Inside Story: Cancer patients' waiting game

FAMILY TIME: Margaret Richardson and grandson Arlo Jesty get together whenever Margaret feels well enough while undergoing cancer treatment. PHOTO/DAWN PICKEN

The recent case of a Greerton grandmother who was told she might face a three-month delay for cancer treatment highlights what patient advocates say is a national problem -- variations in how long people wait to battle one of New Zealand's leading killers. Bay of Plenty Times Weekend reporter Dawn Picken researched what delays mean for cancer patients and for all of us who rely on the public health system

PERSISTENCE PAYS OFF
Arlo is crawling to the cat door at his grandmother's Greerton home. "Go 'boo' for Nana. Can you do big smiles?"

Margaret Richardson coos at her 10-month-old grandson from the opposite side of the pet door. She flashes a grin as she lifts him on to her lap. She says she won't be seeing Arlo as much as she used to because she has started weekly chemotherapy.

The drugs zap her energy. "And everything tastes like metal." The 61-year-old uncovers plastic tubing and tape forming a PICC line just above her left elbow. "It's so they can take blood out and put the chemo in," says Richardson. Daughter Megan Jesty steps in to rewrap the gauze after adjusting the tubes. "It's fun and games showering," says Richardson. "But my husband went out and got a big plastic arm cover."

Discomfort aside, Richardson is grateful for treatment. She said she was initially told she may have to wait up to three months to see an oncologist at Tauranga Hospital.

District Health Board officials said that was due to an unexpectedly high number of referrals over summer coupled with staffing issues. Richardson was diagnosed with Stage 3 breast cancer (cancer which has extended beyond the tumour and may have invaded nearby lymph nodes and muscles, but has not spread to distant organs) 10 years ago.

Within a week of diagnosis, she had surgery, followed by chemotherapy and radiation.

TREATMENT: Margaret Richardson had chemotherapy every Tuesday this month at the Bay of Plenty District Health Board's cancer centre in Tauranga. PHOTOS/GEORGE NOVAK

This January, she struggled to breathe. A CT scan revealed cancer in her right lung, left ribcage, right chest wall and spine. Unlike her first malignancy, this time Richardson was told she'd have to wait for therapy.

Initially, she heard one week, then six to seven weeks, then eight to 12.

Richardson says she rang her former surgeon's administrator, who said she would do what she could. Meanwhile, the admin suggested Richardson check herself into hospital because she sounded breathless over the phone. She went in that day.

"They drained two litres of fluid off my lungs."

Jesty says not only was her mum's cancer recurrence upsetting, so was the idea of postponed medical care.

"Had she been seen as promptly as she was the first time around, maybe chemo would've started sooner. Maybe we'd have just that little bit more of a chance."

Richardson saw her oncologist on March 16, the same day the Bay of Plenty Times ran her story, and about seven weeks after she learned cancer had returned.

"She said that I have got incurable terminal secondary breast cancer based in my lungs but also in other parts of my body."

Richardson said there's a 25 per cent chance she'll die in 12 months, but median survival time is two years.

"I could have 10 years, I don't know. She [her oncologist] was so very good and said that the reason they do the treatment is because it can extend the term of your life . . . I might not have a hell of a lot of life left, but [the oncologist said], 'I want to be able to provide you with more quality of life'."

FAMILY TIME: Margaret Richardson and grandson Arlo Jesty get together whenever Margaret feels well enough while undergoing cancer treatment. PHOTO/DAWN PICKEN

Richardson had her first chemotherapy treatment for her recurrence on April 4.

COMMON THEME
Other patients with advanced cancers say Richardson's story is not unique. Carolyn (who didn't want her last name used) was also diagnosed with breast cancer a decade ago.

Like Richardson, she had surgery and chemotherapy without delay. Then, after having back pain in January last year, she learned the cancer had spread to her bones, lungs and abdomen.

The 57-year-old said she waited weeks for a letter from the BOP District Health Board confirming a CT scan. It never came.

"They hadn't put me on the waiting list for the next CT or infusion so I didn't have appointments for either. They said the referral had been closed.

"Some stern words were spoken; I rang back and they said they were awfully sorry I had been dropped off the system for some reason. Because they knew I was upset they got me in to see a registrar."

Carolyn belongs to a Tauranga advanced breast cancer support group and says other patients tell similar stories about accessing specialist care.

Several times during our phone conversation, Carolyn emphasises she's not angry with the public system. She says she knows they're "stretched for resources" and praises staff at oncology reception, who often reschedule appointments so she can keep working.

Carolyn's main concern is seeing an oncologist rather than rotating through registrars.

"Instead of talking to you, they're [registrars] looking at their screen, desperately trying to get as much information as they can in that short time. They've only got 10 minutes."

Carolyn rang me two days after our chat to report she had just seen an oncologist for the first time in months. "It's only the second time I've seen him. I felt so much better afterward."

Another Stage 4 patient says she, too, would like more regular communication with her oncologist. Joanne Rye-McGregor, a friend of mine whose story the Bay of Plenty Times Weekend featured last year, learned nearly two years ago her breast cancer had spread, appearing as a 16- or 17-centimetre tumour atop her liver.

She said she waited seven-and-a-half weeks to see a specialist after abdominal pain brought her to her GP.

"I urgently needed to see him, because things weren't good."

