Treatment wait costs girl sight in one eye
Years of delay after initial diagnosis at age 11 has blighted teen’s life
Ayoung girl lost most of the sight in an eye while languishing on a waiting list — and the DHB involved has warned pressure on services remains “very real and concerning”.
The teenager was 11 years old when first seen by a Counties Manukau specialist, but a years-long wait for follow-up allowed disease to eat away at both eyes, leaving one beyond treatment.
Now 17, she suffers debilitating migraines and spends much of her time in her darkened room, missing school and social events.
Her family are speaking out for the first time in a bid to protect others.
A Herald investigation into the disturbing case reveals a string of failures, many reflecting wider problems facing a health system struggling with an ageing population beset with illness such as diabetes.
“I’m sure there are 100 other people who’ve had the same sort of treatment. They just fold their arms and go, ‘What’s done is done, and we’ve got to live with it,” the girl’s father told the Herald.
“The reason we want to come out is to let other families out there know — don’t be quiet, don’t just hide behind it. The kids are our next generation. We need to stand up for them.”
The teenager, who is selfconscious about her condition and asked not to be named, was diagnosed with a possible condition affecting her eyesight after her first specialist appointment in November 2012.
The disorder, keratoconus, means someone loses sight as the progressive disease thins the cornea, the tissue covering the eye. There’s no cure, but it can be stopped in its tracks through a procedure called crosslinking.
The young girl was booked for reassessment in a year, but her follow-up was cancelled by the DHB, as it struggled to cope with a huge and growing number of overdue cases.
Her family and GP chased up without success.
At school, the teenager sat near the front but as her eyesight failed, she eventually learned only by what she could hear. She was finally seen a full two years and nine months after her first specialist appointment.
Surgery was booked to save remaining sight in the left eye but couldn’t be completed on the right as it was so weakened.
The teenager suffers regular migraines, triggered by light entering the eye. She loves to swim but will spend much of the coming summer in her darkened room.
Counties Manukau has introduced a range of measures including weekend clinics and more staff, and has halved its overdue waiting list for ophthalmology since May last year, down to 3172 patients.
However, it told the HDC issues facing the service were “still very real and concerning”, with limited prospects of extra funding in an austere fiscal environment, growing demand and securing skilled staff an ongoing problem.
She was 11 and the disease that would end up taking her eye was only a pinprick. The family optometrist had spotted the fleck of keratoconus during a regular check-up.
The condition distorts sight as it thins the cornea, the tissue covering the eye. There’s no cure, but it can be stopped in its tracks through a procedure called cross-linking.
Rose* was referred to Counties Manukau District Health Board, and a specialist diagnosed possible early fruste forme keratoconus — meaning the disease was at such an early stage there wasn’t yet obvious clinical evidence of it.
She was told not to rub her eyes, and booked for reassessment in a year, or sooner if there were problems. That’s when things went wrong.
The case was buried in a huge backlog of overdue appointments, which the DHB would later admit to investigators “became extremely difficult to manage”.
The November 2013 assessment was cancelled by the health board and not rescheduled.
Her GP and father each chased up the DHB without success. More calls were made in the coming months.
Overdue cases were prioritised only by how long people had waited and the priority at the time of booking. Someone going blind didn’t factor.
The disease took hold. At school, Rose sat near the front but eventually learned only by what she heard.
A year after the reassessment should have happened the DHB sent two letters to arrange an appointment. Her family advised the Health and Disability Commissioner they never received them, despite living at the same address since 1990. Copies weren’t sent to the family GP.
The breakthrough came only after Rose was nearly hit by a car outside school.
A service working with students with low vision told her family it would handle the DHB. Forms, one marked URGENT PLEASE!, were sent.
However, the referral wasn’t graded correctly (because it wasn’t clearly written, the DHB claimed) and it was a further 151 days until she was seen — a full two years and nine months after the first specialist appointment.
Keratoconus had eaten away both eyes, thinning cornea so each bulged outwards in a cone-like shape.
Cross-linking surgery was booked to stiffen the cornea and save remaining sight in the left eye. However, the right had been so weakened it was untreatable.
‘I just sit in the dark’
Three years later and Rose is 17. Her right-side sight is severely restricted and mostly blurred. Peripheral vision has been replaced by debilitating migraines, triggered by direct light. The agony sends her to a darkened room. She misses school and social events.
