Battling the big C at arm's length

1.00pm - By TIM WATKIN

When Robert was diagnosed with prostate cancer last year, the shock of the illness was followed by a second, equally unexpected shock. His doctor told him if he wanted to be treated promptly, he would have to go to Australia.

Robert (not his real name) lives just 10 minutes' drive from Wellington Hospital and didn't particularly want to face the punishment of radiotherapy away from home. But the Ministry of Health's national guidelines suggest prostate cancer should be treated within four weeks, and the wait at Wellington was 15 weeks. Cancer's not something to toy with, he says.

"If you're given an option of waiting 15 weeks to get something done here or going to Sydney and having it done, you just don't have a choice. It's Hobson's choice."

With mixed feelings, he boarded a plane for Sydney in December, his and a support person's $15,000 travel and accommodation costs paid for by the public purse.

But the benefits of early treatment began to fray when, part way through his treatment, he suffered an arterial block in his leg. Robert was receiving his radiotherapy at the Sydney Adventist Hospital, Australia's largest private hospital, but a blocked artery wasn't part of their contract with our Ministry of Health.

If Robert had been receiving his radiotherapy in Wellington Hospital, he would have been treated free in its A&E. At the Adventist Hospital he'd have to pay, or go elsewhere. He ended up going back and forth four times between the Adventist Hospital and the Hornby Public Hospital - a journey of 15km. Away from home and in the middle of radiation treatment, it was, he says, ridiculous.

Each taxi fare cost A$15-$17. An appointment with a consultant cost A$120 and an ultrasound A$250. His health insurance didn't count in Australia. When he tried to use the travel insurance he'd taken out on the advice of the district health board, the insurer told him he had to get to a public hospital if he could.

At the Adventist Hospital at the same time was Jim (not his real name), a Marlborough pensioner who had been confronted with the same choice as Robert in October. Aged 72, Jim didn't want to wait. He took out a $2500 overdraft to cover expenses in Sydney, and went. There, he shared a floor with five other Kiwis. But he, too, suffered complications. The radiotherapy had damaged his bowel, and the oncologists referred him to a consultant. After two consultations and a pile of pills, Jim was faced with a bill for $772.79.

The receipt has been sent to the Waikato DHB, which until Christmas was co-ordinating New Zealand cancer patients' trips to Australia. Officials there say he can expect to be repaid, but there's no firm ministry policy on non-treatment related costs. The lead DHB, which this year is Auckland, makes decisions on a case-by-case basis.

In the meantime, Jim's out of pocket. He and his teenage son went through his overdraft during his eight weeks in Sydney; a far cry from the "all costs covered" information he received from Waikato.

"Seven hundred dollars is a lot of money when you try to save it out of a pension."

The Ministry of Health started sending patients to Australia for radiation treatment in November 2001, after Waikato had come up with the scheme as a way of tackling a waiting list that was getting out of control. The Aussie option would be offered to patients who were otherwise fit, able to travel and whose need was not urgent, and only when they couldn't be taken by a neighbouring cancer centre. Typically, that has meant breast and prostate cancer sufferers.

It was a heavy-handed solution. Radiotherapy takes no more than half an hour a day, five days a week, over a five to eight-week period. Moving countries for the duration guarantees a lot of empty hours away from home. Yet it was a sign that the ministry was determined that the waiting lists at the country's six cancer centres (Auckland, Hamilton, Palmerston North, Wellington, Christchurch and Dunedin) would be reined in, any way possible. Whereas a radiotherapy course typically costs $8000, the ministry allows up to another $8000 for a patient to be sent to Australia.

"It could be argued that we deserve a bit of kudos for saying we're not going to let patients be compromised because of waiting times," says Dr Jan White, deputy chair of the government's Cancer Control Taskforce and Waikato District Health Board CEO. "We felt we had an obligation to those we were supposed to treat to make sure they got some treatment."

Says Neil McKelvie, the Waikato DHB's manager of oncology and haematology, "It's another option. We're empowering patients to make a choice."

But it's an option that was never supposed to last this long. Ministry press releases at the time of the launch described the scheme as a "short-term measure".

The scheme is now entering its third year; what began as a stopgap has become common. More than 200 patients - about two a week - have gone to Australia for treatment because of delays caused by staff shortages. Most are women being treated following breast cancer surgery, but since December a fifth of the patients are men with prostate cancer.

And there's no sign of New Zealand getting on top of its waiting list problem. Auckland has only 30 of the 40 radiotherapists it needs to run at full capacity, and that 20 per cent shortfall means a new surge of patients heading for the airport.

