Cancer took much of Val Ireland's face as well as her ability to talk, eat and comfortably socialise or look in the mirror.
The side of her upper jaw and part of her sinuses were removed along with the cancer. To reconstruct her face, surgeons used bone taken from her leg, but the graft failed.
The 69-year-old has endured a further 15 surgeries. Thirteen were at Auckland Hospital and the last three at Mercy Ascot.
It's six years since the first operation but she still can't eat, talk easily or keep liquid in her mouth long enough to swallow.
Once outgoing and a keen dancer, Ireland mostly sticks to her 10 acres at Kaiwaka now. When she does go out people can stare.
She felt the same isolation during her long treatment, a rolling nightmare she has often had to navigate alone. Operations have failed, but there are other struggles.
"I do feel like I'm dumped after one or two follow-up appointments. It's nine months to a year when I don't hear anything, so I have to start ringing to see what's happening," Ireland said.
"Then I get an appointment, and even then it can drag on for months until I'm contacted again."
A Weekend Herald investigation into how head and neck cancers are treated across the northern DHBs – Waitemata, Auckland, Northland and Counties-Manukau – has found Ireland's issues aren't isolated. Leaked documents reveal:
• A major review found "internal and inter-DHB politics going back many years" hampered co-ordination of cancer services, and affected patient care.
• Health workers reported anecdotal examples of cancer progressing during treatment delays, and "significant gaps and shortcomings" in services have been identified.
• Surgeons have demanded an urgent culture change at Auckland District Health Board and warned of risks to patient safety.
• Patients who had their tongue and voicebox removed being told they don't meet the criteria for speech therapy, despite it being critical to their recovery.
• "Post-code healthcare" forcing patients to pay $5000 a year for devices which are funded in neighbouring DHBs.
In March an entire team of surgeons crucial in the treatment of head and neck cancers co-signed an extraordinary letter.
The oral and maxillofacial surgeons, one of several surgical teams that can be needed to treat head cancer, were making a last-ditch plea for their colleague, a recent recruit from overseas who was considering leaving because of inter-departmental politics.
But they were also delivering a warning about what would happen if changes weren't made, and fast.
"The public will be at risk," they wrote in the letter to the head of the oral health unit, obtained by the Weekend Herald. "We see injustice at many levels…a sea change is required by the ADHB, and urgently."
The recent recruitment of the surgeon helped "create safety" around the team's 24-hour service, the letter stated. However, his treatment, including the unfair restriction of surgical practice and being "stonewalled" by surgeons in another team, had "broken his spirit".
"As a service we are appalled at the way he has been treated by the ADHB. The outcome may be the loss of a very good surgeon, academic and teacher. [Another surgeon] may follow," the letter stated.
That would return staffing to unsafe levels, result in the loss of training accreditation and put the public at risk.
"With kindness and support this precarious situation could have been avoided. Instead the ADHB has been reckless," the surgeons wrote.
Head and neck cancers can involve the tongue, mouth, salivary glands, throat, nasal cavity and sinuses. Patients often need an ear, nose and throat surgeon, a plastic and reconstructive surgeon and an oral surgeon.
Teeth, bone, tongue, tissue and voice box can be removed and facial reconstruction spread over multiple surgeries. Results are worn on the face. The ability to talk, eat, swallow, laugh, smile and kiss can be lost or become a mighty task.
Teamwork between different surgical groups can be crucial to keep people alive but also minimise such disfigurement and disability.
In seven months the new surgeon gained support at Waitemata, Northland, Counties-Manukau DHBs and Mercy-Ascot hospitals, his colleagues' joint letter states. However, there was little support for him at his own DHB, with his attempts to be collegial with surgeons from another team rejected.
The ADHB clinical leadership had allowed this behaviour, the surgeons stated, with chief executive Ailsa Claire not responding to their colleague's email for help. The director of surgery and chief medical officer were also at fault, they alleged.
Four years ago the oral and maxillofacial service was marked as a vulnerable service by the ADHB and consultants were near burnout, the letter stated. Adequate staffing was achieved after a long and stressful campaign "and then, almost immediately, placed in jeopardy".
The surgeon in question declined to comment, but an ADHB spokeswoman said he "has not left our employment at this time".
