Our amputation shame: Thousands of NZers lose limbs to diabetes

It's the hidden shame of our healthcare system. Diabetes now causes close to 1000 amputations a year in New Zealand - a toll which has risen by more than 40 per cent in a decade. As the obesity epidemic grows, even Kiwis in their 30s are losing their limbs. We've had more lower limb amputee cases from diabetes in the last four years than we did from returned soldiers after World War One. A NZ Herald Fair Care investigation has established that services in some areas are buckling and amputations have spiralled. Yet there is hope - amputations are highly preventable through early treatment and some DHBs have prevented hundreds after overhauling their services. In the first of a three-part series, Nicholas Jones uncovers the scale of the problem and meets a surgeon who performs up to eight amputations in a typical work week.

Cliff Barnard saw his doctor about a small cut and went away with antibiotics. Four days later he was told his toes would be amputated.

"They turned around and said, 'You gotta lose a toe,'" the 65-year-old recalls of his hospital visit. "I was shocked, it was so fast."

Surgeons took the big and index toes on the right foot, and carved down into the joint, where infection had pooled and turned septic.

Cliff has battled type 2 diabetes since his early 20s. He's lost feeling in his feet, and about three years ago went on dialysis. That lowers his immunity, and to guard against injury he wears New Balance shoes fitted with special insoles, even inside at home.

How he got the fateful cut is a mystery. After seeing the doctor on Sunday he was told to contact his kidney specialist the next day. A nurse advised upping antibiotics, he says, but he was in hospital by Thursday. The next day, the father of three lay awake on the operating table, with a screen between him and the surgeons.

Almost a month later, Cliff is back at Middlemore for dialysis, and his wound is checked by podiatrist Lawrence Kingi.

Cliff Barnard at home with his dog Penny, after surgery that removed two of his toes. Photo / Michael Craig

The foot is collapsed and red-yellow raw where the big and index toes were. Eventually, Cliff will get by with specially fitted footwear. The big toe provides balance and he'll need to relearn movements to avoid topples.

At least half of diabetics who have an amputation will suffer another within five years, and Kingi's work is vital to both heal the wound and make sure putting weight on the leg doesn't cause future injuries.

Today's problem: bone left over from surgery that's worked up to the surface. Kingi teases it free, and the chip squelches as it hits the tray.

Cliff can't feel a thing, and the two banter as Kingi works. "You want to take that home, Cliff," Kingi asks of the bone. "Yeah, I'll put it on my mantelpiece," is the deadpan response.

The former production supervisor for Carter Holt Harvey is determined to look forward - "you can't cry over spilt milk" - and get well enough for a life-changing live donor kidney transplant that was only months away, but is now on hold while the wound heals and more tests are done.

There's plenty of recovery ahead. On instruction Cliff wriggles the remaining three toes, now isolated. It looks strange, and must feel more so.

"I think it takes a while to realise they're gone," he says. "I know they're gone. But sometimes it feels like they're still there."

The sharp end of an epidemic

Cliff's loss is more common than ever. The number of toes, feet and legs amputated because of diabetes approaches 1000 a year, an increase of more than 40 per cent over a decade.

In the past four years, the disease's silent rise has left more than 2300 Kiwis as amputees - more than four times the number of returned soldiers living with lower limb amputations after WWI.

It's a toll more depressing for the fact most amputations are avoidable. Diabetes can be controlled, and foot problems treated early and urgently.

Trauma concentrates in poorer communities. In the Māngere-Ōtāhuhu local board area, there have been 340 diabetes-related amputations since 2007. Ōrākei, with about the same population of 80,000, had 94 amputations.

Māori are at 65 per cent greater risk of above-knee amputations than Pākehā, even after other factors like deprivation are adjusted for. Men are almost 40 per cent more likely to lose a leg than women.

A Herald investigation has examined a decade of hospitalisation data, interviewed frontline health workers and obtained official reports on the epidemic. We found diabetes' rapid advance is already overwhelming health defences, despite years of warnings to Government of unpreparedness and the terrible cost in life and limb.

Hundreds of millions are spent on "ambulance at the bottom of the cliff" treatments for end-stage complications like kidney failure, and comparatively little on helping people avoid or control diabetes.

There are examples to follow: some DHBs have stopped hundreds of amputations through relatively simple changes.

Experts warn that without wider change the health system will break. More than 300 diabetics went on to dialysis last year alone, and the disease blights the vision of more than 60,000. Kiwis in their 30s are losing legs to diabetes, as an obesity crisis fuelled by cheap junk food changes the medical landscape.

