Whānau speak of barriers to prevention and treatment of cancer in new report

Many whānau struggled to navigate the health system through their cancer diagnosis and then on into their treatments, Te Aho o Te Kahu acting equity director Sasha Webb says. Photo: RNZ

By Pokere Paiwai for RNZ

Te Aho o Te Kahu - Cancer Control Agency has released a report highlighting the experiences of Māori within the cancer system.

The report, Rongohia Te Reo, Whatua He Oranga, is the result of a series of 13 hui across the country where more than 2500 Māori shared their experiences with the cancer system.

Te Aho o Te Kahu acting equity director Sasha Webb said the hui gave an opportunity for the agency to connect with whānau.

“This was a really powerful hui series for us as an agency, and it enabled us to really connect with whānau up and down the motu, to hear their stories and better understand their lived experiences.

“And that’s going to help drive our work both for our organisation and we hope for other organisations across the health system,” Webb said.

Currently, Māori are more than twice as likely as non-Māori to die from cancer.

Webb said during the hui whānau spoke of the range of barriers to prevention and treatment which keep those numbers so high.

“Many whānau struggled to navigate the health system through their cancer diagnosis and then on into their treatments, others shared stories of how they feel like the current system isn’t designed by Māori or they feel unable to trust in the health system,” she said.

Māori leadership at every level of the health system was an important point for whānau.

“We need to be at the table or else it is all in vain,” one participant said.

Others spoke of how the diagnosis process was unnecessarily traumatic, or of unconscious bias among doctors.

“…they thought we couldn’t afford options for care because we were brown faces - so they just never offered,” one whānau member said in the report.

“They don’t care about us [Māori patients],” said another.

The series of hui took place in 2021 before reforms to the health system were announced.

Webb said the reforms were an opportunity to improve health outcomes for Māori across the health system, including for those with cancer.

Many of the solutions discussed by whānau at the hui were starting to come to reality now, including having a greater say in shared decision-making, better access to Māori health options like rongoā, and ensuring there was more Māori leadership in the system, she said.

However, whānau still want to see outcomes like better access to rongoā and Māori health options.

“Whānau need to have a choice of services including rongoā, mirimiri etc… and know how to access tohunga, particularly for whānau who may be disconnected from te ao Māori,” said one whānau voice in the report.

Webb agreed there was still work to be done to achieve those outcomes.

“What we heard was some really powerful themes from our whānau about things like Māori cancer leadership being needed at every level, support being needed for both the Māori cancer workforce and the non-Māori cancer workforce.

“They want to see their information needs being addressed, and also things like holistic care being needed for both patients and whānau.”

The report will be shared with all health agencies to assist them in the design and delivery of future health system change.