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‘My life denied’: The cost of cancer treatment delays - a special investigation

Author
Nicholas Jones,
Publish Date
Sat, 4 May 2024, 9:53am
Mike Gutsell and Glenda Graham (standing) with their children, Ben and Katy Gutsell, at Katy's 21st birthday celebration in 2005. Photo / supplied
Mike Gutsell and Glenda Graham (standing) with their children, Ben and Katy Gutsell, at Katy's 21st birthday celebration in 2005. Photo / supplied

‘My life denied’: The cost of cancer treatment delays - a special investigation

Author
Nicholas Jones,
Publish Date
Sat, 4 May 2024, 9:53am

Clinical psychologist Glenda Graham suffered delays in treatment for her endometrial cancer before her death in October 2020.  

Health NZ is now investigating how many other patients may have been harmed by problems in the Southern region’s cancer services, and the country’s health watchdog has warned hospitals across the country are under similar pressure. Nicholas Jones investigates. 

Work was one reason Glenda Graham fought to stay alive. 

As one of a handful of clinical psychologists in the South Island helping serious sexual abuse and assault victims, she’d been alongside many of her clients for decades. 

That vital, in some cases life-saving, calling came under threat when Graham was diagnosed with a rare and aggressive endometrial cancer. 

She experienced treatment delays, as services in the lower South Island (including her home of Invercargill) buckled under growing demand. 

In January 2019, Graham learnt her cancer had spread, and she likely had months to live. 

She refused that sentence and received radiation at a private clinic in Sydney. That gave her more time - about a year, her family believes. 

Graham bought an electric bike to travel with her tramping club, kept up her gardening and busy social life, and returned to work. 

Her health deteriorated, and she arranged for a client’s submission to the Royal Commission of Inquiry into Abuse in Care to be brought forward, and was by her side during the meeting. 

Soon afterwards she became bedridden, and died on October 18, 2020, aged 63. 

“She wanted to die at home,” says her son Ben Gutsell, who lived with his mum and nursed her. 

“She wasted away so quickly … that last month was really hard.” 

Before that deterioration, Graham spent precious time compiling evidence of her delayed care. 

“I am really angry,” she began one document. 

“Really angry that the Southern DHB/Canterbury DHB have presided over my inevitable death. They have puddled around, putting me through so many steps of diagnosis and delay that my condition has proceeded to be incurable. 

“What do I want? My life, but this has been denied.” 

How Southern cancer services failed 

Cancer delays in the Southern region - which covers a population of more than 350,000, including Queenstown, rural Southland, Central Otago and Dunedin - have harmed dozens of other patients, some of whom died soon afterwards. 

That scandal was brought to national prominence by Blair Vining, a farmer and father-of-two who was told it would be 12 weeks before he could see an oncologist for his bowel cancer when he’d been given less than that time to live.  

Vining, 39, and his wife Melissa campaigned for better cancer services before his 2019 death.  

Melissa has continued that advocacy, and her complaint to the Health & Disability Commissioner in late 2021 led to a major investigation by the country’s health watchdog.  

Commissioner Morag McDowell’s scathing report into Southern’s non-surgical cancer service outlined concerns that DHB leaders were overly focused on a financial deficit and didn’t increase staff numbers, despite clinical directors pleading for help since at least 2016. 

(One doctor commented that the frequent appeals to the executive was like “charting the course of the Titanic”, because action wasn’t taken to change the trajectory towards increasing wait times and harm to patients.) 

A system to report delays and subsequent harm wasn’t being used, the commissioner found, but clinical directors sent a “harm register” to the chief executive in March 2021. 

This gave a snapshot in time of the situation covering the first four months of 2021. 

There were 42 patients judged harmed because of delays. That included cancer being allowed to spread to the point beyond treatment. 

“[We thought that] if we personalised it to some degree … this might focus their thinking,” a doctor involved later said. 

The registers - which excluded psychological harm - were the catalyst for a crisis response. 

The commissioner-initiated investigation concluded in April 2023. In February this year, McDowell released an addendum that noted considerable work had been done since but warned “the sustainability of the service remains at risk”, particularly because of senior doctor shortages. 