Dr John Childs, chair of the cancer treatment working party and clinical leader for medical services at the Auckland DHB, says at least another 100 patients from Auckland and Northland will be sent to Australia before the end of June.

Childs admits the solution is far from ideal.

"One would never plan services on wanting to do this as a longer-term way of managing the numbers of people who need to be treated." But while the numbers suggest the situation's worsening, he insists things are turning around.

"I don't know that by this time next year it will be resolved, but you can say the situation will be improved."

White says the same. "It's still variable, but it appears to be getting better".

Our well-publicised lack of radiotherapists (RTs) means the linear accelerators used for radiotherapy are standing idle in New Zealand while we send patients offshore. The Government recognised the problem three years ago and acted. Money was put into training more RTs and, after industrial action, their pay and conditions were significantly improved.

Four years ago, 17 students started stage one RT training, says Karen Coleman, head of radiation therapy at the Wellington School of Medicine. This year, for the first time, there are more than 30 students in each of the three years of the degree. What's more, each graduate is bonded to one of our six cancer centres for two years. A new graduate starting work in Auckland last year would have earned $41,000.

"We're starting to win," Coleman says.

But in the intervening three years there has been little either the ministry or DHBs could do to conjure new RTs. Recruitment efforts around the world have helped, but New Zealand has been competing with Australia, Canada and Britain. The lack of RTs is worldwide, and those countries have stronger currencies and more money to lure ours away. "Everyone's just been trying to buy them off each other," says Dr Euan Walpole, chair of the Medical Oncology Group of Australia. "It's a buyer's market."

Although Australia - belatedly following our commitment to training - last month committed A$8.4 million to counter their RT shortage, international recruitment is still fiercely competitive. Some overseas hospitals are even offering to pay out our graduates' bonds.

More significantly, the number of cancer patients is increasing because of earlier detection and an ageing population. There's also a shortage of radiation oncologists - the doctors as opposed to the technicians.

While officials wrestle with our waiting lists, patients are left with the imperfect choices of delay or Australia.

Says Jim: "The amount of taxes I've paid all these years, it's bloody disgusting".

It's not just the financial burdens that vexed him and Robert. The complications which come with being away from home make a trying time that much harder.

The facilities at the Adventist Hospital are superb, both men agree. Patients from out of town stay at Jacaranda Lodge, which is on the hospital grounds among gardens and bush. The new, two-storey, 28-room lodge boasts TV rooms, laundry, a pool, and a kitchen for every seven rooms.

"We try to provide a homely environment," says manager Margaret Adams.

But New Zealanders treated in Sydney encounter difficulties that those treated here don't have to contend with. Patients pay for their own food as if they were at home. But the Adventist canteen offers only vegetarian food and the nearest supermarket is a bus ride plus a train trip away. "Just to get to the shops was $8 [Australian]," says Jim.

Then there's the stress of undergoing radiotherapy far from home and family. Although a support person can accompany the patient, it can be hard for people to get time off work and, if the patient has children, their spouse may have to stay home to care for them.

"It's different for different people," says Adams. "But for anyone away from home it's another change from their normal environment. They're already facing a lot of change and uncertainty with the uncertainty of the illness , and it's just another stress and trauma for them to deal with."

"Psychological support is very important to the way people get through this," adds Walpole. "To be left isolated and in another country is going to make it much more difficult for them."

Jim and Robert both said they struggled with boredom and missed the support systems of home.

They feel it's "Third World material" that they can't get treatment in their own country. At the very least, treatment in Sydney should be on the same basis - in terms of cost and service - as treatment here, they say.

Not that treatment here is consistent. At Auckland, Waikato, Canterbury and Wellington the Cancer Society runs lodges much like Jacaranda Lodge for people from out of town. Midcentral Health in Palmerston North puts people up in motels across the road. All patients have their travel and accommodation paid for.

As in Australia, most expect patients to pay for food except Waikato, which feeds its radiotherapy patients. And community card-holders can receive $20 a day food allowance.

Childs concedes, "There are inconsistencies depending on where you live as to what level of support you might get." But he says that's on the cancer treatment working party's agenda.

Each DHB has the right to set its own spending priorities, but he says the working party will work to ensure a consistent service "over time".

Until that time comes, cancer sufferers needing radiotherapy will face unsettling questions and choices at an already unsettling time in their lives.

Three years after Waikato started sending its cancer patients to Australia, those wanting treatment close to home are still being asked to be patient.