Joanne Gibbs, the health board's director of provider services, said no matter how "robust" internal discussions were, staff were united in their commitment to patient welfare.
"In this case, thanks to the commitment of our oral and maxillofacial surgeons and others in the head and neck service, we have been able to put systems and processes in place to ensure patient care is maintained. It is important our patients are assured the standard of care they receive has not been impacted by internal issues."
Things had moved on considerably since the March 13 letter, Gibbs said, with the surgeons meeting with Claire and others on the ADHB executive for extensive discussions on the issues raised. Ongoing meetings will review progress, address issues and develop a "service improvement and investment plan".
'Disease progresses' while people wait
Each year about 520 Kiwis are told they have head or neck cancer; roughly a third are within the northern DHB region.
How those people are cared for was recently reviewed with the help of more than 100 staff and patients across the four health boards, and groups including the Cancer Society.
The key recommendation was to set up a regional head and neck cancer group, which will be the centre of a "hub and spoke" model for services and treatment.
Despite several earlier reviews, there had been no co-ordinated planning for head and neck cancer services across the DHBs.
"Internal and inter-DHB politics going back many years have hampered co-ordination, meaning that services have continued to grow organically at each DHB," the review found.
Weekly meetings to discuss all major cases in the region and reach agreement on treatment weren't attended by surgeons from DHBs other than Auckland, unless their cases were being discussed. This was partly because of a "perceived lack of collegiality".
The final report was produced in November last year and circulated among DHB staff, patient groups and stakeholders.
It's conclusions were blunt – including that the lack of planning across the regions had led to deficiencies in some areas, among them a lack of dedicated facilities.
"Undeniably this is impacting on the quality of care in the region," the report concluded. "From the extensive feedback from staff and patients it is apparent that there are significant gaps and shortcomings in the current service provision".
There were lengthy delays for clinic and surgery at Auckland City Hospital, "particularly recently, when there has been a reduction in the number of surgeons at the unit".
Waitemata DHB staff said treatment delays at Auckland were a reason to develop a local service and "anecdotal examples of disease progressing while waiting were given". The dietary service was "very stretched", and there was limited nursing available for outpatients.
In feedback on oral health services, concern was expressed about "inadequate" surveillance of premalignant conditions – meaning cancer could be missed.
"The potential cost to patients . . . is not just financial but also the risk of delayed identification of recurrence or malignant change in premalignant lesions," the report stated.
No tongue, no larynx - no speech therapy
Over 100 patients and staff took part in the review, and many patients recalled being denied crucial follow-up care.
More than one patient who had their tongue and voice box removed in a procedure called a total glossectomy and laryngectomy were told they didn't meet the criteria for speech and language therapy. Others had limited sessions.
Dr Anna Miles, a senior lecturer in speech science at the University of Auckland, said long-term speech therapy was essential. Patients were taught to use remaining muscles to regain the ability to eat, drink and talk.
Glossectomy and laryngectomy patients who don't get enough speech therapy could be tube-fed for life, and be unable to work because they can't communicate.
"Patients who return to us having not had any care can be in a terrible state – tube-fed and having to write things down to communicate. We expect all patients to return to functional speech, even without a larynx."
Physiotherapy was also declined for some patients, despite major surgeries restricting their movement.
One man told no couldn't lift his arms above waist height.
An exasperated specialist representing another patient refused to leave the physio department until an appointment was booked.
Partners of patients maxed out leave to assist with care, but eventually had to return to work, and a lack of proper ongoing rehabilitation furthered the social isolation felt by some patients, particularly those living rurally.
Muddled information added frustration to the emotions faced during cancer treatment, another reported: "I have never had a follow-up plan, I don't think any NZ patient has one, although overseas patients seem to."
Patient feedback was included in the draft document, but not all of it made the final report. After being approached for comment, ADHB notified the Privacy Commissioner of a breach, saying despite the stories being anonymous, they contained identifying details.
Through its legal counsel, the health board asked that the appendix containing the anonymous patient stories be destroyed, a request that was declined.
Diana Ayling, chair of the Head and Neck Cancer Survivors' Support Network, said the rollout of new specialist nursing positions should help people get the support needed, including speech therapy.
"We would expect this gap in care to now be highlighted by the clinical nurse specialist."
