If someone is killed or harmed after healthcare failures, they or their family can’t sue in New Zealand. Instead, they can complain to our country’s only patient watchdog. However, just 4 per cent of cases are investigated and often justice is lost. Emma Russell reports.

Today members of parliament will hear, from top scholars and neglected patients, why a law should be changed to help give these families justice.

It comes after the Herald on Sunday shared a story of a couple who believed osteopath treatment killed their unborn baby.

They have for six years been fighting government agencies to prevent other families from enduring the trauma they did – but still, the couple said, they felt they hadn’t been listened to and no meaningful action has been taken.

Unlike any other judicial system in New Zealand, if someone complains to the Health and Disability Commission (HDC) and it isn’t investigated or no breach of patients’ rights is found, there is no right to appeal that decision.

It means that every year hundreds of families across the country are left feeling unheard and powerless.

“It’s unfair and this unsatisfactory situation of structural injustice should be addressed,” Barbara Robson and Barbara Holland, co-conveners of the Federation of Women’s Health Councils, said.

Chief Ombudsman Peter Boshier, former Health and Disability commissioner Ron Paterson, law professor Jo Manning, members of the Cartwright Collective and two women harmed by surgical mesh – Charlotte Korte and Renate Schütte – have banded together to fight for a right of appeal to be introduced into the HDC system.

This morning at 9.05am they will be presenting oral submissions to the Health Select Committee (HSC) – which is a group of MPs who review public pleas for law changes. This will live-streamed to the public via the HSC’s Facebook page.

Key issues highlighted in the submissions:

• HDC is failing to protect patients and families from substandard health care, which is why it was set up in 1994.

• The Ombudsman – established to help people deal with central and local government – doesn’t have the jurisdiction to investigate any aspect of a decision by the HDC and make any recommendation they see fit.

• Boshier was highly critical of the HDC process affecting timeliness and recommended a clearer distinction between preliminary assessments and investigations.

• Failure by HDC to launch inquiries where there are significant number of complaints about the same issue such as surgical mesh. “This is a missed opportunity,” Paterson said.

• There is an “extraordinary” increase in NFA (no further action) decisions – about 55 per cent (on average more than 1000 a year) result in NFA.

• NFA decisions are not published so transparency is lost.

• Patients who have suffered serious harm or families who have lost loved ones have to mobilise themselves to undertake in depth research because no one else sees the need to do so.

• Patients and families who utilise the HDC complaints process face unacceptable barriers to accessing fair and just outcomes.

Complaints not investigated or where no breach is found, should be able to be brought to the Human Rights Review Tribunal, Manning said.

In 20 years, the percentage of complaints investigated by the HDC dropped from 40 per cent in 2001 to 4 per cent in 2019.

“Patients deserve a better deal than this, especially since there is no ability to take a medical negligence action for damages…many people have lost trust in he system,” Schütte, who was severely harmed by surgical mesh, said.

A spokeswoman for Health Minister Andrew Little said he couldn’t comment at this stage as it was before the Health Select Committee.

Health and Disability Commissioner, Morag McDowell, is appearing before the HSC on this matter on November 10.

The proposal was complex and required careful consideration, McDowell said.

“I would strongly support broad public and sector consultation on any proposed changes, to ensure the effects of them are well understood and to avoid unintended consequences for consumers,” she said.

In the submission report, the Ministry of Health have said: “[We] believes that the ability to raise concerns with the Office of the Ombudsman about the Health and Disability Commissioner’s decisions, along with judicial review, functionally acts as a right of appeal for complainants, and those that are subject to complaints.”

A son lost:

Kaya Miller should be celebrating his 16th birthday next month with his three younger siblings Arlo, Sage and Willow.

Instead, his mum Vicky Gibson is haunted by the tragic and potentially preventable circumstances that led to her son’s death.

Kaya was nearly blind, had been struggling to find food on his plate and the steps to sit on outside of his school.

Yet, when Gibson took her, then eight-year-old, son to a private ophthalmologist – an eye expert- for the second time in 10 weeks, she said, she was told he was likely making up his symptoms for attention.

The specialist made a “semi-acute” referral for Kaya to see a paediatrician to rule out a neurological condition.

But it was too late.

Her “incredibly intelligent and very funny” son died from a metabolic brain disease six months later, in May 2014.

If he had been referred earlier, after his first ophthalmologist appointment, his life might have been saved with a bone marrow transplant.

In February 2016, Gibson complained to the HDC about Kaya’s care.

Experts who treated Kaya at Auckland’s Starship Hospital supported her claim.

Yet after a year of looking into the case, HDC decided no further action would be taken.

Gibson said only after she sought legal advice did HDC take her complaint seriously.

“If I hadn’t had the lawyer helping me, it wouldn’t have gone as far as it did.”

They found the ophthalmologist didn’t properly assess the level of the boy’s vision loss or consider other diagnoses before saying he had a “lazy eye” and exotropia (outward turning eye) and prescribing glasses.

This meant he had breached the patients’ Code of Rights.

Yet, Gibson said, no disciplinary action was taken and it was not flagged with the Ministry of Health’s director general, like cases like this were meant to.

“I was pretty gutted because I’d lived it so I knew from my perspective what the facts were and it just seemed like they weren’t interested.”

Her message to MPs and other New Zealanders listening to the submission was: “Imagine if it was your kid”.

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