Cancer care advocate Melissa Vining says the fact charity hospitals exist should make politicians ashamed. David Williams reports
As the end neared, reality was sinking in.
Southland man Blair Vining, who had terminal bowel cancer that spread to his liver and lungs, had campaigned for a national cancer agency, backed by 140,000 signatures – and got it.
But he and wife Melissa – from Winton, north of Invercargill, who have two children, Della-May and Lilly – weren’t convinced it would do the job.
They’d spoken publicly about how Blair had been told in late 2018 that, without treatment, he’d have only six-to-eight weeks to live. A letter arrived from the Southern District Health Board soon after, stating an “urgent” appointment with an oncologist was eight-to-10 weeks away.
Blair might have died on the public system’s waiting list. They were forced to pay for private treatment.
In January 2019, Melissa addressed David Clark in front of 400 people at the International Cancer Crossroads conference in Wellington. “Minister of Health, it’s great to see you here. However, I want you to know you have failed my husband and you have failed many other New Zealanders by not having a cancer plan.”
The publicity put pressure on politicians, prompting action, including a plan. But the Cancer Control Agency, Te Aho o Te Kahu, didn’t quite hit the mark.
Blair wanted it to be independent. He thought if it was arm’s length from the Government it could be honest about the heath system’s poor performance, and the opportunity for change would stand a better chance. Instead, the announcement was followed by carefully crafted statements.
Meanwhile, people from up and down the country were sharing their very personal stories of the public system’s deficiencies.
For some people denied help by the public system, the Vinings paid for private colonoscopies, at about $4000-a-pop, hoping an early diagnosis would save their life. Alone, the couple could achieve only so much.
“We started to run out of money because we were paying for Blair’s treatment,” Melissa recalls.
It was September 2019, just weeks before Blair died. “He was like, ‘You should just build your own hospital, babe’. And I was like, ha ha, that’s really funny.”
Blair insisted: “We can’t just do nothing. You’ve got to keep your foot on the throats of those politicians.”
In the lead-up to that crucial conversation, Melissa met politicians from both sides. “They are always empathetic but I didn’t get a sense they were going to take action.”
She was also spending time sitting with sick people, hearing their stories of not being able to access the care they needed.
Blair was now actively dying. But other people were, too, he pointed out.
“His idea didn’t seem as crazy – as in, it was a good solution,” Melissa says. “But the thought of [me] not being a doctor, or not having a medical background, it didn’t seem very plausible.”
Melissa’s research led her to Canterbury’s charity hospital. She rang its founder, Phil Bagshaw.
“Hi, my name’s Melissa,” she said, nervously. “I was wondering if you would consider mentoring me to open my own hospital?”
Instead of hanging up, Bagshaw was supportive and kind. He invited her to Christchurch to see its facility – which she did when, soon after their conversation, Blair was flown to Christchurch for urgent treatment.
“The day I happened to go they happened to be performing colonoscopies, and there was a young mum who had been declined [for a colonoscopy in the public system], and they detected cancer in her.”
In the smoko room afterwards she marvelled at the culture, in which overworked and stressed medical professionals volunteered their time to help those who slipped through the bureaucratic cracks. This gave her hope the same would happen in Southland.
At this point it’s worth explaining a few things.
First, if bowel cancer is detected early enough, 90 percent of cases are curable. And a very reliable method of detection is a colonoscopy – a long, flexible tube, with a camera and light at the end, to search the bowel wall for growths, known as polyps.
People with symptoms – such as rectal bleeding, bowel motion changes, severe abdominal pain, tiredness and weight loss – can be referred for a colonoscopy if their doctor or gastroenterologist is sufficiently concerned.
A late diagnosis can be a death sentence – the cancer might be too advanced to do anything.
In Southland, people with obvious symptoms, and, sometimes, who had a specialist referral – in other words, symptoms severe enough for experts to think further investigation was warranted – were being “declined” a colonoscopy outright, offered inferior checks, or told to wait.
Something seemed amiss, thought Melissa – and she wasn’t the only one.
It turns out at about the time Blair was diagnosed with cancer, five Southland general surgeons wrote to Southern DHB chief executive Chris Fleming about a “very high incidence” of missed colorectal cancers in patients declined colonoscopies.
In May 2019, the Otago Daily Times newspaper reported on a leaked copy of a damning external review – authored by Bagshaw and gastroenterologist Steven Ding – which found undue delay in diagnosis or treatment in 10 of 20 Southland cases they reviewed.
