Tens of thousands of New Zealanders are missing out on free health checks that could save their eyesight. Nicholas Jones reports.
Imagine the terror of waking to find yourself completely blind. When it happened to Anne Niulesā, she scrambled to find some light.
The 37-year-old had lived with diabetes for two decades, and over the past year the disease had blurred her vision, a potential complication if blood sugar levels aren't controlled.
On January 1 2017, she woke to "absolute nothingness".
"I was panicking," she told the Weekend Herald. "I thought, 'Maybe it's still night time'. So I went to the bathroom, because I knew if it was day I'd see light through the window.
"I couldn't see anything. I got into the living room, and Mum was there, getting ready for church. I knew it must be morning."
Niulesā got hold of her wallet to get a card for the hospital eye clinic, to call for help, but realised she couldn't read the number, nor work a phone. Her family rushed her to hospital, where she spent two weeks - frightened, overwhelmed and relying on others to know when night and morning came.
"I felt alone. Isolated. Coming to terms with my reality was just unbearable. I cried myself to sleep. And then when people came to see me I was like, 'Okay, brave face, brave face'."
Four years later, and the last images processed by her brain remain what she saw that New Year's Eve: the blurred faces of family, her own in the mirror when brushing her teeth, the bedroom in the final second of electric light.
"Most people do assume it is darkness, but I think nothingness - you can't see nothing - is a closer description. It's like a void," she says.
Niulesā is one of about 264,000 New Zealanders living with diabetes. Her story shows the danger in not getting regular eye checks, needed to detect any beginnings of damage and, through subsequent treatment, prevent the loss of vision.
A Weekend Herald investigation has found at least 66,000 people with diabetes aren't getting that protection because they're missing out on free retinal screening, and that number could be much higher. Coverage - already poor in some areas - went backwards after the huge disruption last year of the coronavirus pandemic.
The situation is particularly bad in Waitematā DHB, which covers West and North Auckland. Thousands of patients there are stuck on waiting lists that have grown after Covid lockdowns.
The DHB has pledged extra funding and says there's a "very low" risk of people losing sight while waiting, but that's disputed by some clinicians.
"In the past year there has been a large increase in the number of patients having their screening delayed, and when they do turn up they more often have vision-threatening disease," says Dr Peter Hadden, chair of the New Zealand branch of the Royal Australian and NZ College of Ophthalmologists (Ranzco), which has members at Waitematā.
The Ministry of Health has a target of regular eye checks for 90 per cent of all people living with diabetes. Data obtained by the Weekend Herald reveals that, in fact, most DHBs are covering only 45 to 65 per cent. Some health boards declined to say, citing incomplete data.
That scares Niulesā, who hopes telling her story will stop others suffering what she has.
"I think of what it's done to me. And if it was to happen to someone else, what effect that might have on their friends, their family, their circles."
Covid-19 hits screening services
Too much sugar in the blood had gradually damaged blood vessels at the back of Niulesā's eyes, a problem that's well advanced by the time people have any inkling of vision problems.
It's crucial that the condition is picked up much earlier, by regularly having a photo taken of the back of the eye (retina), to check for beginnings of damage. If there is, treatment including injections and laser surgery can often ensure it never reaches the point where sight is lost.
Screening is the responsibility of individual DHBs, some of which outsource the work to Primary Health Organisations, which in some cases then outsource it again. The result is a national patchwork of screening programmes, spread over 20 health boards, with no national oversight of where there are gaps. The Ministry of Health could not tell the Weekend Herald how many people are being screened, nationally or by DHB.
And those signed up for screening can be caught in delays. Documents obtained under the Official Information Act show clinicians have raised concerns over "very large" waiting lists in Waitematā, where more than 9200 people are now overdue. Another 3000 are overdue at Auckland DHB.
A joint report by the neighbouring health boards sounded the alarm in December.
"The ministry target for diabetes retinal screening coverage is 90 per cent. Retinal screening coverage for Auckland and Waitematā DHBs is well below this target, and has fallen further over the past nine months," said the report, which was sent to hospital executives.
Less than half of diabetics in Auckland DHB were screened in the past two years, the report noted, down from 57 per cent at the end of 2019. At Waitematā, coverage receded to 46 per cent.
Across both DHBs there are now nearly 22,000 adult diabetics who aren't signed on for regular screening, of whom more than 2000 are considered high risk because of blood sugar levels and ethnicity.
"There is significant unmet need for diabetic retinal screening within our districts and this has been compounded by Covid-19," the report concluded.
