the cancer journey. State Government needs to face up to its responsibility to ensure the welfare of its constituents — Concerned community member, Blacktown Electorate

Dear Premier Please do not cut funding to cancer patients and their families. It affects so many people now. We need to focus on how we grow and what we add to our food and industrial areas.

—Family member/friend of someone with cancer, Orange Electorate

Dear Premier More funding needs to be provided to people with cancer and their carers —Family member/friend of someone with cancer, Keira Electorate

126 | Messages to the Premier

Dear Premier

Cancer is an illness that drains you emotionally and financially. You have the power to take one of these two worries from us. Please help!

— Has/had cancer, Bega Electorate

Dear Premier I am a healthcare worker for lymphoedema in the Hunter/Newcastle Region.

I also co-ordinate a support group for people living with lymphoedema.

Many of my clients have lymphoedema due to treatment given to them for cancer, melanoma, prostate cancer, gynaecological cancer, ovarian cancer and breast cancer. We need to see better services for these people. We need to have garments supplied. Lymphoedema sufferers need new garments every 3 to 4 months. Requiring two pairs each time as just washing them daily is a process on its own. Most people can not afford this.

Some people can pay up to $1200.00 for a pair of leg garments. Others $180.00. Lymphoedema can affect any age group or any gender. Post cancer treatment is Secondary Lymphoedema. We also have many Primary Lymphoedema that also require accurate diagnosis, treatment and garments. In the Hunter I have seen two little girls (sisters) born with lymphoedema with a lifetime of suffering ahead. This family like many others have a huge financial burden. If treatment and diagnosis is done early enough and correct garments and treatment plans in place there would be a brighter future for all these people both secondary and primary. Without assistance many of these people go on to developing cellulitis which becomes another ongoing problem affecting their immune system, requiring antibiotic treatment and quite often hospitalisation. It is so much easier to treat people with lymphoedema as soon as the signs become prominent. At this point the health and well being can be maintained before it gets out of hand. These people need your help so they can have a better quality of life.

Thank you Joy-Anne —Has/had cancer, Lake Macquarie Electorate

Dear Premier Please put the needs of the cancer patients as a top priority for funding —Family member/friend of someone with cancer, Shellharbour Electorate

127 | Messages to the Premier

Su uporte rs from Ma nly

Su pporte rs fro m Ma nly

The o & Da na from Ce ssn ock

128 | Messages to the Premier

Dear Premier Just imagine your mother is diagnosed with breast cancer, lives in a rural area and has no car or relatives living close by. Put yourself in my shoes for a moment. Thank you. —Has/had cancer, Cessnock Electorate

Dear Premier I am astounded at the lack of knowledge by health professionals including professors of medicine, surgeons, and specialists, general practitioners, nurses, and physiotherapists and occupational therapists about Lymphoedema its causes, symptoms, complications, treatments and the effects on our communities, the health system. In fact it is deplorable. For example it only took 35 years for myself to be diagnosed with lymphoedema - for those years I was repeatedly told "you are too fat get and exercise and diet", I did so on a number of occasions and though which did not solve the ever present swollen limbs unexplained pain and feeling of unwellness. It is not only cancer patients who can develop lymphoedema and the number of non-cancer patients is four primary patients to one secondary / cancer patient. Whilst there is hope and a high survival rate from a lot of cancers.

Once you have lymphoedema you have it for life and the impact on the sufferers' life in general and their financial standing is highly affected and many are unable to afford treatments, therapies and bandaging and compression garments that keep this insidious condition under control. I will stop here for now as to continue I would probably be typing for hours.

