12 – 14 AUGUST 2009 ROTORUA

Ka mana nā te Mōhio – Kōawhitia te Hauora, Whakanuia te Oranga

Empowered by Knowledge – Embrace Health, Enhance Well-Being

DAILY NEWS ISSUE 1

FORUM STEERING GROUP

The coalition of Māori

Cancer care services and

Forum Steering Group

comprises of the following

Māori cancer care services,

including five Ministry of

Health cancer care pilot

programmes: Aroha Mai

Māori Cancer Support -

Kaitiaki Nursing Services

– Kimihauora Health

Centre - Northern Cancer

Network - Tamaki PHO

- Te Kahui Hauora - Te

Kupenga o Hoturoa - Wai

Health - West Coast PHO

Quote of the day

Mihi Whakatau – from left to right: Michael Naera, Trevor Maxwell, Ngamaru Raerino T he opening of the National Māori Cancer Forum

yesterday is “unique because it is driven by Māori community services”. “Current systems are not serving

our whānau, and it is time to work together to improve outcomes for our whānau” said Edith.

Sponsors, supporters and coalition partners have all played a significant role

in ensuring this Forum occurred. In particular chairperson Edith McNeill

acknowledged the National Māori Coalition of Cancer Services and Forum Steering Group consisting

Aroha Mai Cancer Support Group, Te Kahui Hauora Trust, Tamaki Healthcare, Te Whānau O Waipareira,

Nimohauora Health Centre, Te Kupenga O Hoturoa, Northern Cancer Network, Kaitiaki Nursing Services,

West Coast Primary Health Organisation.

Following Edith’s opening presentation the Honourable Tariana Turia presented

an honest and passionate address describing a recent personal experience of sitting

with close friend who is on a journey with cancer. “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”. This represented enormous strength and gut-wrenching determination seen

in other whānau who confront the experience of cancer.

Tariana Turia describes the “daring” involved as cancer patients attempt to live a normal life while “navigating

the complexities of the health system”. She also articulated the importance of incorporating ‘revolution’ into the

theme of this Forum. “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”.

It is not just one big C – there are many. Collaboration, coalitions, cooperation, courage, capability,

competency and courage. Amongst many other valid and thought-provoking considerations during this

opening address, Tariana expressed the critical importance of cultural competency for all health workers and

requires that we all champion whānau ora.

“Taken-for-Granted” Knowledge - To Maintain or Challenge?Health researchers Bridget Robson and Dr Donna Cormack reiterate that to achieve the highest attainable standard of health by all is the pinnacle of health researchers and practitioners.

Ms Robson’s research interests include the social and economic determinants of health, access to and quality of health care for Māori, and the impact of racism and colonialism on Māori health and disparities.

No one would disagree that every human has a fundamental right to health, irrespective of their ethnic status, smoking status, weight or any other factor. The fact that, overall, Māori have a 9% higher incidence of cancer and a staggering

77% higher cancer mortality rate is indicative that there is an issue of disparity to address.

There are some encouraging signs that the tide may be turning, specifically in relation to cervical cancer, where incidence and mortality are decreasing faster amongst Māori than non-Māori. It is thought that these changes are as a result of improved Māori provider focus, national screening campaigns, centralization and specialization of treatment decision-making standards, and specific attempts to address co-morbidities (e.g. quit smoking support).

Co-presenting with Ms Robson, Dr Cormack’s research interest is the collection and classification of ethnicity data in New Zealand, especially as it relates to measuring and monitoring disparities, recently in relation to cancer outcomes and access to cancer services.

“Unequal Impact: Numbers and Narratives” is the title, and again the theme of disparities between Māori and non-Māori health statistics is in the spotlight. The presenters remind

us poignantly that although we hear a lot about the numbers relating to the unequal impact of cancer for Māori, we need to remember that the numbers represent real people; they represent our whānau, our hapu, and other people we care about within our communities.

The point at the crux of this presentation is that there needs to be a focus on alternative ways of looking at cancer disparities. It is not just one alternative viewpoint that is required, but a need to completely redesign the paradigm and look at wider influences such as inherent issues around Crown obligations under the Treaty of Waitangi , and the responsibility for institutions and groups to reconfigure systems that privilege some groups over others. Revolution, being the kaupapa of the Forum, provides a focus for looking at revolutionary ways of talking about cancer care from a uniquely

Māori perspective

TODAY’S WEATHER TOMORROW’S FORECAST

80 - 110C 130 - 110C

MC Scotty Morrison

Commitment leads to action. Action brings your dream closer. Marcia Wieder

Dr Koea’s research interests read like

a foreign language to the average

layperson. They are testimony to

the extensive medical training and

practice he has experienced both in

New Zealand and overseas.

40 years ago when patients with

colorectal cancer were diagnosed, they

endured 6 months of chemotherapy and hoped to be in the

40% who were disease free in 5 years. Since then the process

has changed significantly, altering the journey with cancer for

patients considerably.

Fast forward to the present and a similar patient will require

3 preoperative visits, admission for resection of the primary

tumour, radiological staging, single/multiagent systemic

therapy with up to 6 agents, further staging / surgery for

metastatic disease, ongoing surveillance colonoscopy, blood

tests and imaging. The expectation is that all patients with

localised disease and up to 60% with single site metastases will

be cured. These patients attend 10 OPC, 2 inpatient surgical

admissions, 30 outpatient oncology treatments, 3 outpatient

radiology appointments, 2 outpatient endoscopies within

a 12 month period of therapy before entering a follow-up

program.