The crisis illustrates how the pandemic has aggravated frailties in our health system. Many services have rebounded, but others haven't.
"Nationally, some of our diabetic screening programmes started off way behind, and then this has happened, and it's very difficult to catch up," says Dr David Squirrell, a leading hospital ophthalmologist and part of an expert group that wrote Ministry of Health screening guidelines.
"Some screening programmes, because they were in good shape, they hit Covid and then they bounced back quickly. Elsewhere, it's been a struggle - they had backlogs, and then Covid exacerbated that."
About one-in-10 diabetics develop sight-threatening retinopathy and the fallout is permanent.
"You can go blind with cataracts, but we take the cataracts out and then you can see again," says Squirrell. "With diabetes, when you are blind, that's it. It's irreversible."
'I just didn't know how to find a way back'
Niulesā was in her last year at Auckland Girls' Grammar School when she was diagnosed with Type 2 diabetes, the sort mostly brought on by lifestyle and linked to obesity.
Diabetes happens when the pancreas stops making enough insulin, or insulin can't be properly used. Without it, glucose (sugar) from food cannot get from the bloodstream into cells.
Controlling blood sugar levels is vital: over the long term, too much glucose in the blood acts like rust on nerves, organs and tissue, risking heart attack, stroke, kidney failure and blindness.
Those grim warnings were "dumped" on Niulesā when she was diagnosed. But she mostly felt well, and at 17, "just wanted to be like my friends - go out with them, and eat what they're eating."
She should have had an eye check when diagnosed, and then every two years or so thereafter, more often if significant disease was detected. Instead, it was in her mid-20s that her eyes began being screened regularly, she says.
The third check-up found damage needing laser surgery, after which Niulesā fell out of contact with the system. She wouldn't have her eyes checked through the screening programme for about a decade, and during that time damage accumulated.
A specialist later claimed appointment letters for screening had gone unanswered, Niulesā says, which she can't understand as all possible addresses remain occupied by close family, who would pass on mail.
(The DHB told the Weekend Herald it is working towards using text, email and phone to follow-up appointments, as "we have learned that sending letters by post is not always the best way". Niulesā's engagement with services was "intermittent", it says, but "we also recognise a need to do more to make access to our services easier". Waitematā contracts specialist ophthalmology care to Auckland DHB, but there are separate screening programmes.)
By the time Niulesā was 36 her vision began to blur. She thought new glasses were needed, but the optometrist referred Niulesā to the DHB. She endured a succession of major surgeries over 2016, travelling from her West Auckland home to the Greenlane clinical centre.
She could see only shapes, movement and light (and detail like faces, if up close), and gave up the job she loved, training insurance consultants. It was a blow to her self-esteem and the family finances.
Ultimately, the surgeries couldn't save even that reduced sight. The damage was already done, and Niulesā woke up blind that terrible New Year's Day. After her stay in hospital she moved in with her parents, and "closed off from the world".
"I didn't know how to feel, how to operate, how to just be. I not only lost my vision, but I lost myself in the process. And I just didn't know how to find a way back out."
Her family struggled to guide her.
"She was the kind of person you wouldn't see home much of the time - she'd always be out helping somebody else, pouring out her lifeblood into other people's lives," says younger sister Mary, of seeing her sibling's world shrink to a darkened bedroom.
"The social isolation compounded her depression."
Another blow came in August 2017 when their mother Telesia died of leukaemia.
"It was a double whammy. When I lost my sight, it wasn't just grieving for my loss of vision, it was for everyone else in my life," Niulesā says. "I could no longer see them, how they changed. In a sense, I had said goodbye to my mum back in January."
Telesia was buried in the Samoan village of Vailoa. The trip to where her mother grew up began Niulesā's climb out of depression. She was helped by support from family and the Blind Foundation (now Blind Low Vision NZ), which arranged counselling and for her to learn everyday skills like buttering toast or using a phone's voice function.
Because of her blindness, she's never seen the Henderson home where she lives with her sister and father Leva'a, who quietly sets down plates of biscuits and cups of tea during our interview. However, she can move around unaided, having been guided early on by a map with different textures to denote a couch, a table, and so on.
There was also help from her niece, Esther, who would clap and call, "Over here", or take her hand, saying, "gentle, Aunty Anne, gentle".
"She calls the fact that I went blind as, 'Aunty's got flat batteries'," Niulesā says. "She was my light in the dark - she had a lot to do with coming out of that fog."
The two share a bedroom. Esther is 6, but, in her aunt's mind, is 2, because that's the last time she saw her. "She hugs me, and I'm amazed how she's grown".