Thank you for the opportunity to address this matter which is dear to my heart. —Family member/friend of someone with cancer, Maitland Electorate

Dear Premier

Treatment of lymphoedema is a particularly important issue - long term chronic debilitating condition, treatment is expensive - garments can cost upwards of $2000 per year, difficulty accessing trained therapists - long waiting lists in public health, lymphoedema does not have a Medicare item number therefore patients are unable to access services privately through EPC program. Overall lymphoedema services are grossly under resourced. — Has/had cancer, Coffs Harbour Electorate

129 | Messages to the Premier

Dear Premier

Please continue to provide funds to the NSW Cancer Council. The work this Council is doing, mainly by volunteers, is important as anyone can be the next person diagnosed. To hear those words, 'you have cancer' is frightening and surreal. Many, many people are affected, not just the patient. Obviously getting the word out about any form of prevention is vital and the Government has the means to do this well, guided by the Council/Association who knows the facts. — Has/had cancer, Port Macquarie Electorate

Dear Premier Working as a lymphoedema therapist in regional NSW and VIC I see first hand the barriers to people accessing our services. Funded hours are extremely limited and there are little to no equivalent services for many hundreds of kilometres which means people I see also at times need to travel long distances to access our services. Waiting lists are growing and more funding does not seem to be forthcoming. On top of this there is the often prohibitive costs of compression garments/bandages etc... This is a survivorship issue for many people who have or have experienced cancer. It has long been an under-recognised and under-resourced area. We do not need funding for yet another 'working party' unless the recommendations from such an exercise are then implemented...i.e.. I believe we need to see funding for the actions/recommendations, not just 'the talk'. —Concerned community member, Albury Electorate

Dear Premier If you or a direct relative were directly affected by this awful disease you will see the extreme trauma the patient and family goes through just to get through the day. You can't even imagine the exceptional job the doctors and nurse's do to support these families and there should be no cost for these families for any part of the treatment. To be with your loved one, to help them through this journey is all that they need and families need to be able to do this without hindrance, and with the FULL support of the government. —Family member/friend of someone with cancer, Wakehurst Electorate

130 | Messages to the Premier

Dear Premier Just imagine your mother is diagnosed with breast cancer, lives in a rural area and has no car or relatives living close by. Put yourself in my shoes for a moment. Thank you.

Has/had cancer, Cessnock Electorate

Dear Premier We are getting better at treating cancer, but still have a long way to go in understanding how and why it starts. Funding research must be given high priority.

Primary Carer, Blacktown Electorate

Dear Premier

Just imagine that if you are in a situation where you are not as privileged as you are. Just try to imagine how hard it would be for you and your family to deal with all the issues that are related to cancer with the lack of services you and the Government will not supply. — Family member/friend of someone with cancer, Maitland Electorate

Dear Premier I would hope that those less fortunate need to be able to get extra finances through being able to apply for "hardship." Times are hard, especially if you have cancer. This needs to supported through the Health service, because stress will only contribute towards poor health. Stress needs to be prevented at times like this. Otherwise recovery may not be achieved and I it is achieved, then it will be a slow recovery due to outside factors, which need to be addressed.

Concerned community member, Tweed Electorate

Dear Premier Recognition of the priorities above and support for research into cancers such as C.U.P that are not understood and do not receive the attention to bring them into the arena of more common ones. —Has/had cancer, Orange Electorate

131 | Messages to the Premier

Dear Premier Take a good look at our current state of health regarding cancer. If you had a loved one with this disease you too would expect everything that is possible to give that person quality of life - physically, psychologically, spiritually, emotionally and financially.

—Concerned community member, Baulkham Hills Electorate

Dear Premier Take care of our pensioners and our people who suffering long illness cancer and families with sick children please —Has/had cancer, Blacktown Electorate

Dear Premier It is neglectful to not be aware that Lymphoedema management/carers are vital to this large area of patients with cancer disease . M.L.D. Therapists and remedial massage therapists and oncology massage therapists need to have provider numbers to assist cancer patients. These therapists need to be included with allied health / medical practitioner management as a team.

—Primary Carer, Heathcote Electorate

Dear Premier Please support our campaigns.

—Has/had cancer, Ku-ring-gai Electorate

Dear Premier

Please fund more lymphoedema treatment services and assistance to make lymphoedema garments more affordable, without these supports, over time I risk losing mobility and not be able to keep working.

— Family member/friend of someone with cancer

132 | Messages to the Premier

Dear Premier

In order to receive cancer treatment and despite being in both Medicare and top cover in a private health fund it cost me many thousands of dollars to travel from the country and then receive the treatment. Prior to this I had no idea of how difficult and costly having cancer can be, especially for rural patients and for those with rarer less 'popular and funded' cancers.

