A warning to “drop, cover, hold” if an earthquake occurred was part of the safety message at the start of this hui for cancer advocates from around NZ. Held in the Mirimar Golf Club building literally over the road from the airport, it looked pretty sound to me, but this is Wellington and we are near a fault line.

The cancer agency was set up in 1 December 2019 to carry out the Cancer Action Plan published a couple of months before. It is only a “baby agency” and will be named properly soon.

There were advocates for cancers of all types, many of them from big organisations like Canteen and the Breast Cancer Aotearoa Coalition and every rep had to introduce themselves and explain what they had to offer, their koha. Some Maori reps were impatient and angry for real change to occur. A myeloma rep said there was urgent need for representation from the smaller cancers. I was pleased that the Pacific rep, a young man from Auckland, also had the orange and black curtains of Auckland Hospital seared into his memory.

Melissa Vining spoke. The late Blair Vining from Southland was one of the reasons we were there that day. As he trod the terminal bowel cancer pathway, with a cancer that could have been cured if caught earlier, he advocated hard for a central cancer agency in New Zealand to make sure there is consistent care through the country.

Melissa was tearful and angry. Fifty-six people in one month rang her saying they couldn’t afford treatment. Access to scans was delayed unless they could go private. Pharmac, she said, was a despicable agency and you need to be a lawyer to fight for ACC compo if there has been an adverse event. The Health and Disability Commission is not good enough (many people have called it toothless). She said we need to look at the whole cancer spectrum.

Then someone from Cancer Consumer NZ spoke. I was confused. This is a consumer organisation that helps and is indeed ‘under” the Ministry of Health. It’s been going for 8 – 10 years and is used as a reference group but complains of tokenism. “We shouldn’t be consulted. We should be leading” There’s a need to improve Maori outcomes. “If you get it right for Maori, get it right for everyone.”

Health care should be knowledge-based not evidence-based he said. “We know it works. This comes from consumer experience.” I am not sure what this means bit it’s interesting.

Working in groups for the rest of the day, we discussed not the contents of the action plan but how we as consumers could be involved in the plan and the new agency. There were some very interesting things said about consumer representation which I could not quite capture but will inquire into further.

It was impressed upon us that we can contact the organisers at the new agency and give our input at any time.

Maybe the earthquake we were warned about is a metaphor for the changes people want to see in health care in the Shaky Isles.