A collective voice for patients

Patient Voice Aotearoa is a new organisation formed to lobby the government for equal access to world class medical care across New Zealand. They are beginning to write their vision and mission statements and have set up a steering committee to move the organisation forward.

Because they want a strong collective voice they invite representatives from many patient groups to their meetings. At the recent meeting there were a lot of reps from breast cancer groups, from prostate cancer, Arthritis Foundation, Kids Can, a rare diseases group, Age Concern, mental health … And of course two reps from our group, Diana and myself

PVA is funded by Medicines NZ, also a lobby group.

May 15's meeting was too overwhelming for me to have taken it all in as a newbie. Below are some impressions I received. Some are from the different reps and some are from a health economist from a government department.

*The rare disorders group is angry and frustrated, especially with Pharmac. When 75 countries will fund a certain treatment but NZ won’t, you feel you should advise people to leave New Zealand if they have a rare disorder. “No one listens.”

*Some resentment that the new government hasn’t delivered yet. David Clarke told groups to talk to Julie Anne Genter or Jenny Salesa. Some people felt this disempowered them. Others said that Genter is going on leave soon but Salesa will listen. Lobbying coalition MPs can have more impact.

*We have somewhat of a postcode lottery in NZ. Your treatment might depend on how many people with your condition live in your DHB area.

*An economist from the  New Zealand Institute of Economic Research gave an excellent talk. She said she wouldn’t want to be the health minister right now. 

*The new govt’s main health focus is on mental health and primary care (GPs)

*At 11% of GDP, we actually spend more on health than Australia.

*Are there too many DHBs? To what extent do larger DHBs service smaller DHBs?

*Admin costs are repeated with so many and $6m can spent on directors’ fees alone.

*It will take David Clarke a long time to get up to speed. He has crises to deal with like the state of Middlemore buildings and the construction of the new Dunedin Hospital. Keep checking the Beehive website.

*The government's three priorities are ending child poverty, Auckland's gridlock and affordable housing.

*Look on Treasury website for wellbeing markers we should keep to as a nation.

What is biting the Ministry of Health? 

Staff turnover
DHBs running deficits
Water quality - NZ used to be reliable until Hawkes Bay
State of our facilities, eg MMH
Dunedin Hospital rebuild’s  price rapidly rising over a billion and still going up.
Shortages of health professionals
Wage pressures: 80% of budget spent on staff

Economist thinks that now is the time to lobby before policies set in stone. Lobby in the next 6 months.  Work up a hit list with data.

*Discussion: Pharmac is a bucket with a lid on it. People seem to be proud of Pharmac but want more from it.

*Quote: We have a cappuccino model. Everyone's playing with fluff but no one's drinking the coffee.

*There was huge cynicism about database systems but agreement that Big Data is where it’s at.

*When you lobby have one clear vision. Facts and figures. Here’s what it will look like in the news. Every NZer deserves the right to good care.

*Need increased investment in health.

Finally, someone mentioned the importance of the patients voice. She mentioned a book she thought was called “Good morning. The patient will see you now.” What a great title that would be. I looked it up and the actual title is


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Diana Ayling

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