— Has/had cancer, Bathurst Electorate

Dear Premier Get your house in order. Devote time and resources to government schools and lymphoedema services. Diagnosis and treatment options difficult in both country and city - even if near 3 private hospitals may not wish to use or be able to afford treatment and garments. Dearth of lymphoedema awareness and services appalling in a first world country.

—Has/had cancer, Hornsby Electorate

Dear Premier Please support our campaigns.

—Has/had cancer, Ku-ring-gai Electorate

Dear Premier We need to be prepared for the number of cancer patients we will have in the next few years, especially children.

—Family member/friend of someone with cancer, Ryde Electorate

133 | Messages to the Premier

Su pporte rs fro m W est ern Sy dne y Ca nc er Adv oc ac y

Dear Premier

People living with the chronic condition of lymphoedema need access to timely and effective treatment that is publicly funded. There are long waiting lists to access public treatment - the lymphoedema worsens, and is more difficult and takes even longer to treat effectively. Compression garments to keep the lymphoedema in control after treatment are expensive and have to be replaced every 6 months. Without effective treatment, the lymphoedema can worsen, the person is at higher risk of infection and hospitalisation, and symptoms worsen, placing even more strain on resources. Please consider the needs of people living with lymphoedema as a matter of high importance. — Family member/friend of someone with cancer, Cronulla Electorate

134 | Messages to the Premier

Dear Premier Please help and do something. If foreign aid are being given $24M (for example) then give foreign aid $4M less and put it into cancer (it is a disease that affects 1 person out of every 2) those ratings are very high indeed.

—Family member/friend of someone with cancer, Drummoyne Electorate

Dear Premier

Make medicinal cannabis available to the terminally ill and adopt the 5 recommendations of the Senate enquiry into the decriminalisation of Cannabis for the Terminally ill 2013. Start looking at the science around the benefits of cannabis particularly for cancer sufferers and look at the situation with compassion rather than political hysteria.

— Family member/friend of someone with cancer, Tamworth Electorate

Dear Premier I would just like a little more consideration for the people and their carers who need these services, the costs can be crippling.

—Family member/friend of someone with cancer, Blue Mountains Electorate

Dear Premier The public health system needs increased funding and support... not cuts. If patients have access to timely treatments e.g. chemotherapy that assist with better outcomes they could spend less time in hospital and operating theatres. If they have better provision of services for conditions resulting from their cancer treatment e.g. lymphoedema, they will have less hospital admissions for cellulitis and other infections. These infections are a result of poorly managed lymphoedema. Keep the lymphoedema under control and keep people out of hospital....

—Family member/friend of someone with cancer, Maroubra Electorate

135 | Messages to the Premier

Dear Premier Put yourself in these people's shoes and give them all the help that is available. A lot of these people's support comes from voluntary support, and what would cancer patients do without these wonderful people.

—Family member/friend of someone with cancer, Manly Electorate

Dear Premier Seeing as you are the minister for Western Sydney please make sure that no fracking will ever be allowed in that area or anywhere in NSW as it creates cancer causing pollutants. Thank you!

—Family member/friend of someone with cancer, Marrickville Electorate

Dear Premier Please allocate more money for cancer patients and families regardless where they live in NSW for treatment, transport and accommodation.

—Family member/friend of someone with cancer, Wollongong Electorate

Dear Premier

Cancer is on the increase and the best we can hope for is to slow down the amount cases diagnosed each year. I believe that funding towards research, education, treatment and ongoing care are all of great value to us. I have experienced the loss of a husband to cancer and the ongoing effect of raising a family after his passing. I feel through many gaps in the system and would love to see them filled in for those families who will also find themselves in a similar situation in time. I would greatly appreciate the opportunity to highlight my experiences and concerns with you and your team.

— Family member/friend of someone with cancer, Riverstone Electorate

136 | Messages to the Premier

Dear Premier If you receive a cancer diagnosis - you should be entitled to the best of everything to help you through this shocking time of your life!