A 2017 “confidential” internal survey of Southern DHB staff showed the problems with colonoscopy services had persisted for years. They became even more stretched the following year, when the DHB joined the national bowel screening programme – which proactively tests and screens older people to try and catch cancer early.
Fast-forward to October 2020, a year after Blair’s death, and Southern DHB chair Dave Cull publicly apologised for “lapses and inadequacies” in colonoscopy services.
But that came after three reviews, including Bagshaw and Ding’s, that found much the same thing – that access to colonoscopies was “tightly restricted” or “constrained”, with “adverse consequences”. There was evidence people died earlier than they should have.
Otago and Southland – the Southern DHB area – had some of the highest incidences of colorectal cancers in the country. It also had, according to the Bagshaw report, one of the highest rates of emergency surgery for colorectal cancer, and one of the lowest colonoscopy rates.
Needless to say, there seemed a strong case for a charity hospital in Southland.
During 2019 the idea gathered pace.
Every week Melissa spoke to Bagshaw, who was instrumental in enlisting Murray Pfeifer, one of the Southland surgeons who wrote to Southern DHB the previous year, to join the charity’s board. (He’s the board chair.)
Initial meetings were positive. About 100 medical personnel offered to volunteer.
Blair organised a public meeting in Invercargill for October. Unfortunately, he died before it happened.
Overcome with grief, Melissa was struggling to get out of her pyjamas let alone drive 40 minutes to Invercargill to speak to a crowd. But it had been advertised, and people expected her to turn up.
She got in her car. About halfway to the city she burst into tears and turned around. But 10 minutes later her phone rang. It was a Winton lawyer.
“He said that someone had just rung up, one of his clients, and anonymously donated a hundred grand to show support for the hospital that didn’t even exist yet.
“That was the first consultation meeting. I sat on the side of the road, laugh-crying, thinking, ‘I hate you Blair Vining. You’ve left me and now you’ve made this person ring up and give a hundred grand and now I can’t back out’.”
Melissa walked into a packed room – “my make-up was all wrecked; I looked a state”. Bagshaw had flown down with his wife Sue, to help answer questions.
Reaction was mixed.
Yes, something needed to be done. Southlanders weren’t getting the care they needed, when they needed it. Where people diverged was what to do.
Some said healthcare was the Government’s job; that’s why they paid taxes. “You’re just going to let them off the hook because you’re doing their job for them,” someone said.
Others worried that adding another charity would spread the community’s money too thinly, that other services would feel the strain. Melissa: “They were really valid concerns.”
She asked the crowd: “Can you put your hands up if you think we should proceed?”
Only a few hands stayed down, the ODT reported.
The community was behind the idea. Medical professionals were willing to give their precious time, despite their big workloads. Melissa thought: “This just needs to happen.”
As Melissa promoted the idea throughout Southland, she was clear the charity hospital wouldn’t compete with public or private healthcare.
“These people are the forgotten people. They are the people who have been declined help. That satisfied a lot of people.”
Christchurch’s Bagshaw, a general surgeon, has two seemingly opposing views of charity hospitals – about why they’re necessary, and the community’s willingness to pay for them.
“I think it’s a tragedy, and I think it’s also a triumph that the public at large did not have beaten out of them, by the neoliberalism of the ‘80s and ‘90s, the caring attitude. They responded to the unmet need.”
(There’s already a charity hospital in Auckland, and another is being established in Wellington.)
The Canterbury trust was established in 2004, and initially had a surgical bus. The doors opened at its surgery, on Harewood Rd, Bishopdale, in 2007.
“We are absolutely reactive,” Bagshaw says. “As the DHB gets out of something, we try to get into it. When we first opened up they weren’t doing hernias, so we did hernias. They then started farming hernias out into private, so we got out of hernias.”
Now, the three main areas it covers are endoscopy – “we provide an endoscopic service for the under-50s with rectal bleeding in the whole of the Canterbury area” – dentistry, and procedures related to women’s health.
It takes about $850,000 a year to run the hospital, which has two full-time and two part-time employees. It relies on 285 “active” volunteers.
“We have to work hard to get the money but the public are very generous,” Bagshaw says. “Never has there been a year that they have not provided us with enough money to keep going.”
But why should they have to?
In April, just before Newsroom met Vining, the Government announced major health reforms, including replacing DHBs with a single agency, Health New Zealand, and the creation of a new Māori Health Authority.
Health Minister Andrew Little said at the announcement that health was the Government’s second-biggest spend, with 20 cents in every dollar going towards it. That may sound impressive, but based on 2019 figures that puts New Zealand behind 18 developed countries, including Australia, Japan, Canada, the United States, and 14 European countries.