Lawrence Kingi, podiatrist at Counties Manukau DHB, attends to the wounds of a patient. Photo / Jason Oxenham

Why amputations happen

Nearly a quarter of a million Kiwis have diabetes, and another 100,000 are thought to be undiagnosed. About 90 per cent have type 2, 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 insulin, glucose (sugar) from food cannot get from the bloodstream into cells to produce energy.

Over the long term, too much glucose in the blood ravages nerves, organs and tissue, risking heart attack, stroke, kidney failure and blindness.

Skin turns brittle. Pain, the body's warning system, is silenced as nerves are damaged, first in the feet. Injuries go unnoticed. Walking on hot sand or concrete, putting feet too close to a heater, getting a blister from gumboots while gardening - all can be a first, unfeeling step towards amputation.

Poor blood flow delivers fewer infection-fighting cells. Amputation is a last resort to stop infection spreading.

Foot ulcers precede about eight in 10 diabetic amputations. The other cause is a condition called ischaemia - restricted blood flow, which starves body tissue of oxygen, causing it to blacken and die.

Research has shown more than 80 per cent of diabetic amputations are preventable, if problems are detected and treated early.

An annual foot check by a health worker is the best way to pick up any circulation problems or injury and arrange treatment, including from podiatrists and vascular surgeons.

Despite the importance, in some regions one in two diabetics don't get that vital line of defence. There can also be long delays when help is sought - some referrals to see a podiatrist weren't processed for about two years in Northland, for example. Patients weren't referred at all in other cases and some later died after amputations.

Michele Garrett, podiatry professional clinical leader at Waitematā and Auckland DHBs, has pleaded for foot checks to be made a compulsory - and not just expected - part of annual health check-ups that all diabetics should have.

Our barefoot culture means people think of their feet as "tough", she says, but disease means a dab of Dettol is no longer good enough.

"They think they are bulletproof - they get a blister or a cut, and have had all those years where it normally gets better. They think, 'She's all right, mate'. And it's not sore because they've lost feeling."

Without pain, smell provides the (too late) warning.

"In my research I've interviewed people saying things like, 'I thought I'd spilt milk or there was a packet of meat I hadn't found in the car. But then I realised it was my foot'," Garrett says. "It's not that people don't care, and it's not that they don't bother. You forget about the gift of pain - it tells us something's wrong."

Most diabetic amputations are preventable, but numbers are climbing. Photo / Michael Craig

Dialysis and foot care

Plenty of patients at Middlemore Hospital's Scott dialysis unit have lost that gift. About one in four are also amputees.

When the Herald visits the unit is quiet, apart from the murmur of TVs above each bed. It's stuffy, but patients are rugged up under polar fleece blankets. Tubes pair them to dialysis machines, each with a knob spinning like a chimney cowl; blood comes out, water and toxins are removed, then the blood goes back.

Lost sensation, low immunity and poor blood flow makediabetics on dialysis 10 times more likely to suffer amputation. However, changes at Middlemore have shown amputations aren't inevitable.

It used to take an average of 42 days to get patients before a podiatrist. By then, the leg, foot or toe was often beyond saving.

So Kingi, one of Counties' hospital podiatrists, was freed up to attend clinics, and renal staff taught to check feet when they hooked patients up for thrice-weekly sessions. Any problems went on his rounds list.

Analysis of the "feet for life" programme, which started six years ago and is the first of its kind in the country, found it prevented surgery in more than 80 per cent of cases where amputation was identified as a possibility.

Shadowing Kingi shows how. Chris Davis, 62, has been on dialysis for eight years, and has little feeling in his swollen legs. Near his left heel there's a wound the size of a $2 coin, formed when callused skin pressed into and damaged healthy tissue.

To stop such wounds, podiatrists arrange special footwear or boots to relieve pressure. Surgeons can also be called in to fix deformities and muscle imbalances that cause uneven weight bearing and skin to rub away.

As Kingi shaves away skin, he gently badgers (the textbooks would call it educating).

"Where's your offloading boot? What did they say when they gave it to you, 'Leave it at home?' You definitely need that boot eh."

Missed appointments can be a problem in poorer areas, where residents can't afford time off work or caregiving, or feel uncomfortable in a formal hospital setting. Counties had more than 17,000 no-shows in the past year alone, costing $3.6 million.

However, "did not attends" aren't an issue for Kingi; patients die if they don't get dialysis. That contact is essential for those who can't bend or see, he says - for someone living alone, a fallen-off bandage can't be replaced until dialysis.

