ADJOURNMENT;Brain Cancer Action Week, National Palliative Care Week – 13 May 2014

National awareness weeks are powerful tools for raising public awareness of important issues and encouraging discussion in the community. I rise tonight to speak about two such campaigns: Brain Cancer Action Week, which was held recently; and National Palliative Care Week, which is soon to be held. Both of these awareness campaigns are on important public health issues which are of particular interest to me. They are causes of which every Australian should be aware.

This year’s Brain Cancer Action Week took place a couple of weeks ago, from 27 April to 3 May. Launched in 2010, Brain Cancer Action Week is an initiative of the New South Wales Cancer Council in conjunction with a number of other organisations. I have a close working relationship with two of these organisations—Brain Tumour Alliance Australia and Cure Brain Cancer Foundation—in my role as co-convenor of the parliament’s Brain Tumour Awareness Group.

The other partner organisations are the Cancer Institute New South Wales Oncology Group Neuro-Oncology, Grey Matters and Sydney Neuro-Oncology Group. While several of the participating organisations are based in New South Wales, Brain Cancer Action Week events were held across Australia, in every Australian state and in the ACT.

Cure Brain Cancer Foundation held the Brain Tumour Support and Education Forum at the Menzies Hotel in Sydney on 1 May. The forum was an opportunity for people diagnosed with brain cancer and their carers to learn from experts and ask questions about clinical care, treatment options, current research, clinical trials and support and community services. Parallel forums were held in every state of Australia and the ACT, and the forum was webcast to allow people from around the country to participate.

The keynote speaker, Dr Shivalingam from the Royal Prince Alfred Hospital, gave an overview of current clinical care and research for brain cancer. One of the issues which Dr Shivalingam touched on was the need for the various brain cancer care and treatment services to be collocated in specialised neuro-oncology centres, and patients individually case managed so that they can receive the best information and integrated care available. Dr Shivalingam also talked about some of the difficulties in rare cancers ,such as brain cancer, receiving research funding under the competitive grants based funding model under which health research grants are currently awarded. For anyone with an interest in the proceedings of the forum, video recordings of all the speakers are available on the Cure Brain Cancer Foundation website at

Another Brain Cancer Action Week event was the visit of the advocacy group Grey Matters to the New South Wales parliament. They held a forum to address people of influence from across New South Wales to talk about what has been achieved so far in the fight against brain cancer and what the next steps are. One of the speakers at this event was brain cancer survivor and rugby player Julian Huxley. I am sure there a number of people in this building who would know Julian’s mum—Keri Huxley—very well. She has worked tirelessly in her efforts to try and find a cure for brain cancer.

Other events held across Australia during Brain Cancer Action Week included fundraisers and community information sessions. One of the major fundraising events was a 1,000 kilometre bike ride from the Story Bridge in Brisbane to the Sydney Harbour Bridge. Nine riders completed the fourth annual Bridge to Bridge Charity Ride, and raised over $18,000 for Cure Brain Cancer Foundation to fund research and awareness-raising initiatives.

During the week, as an awareness- and fund-raising initiative, the Cancer Council New South Wales sold grey ribbons and encouraged supporters of brain cancer action to wear them, with the proceeds going towards brain cancer research projects. In my home state of Tasmania, a morning tea was held to raise money and awareness of brain cancer.

While I have many reasons to be passionate about raising awareness of brain cancer, two in particular stand out. As most people in this chamber would know, six years ago I was diagnosed with, and survived, two brain tumours. While my experience was relatively short compared to that of many brain cancer survivors, I have experienced the fear and uncertainty that comes with that diagnosis.

It has been my ambition, ever since, to do what I can to support other brain tumour and brain cancer patients, and to do all I can to help find a cure and to bring awareness to the issues around brain cancer. The other, perhaps more important, reason is that brain cancer is the No. 1 cancer killer of Australian children. That is right; it is the No. 1 cancer killer of Australian children. I can imagine few, if any, priorities of this parliament more important than saving our children from deadly diseases such as brain cancer, and giving them a chance for a proper childhood. Unfortunately—and I expanded on this in an adjournment speech in March this year—brain cancer receives a disproportionately small slice of cancer research funding. That is an injustice which I hope campaigns like Brain Cancer Action Week will be able to help turn around.