“Until these workforces are stabilised and enhanced, there is no guarantee that patients will be seen and treated within appropriate timeframes, and therefore there is no guarantee that there will not be ongoing patient harm,” McDowell wrote. 

Cancer services nationwide are under similar pressure, she said. 

“I am acutely aware that cancer outcomes are potentially compromised by a delay in treatment.” 

The actual number of Southern patients harmed to date isn’t known. 

Graham was uncounted - her complaint to the DHB went nowhere, until her daughter Katy Gutsell chased it up in August last year. 

Health NZ sent her its findings in March, which outlined multiple delays. 

“Whilst we cannot speculate as to whether earlier intervention would have allowed Ms Graham to live longer, we acknowledge that almost always earlier treatment is beneficial,” the report concluded. 

 

Clinical psychologist Glenda Graham experienced a number of delays in treatment for her endometrial cancer, an investigation into her complaint to Southern DHB (now Health NZ/Te Whatu Ora Southern). Graham died on October 18 2020. Health authorities are investigating how many cancer patients in the region may have been harmed by delays, following a highly critical Health & Disability Commissioner investigation.Clinical psychologist Glenda Graham experienced a number of delays in treatment for her endometrial cancer, an investigation into her complaint to Southern DHB (now Health NZ/Te Whatu Ora Southern). Graham died on October 18 2020. Health authorities are investigating how many cancer patients in the region may have been harmed by delays, following a highly critical Health & Disability Commissioner investigation. 

A career dedicated to others 

Graham grew up on a farm near Gore, the second-youngest of four children. 

Her interest in psychology was sparked by a library book brought home by her older brother Peter. 

She worked in the public system until redundancy in 1998, when she established a private practice in Invercargill. 

Graham completed overseas training in treating identity dissociation, joining the International Society for the Study of Trauma and Dissociation. 

Another focus was ACC sensitive claims (involving sexual abuse or assault) and she worked with offenders in prison, most of whom had experienced childhood abuse themselves. 

“The way mum described it was that she wasn’t fixing these people,” Ben says. “It was, ‘I’m proud they’re fixing themselves, and that I’m part of that.’” 

Katy didn’t grasp the weight of that effort until adulthood, when she became a youth worker. 

“She never brought any of it home. To her, it was a privilege to be in service to others.” 

Graham’s marriage broke up when Katy and Ben were adults. She lived alone, but kept a busy social schedule, being involved in clubs and societies, including film, tramping, music, cycling, environmental protection and women’s groups. 

“She was warm, and had a huge zest for living - she was very interested in people and so many things,” says her close friend Joyanne Hope, part of the same book club for 13 years. 

“She played a fiddle, she went to music camps on her own, she would go to concerts. 

“Glenda was well-read, and had a lot of knowledge. And if she didn’t know something, she would research and find out. She had a great sense of humour, too. We had a lot of laughs.” 

Fastidiously healthy and with longevity in her genes, Graham planned for 30 years or more of retirement, full of travel and adventure. 

Music was one of Glenda Graham's many interests.Music was one of Glenda Graham's many interests. 

That horizon closed in after weeks of abnormal bleeding. 

A private ultrasound on September 10, 2018 checked the inner lining of her uterus (called the endometrium), which appears as a dark line on sonograms. 

A thickened stripe can indicate cancer. It’s typically less than 5mm thick for post-menopausal women. Graham’s was 34mm. 

She was seen by Southland Hospital’s gynaecology service 15 days later. 

The possibility of cancer was discussed, and a biopsy picked up malignant cells. On October 15, a procedure to remove tissue from her uterus indicated grade 2 cancer. 

An urgent CT scan was ordered for October 31, and on November 12 her case was discussed at a gynaecology multidisciplinary meeting (where specialists reach consensus on the next steps in treatment). 

It wasn’t thought her cancer had metastasized (spread to other areas of the body), but there was concern about an abnormal lymph node. 

Two days later, Graham saw a specialist in Christchurch and agreed to a laparotomy - removal of her womb, ovaries and fallopian tubes, and dissection of lymph nodes for cancer cells. This happened on November 20. 

She woke to devastating news: the surgeon had seen signs of cancer in her vagina, and tissue (cytology) testing also indicated cancer had spread. 