In relating this area of research to the Māori situation Dr

Koea refers to the difficulty for Māori patients in travelling to

large urban areas where contemporary treatment and clinical

Storytelling transcends age and ethnicityAs with other cultures, American Indians use storytelling to transmit messages as a part of day to day life.

Through Dr Felicia Hodge’s poignant, personal and captivating presentation it is clear that just as a child is often

entranced and engaged through storytelling, a patient experiencing cancer will often share more and paint a

“fuller” picture if given an opportunity to storytell.

Storytelling is a unique way of gathering data and undertaking research. It allows the storyteller to articulate more

than the simple facts and often value sets and historical data is included within the telling of the tale, therefore

providing the researcher with more robust information. In Dr Hodge’s capacity as a researcher, undertaking a 6

year project in the Arizona area, Dr Hodge has learnt through journeying with cancer personally just how to ask

the right questions, and more importantly, how important it is to ask. “Obtaining information through storytelling on the meaning of

illness and wellness, the cultural constructs of cancer, or the experience of an individual as they undergo the transformation from relative

wellness to being a patient provides individuals with a forum for personal introspection” says Dr Hodge.

Dr Peter Jansen has a firsthand experience

of cancer and what’s important in

the care of cancer patients. His own

experience, related in a very personal

and, at times, humorous manner, comes

from his experience with head and neck

cancer in 2002, at a time when Mauri

Ora Associates were just starting their

research project on Māori Experiences of Care. As he was treated

and convalesced, so the research project unveiled. Studies have

shown that Māori have lower life expectancy than non-Māori in

NZ and greater rates of illness or disability. Māori also receive

less consultation time with their GPs, less access to some health

services, fewer referrals to specialists and fewer investigations.

Research undertaken by Mauri Ora Associates sought to

understand what lies behind the paradox of Māori having higher

health needs but actually receiving lesser health services.

It found a significant proportion of Māori have such negative

experiences of health services that they say they are less likely

to access medical care when they need it. These results strongly

suggest that the quality of interaction with health professionals

can affect the patient’s experience. While most Māori are getting

good service from their health professionals, a sizeable number

of Māori patients feel that health workers have negative attitudes

towards them. This means they may avoid seeking healthcare in

the future. The research offers pointers to ways to improve Māori

patients’ use of healthcare services, by focusing on identifying

and improving health providers’ attitudes and behaviours.

Through Dr Jansen’s personal experience of cancer other insights

have been documented, including:

• that it's difficult for contemporaries to cope with life-

threatening illness as it raises issues of mortality;

• tamariki (children)and kaumatua (elders) found it easy to

cope with;

• family and close friends step up and help - just like you

would;

• denial is really helpful in allowing you to act normal for a

while - in the same way, you can cry, laugh, bargain or get

really angry depending on what you need to do at the time;

• the oncology and ENT (ear, nose and throat) specialists

know what they are talking about. They are a great source of

information and help - use them!

Dr Jansen's personal experience and research findings show

that support from whānau, friends, and colleagues - a sense of

connection - predict post-cancer quality of life. By focusing

on identifying and improving health providers’ attitudes and

behaviours, it is expected that Māori patients’ use of healthcare

services will improve and so too the outcomes of treatment.

When asked what the three key requirements when treating a

patient with cancer are his response was

1. To feel understood – to know the healthcare professionals

know what they’re doing

2. That the information given is understandable

“Ka pai tena”, he says candidly and honestly when I ask the question, “yes, you can use the personal stuff, just don’t make it soppy or too positive ... it happened, it was shitty, then I got better. I am no hero, no poster boy for anything. I am not able to claim greater insight than anyone else, and I certainly can’t represent consumers because of my medical bias”.

He Ritenga Whakaaro (Māori Experiences of Care)

trials are available. Add to this the dislocation from whānau

and support structures, and the complexity of the process adds

significant stress.

The difficulty for the surgeon is “looking at what the patient wants

rather than what the surgeon wants” says Dr Koea. During his

presentation Dr Koea addressed what Māori want within the

process, specifically empathy, practical assistance, competence,

warmth, honesty, respect and care, along with a process that

meets cultural needs, and providers who are willing to meet

cultural needs half way!

Cancer treatment is compared to a fantastic complex machine

that has evolved rapidly over the last 10 years, and Dr Koea relates

going through cancer as akin to getting lost in that machine. He

poses the question, “How do you come back from it?” and refers

to the physical, emotional, temporal, and often financial costs

to the patient and whānau that are only now just being realised.

Treatment is multi-disciplinary, complex and prolonged, and

cancer has assumed the status of a chronic disease (rather than a

fatal one) with survival and cure rates improving. Even after the

cancer is gone, and patients are told to “go and live”, there are

often continuing anxieties and uncertainties over patients’ future

as monitoring continues to ensure that they remain well, or to

deal with the physical and emotional aftermaths of the illness.

Dr Koea’s research correlates well with other keynote speakers and

presents with his conclusions that clear guidance while always

understanding and acknowledging the importance of whānau

and culture is critical as a part of this process.

More than just a journey through time

He tatau pounamu, e kore e ngaro

Inner peace and beauty (the door of greenstone), is never lost. This is the key principal behind the guidelines announced

by the Ministry of Health for the management of early breast cancer. Developed to ensure practitioners are aware of

and implement optimal evidence-based treatment, the guidelines cover the period from a person’s diagnosis through to

treatment for early breast cancer, and include recommendations for follow up.

Māo

riMāo

ri

He tatau pounamu, e kore e ngaro