Things go wrong even if help's on hand, particularly without the "gift" of pain. One woman's injury was dressed at her rest home but got infected. The dialysis team found it riddled with maggots. She lost flesh but avoided amputation.

Lawrence Kingi, podiatrist at Counties Manukau DHB. Photo / Jason Oxenham

'People would rather lose a toe'

Up the motorway at Auckland City Hospital, Venu Bhamidi selects his tools for the job; a scalpel to take toes at the joint, a bone saw or cutter for legs.

The vascular surgeon performs between four to eight diabetes-related amputations in a typical week, and sometimes several a day.

Some years ago he and colleagues looked at the numbers behind their work. The results left them startled - one in every three to four patients with foot wounds had an above-ankle amputation, despite specialised hospital care.

"We knew anecdotally that the disease burden was increasing," he says. "But these numbers were confronting."

The response came in mid-2014 with a new clinic, which is now fortnightly and takes referrals from any GP, podiatrist or clinician.

Specialists rotate between patients. A vascular surgeon checks if an operation is needed to open blocked arteries, remove dead tissue or amputate. An endocrinologist works on blood sugar levels. A nurse talks diet, exercise and medication. Special footwear might be sorted by a podiatrist or orthotist.

It's a working example of health buzzwords - "multidisciplinary" and "patient-centred" - and gets results. A recent study found fewer major amputations and deaths, and savings of about $10,000 in inpatient costs per person (down to about $21,000). Below-ankle amputations rose, reflecting a turn from the "wait and see if it gets better" approach.

"Often there's a window when you can potentially prevent a major amputation by doing a minor amputation," Bhamidi says. "Most people would rather lose a toe than a leg."

Clinics are also held in Waitematā and Greenlane, and virtually. Bhamidi supports the model expanding, motivation he says comes from "a very personal space". His father, who lives in Bhamidi's native Australia, has type 2 diabetes, and struggled to get the care needed for serious complications. That opened Bhamidi's eyes.

"If that happened to a surgeon's father, imagine what would happen to someone who doesn't have the connections," Bhamidi says.

Vascular surgeon Venu Bhamidi has personal motivation for improving care. Photo / Michael Craig

Amputation a 'postcode lottery'

The care at Auckland and Counties helps explain the lowest amputation rates in the country, along with the other Auckland region DHB, Waitematā.

Ground-breaking research released last month and reported here for the first time tracked 215,000 New Zealanders with diabetes to see who had amputations over four years.

Researchers adjusted data for factors that could influence the likelihood of amputation, including sex, age, ethnicity, deprivation, rurality, other health problems and prior amputation.

Auckland DHBs had the lowest rates of major amputations (above or through the ankle), and Waikato and Hutt Valley had the highest. There were other DHBs well above the national rate.

"It shouldn't be the case that where you live alters your risk of having an amputation," says Dr Jason Gurney, lead researcher and a Māori epidemiologist working at the University of Otago. "It's a bit of a postcode lottery. There are pockets of fantastic foot care services entwined with vascular services. But they are the exception to the rule."

Amputation is rare, Gurney stresses. However, it hits some communities harder. Māori diabetics are 65 per cent more likely to have a major amputation than Pākehā, for example, even after factors like deprivation and rurality are accounted for.

That's damning, Gurney says, because amputations are highly preventable and there is "decades" worth of research showing how.

"If we prevent the ulcer we prevent the amputation. And the way to do that is through high quality diabetes care in general, and specifically foot care services. And when ulceration occurs, to quickly treat that ulcer so it heals."

Charge nurse and manager renal services Jubeda Shah is part of a team that has greatly reduced amputations among Counties Manukau dialysis patients. Photo / Jason Oxenham

Lethal rust

Over time, too much sugar in the blood acts like rust on organs and tissue. Controlling blood sugar levels greatly reduces the chance of complications, and can slow or stop illness that's already taken hold.

That can be done through medication, insulin injections, and by improving diet and exercise levels.

Documents obtained under the Official Information Act reveal dismay among health workers at our paltry prevention efforts. Dr Brandon Orr-Walker, clinical head of endocrinology and diabetes at Counties Manukau, outlined his frustration in a recent briefing to the Health Minister, warning diabetes' growth, particularly in the young, is "unsustainable and unaffordable for the health sector".

Early detection and treatment of cancer is a clinical priority, he noted, but the equivalent for diabetes "is just a counting exercise and 'trusting' that the right thing be done".

New Zealand has the worst range of funded diabetes drugs - crucial to controlling glucose levels and reducing side-effects - in the developed world, Orr-Walker pointed out. Specialist teams to help people control their disease haven't grown with the diabetic population.

