Cancer services were moved to Fiona Stanley and Sir Charles Gairdner Hospitals.
“I want you to imagine that you have received a result from your bowel cancer screening … part of the national bowel cancer screening process. You are anxious. At this stage you are thinking, ‘my God, I might have cancer’. You are referred to the colonoscopy clinic at Fiona Stanley Hospital, expecting to receive a confirmation or a negative result as a matter of some urgency so you can begin your treatment. Imagine, Mr Speaker, being faced with a four-month, or even longer, wait to have some diagnostic testing to confirm your condition.”
– WA opposition health spokesman Roger Cook
Alan Smith faces a nervous wait for the results of his upcoming procedure.
Perth resident Alan Smith remembers vividly the few weeks in 2009 that passed between his positive result from a bowel cancer screening and the colonoscopy that confirmed it.
“I was petrified,” he said. He has to pause to collect himself before he is able to continue speaking.
“I didn’t know what to expect. I was scared, emotional. The uncertainty – not knowing, you hear all these stories about cancer … it is extremely traumatic.”
He and his wife kept the news from their son, then 12, and their older daughter during that period of uncertainty.
“We tried to forget about it. We didn’t want to think about it. But it was always there in the back of my mind,” he said.
Four surgeries, each followed by months of healing and complications, followed, swallowing up years of his life.
But Mr Smith’s memories of the initial uncertainty are particularly raw at the moment, because he recently, once more, found blood appearing in his stool.
He is booked in for another colonoscopy on September 24.
The first time, after seeing his GP to get the screening result, Mr Smith was able to get his colonoscopy within a few weeks, an optimal timeframe. His surgery followed just as quickly.
“The body goes through a lot, but so does the mind,” he said.
“The people who have to wait, I really feel for them.”
It is stories such as Mr Smith’s that lend perspective to Tuesday’s news of a leaked state government report on the state of the cancer care system after services moved from Royal Perth and Fremantle hospitals to Fiona Stanley and Sir Charles Gairdner.
Among its revelations of “fragmentation of care, delays in treatment and compromised patient safety” are news of blowouts in waiting times for colonoscopies for people whose have screened positive for bowel cancer, Australia’s second-biggest cancer killer.
Patients are waiting up four months for diagnosis – instead of the recommended 30 days – and Premier Colin Barnett has called worried reactions to this news “hysteria”.
Bowel cancer kills nearly 4000 Australians each year and the incidence is increasing.
One in 12 people will develop it in their lifetime, and as things stand, their five-year survival rate lags well behind that of people with breast cancer, prostate cancer and melanoma.
Screening can save lives, with 90 per cent of people diagnosed early able to be treated successfully. But early diagnosis is already a problem, with fewer than 40 per cent of patients falling into that category.
That was before waiting times for diagnoses quadrupled.
Bowel Cancer Australia chief executive Julien Wiggins said those screening positive need a colonoscopy within four weeks and then surgery within two, and with survival rates lagging behind those of other common cancers, Australia urgently needed to lift its game.
The report said the “very worrying” blowout has emerged in the past six months.
It stated the current backlog meant 10,000 people were waiting for bowel cancer diagnoses and this has resulted in “significant and unsafe delays in treatment”.
Unsurprisingly, this has led to “anecdotal reports of a sharp increase in presentations to cancer counselling services in recent months”.
Going through the system was no picnic to start with, Mr Smith remembers as he steels himself to potentially go through it again.
“For 12 months I had trouble saying I had cancer. I would refer to it as a tumour but I couldn’t bring myself to say that it was cancer,” he said.
“It is hardest on the family.
“They get to see, number one, the fear in me.
“Like me, they don’t know what’s happening to me, whether it’s going to work out well or not, they don’t know. And there is fear that they may get it themselves.”
His surgeries involved the tumour removal, a colostomy then its reversal, then an ileostomy and its reversal. Numerous complications – at times nearly fatal – and protracted and painful healing times followed.
“If it wasn’t for the support of my family, honestly I think I would have ended it long ago,” he said.
“But I had a very, very supportive wife and a very supportive family. The people who have to do it on their own, I don’t know how they do it.”
The leaked report said the abolition of specialist cancer nurses in the move to Fiona Stanley Hospital has meant the colorectal clinics there are experiencing “extreme stress”, including patients being appointed to the wrong clinics, patients being “totally lost from the system” and triage problems.
This clinic is responsible for people who, like Mr Smith, must have trouble coping with their cancer – but on Wednesday, Premier Colin Barnett told media that the reactions to this report showed “a great exaggeration and sort of almost a hysteria about complaining about our health system.”
He said he was getting “a little tired of this continual criticism and knocking” and people were focusing on some of the report’s worst comments rather than taking a balanced view – though it is hard to find anything other than “worst comments” when reading the report.