—Family member/friend of someone with cancer, Castle Hill Electorate

Dear Premier We are a community of thousands of local people looking forward to working with you to reduce cancer rates and improve outcomes for people living with cancer and their carers and family members. Personally, I'd like to see your Hospital Parking Guidelines strengthened and applied to all hospitals - public and private, for-profit and not-for-profit. I'd like cancer patients from regional and rural areas who have to travel to Sydney for treatment to have access to affordable and accessible accommodation close to treatment. And I'd like to see us invest more money in palliative care services.

—Family member/friend of someone with cancer, Heffron Electorate

Dear Premier A person who make decisions on something they haven't experienced, only think you know. Listen to the people who've been there.

—Has/had cancer, Newcastle Electorate

Dear Premier

1 in 2 Australians will be diagnosed with cancer. We need to ensure the physical, emotional and financial burdens for cancer patients and their carers are minimised so that we can continue to be contributing members of society and enjoy quality of life for as long as we're able.

Please help to ensure NSW prioritises the needs of this very large constituency.

— Has/had cancer, Balmain Electorate

137 | Messages to the Premier

Myall Coast News 4 Dec 2014 http://myallcoastnews.com.au/stephen-bromhead-supports-relay-life-campaign-5383

138 | Messages to the Premier

Dear Premier Spend just one whole day walking in their shoes.

—Family member/friend of someone with cancer, Newcastle Electorate

Dear Premier Please do not cut health services to cancer patients when considering the budget.

—Family member/friend of someone with cancer, The Entrance Electorate

Dear Premier

Lymphoedema affects the lives of young and old. Untreated it prevents educated, otherwise healthy individuals from being active members in our workforce and community. We need to embrace the recent research of early intervention, if prevention is better than cure, early intervention saves lives.

— Family member/friend of someone with cancer, Sydney Electorate

Dear Premier What price is a life? I can't save my Dad but I will try to save others from this evil disease. Pancreatic cancer survival rates have not changed in 40 years, YES still 5%. Yet there is finally a glimmer of hope. I am urging the Federal Government to approve Abraxane on the PBS so that the 2,500 Aussies diagnosed annually with pancreatic cancer have the same rights as breast cancer sufferers to obtain Abraxane. Abraxane has been clinically proven to increase pancreatic cancer patients’ survival rate by almost 30 per cent. So there is a drug clinically proven to assist pancreatic cancer sufferers, but only approved for Breast Cancer on the PBS. This is UNFAIR! Breast Cancer $36.10 v Pancreatic Cancer $15,000- THIS ISN'T FAIR. Cancer is cancer isn't it?

—Family member/friend of someone with cancer, Cronulla Electorate

139 | Messages to the Premier

Dear Premier Co-ordinate and establish a separate health division for cancer related health with separate funding and minister responsible —Family member/friend of someone with cancer, Baulkham Hills Electorate

Dear Premier Government provides help for aids patients but cancer patients often die as they cannot afford the treatments needed to keep them alive or help them to live. It's time for dignity and respect to be shown and given to cancer patients and their families —Primary Carer, Wagga Wagga Electorate

Dear Premier Make smoking illegal so people can't smoke with out getting in trouble for it —Family member/friend of someone with cancer, Barwon Electorate

Dear Premier

People suffering with cancer endure mighty problems. They all need care and real consideration to help them during such a critical time. Their lives are at stake. They ought be able to access free services and this includes car parking close to the hospital. I know people who have had to walk at least a kilometre to have treatment at the Mater hospital in Newcastle.

That is really disgusting.

— Family member/friend of someone with cancer, Wallsend Electorate

Dear Premier Please do not ignore the requests made to you by the Cancer Council.

—Has/had cancer, South Coast Electorate

140 | Messages to the Premier

Dear Premier My husband is newly diagnosed with cancer and I now know the incredible stress of not knowing! We don't need any extra pressure from money worries, lack of relevant information and certainly not parking worries.

Please do whatever you can to make it easier for patients and their carers.

Thanks —Primary Carer, Wollongong Electorate

Dear Premier People with cancer lead traumatic lives and need all the support to beat the disease or at least make their journey a comfortable one. People with authority, like yourself and your colleagues, should make an effort to reflect on the challenges that patients face on a regular basis as an agenda item.

