Tariana Turia

12 August, 2009
Revolution of Cancer Care for Maori and Whanau

Last week I sat at the hospital bed of a very good friend, whose journey with cancer had taken on a sudden and unexpected shock turn.

Instead of sinking into a deep chasm of sadness, she sat up, faced life in all its challenges, and started talking about her hopes and aspirations for her husband, her daughters, and her mokopuna yet to be born.

It reminded me yet again, of the incredible strength and gut-wrenching determination that I have seen with other whanau members who confront the experience of cancer in their midst.

I see their bravery as they experiment with new treatments, in the search to extend their life.

I am amazed at their boldness as they set in place plans for life to continue without them.

And I am in awe of their daring as they attempt to live a normal life, while at the same time navigating the complexities of the health system; undertaking rigorous treatment regimes, and coping with the mammoth physical and psychological ordeal forced upon them by the cancer.

Indeed for some of our whanau, the experience of cancer epitomizes what African-American activist, Angela Davis describes as a revolution:

“Revolution is a serious thing, the most serious thing about a revolutionary’s life. When one commits oneself to the struggle, it must be for a lifetime”.

As I have seen far too many whanau members take on the challenge of cancer, I have been overwhelmed at the serious commitment, in some cases the dramatic turnaround that has taken place, as they each take on the fight of their life.

It makes, therefore, perfect sense that this inaugural national Maori Cancer Forum is called the Revolution of Cancer Care.

The struggle we are all committing ourselves to, is the pursuit of whanau ora. And it is indeed, the most serious thing that I will ever commit to – the pursuit of wellbeing for all of our whanau.

Wellbeing which is manifest in safe, loving and healthy homes. Wellbeing of body and soul; embracing the entire whanau.

Whanau ora will come when we are able to make decisions about our own lives, and to participate in all aspects of life.

It will be seen when whanau members, with or without cancer, are supported and nurtured to feel confident in the future possibilities available to them.

I love the concept of revolution of cancer care. It brings into being the ‘circle of wellness’ which can lead to ongoing health through being informed by the knowledge of all available options.

But revolution is also about the fundamental rethink that we need to take in ensuring services are effective, timely and accessible for our people.

And let’s face it, a revolution is needed.

The fact that this conference is even being held is due to the stark realisation that Maori have a higher incidence, frequently advanced disease at presentation and higher death rates from cancer.

As we all know too well, Maori are 18% more likely to be diagnosed with cancer – we have 3-4 times the incidence of lung cancer, five times the incidence of primary liver cancer, and twice the incidence of cervical cancer when compared to non-Maori.

Of the most concern of all is the fact that mortality data shows that Maori are nearly twice as likely to die from cancer as non-Maori.

So there’s no denying, the revolution is needed, and it’s needed now.

But what will that revolution consist of?

I want to suggest that there are four essential components for the revolution of cancer care – and they are all variants on the Big C.

We have all been part of those hushed conversations, when it is too painful to give a name to what we have been fearing all along – and so out comes the code, the big C.

But it seems to me, that perhaps there are some other concepts that are also being kept out, forever marginalised, as Jonathan Koea would suggest, the ‘ghosts in the machine’ – the experiences of Maori in the New Zealand health system.

The first is CARE.

Our ability to care for our whanau inevitably calls on us all to continue to speak out about the risks of smoking as a contributing factor in not just lung cancer, but many other cancers and chronic diseases. Smoking kills.

I am determined to fight this on every front. I am looking into the impacts of raising tobacco taxation in reducing prevalence; I am reviewing smoking cessation programmes to ensure their effectiveness; I will continue to present the research evidence which demonstrates the role tobacco displays have in making cigarettes visible and therefore viable.

But care is also about access to primary, secondary and tertiary healthcare. We know that access to early detection through screening; followed by timely and quality treatment can have a big impact on cancer outcomes.

And yet the experience for Maori has too often been marred by late presentation of cancer, significantly longer transit times from diagnosis to treatment; and poor engagement with mainstream providers.