Another boost has been learning Braille, including music. Once a day Niulesā accompanies her father to the garage, where he plays piano while she sings beautifully.
It's a ritual that ends today with Life Goes On.
"He's been my everything," Niulesā says of her music partner. "He's been my cook, he's been my driver - he's been by my side. As with the rest of my family."
How services could be strengthened
In other countries, screening is delivered by local services but with national oversight and monitoring. The UK screens more than 80 per cent of people with diabetes regularly and has greatly reduced rates of vision loss, earning praise from the World Health Organisation. Australia is beginning a similar national programme.
In New Zealand screening is left to DHBs, which take different approaches. In Wellington, for example, optometrists take and assess the retina photographs for damage. In Auckland, photos are generally taken at diabetes clinics or by contracted providers, then assessed by ophthalmologists, a process called grading. Increasingly, screening is done at marae, community halls or mobile clinics.
Dr David Squirrell, who chairs the clinical governance group for the northern region screening programme (which covers Auckland, Waitematā, Counties Manukau and Northland DHBs), says these differences are fine, as long as images are processed in a national or regional centre, "so there's consistency of grading, and auditing and reporting. The trouble is, in some places there are silos, so if your grader goes on holiday or gets sick, everything stops."
Some cash-strapped health authorities are "clearly being overwhelmed', says Professor Steven Dakin, who heads Auckland University's school of optometry and vision science and chairs Eye Health Aotearoa, a coalition of groups including Blind Low Vision NZ, and researchers, optometrists and ophthalmologists.
But without national oversight, he says, "the really sad thing is I can't even tell you how well we're doing, because we don't have proper audits. What we can see is that it is certainly failing people."
Even if the tens of thousands of people with diabetes who aren't being screened could be identified and convinced to get checked, there aren't enough clinicians to assess the results.
Technology could provide a solution. Squirrell and Auckland University colleagues have developed artificial-intelligence (AI) software to check for disease, using an initial data set of 165,000 images from Auckland and Counties Manukau.
The algorithm is shown a photo and told, "This is a significant amount of disease". By testing itself against the thousands of images, it learns to recognise retinopathy.
The software, developed with funding from Diabetes NZ and government grants, learns from each image: synapses in the human brain get stronger or weaker through repeat activation, and "learning algorithms" mimic this by changing the mathematical weighting given to a vast number of internal adjustments.
When fed entirely new images it can - in a fraction of a second - sort them into "traffic light" categories: red, meaning the amount of damage definitely needs referral, orange, for those that may need referral, and green for images with no or little disease. Only the red and orange piles go to ophthalmologists to check, freeing up their time.
Crucially, the probability a person given a green light by the Toku Eyes software and actually has significant eye disease is less than 0.4 per cent - better than average human performance.
DHBs haven't come on board yet, although it's being piloted in Palmerston North and northern region DHBs are soon to investigate such use of artificial intelligence. Dakin, of Eye Health Aotearoa, says any hesitancy should be overcome.
"The machines are getting so good - all the indicators are that the AI tests are approaching or exceeding human performance. The argument that humans provide the best standard of care falls over when you are overwhelmed, and are waiting months to get that expert opinion."
A system that can alienate
Any national approach to screening must have a specific strategy for and developed by Māori, says Chrissie Cowan, chief executive of Kāpō Māori Aotearoa, a member-led society helping blind (kāpō) and vision-impaired Māori.
One problem that would seek to overcome is people feeling put down after contact with the mainstream health system, she says.
"Members have said, 'They make me feel it's my fault that I've ended up like this.' You sometimes encounter nurses who talk at you, not with you. It's assumed you're poor, that you eat bad food, smoke and don't exercise, abuse drugs or alcohol.
"And for Māori, we focus on trying to bring dignity back to the person."
Another barrier can be location or inflexible hours. West Auckland patients surveyed in 2018 reported missing appointments because they couldn't get a lift across suburbs, even if their sight was worsening. One single mother cited the cost of parking: "I have to think if I need money to buy my kids food or use it to pay for my car park".
Losing sight is particularly hard when it happens to young people, Cowan says. Among those helped by Kāpō Māori Aotearoa was a man in his mid-20s, who woke up blind. Six years later and he "still feels he's worthless", she says.
"He helps his mum around the house, but he won't go out. However much we encourage him. His mother also went through a period of guilt, that it was her fault, that she should have tried harder to tell her son not to drink Coca-Cola. The impact revolves around."
For John Mulka, chief executive of Blind Low Vision NZ, the lack of action to fix services reflects who suffers most. Rates of diabetes in Māori and Pacific populations are about three times higher than other New Zealanders, and South Asians are also more at risk.