Time was critical. However, at a multidisciplinary meeting on November 26, full histology results weren’t available, so decisions were deferred until the next meeting on December 10. 

Glenda Graham (on the left) with her friend Joyanne Hope.Glenda Graham (on the left) with her friend Joyanne Hope. 

Those histology results returned on November 30 and confirmed stage IIIB high-grade serious carcinoma, which had reached lymph nodes. 

Christchurch specialists discussed the results and the need for a PET scan, thought to have already been arranged by Graham’s surgeon, and which uses a mildly radioactive liquid to show up areas of the body where cancer is likely. 

The December 10 multidisciplinary meeting urgently referred her to medical oncology and for radiation. On the same date, Graham met her surgeon. 

Nothing was done for the rest of December. 

At a radiation oncology meeting on January 3, 2019, Graham was told radiation would likely follow chemotherapy, depending on the PET scan, which still hadn’t happened. 

That finally occurred on January 15 - 56 days after the surgery that strongly indicated her cancer had spread. It confirmed the worst - malignancy in her vagina, bladder and pelvis. 

On January 23, Ben drove his mum to Dunedin Hospital, first picking his sister up from the airport. 

The oncologist expressed pride in “telling it straight”, Graham later wrote. She gave her three months to live, or 18 months if remission was achieved by palliative chemotherapy. 

Ben says he made it clear that money was available, but the specialist responded that there wasn’t much point seeking private treatment options or clinical trials. 

On the drive home, Graham spoke of Ben’s two boys, who are now aged 16 and 9. 

“She was in tears, realising that she’d never see what they would grow into,” Katy says. 

Glenda Graham with her eldest grandson Liam Coakley-Gutsell in 2020.Glenda Graham with her eldest grandson Liam Coakley-Gutsell in 2020. 

Graham had six cycles of palliative chemotherapy, but on June 25 was informed her cancer was spreading. Treatment would stop, until end-of-life care was needed. 

Her mother died the next day, aged 93. Watching the casket, Graham told her brother Steven it was like attending her own funeral. 

She still felt healthy, however, and eventually found a private specialist in Sydney who offered advanced radiation therapy, which had given similar patients years more lifespan. 

Graham travelled there alone, and rented an apartment near the hospital. Four weeks into the gruelling, $30,000 treatment she confided to Hope how sick she was. Katy and another of her mum’s friends flew over and nursed her through the final two weeks. 

“The treatment probably gave her about an extra year of life,” Katy says. 

“She went back to working full time - supporting her clients, and living a full and active life. 

“In January 2020 she had a minor fracture after coming off her mountain bike - this is a woman who should have been dead six to eight months ago, please take note.” 

The Covid-19 pandemic closed international borders, so Graham continued private treatment through St Georges Cancer Care in Christchurch, including experimental chemo. 

Her quality of life held until a rapid decline from late July 2020. 

“She was really pissed off near the end, because she’d done everything right in her life - eaten healthy, she hadn’t smoked or excessively drunk,” says Ben. 

“Everything she’d worked towards and saved for, all the plans she had, they weren’t going to be realised.” 

That anger was also directed at Southern DHB, who Graham complained to on September 6, 2020. 

Four weeks later Graham received a letter, advising her a complaint investigation was underway. The DHB promised to be in touch within four weeks. 

She died before then. Three years later Katy felt strong enough to ask about the complaint. It hadn’t progressed, she was told, because at the time of her death her mum hadn’t advised on a procedural issue. 

In March this year the findings were finally signed-off by Simon Donlevy, general manager of Southland Hospital. 

The investigation categorised time frames: “reasonable and within expected bounds”, “delay, but due to inherent constraints in system”, and “delay that we would like to avoid”. 

There were two in the “like to avoid” category, including the 44 days Graham waited for a medical oncology appointment. This should have happened within three weeks. 

“This unfortunately reflected a time where the oncology service was experiencing demand which exceeded its capacity for providing treatment and appointment for patients, especially without curative intent, were delayed,” the report explained. 

The second was the 46 days for a PET CT scan. A referral on November 30 wasn’t actioned, and rewritten on December 21, the report noted. 