Ayling said the group cautiously supported the proposed "hub and spoke" model for care across the northern DHBs, and said collaboration was most important.
"There are certainly unmet needs in the head and neck cancer patient population, but we have confidence that our presence in the working groups will help fill these gaps."
Dr Wilbur Farmilo, the clinical chair of the head and neck cancer review, said it was expected the review would highlight things to do better.
"It is an excellent piece of work that we believe will make a significant difference for our patients . . . we are very grateful for the generosity of these patients in sharing their stories."
Work to implement the review's recommendations had started, Farmilo said, including involving patients in decisions and better ongoing care. The review found a majority of patients spoke highly of their primary treatment, and had an improvement in quality of life in the first two to three years after treatment.
"Our patients can be confident they currently receive high quality care that compares well nationally and internationally," Farmilo said. "However, as their stories demonstrate, there are areas where we can make meaningful improvement."
A national cancer agency
Health Minister David Clark said through a spokesman that he was concerned at any reports suggesting patient care was affected by poor staff culture, but he wouldn't comment on operational matters.
However, he said he had last month tasked the Ministry of Health with preparing a new strategy to improve cancer care.
"One of the major priorities for the strategy is a focus on the whole health system working together more effectively to improve quality of life.
"The other priority is to improve equity of health outcomes, especially for Maori and Pacific peoples."
Before the election Labour pledged a "national cancer agency", at an initial cost of $20m and to streamline services so Kiwis got the same level of care, no matter their address. Once up and running it would work with DHBs to make Budget bids for more staff and equipment.
Asked about those plans, Clark said governance, leadership and co-ordination of the sector would be considered as park of the work on the new care strategy.
"I expect to have more to say on this when the ministry comes back to me with the draft strategy later this year."
Health spending has become a major political issue for the new Government, with National saying it doesn't have the necessary funds after big campaign promises like free tertiary study.
Labour has pledged an extra $8 billion extra for health over four years. However, Prime Minister Jacinda Ardern has responded to mould and asbestos issues at Middlemore Hospital by saying health underspending is "worse than we thought".
Clark faced pressure this week after announcing Labour's promise to cut the cost of a GP visit by $10 from July 1 this year would have to be phased in over time. He pointed to Labour having to meet the cost of new priorities from agreements with NZ First and the Greens as a reason.
In announcing the national cancer agency policy last July, then Labour leader Andrew Little referenced his own treatment for early-stage prostate cancer in 2009.
Underfunding of DHBs had led to inconsistent care. Aucklanders, for example, have a lower radiation treatment rate than Wellingtonians.
"What really worries me is that cancer care can be a postcode lottery," Little said.
The same term featured in a patient story included in the head and neck cancer review.
Patients who have a total glossectomy and laryngectomy breathe through an opening at the base of the neck, called a stoma.
A device called a heat and moisture exchanger (HME) sits over the hole in the neck and greatly helps breathing and nasal functions. Less saliva and mucus is coughed up, and people can talk more clearly. Self-esteem is also enhanced given the device properly covers the stoma.
Some DHBs supply the devices, but others including Auckland and Northland DHBs don't – forcing cancer survivors to pay about $5000 a year, or go without and wear a cover or foam pad.
"It feels like postcode healthcare," the partner of one patient told the DHB review. "If you live at the right address HMEs and other essential consumables are funded, while if you live where we do, you have to pay."
Similar stories are likely to surface. It's understood health boards in Auckland and Northland are set to examine how other cancers and health conditions are treated across the region.
Head and neck cancers
• About 520 new cases in New Zealand each year, one third of which are in Auckland or Northland.
• Head and neck cancers, excluding melanomas, make up about 4.5 per cent of new diagnoses of cancer. However the complexity of treatment and recovery puts a larger burden both on patients and families and the health system.
• Cases are increasing at a faster rate than other cancers, and two-thirds of new cases are amongst patients under 65.
• The five-year survival rate for people diagnosed with head and neck cancer is about 60 per cent.
• The total population across the northern region DHBs – Northland, Waitemata, Auckland and Counties-Manukau – is 1.8m, and expected to grow to 2.3m over the next 20 years.
Source: Northern Cancer Network (Waitemata, Auckland, Northland and Counties Manukau DHBs).