Then, after learning the new tumour was inoperable and incurable, she said she waited a further five-and-a-half weeks to see her oncologist, succeeding only because her GP intervened.

The 54-year-old had scans last December and this February showing the cancer has metastasised - to her shoulder and spine.

Rye-McGregor has started oral chemotherapy.

SYSTEM-WIDE ISSUE?
New Zealand Cancer Society medical director Dr Christopher Jackson told the Bay of Plenty Times Weekend the health system lacks clear time targets for treating advanced cancer.

The medical oncologist, who holds a national role in researching and managing colorectal cancer, says 60 Kiwis each day - 22,000 each year - are diagnosed with cancer. The disease accounts for nearly one-third of deaths in New Zealand.

"The workload for cancer services is growing every year and will do so for the next 25 years. It's a real problem we have to get our heads around."

The Ministry of Health Faster Cancer Treatment Targets state 85 per cent of people with a high suspicion of cancer who need to be seen within two weeks should receive their first treatment within 62 days (nearly nine weeks).

The Bay of Plenty health district quarter two figures for 2016/17 show 84 per cent of locals were seen within targeted time frames. Jackson says the Faster Cancer Treatment Target is inadequate.

"It doesn't look at the whole picture and it doesn't look at people with advanced cancers -- it only gives a small part of the picture of waiting times for patients. While that headline looks good -- 84 per cent -- that only applies to a small proportion of cancer patients."

Jackson says policy makers don't understand "bottlenecks" in the health system for oncology care.

"We feel the plight of our patients on waiting lists. It's not doctors twiddling their thumbs. It's purely a capacity issue. The Government doesn't know what capacity or demand is. The response is reactive and ad hoc rather than process-based and systematically implemented."

Jackson says although there are workforce shortages in medical and radiation oncology, this varies by region, and simply hiring more doctors won't fix the problem.

The Ministry of Health national clinical lead for cancer, Dr Suzanne Beuker, said the number of radiation oncologists nationally had increased by 67 per cent from 39 in 2008 to 65 in 2016.

Numbers for medical oncologists were not available, though the Bay of Plenty District Health Board's business leader of medical services, Neil McKelvie, said the district would have 3.4 full-time equivalent senior medical officers in oncology services next month.

He told the Bay of Plenty Times in March that increased staffing meant the oncology department could see every new referral within two to four weeks, and it averaged 35 to 40 new patient referrals each month.

McKelvie this month said oncology patients with a cancer recurrence or advanced stage cancer waited two to eight weeks to see a specialist, dependent on diagnosis.

"The average waiting time in February was 14 days."

He said patients started chemotherapy and radiation treatment within four weeks (Ministry of Health standard) unless there was a clinical or personal reason to delay.

McKelvie said oncologists were not overwhelmed with patients' phone calls and emails "but they are doing additional hours to try to bring things back into line".

Beuker said people with later-stage cancers were included in the Faster Cancer Treatment targets if they' were referred by a GP.

She said the 31-day Faster Cancer Treatment indicator, which states patients with a confirmed cancer diagnosis receive their first treatment (or other management) within 31 days of a decision to treat, "provides a target for all publically treated cancers, including people presenting with later-stage cancer".

She said DHBs also continued reporting on a previous target introduced in July 2012 that said all patients ready for treatment should wait less than four weeks for radiotherapy or chemotherapy.

"The shorter waits for cancer treatment health target was consistently achieved for all patients in all DHBs and from October 1, 2014 was replaced by the new 62-day cancer target."

McKelvie said the Bay of Plenty DHB not only reported all Faster Cancer Treatment times via the Ministry of Health, it also reported each quarter on waiting times for first specialist appointments (FSAs).

New Zealand Breast Cancer Foundation chief executive Evangelia Henderson says the health system must do a better job after patients have finished treatment for a primary breast cancer.

For example, she says, new breast cancer patients get a breast nurse to guide them through treatment. "However in metastatic stage, there isn't one. There's a gap and it's an issue; the surveillance and follow-up is lacking."

What's more, she says, picking up micro-metastases early can mean a cure. "It's really important to try and have metastases diagnosed as soon as possible."

Henderson says that unlike early breast cancer diagnosis, the country lacks clear protocols for treating advanced-stage cancers.

"People are left to their own medical team to take them through their own route, but there is no specific pathway."

Henderson says patients need to advocate for timely treatments, and should also be told which options are available.

HOPE AND TREATMENT
It's midday on a Tuesday when we meet Margaret Richardson again, this time in the chemotherapy room at Tauranga Hospital's Cancer Centre. She settles into chair. A nurse checks vital signs before connecting a bag of Paclitaxel to an IV.

She's willing to endure the nausea, fatigue and possible hair loss chemo will inflict. Her daughter's wedding is next year and she wants to see her grandson off to school in four years.

She can't work and says money is tight. Yet she remains grateful for friends, family and medical staff.

Jackson says health officials must find more effective ways to manage patients like Richardson along the entire cancer spectrum, not just during initial stages. And he says throwing more money at cancer won't help until we know how best to spend it.

"People waiting for treatment are naturally frightened. We need to understand demand to plan to meet people's needs. If we don't, we're failing them."

More online:

Cancer Society waikato-bop.cancernz.org.nz/en/about-us/contact-us

Tauranga Breast Cancer Support Services breastcancerbop.org.nz

Sweet Louise sweetlouise.co.nz