Glenda Graham, left, and her daughter Katy Gutsell in 2019, on their way to the Hugh Jackman matinee performance in Auckland and following Graham's private radiation treatment in Sydney.Glenda Graham, left, and her daughter Katy Gutsell in 2019, on their way to the Hugh Jackman matinee performance in Auckland and following Graham's private radiation treatment in Sydney. 

The one identified delay “due to inherent constraints in the system” was the “longer than desired” 25 days it took for a proper discussion of her histopathology results. 

Since Graham’s death the frequency of multidisciplinary meetings has increased from fortnightly to weekly, the report explained, which “has better mitigated the criticality of timing of results being available before decisions are able to be made”. 

The delay to start chemotherapy for Graham’s “very rare and aggressive” cancer was “less than satisfactory”, the report stated. 

“We can understand why Ms Graham was frustrated by what she saw as delays in her diagnosis and treatment that may have ultimately influenced her prognosis.” 

A clinical nurse now attends doctors’ meetings “to ensure that decisions are made in a timely manner”, the report stated, and there’s a focus on PET scans. 

“There has also been and continues to be a considerable amount of work to try and resolve the resourcing issues in medical oncology which were a cause of delays in the service. 

“It also needs to be acknowledged the amount of reading and research that Ms Graham undertook in seeking treatment options and in her holding us to account in her interactions with us.” 

Mike Gutsell and Glenda Graham (standing) with their children, Ben and Katy Gutsell, at Katy's 21st birthday celebration in 2005.Mike Gutsell and Glenda Graham (standing) with their children, Ben and Katy Gutsell, at Katy's 21st birthday celebration in 2005. 

‘She felt cheated’ 

Ben Gutsell returned to live with his mum after experiencing psychological trauma from the February 22, 2011, Christchurch earthquake. 

He spent much of the first year in bed, but her love for him and life was a medicine - they watched documentaries together, ate from the garden, and talked for hours about the world. 

Ben began fulltime work but dropped plans to move out when his mum got sick. In those awful last weeks, he became her caregiver. Graham’s last visitors included her friend, Joyanne Hope, who rushed back from a holiday. 

“She was drifting in and out of consciousness, but was still aware of what you were saying. I held her hand, and said, ‘It’s okay, you can let go when you are ready,’” Hope says. 

“She looked at me, and I saw in her eyes that she did not want to go, she did not want to die. She was exhausted. She had no energy. But she felt cheated - cheated of life. It was terrible to watch.” 

More than three years later it’s her friend’s smile and laugh that she remembers. 

“I miss her terribly. We all do. I don’t think there’s been a book club since when we say, ‘What would Glenda think about this?’” 

Ben is determined to live a positive and hopeful life that his mum would be proud of. 

“She was my rock, my guiding star. I don’t want to disappoint her. She had an amazing reputation, and I want to honour her.” 

Part of that effort is this article. Graham suggested to her family that they contact a journalist after her death. 

“Mum wouldn’t want other people to go through what she did, but her story isn’t unique down here,” Ben says. 

Melissa Vining agrees, and says the same problems - delays, poor communication, a flawed complaints process, the failure to advise of private treatment options - happened to Blair and many other patients. 

Reading the report into Graham’s complaint “caused me physical pain”, she says, because it seems like lessons aren’t being learnt. 

She knows other women whose disease progressed because of delays caused by the geographical “triangle” that sends women with gynecological cancers between Invercargill, Dunedin and Christchurch. 

“My own cousin died last year. She had very similar circumstances to this. She didn’t have the energy to fight the DHB.” 

Blair and Melissa Vining photographed with their two daughters, Della-May and Lilly, in 2019. Blair's fight for better cancer services has been continued by Melissa.Blair and Melissa Vining photographed with their two daughters, Della-May and Lilly, in 2019. Blair's fight for better cancer services has been continued by Melissa. 

Vining - who will soon open a charity hospital in Invercargill, inspired by Blair - says she laughed in disbelief at the categorisation of “delay, but due to inherent constraints in system”. 

“That’s wishy-washy … it effectively translates to, ‘Super sorry about that, your disease has progressed, but it’s not our fault because we don’t have the resource.’ 

“You’re either seen in a clinically appropriate time, or you’re not.” 