The softly spoken teenager, who likes window shopping at Sylvia Park mall and swimming with cousins, has lost confidence. She’s too selfconscious to wear sunglasses at school, and doesn’t want her condition widely known. The Herald has agreed to withhold her real name.
“Often at school I go to the nurses, but I try to not go too much,” she said. “But there will be times where I just come home after school and just go straight to bed if my eyes hurt and play up a bit. And I just sit in the dark.
“I’m missing out on a lot of learning. I like school. I like learning a lot. And just hanging out with my friends. But when my eyes play up on me, I just say, ‘I’ve got to go home’.”
Her family asked her optometrist to write to the principal to explain what had happened. Teachers had asked about her red eyes and struggle to concentrate. One wrongly thought she might be stoned.
Each morning her grandmother helps soak her eyes with antihistamine eye drops, then a heavyduty contact lens goes on her left eye.
When it’s sunny the glare hurts her eyes and she often wants to stay in bed and darkness.
Rose’s family complained to the Health and Disability Commissioner, who subsequently released a damning report, finding the DHB failed to provide services with reasonable care and skill.
Her father initially declined the Herald’s request for comment, but changed his mind after helplessly watching his daughter endure another migraine.
He worked at Counties Manukau DHB from 2007 to 2013, and is still employed in the health sector. He believes the case is unusual only because his family navigated the complaints process, and were now speaking out.
“I’m sure there are 100 other people who’ve had the same sort of treatment. They just fold their arms and go, ‘What’s done is done, and we’ve got to live with it’.
“The reason we want to come out is to let other families out there know — don’t be quiet, don’t just hide behind it. The kids are our next generation. We need to stand up for them.”
Unintended consequences
More than 20,000 older Kiwis live with age-related wet macular degeneration, a condition where the growth of abnormal blood vessels under the retina causes blurring or blind spots.
A decade or so ago there was no treatment. But now drugs such as Avastin, injected into the eye, stop vision deteriorating and sometimes improve it. Injections can be needed monthly, and ophthalmology services have seen a huge increase in workload.
About half the country’s 20 DHBs had delays in eye treatment last year, partly because of the extra work caused by Avastin injections, leading the Ministry of Health to set up a special group and pledge $2 million in extra funding.
Fourteen patients at Southern DHB lost vision over 15 months.
The Health Quality & Safety Commission (HQSC), with a remit to reduce harm to patients, has used Avastin’s rollout as a case study of unintended consequences. Thousands were helped, but a few went blind.
“Quality improvement science teaches a systems approach — to measure and monitor any new change we introduce, to avoid unintended consequences,” the commission noted. “Avastin was introduced in different ways in different parts of the country, with no national systems approach.”
In releasing the report on Rose’s care, Commissioner Anthony Hill warned the ministry and DHBs to “assess, plan, adapt, and respond effectively to the foreseeable effects of new technologies and population change”.
Through the cracks
Rose’s family met DHB representatives in July and received an apology and ACC forms.
A cornea transplant could be in her future, but she must wait until she stops growing to go on the waiting list. A transplant could restore about 70 per cent vision. However, it has a 10-year lifespan and can fail.
Her grandmother, sitting at the family dining table with a plastic folder containing every document relating to Rose’s care, each carefully dated upon receipt, told the Herald the main concern was for Rose’s future.
In less than a year the frequent optometrist appointments and contact lenses will no longer be free.
“Who is going to look after her? As an adult, we can’t afford to look after her eyes.”
Rose is part Samoan and part Ma¯ori, ethnicities more prone to keratoconus. Her family worry there’s little to no public health messaging about the risk of the disease.
At the Manukau Superclinic she and her grandmother would wait in rooms crowded with elderly or people sick with diabetes.
“The health system was good in the beginning. Our children grew up in a very good health system,” her grandmother said.
“People like her — children who are growing up — fall through the cracks. They are the future of New Zealand.”
Delays ‘the norm’
The health system was good in the beginning. Our children grew up in a very good health system. People like her — children who are growing up — fall through the cracks. They are the future of New Zealand.