The cost of cancer care –including travel, accommodation and family expenses is a major barrier to access. The funding available is often only a partial reimbursement – requiring upfront payment which can often be significant.

On top of that employment conditions – including flexibility in working hours or leave entitlements, all impinge on the ability of whanau to attend appointments and undertake treatment.

At times the barriers appear insurmountable – and yet I remind us all, that reducing waiting times for cancer treatments is one of the health targets for 2009/10 – and that to achieve this, the Ministry of Health has a joint work programme on cancer with district health boards and the four regional cancer networks.

And that brings me to the second set of Cs - Collaboration, coalitions and co-operation.

I want to congratulate the National Maori Cancer Service Coalition for the leadership you are showing, in your collective force.

This is a wonderful occasion to recognise the combined strengths of the Northern Cancer Network; Tamaki Healthcare; the Aroha Mai Cancer Support Group; Te Kahui Hauora Trust; Waipareira Trust; Kimihauora Health Centre; Kaitiaki Nursing Services, West Coast PHO, Waitemata DHB and Te Kupenga o Hoturoa PHO.

Apparently when Fidel Castro was asked how he managed to spearhead the Cuban Revolution, he said that he started off with 82 men, but “if I had to do it again, I could do it with 10 or 15 and absolute faith. It does not matter how small you are if you have faith and a plan of action”.

The ten organisations included in the Coalition give us all hope, that together, our combined knowledge, skills and expertise, can be applied to the goal of attaining whanau ora.

We need to have faith in each other, to strengthen our networks, to search far and wide to provide the co-ordinated service delivery that will best serve whanau.

The plan of action that Castro promotes, is just as applicable in the case of whanau. Having a care plan at diagnosis, and then the systems in place to ensure the information and the workforce are all assembled to put the plan into action, ultimately means that whanau can work through the cancer journey in a far more painless and supportive way.

The third set of Cs is around capability and competency.

To achieve the revolution of access to treatment requires understanding of the complex and multi-dimensional needs for whanau.

Sometimes it is as easy as asking the question. In a paper published last year, The Road we travel, Maori experience of Cancer, the wife of a patient with throat cancer praised a Maori doctor who asked her what she wanted to know. She wanted to see her husband’s throat - and so the doctor arranged this with the specialist.

Later today, it will be fascinating to hear from Dr Felicia Schanche Hodge in her presentation, ‘Learning how to ask’, documenting the stories among American Indian Cancer survivors.

It is about being fully informed about the treatment, the effects of the medication, keeping communication going.

It is about system-wide improvement across the cancer continuum including improving early detection or palliative care.

Cultural competency must be seen as an essential approach to training for all health workers – including the recognition that well-being can be just as closely linked to mirimiri, to karakia, to the loving embrace of whanau is any other aspect of care.

And this leaves me with the final C: C for Champions.

The revolution of cancer care we require, is one in which we all champion whanau ora – and within that; we understand there may be particular people within the whanau who provide the vital leadership and support to keep whanau well.

Helping whanau to navigate the health system is something that can be done both within the health workforce, but also within the whanau. This is what we mean by gold standard service – that whanau are aware of their entitlements; and are resourced to have the support they need.

Championing whanau ora may mean a fundamental rethink of existing services – to recognise the important role that whanau play in supporting Maori affected by cancer. We need to invest in whanau input and participation.

Services must enable whanau access to all the appropriate information; and to provide whanau with sufficient direction and support for them to determine what it in their best interests.

All of these aspects – improving access to care; promoting the value of collaboration; investing in capability and competency; and championing whanau ora - are just part of the journey to wellbeing that this conference will debate.

But I return again, to the inspiration of my friend; the experience of too many whanau members who confront the reality of cancer; the enduring memory of my mother.

For perhaps the biggest C of all is what we need most to ensure the revolution in cancer care takes place – and that is Courage.

Let us live up to their legacy.

ENDS

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