Often people with authority will only act when someone close to them is affected. The there thousands of people out there who have someone close to them who are affected. Please act. —Family member/friend of someone with cancer, Blacktown Electorate

Dear Premier Dear Sir/Madam Cancer has become a great epidemic and apart from person trauma -- it will cost the State so much ---not only in "health dollars " but in industry and community function. It could be like the plague or flu epidemic. One third of population dead or disabled. Please set aside money/time to organise government bodies to address these issues and co-ordinate a method of attack.

Has/had cancer, Kiama Electorate

Dear Premier

Please listen to the voices of us affected by cancer and the other difficulties we experience outside of diagnosis: cost of treatment, travel, Lymphoedema issues and costs. — Has/had cancer, Dubbo Electorate

141 | Messages to the Premier

Dear Premier Firstly, thank you for taking the time to read this. As a Testicular Cancer survivor of over 20 years, I feel I have a bit of an inside running on what it feels like to be diagnosed and the subsequent journey since for me. The list of needs that will accompany this letter, have been shortened to allow you all to focus on what can realistically be achieved from what your voters, who have commented through this survey, have identified as urgent needs requiring priority in your thinking.

I don't believe there is any one elected official who will read this, who has NOT been touched by Cancer in one way or another. With that in mind, I suggest that it is now time to see just what we can all do as committed team members of the NSW community, to help ease the emotional and physical strains that a diagnosis of cancer and the treatments can bring to families and individuals.

Once every couple of months, I drive my 86 year old mother to Westmead to see her oncologist. She has been diagnosed with Multiple Myeloma. We try to organise our appointments for times that will afford us the best opportunities to find a parking space. Westmead has a car park specifically for cancer patients, and it's a wonderful contribution, and I thank you all from the bottom of my heart. It is full most times, which says a lot about the number being diagnosed and treated at Westmead. Like I said, we try to organise a specific time and arrive a good hour ahead of time just in case.

I realise that past governments have done the best they can, but we all know there are still challenges out there for us to work on together. I ask that you consider this list of requests, with a compassionate thought for the hour by hour struggle some of these dear people are dealing with, and look to making decisions that are mindful of their needs. During these journeys, they don't have the energy to speak for themselves, and that's what we, the survivors, do on their behalf. We've seen the struggles and we can see the little things that would mean we don't add to their stresses and anxiety.

Thank you again for considering our requests. —Has/had cancer, Hawkesbury Electorate

Dear Premier

Please provide access to cancer care not just for rich people — Has/had cancer, Heffron Electorate

142 | Messages to the Premier

Dear Premier Take on board the fact that cancer is one of the biggest "killers" of people in the 21st century. Everyone needs support and ongoing education.

—Has/had cancer, Mulgoa Electorate

Dear Premier I received outstanding care when treated for Lymphoma at RNSH. I doubt this standard is duplicated across NSW and it should be.

—Has/had cancer, Ryde Electorate

Dear Premier Because many people DO NOT understand the situation of cancer and the affect it has on all members of the family and friends, they find it not a priority. Please walk in the shoes of sufferers and their closest family and friends to understand the horror of not enough or inadequate services for cancer sufferers. Please act positively. One day you may need these services and not be able to have help or worse, not be able to afford them.

—Family member/friend of someone with cancer, Port Stephens Electorate

Dear Premier

People with cancer must have palliative and supportive care when and where they need it throughout their illness and when they are dying.

— Family member/friend of someone with cancer, Ku-ring-gai Electorate

Dear Premier Everyone will be touched by cancer one way or another —Has/had cancer, Orange Electorate

143 | Messages to the Premier

Dear Premier Lymphoedema Services need a higher profile —Concerned community member, Lane Cove Electorate

Dear Premier Many people with cancer in our state would like to know if the government agency, Cancer Institute NSW, is interested in doing anything to address the needs of people affected by cancer. If they are, why not engage with them?

Cancer Voices recent experiences with CINSW have been far from satisfactory and we understand this is the same throughout the cancer sector. As a publicly funded agency, CINSW has a duty to be responsive to the cancer sector, consumers and patients included.

—Has/had cancer, Lane Cove Electorate

Dear Premier Cancer touches everybody.

