Patients ‘at risk’
As surgeons warn that in-house politics is threatening one of Auckland DHB’s cancer services, patients suffer the consequences, writes Nicholas Jones
Surgeons have demanded an urgent “sea change” at one of the country’s largest health boards and accused management of recklessness. The extraordinary step came after a major review found cancer services had been affected by workplace and inter-DHB politics over years.
That contributed to “significant gaps” in head and neck cancer services in Auckland and Northland, with staff giving anecdotal examples of cancer progressing during delays.
Patients surveyed for the review gave harrowing stories of battling cancer and for access to essential treatment.
More than one person who had their tongue and voicebox removed in surgery were later told they didn’t meet the criteria for speech therapy — critical for regaining communication and to avoid being tube fed for life.
Other cancer survivors are being forced to pay $5000 a year for breathing devices which would be entirely funded in a neighbouring DHB.
Documents obtained by the Weekend Herald include a letter from an Auckland District Health Board surgical team involved in the treatment of head and neck cancer, sent in March to the head of the oral health unit.
In it, the oral and maxillofacial surgeons make a last-ditch plea for a colleague, who they alleged had been “stone-walled” by surgeons in another team and badly treated by clinical leadership.
He was on the verge of being lost to the public health system, the surgeons wrote, and if that happened staffing would drop back to unsafe levels and “the public will be at risk”.
ADHB leadership had done nothing despite appeals for help, they claimed, including chief executive Ailsa Claire.
“A sea change is required by the ADHB, and urgently,” the letter states. “With kindness and support this precarious situation could have been avoided. Instead the ADHB has been reckless.”
The surgeon involved declined to comment. An ADHB spokeswoman said he “has not left our employment at this time”.
Joanne Gibbs, the health board’s director of provider services, said patients could be assured the standard of care they received hadn’t been affected.
“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 process in place to ensure patient care is maintained.”
Things had moved on considerably since the March 13 letter, Gibbs said, with the surgeons meeting the chief executive 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”.
The letter was no longer “an accurate reflection of the current engagement between the oral and maxillofacial surgeons and DHB leadership”.
An area the surgeons work in, the treatment of head and neck cancer, was subject to a major review finalised last November, which found disturbing shortfalls across Northland, Waitemata, Auckland and Counties-Manukau DHBs.
Leaked documents reveal examples of cancer progressing during treatment delays, and “significant gaps and shortcomings” in services; “postcode healthcare” forcing patients to pay for services funded elsewhere; and a lack of collaboration — blamed partly on years of “internal and inter-DHB politics” — meant services had grown organically, not strategically.
This had “undeniably impacted the quality of care in the region,” the November review concluded.
Waitemata DHB staff told the review delays for patients getting treatment at ADHB were a reason local services were developed, and gave “anecdotal examples of disease progressing while waiting”.
And in feedback on oral health services in the region, concern was expressed about “inadequate” surveillance of premalignant conditions, meaning cancer could be missed.
Dr Wilbur Farmilo, the clinical chairman of the head and neck cancer review, said work to implement the review’s recommendations had started, including involving patients in decisions and better ongoing care. The review found a majority of patients spoke highly of their primary treatment.
“Our patients can be confident they currently receive high quality care that compares well nationally and internationally,” Farmilo said. “However . . . there are areas where we can make meaningful improvement.”
Health Minister David Clark last month tasked the ministry with preparing a new strategy to improve cancer care.
With kindness and support this precarious situation could have been avoided. Instead the ADHB has been reckless. Surgeons’ letter
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.
Six years after the first operation 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 sometimes stare.
Ireland had felt the same isolation during her long treatment, a rolling nightmare she 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. Nine months to a year I don’t hear anything, so I have to start ringing to see what’s happening,” she says.
“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 review finding that: “Internal and inter-DHB politics going back many years have hampered co-ordination, meaning that services have continued to grow organically at each DHB.”
● Health workers reporting anecdotal examples of cancer progressing during treatment delays, and that “significant gaps and shortcomings” in services have been identified.
● Surgeons demanding an urgent culture change at Auckland District Health Board and warning 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.
● “Postcode 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 were making a last-ditch plea for a colleague, a recent recruit from overseas who had decided to leave because of interdepartmental politics.
The surgeons 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.”
Recruitment of the surgeon had helped “create safety” around the team’s 24-hour service, the letter said. 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.
The teeth, bone, tongue, tissue and voice box can be removed and facial reconstruction spread over multiple surgeries. The 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 disfigurement and disability.
In seven months the new surgeon had gained support at the 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, and his attempts to be collegial with surgeons from another team were rejected.
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 vulnerable 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
We see injustice at many levels ... a sea change is required by the ADHB, and urgently. Letter from a team of surgeons
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.
She said ongoing meetings would review progress, address issues and develop a “service improvement and investment plan”.
EACH YEAR about 520 Kiwis are told they have head or neck cancer; and roughly a third of them 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 in 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. Its conclusions were blunt — they included that the lack of planning across the regions 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 clinics and surgeries at the 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; “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 cancers 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.
MORE THAN 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 was told they didn’t meet the criteria for speech and language therapy. Others had limited sessions.
Dr Anna Miles, 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 lregain the ability to eat, drink and talk.
Glossectomy and laryngectomy patients who did not 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 who was representing another patient refused to leave the physio department until an appointment was booked.
Partners of patients maxed out their leave to assist with care, but eventually had to return to work, and a lack of ongoing rehabilitation furthered the social isolation felt by some patients, particularly those who were living rurally.
Muddled information had added frustration to the emotions faced during cancer treatment, another reported: “I have never had a follow-up plan, I don’t think any New Zealand 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 its 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 believed that 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 that a majority of patients spoke highly of their primary treatment, and had had an improvement in quality of life in the first two to three years after their 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.”
David Clark said through a spokesman that he was concerned at reports suggesting patient care was affected by poor staff culture, but wouldn’t comment on operational matters.
However, he said he had last month tasked the Ministry of Health with preparing a new strategy for improving the care of cancer patients.
“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 had pledged a “national cancer agency”, at an initial cost of $20m and to streamline services so Kiwis received the same level of care, no matter their address.
It would work with DHBs to make Budget bids for staff and equipment.
Asked about those plans, Clark said governance, leadership and coordination of the sector would be part 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 issue for the new Government, with National saying it doesn’t have the necessary funds available after big campaign promises like free tertiary study.
Labour has pledged an extra $8 billion 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, the-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 to have a total glossectomy and laryngectomy breathe through an opening at the base of the neck, called a stoma.
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, as the device properly covers the stoma.
Some DHBs supply the devices, but others don’t — forcing some 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 will look at how other cancers and conditions are treated across the region.