'People would look at me with disgust': Man says health system's failed him for 30 years

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A Waikato man who has lost the ability to walk and is bedridden for life says he's the victim of institutional racism and systemic neglect.

Michael Stewart, 63, learned he would never walk again in 2014.

He says his repeated cries for help had been ignored since his first visit to hospital in the 1980s.

His story comes as the Waitangi Tribunal resumes stage two of the Health Services & Outcomes Kaupapa Inquiry. Michael is telling his story as part of the inquiry, which has detailed how prejudicial and discriminatory the health system is for Māori and why many Māori distrust health professionals.

Before he was unable to walk, Michael was diagnosed with lymphedema, a condition where lymph fluid builds up in tissues causing swelling and immense pain.

But he said his requests for a wheelchair to relieve him of his pain were repeatedly denied.

The pain was so unbearable he'd take up to nine painkillers a day, more than double the recommended dosage.

With his requests for a wheelchair denied, his family built a man-made trolley out of materials from Bunnings to help with his mobility, but it was impractical to cater for him long-term.

Michael's family built a man-made trolley out of scraps from Bunnings after his many requests for a wheelchair had been denied. Photo / Supplied

His story began in the 1980s when Michael was refused ACC care following a work accident which caused a knee hyper extension.

"I fell down a post-hole. My left foot went all the way down the hole. I flipped forward and it overextended my knee ligaments in my left leg.

"I went to hospital and I asked them if I could get ACC. They said, 'No, you're only working a part-time job,' and apparently, I wasn't eligible.

"I went back to work and I limped around for two weeks. We had bills to pay, what can you do?

"I didn't know anything about ACC, I trusted their advice because it's their job."

But the pain in his left leg worsened. The lymphedema looked like a large lump on the top of his leg which was twice as big as the other.

Though his condition resulted in frequent hospital stays, Michael said there was minimal assistance offered and his concerns were often ignored. He believed he was simply meant to live with the condition and "carry on with life".

"I thought it was just a me problem."

Michael began walking shorter distances. He asked occupational therapists for a wheelchair to save his knees. In the meantime, he used two sticks.

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"Someone came to the house and assessed me for a wheelchair, but I took painkillers beforehand so I could be ok to show them around. They said I was walking ok, so I didn't need one.

"I didn't get an electric wheelchair or a push wheelchair."

"I thought occupational therapists were supposed to help us, but they seemed more interested in finding ways to say no."

His wife Linda, added: "It always seemed for some reason that he never qualified for things."

In 2014, Michael was found unconscious after taking an additional four pain killers to ease his pain. Doctors told him he'd never walk again.

"From September through to December 2014, I stayed in the hospital in rehab to try to learn how to stand up again. They eventually sent me home in a wheelchair."

After care

Michael was granted caregiving services but says he faced discrimination for the excessive weight he'd put on due to his health issues. He weighs 230kg.

Michael had no fight left in him. "It just gets to a point where you get used to it.

"Growing up and having to go through a lot of Pākehā systems, they look at you and first go: you're Māori, and secondly, you're a fat Māori.

"My wife hated the way people would look at me with disgust. You could just tell by their body language that they didn't want to help."

Linda added: "It was sad to see the reactions of those caregivers that came from Geneva and their facial expressions before they even came in. I didn't like that for him."

Michael specifically needed help showering and going to the toilet. It was humiliating and dehumanising, he said.

"They couldn't wait to get out of my home. One swipe of the facecloth on one side of me, they wouldn't go anywhere near my feet, or dry it, or do my back.

"At the end of it they expected me to sign their timesheet after only spending 20 minutes with me, although we were entitled to an hour."

Michael was often left to get out of the shower alone. Linda would find him struggling and see he was not washed properly, so she'd finish the job.

Linda had spoken to friends about the ongoing mistreatment and was overheard by a Te Kōhao Māori Health director who immediately took over Michael's care.

"When the first caregiver came from Te Kōhao, she didn't flinch like the others," Linda said.

"She never judged him, nothing. She was the first caregiver who just did her job and it was a breakthrough for us."

Michael and Linda say Te Kōhao went the extra mile by offering help around the home and staying late to ensure his needs were met.

The health system, ACC, fails to uphold Treaty values

Te Kōhao Health managing director Lady Tureiti Moxon said there was no recognition of Te Tiriti by ACC, let alone the principles of the Hauora Report - partnership, active protection, equity and options.

The Hauora Report, released in 2021, addressed claims concerning the legislative and policy framework of the primary health care system, which has failed to achieve Māori health equity.

Moxon said Michael and eight other witnesses under Te Kōhao Health received a poorer standard of care compared to non-Māori from mainstream providers.

"This is about mana motuhake, by Māori, for Māori. The Hauora Report was unequivocal. It said there must be the guarantee of tino rangatiratanga, equity, active protection, options, and partnership," Moxon said.

ACC chief executive Megan Main told the Herald she regretted that Michael had had a bad experience in seeking help.

"As [his] claim dates back to 1991, we have limited information on his file, and it may be challenging to gather information that dates back that far.

"However, we welcome Mr Stewart to get in contact with us if he feels that we have not provided the right support. If Mr Stewart qualifies for compensation this can be paid.

"Navigating the health system can be challenging. We know that ACC has not adequately responded to the needs of Māori clients and whānau in the past due to a lack of choice and support services that reflect tikanga Māori

"ACC is committed to addressing this and ensuring we meet our responsibilities to Te Tiriti o Waitangi. This work is guided by our Whāia Te Tika strategy, which includes understanding and responding to whānau-centred needs, expectations, and aspirations that lead to minimising the incidence and impact of injury for whānau, hapū, iwi, and hapori Māori."

Michael said he wanted a better future for other Māori and hoped his evidence would influence changes.

"I'm telling my story because I hope that this can help other people. That's the main difference I hope I can make."

The next hearing Waitangi Tribunal will take place from August 29 to September 2.