"All the talk about prevention, the little initiatives here and there, the excellent sound clinical advice offered by doctors, nurses, dieticians, health coaches etc is sadly of little benefit when the environment is so toxic for good healthy living," wrote Orr-Walker.

"Stop paying health sector people to record the epidemic, put real resource into preventing the disease and assisting patients to achieve excellent management."

His concerns were echoed by an expert group set up to advise the Government on diabetes. Meeting minutes reveal concerns about a "tick-box mentality" among some primary health organisations (PHOs) to helping diabetics. Doctors were advising diabetics to pay for currently unfunded medications, the group noted, widening the rich-poor health chasm.

Briefings to Health Minister David Clark show targets will be missed. Photo / Mark Mitchell

Targets missed

A landmark strategy to turn the tide on the diabetes epidemic started in 2016. Living Well with Diabetes set nine targets, including a reduction in the rate of amputations by 20 per cent by 2019 (30 per cent for Māori and Pacific).

That and four other targets have been or are likely to be missed, briefings to the Health Minister show, and some services are at or beyond capacity, including foot care and eye screening. Self-assessment by DHBs showed improvements, the ministry advised, but "there is less evidence of improved equity outcomes for Māori, Pacific and those living in areas of high deprivation". Another shortcoming: "wide variation" across the country in bringing in the diabetes plan.

The ministry's briefing notes the number of major amputations has remained steady despite more people having diabetes, and says more minor (below-ankle) amputations, "could be indicative of earlier intervention". (About a quarter of the 989 amputations in 2017 were legs, the rest mostly toes or part of the foot).

Herald calculations show just over four amputations per 1000 diabetics in 2017, up from 3.6 in 2015.

Grant Pollard, the ministry's population health group manager, says it's too early to judge progress on amputations, with noticeable change only likely after five to 10 years.

Most amputations are avoidable, Pollard says, "however, once a person with diabetes presents with advanced foot disease, they are very likely to progress to amputation."

The ministry couldn't say how many diabetics nationally were getting foot checks - that crucial preventative measure - but revealed audits done by some DHBs "have indicated foot checks are not done consistently for individuals with diabetes across the country", and fixes are being considered.

Podiatrists are treating people aged in their 30s who face losing toes or legs to diabetes. Photo / Michael Craig

Health Minister David Clark says amputations are "suffered by far too many New Zealanders", and diabetes and obesity are some of the "largest and most difficult health challenges we face as a nation".

His "overriding priority" is to improve equity in healthcare, but efforts like Living Well With Diabetes will take time to show results. On obesity, Clark points to efforts to pressure the food and drink industry into making products healthier and other "voluntary actions", via a "food industry taskforce".

A young person's disease

Diabetics in their 30s are having limbs amputated, hospital podiatrists Lawrence Kingi and Michele Garrett say - something once unthinkable.

"The age has gone right down," Kingi says. "It used to be people over 55 having this problem ... it's just crazy - to have a person in their 30s, not just digital [toe amputation], but to have a below knee.

"You can see the effect on that person and their family. I don't think I've had anyone who has been able to deal with it."

Hospitalisation records shows 60 diabetics aged under 50 had amputations in the past 12 months alone, nine of whom were aged in their 30s.

Type 2 diabetes in children was unknown in New Zealand until the first cases in the 1990s. Since then, more than 100 kids have been treated for the disease at Starship hospital alone, including 10-year-olds. Rates among Pacific and Māori children are up to 18 times higher than Pākehā.

The trend spurred some DHBs to write to the Health Minister and urge a tax on sugary drinks. The reasoning was unusually blunt. "For the first time in history, NZ children could live shorter lives than their parents as a result of excess weight and obesity," Clark was told.

Cliff Barnard says at first he tried to ignore his diabetes diagnosis. Photo / Michael Craig

A quiet killer

Cliff Barnard grew up around diabetes. His mother, a Cook Islander, and her 11 siblings all suffered the disease, and it also afflicted members of his English father's family. His own diagnosis came in his early 20s.

"In the beginning I sort of just didn't worry about it, you know - 'Oh nah, that's nothing'. A lot of people don't accept those sort of things. I was one of them."

Advancing sickness punctured that delusion. Feeling went in his feet, and the keen fisherman gave up days on the water for fear of infection. He and his wife planned cruises and other holidays after the kidney transplant, but that's further off now. He agreed to speak out to raise awareness, and help others take better care of themselves.

"What they say is that diabetes is a silent killer. And that's dead right."

Read more
Tomorrow: One woman's amputation horror: 'I was clawing at the walls'
Thursday: Revealed - who suffers most