Teen’s grandmother
When Counties learned of the HDC complaint it was already investigating how another patient lost sight while treatment was overdue.
A new triage system and clinics have since been introduced and
more ophthalmologists, nurses and technician staff hired.
After-hours and weekend “megaclinics” have cut backlogs and staff have worked heroic shifts. University of Auckland undergraduates have even been roped in, seeing patients under supervision of university optometrists.
Concerns about eye services appeared monthly on the DHB’s risk register from November 2009 onwards. Internal progress reports in 2011, 2013 and 2014 detailed the problems. The January 2013 report warned of “loss of vision which may be irreversible”.
The same year proposals for new ophthalmology roles weren’t successful, with only a nurse co-ordinator position (part-time) approved.
In expert advice to the HDC, Professor Charles McGhee, head of the University of Auckland’s ophthalmology department, said DHB managers were put “on notice” about the risk to patients, but “these delays became the ‘norm’.”
However, the health board did ask for help. In September 2011 — a year before Rose’s first specialist appointment — the DHB applied for $260,000 of ministry funding to establish an ophthalmology clinic for high-risk diabetic patients in Ma¯ngere.
In the proposal, obtained by the
Herald under the Official Information Act, Kathie Smith, service manager for ophthalmology, warned of growing demand.
“Alternate ways of managing the increasing volume of referrals needs to occur to build capacity in order to avoid significant bottlenecks which result in patients not being seen in clinically appropriate timeframes,” Smith wrote.
The application was declined. An evaluation group said the clinic “needs to be better orientated towards innovative models of care or alternative workforce roles”.
Waiting lists cut
The Royal Australian and NZ College of Ophthalmologists deems patients most at-risk if they’ve waited more than 50 per cent longer than the clinically assessed timeframe for treatment. For example, if someone should have been seen within two months, but waited longer than three months.
Nationwide, there are
2200 people in that group, down from 10,000 last year. More than half live in Counties Manukau.
The health board told the HDC things had improved. Its overdue waiting list had halved since May last year, down to 3172 patients. However, issues facing ophthalmology were “still very real and concerning”.
”[There are] limited prospects of securing substantial additional funding in an austere fiscal environment, growing numbers requiring services, and staffing remaining [an] ongoing problem.”
A spokeswoman told the Herald the main barrier was a shortage of ophthalmologists and other workers.
“When CMDHB was able to have additional staff kindly provided by other DHBs [Auckland, Waikato, Tauranga] for a short time, an additional 900 people were seen each month over May-June. This could not be sustained without putting at risk other DHB wait times.”
Counties recently signed off a three-year plan to hire more staff, buy equipment and expand facilities. Asked how many other patients lost sight, the spokeswoman said “we are investigating some patients who may have had reduced vision [not blindness] that may be attributed to waiting time”.
Deficit warning?
DHBs were $240m in the red in the past financial year, and most will stay in deficit.
That’s worrying the Health Quality & Safety Commission.
“A tightening fiscal environment, combined with an increasing number of DHBs in deficit, should be seen as an early warning signal for possible future quality, safety and sustainability issues,” the watchdog concluded in A Window on the Quality of NZ’s Health Care 2018.
“Prior to the 2018 Budget, no real increase in funding had occurred for the health system for nearly 10 years.”
In January, Counties Manukau DHB told the director-general of health of “an emerging urgent need for cash, which will continue to grow”.
The health board will dip in and out of a $75m overdraft over the remainder of the financial year. Land has been sold to fund works including a dialysis laboratory.
The future
Rose’s family received a face-to-face apology over her treatment in July. Two weeks later her upcoming appointment was cancelled.
Her father rang and was told no ophthalmologist was available. He sent an email, copying in the senior staff they’d just met.
She was eventually seen in September, on her 17th birthday.
In the morning there were presents including a voucher to Spookers. After lunch, she received confirmation sight in her left “good” eye was slowly deteriorating.
Her family may look into braille lessons. Friends her age are learning to drive, and she has asked about a learner licence. Her parents are checking with the optometrist.
For all she’s been through — a darkening world, the uncertainty, splitting migraines — her reaction when told her right eye was beyond treatment was relief.
“It was a shock. But I was happy. At least I’ve got one eye which I can see out of.
“I’ve just been doing what my optometrist has said to do.”