—Family member/friend of someone with cancer, Hornsby Electorate

Dear Premier

Whilst some cancers can be prevented not all can and of all diseases cancer is the most insidious. When people are ill stress exacerbates symptoms and which often has a flow-on effect to outcomes. When cancer patients and their families cannot easily access screening, early diagnosis, treatment, transport, parking and chemotherapy because they are either non existent or too expensive it has an adverse effect on patients and their families. It is the 21st century and we can no longer blame 'the tyranny of distance' for failing to provide gravely ill people and their families with the medical treatment and infrastructure required to help as many cancer patients as possible survive.

— Family member/friend of someone with cancer, Campbelltown Electorate

144 | Messages to the Premier

Dear Premier It's time for lymphoedema to be understood and for money to be made available so that people can get the help they need. Education, management are the key.

—Family member/friend of someone with cancer, Shellharbour Electorate

Dear Premier

I would like to see that services in general get improved for those affected by cancer whether it be patients or family members or friends of patients.

I have lost family members and friends to this disease and don't feel that the help that cancer sufferers or their families receive is adequate.

— Family member/friend of someone with cancer, Cessnock Electorate

Dear Premier Medicine and education should not be a commodity for corporations to make billions for them and their shareholders while people lay around suffering from diseases like cancer. Yes I understand free markets and so on, however, everything medical seems to be out of step with "other" commodities. Why? Because our governments allow it. I don't want you to increase the size of the PBS, (FED) I want you to regulate the cost as it comes into our State. If they wont play ball, don't let them set up shop.

—Has/had cancer, Gosford Electorate

Dear Premier Work with the appropriate medical authorities on preventative actions that should be taken and the rising cost on the health system would not be at stretching point like it is today. Cancer deaths continue to raise and all we come up with is a new wonder drug that will only treat the "symptom" when it is already too late. Please work on how we prevent it in the first place. The health system should be called the sickness system because all it is doing is treating symptoms that should be prevented in the first place.

—Has/had cancer, Miranda Electorate

145 | Messages to the Premier

Su pporte r from Moree

Su pporte rs fro m Ma nn in g Va lle y

Su pporte rs fro m Dubb o

146 | Messages to the Premier

Dear Premier What happened to the "Smoke Free Health Service." There is people smoking at every entrance of all the NSW hospitals we have been to over the past few years!!! When my son was in hospital isolation post Bone Marrow transplant, he was allowed to take his first walk outside after 4 weeks of life and death recovery we walked straight out into a cloud of tobacco smoke. Hospital staff are too nervous to make a fuss and my attempts were ignored!!! I thought SMOKE FREE was the law!!

—Primary Carer, Port Macquarie Electorate

Dear Premier Take on board the fact that cancer is one of the biggest "killers" of people in the 21st century. Everyone needs support and ongoing education.

—Has/had cancer, Maitland Electorate

Dear Premier Do more to help people afflicted by cancer —Has/had cancer, Shellharbour Electorate

Dear Premier People don't sign up to get cancer - it happens in many people's lives, but if better lifestyle choices were offered and encouraged by the government this would be an encouragement and a help. We have to learn to be pro active when it comes to our health and that should start at school age Governments can encourage and foster that and it would be a saving in the long run and morally right.

—Family member/friend of someone with cancer, Marrickville Electorate

Dear Premier

I wish to help all the people affected by lymphoedema and to give them a better quality of life. To get information to the public and to have access to publicly funded services and garments.

— Has/had cancer, Gosford Electorate 147 | Messages to the Premier

Dear Premier Cancer is a major problem and treatment and support are inadequate Has/had cancer, Newcastle Electorate

Dear Premier

There is a need to review levels of services currently provided to cancer sufferers/access to treatments and services, for people living in regional areas.

— Family member/friend of someone with cancer, South Coast Electorate

Dear Premier Clean air now! Emission controls on diesel vehicles, including bus fleet, and domestic wood fires. The particles get into lungs and bloodstream and right through to poison your whole body.

