NEW ZEALAND’S BITTER PILL

When Vicky Gibson took her eight-year-old son Kaya to a Hamilton ophthalmologist for the second time in 10 weeks, she knew something was seriously wrong. Kaya was nearly blind. He couldn’t find food on his plate. He’d sit on the steps outside his school after lunch because he couldn’t find his way back to his classroom. He used his feet to feel for objects in front of him. He fell down.

The ophthalmologist, however, did not seem overly concerned. As he did at the first appointment, he said he thought it unlikely Kaya’s symptoms were the result of disease, and were probably “functional” – in other words, that Kaya was, for some reason, making them up. He made a “semi-acute” referral for Kaya to see a paediatrician to rule out a neurological condition.

By the time Kaya saw the ophthalmologist, he was terminally ill with a metabolic brain disease – the same one made famous internationally in the film Lorenzo’s Oil. He died six months later, in May 2014. Had he been referred earlier, after his first appointment in August, his life might have been saved with a bone marrow transplant.

In February, 2016, Gibson contacted the Health and Disability Commissioner (HDC) about Kaya’s care, sending an emailed complaint to its website. She thought that would start an investigation during which she’d be interviewed, along with experts who treated Kaya at Auckland’s Starship and shared her concerns about his treatment. A year later, however, Gibson was told the HDC would be taking no further action. It had sought expert advice on the ophthalmologist’s care and decided it was reasonable, and “consistent with expected standards”.

Yet in December the same year, the HDC came to a different conclusion in a case which seemed, superficially at least, to be very similar, after an optometrist failed to diagnose a brain tumour as a cause of vision and eye problems in a six-year-old boy. The boy was left blind in his right eye and with poor vision in his left after delayed surgery. The optometrist was found not to have properly assessed the level of the boy’s vision loss or considered other diagnoses before