Health NZ Southern told the Herald it is investigating how many patients may have been harmed by the 2016-2022 delays - a development that was news to Vining. 

Hamish Brown, its group director of operations, says improvements include “patient navigators”, an extended psychosocial service, revised patient letters, and better patient safety monitoring and reporting. 

There’s now a full contingent of senior medical officers for medical oncology and haematology, Brown says, and recruits lined up for radiation oncology. 

“Although we see as many patients as possible within appropriate timeframes, we continue to face significant challenges due to the demand on our services and resource constraints. Unfortunately, this impacts many of our patients resulting in extended waiting times.” 

About a third of the 205 people waiting for a first specialist appointment for either radiation oncology, medical oncology or haematology were overdue as of April 14. 

Fourteen overdue cases weren’t ready to be seen when referred. This could be because they were waiting for tests, or to finish another treatment. 

Another measure is by “faster cancer targets”, including the proportion of patients who receive their first cancer treatment within 62 days of being referred (usually by their GP) with a high suspicion of cancer. 

This was true for 70 per cent of Southern patients, the latest figures show - compared to 79 per cent nationally, and against a government target of 90 per cent. 

Southern does better on another target, which is to have patients receive treatment - such as surgery or chemotherapy - within 31 days of a decision to treat. Its 83 per cent is close to the official target of 85 per cent, also the national rate. 

Rami Rahal, chief executive of the Cancer Control Agency. Rami Rahal, chief executive of the Cancer Control Agency. 

However, Rami Rahal, chief executive of the Cancer Control Agency, which tracks the targets, told the Herald that another measure was needed - the time between someone’s first appointment with a specialist, and the formal decision to treat. 

That period can include tests, more appointments and multidisciplinary meetings. 

“That’s where a lot of delays often happen,” says Rahal, who previously helped lead Canada’s national cancer agency. 

“What we’re trying to move towards is a measure of diagnosis to treatment - how long it takes from the time a patient is diagnosed with presumptive cancer to their first treatment.” 

Other imminent changes include national guidelines for multidisciplinary meetings, and letting roles like radiation technologists do work currently reserved for oncologists. 

New Zealand must prepare for a predicted 75 per cent rise in cancer cases over the next 20 years, Rahal says. 

“We do have a challenge ahead of us.” 

The strain is already evident in a 40 per cent increase in HDC complaints over the past four years. 

“It does reflect, I think, pressures in the health sector at the moment, particularly pertaining to those workforce shortages issues,” McDowell told the Herald from her downtown Auckland office. 

Nineteen HDC complaints about Southern oncology services have been made since 2016, two of which are under investigation. 

Those include from a man whose specialist in 2021-2022 asked for an urgent MRI, to check if pain in his leg was caused by a relapse of cancerous melanoma. 

The scan should have happened within 31 days, but took 20 weeks. By that point his melanoma had spread further through his spine and organs, and wasn’t survivable. 

Glenda Graham kept up her love of the outdoors and travel for as long as her health allowed.Glenda Graham kept up her love of the outdoors and travel for as long as her health allowed. 

A week wasted here, a few days lost there 

At Glenda Mary Graham’s funeral, Brown Eyed Girl played over photos which, reflecting her disdain for the limelight, were mostly pictures she’d taken while travelling. 

The more than 100 people crowded into Ascot Park Hotel in Invercargill included former patients, inmates and police officers. 

A bagpiper from her folk music group played as her coffin was carried out, and again at the burial outside Gore. 

Her headstone inscription acknowledges a “much loved Sister, Mum & Granny”. “She cared for the land & the people so that we may go forward.” 

Three months later Katy cleared her mother’s inbox and opened an email from an ACC manager, asking Graham to take a client in desperate need. 

There was nobody else suitable and available in Southland, the woman implored. 

It stung to explain that there would be no help. 

“She achieved so much in that extra year,” Katy says of the time her mum got through eventual private radiation and chemotherapy. 

“How much more could she have done if there hadn’t been this week wasted here, the extra few days lost there?” 

Nicholas Jones is an investigative reporter at the Herald. He won the best individual investigation and best social issues reporter categories at the 2023 Voyager Media Awards. 

This article was originally published on the NZ Herald here. 

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