—Family member/friend of someone with cancer, Maroubra Electorate

Dear Premier Families that live away from major hospitals such as SCH at Randwick and at Westmead Children's Hospital should be able to have affordable and available accommodation. If you live in the eastern suburbs or over 100 kms from the hospital, you have a home and family or a place you can stay at Ronald Mac. If you live 90 kms away in Wollongong you are not guaranteed accommodation and it is a logistics nightmare,expensive and a blurred nightmare of vomit stops to and fever scares only to possibly do it again the next day. I am also single parent without work and on Newstart. Thank goodness for Camp Quality, Redkite, Starlight and even Ronald Mac when we were able to stay there. There was a time when the kitchen sink of chemo, steroids and radiation was being thrown at Jasper my son and if it wasn't for a social worker who somehow found a charity with some funds to allow us to stay some night in a motel across the road. This was only because I just mentioned the stress of the ten consecutive trips we would have had to make. If I'd just been a quieter person and suffered and attempted the alternative, the strain on all would have been extreme.

—Primary Carer, Wollongong Electorate

148 | Messages to the Premier

Dear Premier Melanoma and other skin cancers. Help us protect the up and coming young people.

—Family member/friend of someone with cancer

Dear Premier Do your best.

—Has/had cancer, Bankstown Electorate

Dear Premier

Please consider the plight of individuals, carers and family implicated in treatment /care of cancer patients when deciding upon allocation if funding — Family member/friend of someone with cancer, Davidson Electorate

Dear Premier Sorry for living and costing you money —Community member, Tamworth Electorate

Dear Premier Cancer is curable but research needs to be funded. I have a dear friend who has been a taxpayer all her working life. She is now a pensioner and relies on the public health system to support her during her treatment. I strongly urge you to continue to provide the necessary services of coordinated cancer and palliative care for all patients in need of these services, but in particular to those older Australians, who through no fault of their own, find themselves struggling to find the necessary financial peace at the end of life's journey.

—Family member/friend of someone with cancer, Wollondilly Electorate

149 | Messages to the Premier

Dear Premier

There is a lot of talk about the changes for Medicare in the upcoming budget. Don't send our Country backwards regarding health care. This threat of major change is causing much fear and stress to many lower income, seniors and people with disabilities and illnesses. Please please think of the Australian people, and have some compassion. Don't look at profits and big business so much. Your suppose to help all the Australian people not line the pockets of a small minority. Have a heart please.

— Family member/friend of someone with cancer, Parramatta Electorate

Dear Premier Do not privatise the health care system!

—Community member, Balmain Electorate

Dear Premier Need to sort out the States priorities.

1.

2.

3.

4.

Health Education Transport Emergency services.

Everything else just needs to wait for its turn or gets less funding e.g.

Sports, Arts, and Entertainment etc.

—Concerned community member, Wollongong Electorate Dear Premier Good luck —Family member/friend of someone with cancer, Wagga Wagga Electorate Dear Premier The five areas we are asking the them to take action on include: 1.Increased Aboriginal Workforce in Cancer Services 2.Tobacco Retail Reform 3.No Chemotherapy Co-payments 4.Coordinated Cancer Care 5.More Palliative Care Services —Family member/friend of someone with cancer, Penrith Electorate

150 | Messages to the Premier

Su pporte r from More e

Dear Premier

Rural people have transport difficulties that those in the city cannot understand. I hope the State health departments can be more innovative in ways that they improve the access of isolated people to city-based health services, particularly those that are very large, have limited parking and a considerable distance from country trains and buses. Many of the patients who require family carer assistance may be cancer patients, but the services that support transport/accommodation/ parking would assist those with burns, brain and spinal injuries and other long term intense treatment programs. My suggestion is to provide a parking station and reception/ waiting room at points outside a city with a free bus service to a group of city hospitals, once daily. There should be a fee for the service, but it should be significantly subsidised. Making plans when you are coping with a family member's crisis is difficult. This would reduce cost, while screening recipients by being limited (it's your choice and so it would appeal only to those who are making an intense commitment over multiple days). By multiple hospitals being linked to a single parking place on the incoming highway, fluctuations in demand would be reduced. — Family member/friend of someone with cancer, North Shore Electorate 151 | Messages to the Premier

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152 | Messages to the Premier