Little said the current system no longer serves the country’s needs well.
“We all know the pressure our hospitals and specialist services are under,” Little said, “and it’s largely because people are not getting the healthcare they need when they need it, and because people are living longer and developing more complex health issues.”
Newsroom asked the Government what it says about public health services that a charity hospital is being built in Southland, and will there always be gaps in public health services?
Duty Minister Carmel Sepuloni responded: “We’re focused on improving healthcare, access to services and hospitals, as well as ensuring the public health system is resilient and responsive through our ongoing health reform programme. Last week we also announced a suite of upgrades to local hospitals throughout the country, including Otago and Southland.
“The upgrades underline our shift towards better supporting planned and routine care while also continuing to safely care for Covid-19 patients.”
At least National Party health spokesman Dr Shane Reti addressed our question. He said charity hospitals were generally a response to an under-performing health system or the safety net being set too low.
“Southland has hundreds of people on cancelled waiting lists due to Andrew Little’s failure to build ICU beds in the past 18 months. Cataract surgery is the most cancelled procedure.”
In an emailed statement, Fleming, the Southern DHB’s chief executive, said he was supportive of Southland’s charity hospital. “The public health system, no matter how much it is funded, will have unmet need. For those in a financial circumstance that they can afford medical insurance or alternatively self-fund access to private health care they have this option, however there are significant parts of our community who are not in this position.”
“I’m in the middle of my grief. I am now a single mother, and I feel compelled to contribute what I can to change it. How do they sleep?” – Melissa Vining
Two years ago, Fleming said he supported the charity hospital but not its initial focus on colonoscopies. Considering the public service’s well-publicised problems over many years that might come as a surprise.
Even now, it’s clear issues remain.
A report to the latest meeting of the DHB’s hospital advisory committee, held in Invercargill in November, showed 190 Southland people on the “surveillance” waiting list – those with heightened risk of bowel cancer – had an average wait of 99 days. The longest was 265 days.
Meanwhile, in Dunedin, the average wait time for the 141 people was 22 days, with the longest being 167 days.
In his report, DHB chief operating officer Patrick Ng blamed the disruption on the latest Covid lockdown and said the backlog should be cleared by January. The stretched service was still being juggled.
Ministry of Health colonoscopy waiting time indicators for September were not met for urgent or non-urgent patients, Ng said. “Non-urgent patients have been deprioritised to allow recovery of surveillance patients and the impact of the Covid lockdown has impacted on overall performance. It is expected that non-urgent performance will be quickly recovered.”
On the surface, then, it seems to be heading in the right direction. However, the report is silent on the decline rate – the people turned away for treatment, or given inferior tests, despite having symptoms – and the number of people turning up at the emergency department with late-stage cancer.
Back in Invercargill, where Vining works as an HR consultant, the old Clifton Club Inn, which was gifted to the charity hospital, has been gutted and a “hospital shell” built.
People from all over New Zealand have contributed to the project, Vining says via email, with donations, materials and volunteer labour. There’s about $1 million to raise to get hospital equipment. All going well, the hospital will open in July.
Back in April, when we initially talked, she was worried about the lack of detail in the Government’s health reforms announcement. There seemed to be a strong commitment to forming bureaucratic organisations, she said, but not to increase frontline workers or build better infrastructure.
The previous month, an emergency department crisis at Dunedin Hospital left patients languishing in corridors for up to 24 hours.
Vining harked back to the stories of health system failures – long waits for surgery, people not getting the drugs they needed. People on strong painkillers, not able to work, while waiting for hip surgery. Kids waiting for grommet surgery who had trouble learning and weren’t sleeping. Inequities in treatment for Māori.
“I’m angry,” Vining said. “I feel sad when I’m sitting across the table from someone who’s contributed positively to our community and our country, and they are sick and they can’t access the care that they need.”
Medical professionals she talked to were overworked and under-resourced. Yet, above them sat a top-heavy, management-bureaucrat layer. “I feel angry that the people with the power to change it, the Health Minister and the Prime Minister, can just ignore it.”
People might celebrate what’s being achieved with the Southland charity hospital, and with Bagshaw’s trust in Canterbury, but Vining was adamant the community shouldn’t be funding basic health services. It was despicable, she said, and all politicians should be ashamed.
“I’m in the middle of my grief. I am now a single mother, and I feel compelled to contribute what I can to change it. How do they sleep?”