Mr Barnett acknowledged there were issues around treatments but suggested the authors of the report had perhaps a “bit of a chip” on their shoulders.
The taskforce of 20 authors he referred to was chosen by the Health Department’s acting director general in April and includes senior staff from FSH, Charles Gairdner and RPH, including surgeons and the heads of oncology, radiology, urology and general surgery, the chief executive of Cancer Council WA and the directors of the WA Cancer and Palliative Care Network.
In parliament on Tuesday and Wednesday, opposition leader Mark McGowan and health spokesman Roger Cook grilled WA health minister Kim Hames over the report after it went public.
“If members read it, it will make their skin crawl,” Mr McGowan said.
“For those of us who have ever had relatives who have passed away as a consequence of cancer, for those of us who have family members with cancer, and for those of us who are suffering from cancer, this is a shocking report into the services available.
“Everyone knows – I think most people have been touched by it – that cancer is a shocking, debilitating thing to happen to one’s family. It creates family crises and it hurts people beyond imagining, so it is an indictment on the government for this report to reveal that cancer services in Western Australia are in such a shocking condition.”
Mr McGowan said this was not the first time a report had emerged along these lines, citing government reports, mainly into issues involving Fiona Stanley, in 2010, 2012, 2014 and earlier in 2015.
“Now we have this report on cancer care,” he said.
“These are not teething issues or problems; this is warning bell after warning bell cascading upwards to become a screaming klaxon.”
Dr Hames strenuously defended both the handling of the report and of the original decision-making process to close services at RPH and move them to FSH and SCGH.
“I am not an expert on where cancer services should be spread around this state,” he said.
“I have hundreds of people working for me, as the minister, on the clinical design, the spread of services and where they should be in the hospitals.
“In making the final decision, I rely on that advice and those recommendations… that in order to provide the best possible care for the cancer patients to whom we are referring, the services should be based at SCGH in the major cancer centre, and at the new FSH.
“That was the recommendation put before me by three directors-general, not just one. Three consecutive DGs made that recommendation, and I accepted that recommendation and did it.
“Subsequent to that, after getting letters from patients about delays in treatment and about notes not being transferred across, and because of my concern about the standard of care that was being provided, and whether we should get services back at Royal Perth, in forming the view that that might be the best decision, I stopped the transfer of a linear accelerator unit – which was supposed to go from Royal Perth to Fiona Stanley so that they would have three over there – while I waited for this report.”
Dr Hames knew colonoscopies were an issue, he said, one he had been trying to deal with for a long time.
There had been a “huge increase in the demand”, caused by the national screening program identifying very large numbers of people who needed further testing, “at a time of change”, and there was a lack of gastroenterologists to do the work. In fact, he said, he had just increased the number of gastroenterologists at Osborne Park Hospital to try to get more people through that wait list.
He defended accusations that he did not care about patients or the report.
“I bet there is virtually nobody in this parliament who has not had a family member with cancer, and members know about my direct association,” he said.
“Everybody is significantly concerned about cancer services in this state. When I was given information that suggested that the standard of services since that transfer were not adequate, what did I do? I interrogated the decision.
“I will take the report of the task force very seriously.
“It is very revealing about some of the issues that have occurred with the transfer of oncology services from RPH to FSH. In fact, it reflected some of the issues that had been raised with me both by doctors and in letters with complaints about the quality of service.”
The Minister said he believed the acting director-general at the time got the report in July and then discussed it with the chairman of the taskforce authors, RPH and FSH surgeon Christobel Saunders.
He said Dr Saunders had provided the clinicians on the task force with a copy of the final report to get their feedback on it and she was meeting on Friday with the department director general.
“Already, they are working through those issues of costings, staffing and implementation of the recommendations that have been made,” he said.
“I feel confident that we will be able to address most, if not all, of those concerns over the next few weeks.
“I am very proud of what we on this side have been able to do in government with the provision of health services. We have gone from having one of the worst health systems in Australia to one of the best systems in Australia. It has all happened under our government.
“It has all happened under my leadership, if the Labor Party wants me to take responsibility, but I give a huge amount of credit to the staff and the support I have had within the health system and the amazing job they have done in providing a system that is one of the best in Australia, if not the best in the world.”
WAtoday has run several reports in recent months featuring patient and families’ accounts of problems in the cancer care system in WA.
One patient’s husband spoke of “painful” and “horrendous” experiences at Sir Charles Gairdner Hospital’s state-of-the-art Cancer Centre, describing it as well equipped but “hopelessly understaffed”.
Another breast cancer patient described a “cancer section in chaos” and nurses in tears at SCGH, while another got in touch to say the Cancer Centre was “understaffed“.