"The squeaky wheel gets the grease," says Mulka. "It's not a sexy kind of issue for white, middle-to-upper class New Zealanders."
In January the Weekend Herald asked Waitematā DHB for documents or correspondence regarding screening backlogs. A response came last month. The next day, its board signed off additional funding of $974,000 a year to fund an extra 9300 retinal screens annually, more than doubling current capacity.
Tim Wood, the DHB's interim executive director of tier-one community services, says the new money will establish a "sustainable, long-term screening model".
Reluctance to be screened until level one had contributed to backlogs, he says, which will be cleared with an extra mobile screening clinic, more clinic locations and hours. The DHB expects to achieve the ministry screening target of 90 per cent "within the next 18 months-to-two years".
GPs have been told to re-refer patients if their condition has changed, or they need to be seen urgently. Wood says the likelihood of people having lost sight waiting for screening "is considered very low as all people on the waitlist have been triaged and those at higher risk of disease progression have had a priority referral to treatment services".
That view is challenged by hospital sources, who say there has been considerable concern about people at risk of losing vision unnecessarily. Dr Peter Hadden, of Ranzco, also questioned the DHB statement.
"It is difficult to tell who is at risk with the very limited information available to triage patients with, thus we disagree with the DHB's assessment in this regard and this is evidenced by the increasing numbers of patients coming through with visual impairment," Hadden told the Weekend Herald.
"Ranzco understands that the Waitematā [screening] service has been chronically under-resourced despite clinicians making repeated representations that more funding will be required to provide services to the increasing population and to deal with the increased incidence of diabetes."
Morale has been described as "awful" among clinicians and support staff, Hadden says. "We hope that the changes that are being made and the increased funding will improve the situation."
At Auckland DHB, the waitlist is expected to be cleared in five to six months. The DHB says all patients are being seen "within safe clinical timeframes". A redesigned service covering Waitematā and Auckland has been proposed.
Associate Health Minister Peeni Henare, who has responsibility for diabetes, welcomed Waitematā's funding commitment, but acknowledged "variation in services across the country".
"But we also need to recognise that DHBs need to meet the needs of their local populations," he told the Weekend Herald. "We need to recognise the excellent work going on across some regions and our aim is to identify these and profile them for learning and sharing across the sector."
A sneaky disease
For Anne Niulesā, the colour of a Sunday service has gone. The gleaming white shirts, jackets and church hats. A pulpit draped in purple and blue, framed by flowers.
But everything else remains. She hears the happy chatter and laughter as the congregation fills in. She nods during the sermon, feels the breath of a hand-held fan from the row behind.
Then, the singing starts, wonderful and filling every corner of the church. Her sister Mary's voice comes from behind, and her own adds to the chorus. As it peaks, she smiles.
Afterwards, she is handed her baby nephew, Josiah. On the way out of church, she holds Mary's arm. It's slow progress, but only because they stop to talk to friends and family.
Plenty of them also have diabetes, which worries Niulesā. She feels grief over not having regular eye checks, but also recognises her own responsibility for her health. She was a teenager when diagnosed with the condition that took her sight. She felt protected by her age.
"I didn't take it seriously enough," she says. "It's a sneaky disease. You may not show symptoms, it can just creep up on you. One day you could have something, the next you don't."
Context box: Why it's difficult to get solid data
The target for DHBs to screen 90 per cent of people diagnosed with diabetes accounts for those ineligible, such as people in private care or who are blind. Screening is every two years, but can be at three-year intervals for those at low risk, and annually for people needing close monitoring.
Not all DHBs could say how they were measuring against this target, and the ministry doesn't track such performance. But the figures that were provided indicate at least 66,000 eligible people aren't being screened, and that number could be higher.
Capital & Coast DHB had the highest coverage, with approximately 71 per cent screened in the past two years, compared to 49 per cent in Auckland DHB. Coverage is higher when taken over a three-year period - 59 per cent at Auckland, for example.
New Zealand is among a minority of countries without decent data on eye health, noted a recent report in the prestigious medical journal, the Lancet. "We just don't have the data we need to plan equitable eye services," says Auckland University associate professor Jacqui Ramke, one of 73 experts from 25 countries who contributed to the report.
There's no central register of people with diabetes - instead, an algorithm estimates prevalence, using health service data to identify people suspected of having the disease.
"We do not have a precise and accurate number of diabetic patients," Whanganui DHB told the Weekend Herald, in declining to estimate screening coverage. "Current primary care data is incomplete."