The other awareness week I wish to talk about tonight is National Palliative Care Week, held this year from 25 May to 31 May. This is coincides with Senate budget estimates week, so I will not get a chance to speak on it through that week. That is why I wanted to speak on it tonight.

As a co-convenor of Parliamentary Friends of End of Life Care Group, I am passionate about quality end-of-life care, and I am passionate about palliative care patients having choices about what care they receive and where and how they receive it. On 20 March, in this place, I delivered an adjournment speech about palliative care and the importance of Australian society having better conversations about end-of-life issues. Each year, half a million Australians experience the impact of a terminal illness, yet we are not very good at having conversations about dying. It is not something that comes naturally to us. Unfortunately, this leads to lack of knowledge and preparation when it comes to providing quality end-of-life care.

An initiative of Palliative Care Australia, National Palliative Care Week was established to help raise greater awareness of end-of-life issues. In particular, Palliative Care Australia wanted to encourage people to have conversations with their families and loved ones about end-of-life care when they are well, and not leave it until they are close to death. The theme for National Palliative Care Week 2014 is ‘Palliative care is everyone’s business: let’s work together.’ This year’s theme is about celebrating the people who work in palliative care—doctors, nurses, volunteers and carers, to name a few—and the important role they play in providing quality end-of-life care. The theme is aimed at educating the community about the various roles in palliative care and it is also about encouraging people to think about what their role might be.

What would you do if your partner or spouse, your father or mother, or another relative or loved one was diagnosed with a terminal illness? Have you had this conversation with them and talked about what your role would be in their care? In calling on Australians to confront these questions, I refer back to two words in the theme of National Palliative Care Week 2014: ‘everyone’s business’. In other words, if you work in the medical profession, you will confront palliative care issues regardless of whether you work in palliative care or in other areas. And if you do not work in the medical profession, you will still confront palliative care issues at some time in your life—for your parent, spouse, child, friend or even yourself.

The key event for National Palliative Care Week will be an education forum and breakfast at Parliament House on 29 May. The breakfast will be hosted by Julie McCrossin and addressed by health-care ethicist Dr Sarah Winch from the University of Queensland. The breakfast will be followed by a full day education forum for health professionals and stakeholders. Some of the many events being held in my home state of Tasmania include information sessions for general practitioners, organised by the home and community care organisation The District Nurses; a memorial service for bereaved carers in Launceston; and a morning tea at the wharf complex in Burnie for patients, carers, volunteers and staff. There will be various promotions for National Palliative Care Week, including full-wrap advertising on buses in Hobart, Launceston, Burnie and Devonport.

A report co-authored by the World Palliative Care Alliance and the World Health Organization titled The global atlas of palliative care at the end of life estimates that a minimum of 40 million people worldwide require palliative care annually. The WHO is meeting in Geneva next week and considering a resolution which urges countries to integrate palliative care into their healthcare systems. This means cementing palliative care into the basic and continuing education and training curricula for all health workers, and ensuring that relevant medicines, including strong pain medicines, are available for patients.

Australia is one of the world leaders in palliative care service provision, yet we are unable to meet the palliative care needs of most patients who need it. Two actions Palliative Care Australia are calling on during National Palliative Care Week are to develop a palliative care workforce strategy, which embeds palliative care into the education and training of all health professionals throughout their careers, and to fund the Palliative Care Foundation scholarship program to support health professionals in furthering their palliative care knowledge and education, which was a recommendation of the Senate inquiry into palliative care. I wish them luck with this campaign, but I will be happy if my contribution to the adjournment debate tonight has achieved one simple thing—that is, to encourage more Australians to have conversations about the end-of-life care of their partners, families and loved ones, and what their role will be. The time to start these conversations is definitely now.