As users label WA's biggest cancer treatment centre "painful" and "chaotic", a chemotherapy-at-home business and a university researcher have suggested the government think more creatively about cancer.
This week a man reported his experience of hours spent at Sir Charles Gairdner Hospital's Cancer Centre with his terminally ill wife as "painful", saying while staff were caring and competent, they were under excessive pressure.
Another woman said though nurses at the Cancer Centre cared greatly for their patients, the centre was understaffed and in "chaos".
Among others who contacted Fairfax Media this week, one man with blood cancer, who wished to remain anonymous, said nurses were understaffed and the waiting area "fair dinkum a walkway".
"[It is] very cold at this time of year, with no attempt at patient comfort," he said.
"A trained chemotherapy nurse is an absolute major asset to a hospital and yet they are continually placed under enormous stress. At one point quite recently the hospital offered patients their specific chair and nurse. That has since been withdrawn of course as it was unworkable.
"When you get the treatment and overcome the side effects – the treatment of which is another issue which needs open discussion – they do a lifesaving job. It is the process that needs some honest discussion."
A North Metropolitan Health Service spokesman said 550 people used the Cancer Centre daily and the hospital had received just one formal complaint about the waiting area furniture in the past 12 months. After this it had provided two new reclining chairs and was looking into further alternative seating options.
In this context, nurse Lorna Rogers and pharmacist Julie Wilkes got in touch with the centre about their business, which sends a team of travelling nurses to provide treatments at home for cancer patients.
They said for the past two years they had continued approaching Sir Charles Gairdner Hospital offering it the opportunity to outsource public patients' chemotherapy where appropriate.
Negotiations were at first welcomed but they had now been told they were not needed.
Ms Rogers said her business was fully accredited, and small and flexible without large facilities and the associated overheads. This meant it would save the hospital money to use the service, already used by many of the hospital's own doctors for private patients. There was no cost to patients, as most private health funds covered the treatment fully, and they said infection rates were lower in patients treated at home.
"We've demonstrated we can save them bucketloads of money and yet for some reason they keep turning us down," Ms Rogers said.
She said her business could save many public patients much of the trauma related to chemotherapy, particularly the elderly who struggled with catching public transport, driving and parking or finding someone to drive them.
"In the olden days people had only one round of chemo. These days with all the new drugs people can have four or five rounds and it's a terrible burden on their quality of life," she said.
"We have patients who have seven treatments every month for years and they burn out. They just give up. They're too tired, their family are sick of going in and out of hospital and spending time with them ... they stop their treatment early just because they don't want to be a burden."
Ms Rogers said removing the travel component relieved patients' fatigue, helping them function better, which for some meant the ability to then work from home or continue going to work.
Her partner, pharmacist Julie Wilkes, said chemotherapy at home was a more positive process for patients often struggling simultaneously with depression, than the confusing and alienating environment of a hospital – no matter how new or well equipped.
"People don't cope well with not knowing what's going on, not having control," she said.
"[In hospital] they get quite angry and anxious. They wait a lot, without people telling them what's going on.
"At home even though you're still having the same treatment ... the surroundings are familiar."
She said patients treated at home were better educated about their treatment and their disease. Their nurse built a relationship with them and was there throughout the one to two-hour treatment to answer questions as they emerged. The nurse could also check to see that the patient was coping with things like housework and cooking and refer them to extra support services if needed.
"People often put on a really brave face in hospitals in front of health professionals but when you're in their home you get to see all that," she said.
Wanneroo resident Patricia Griffiths had chemotherapy at home last year for non-Hodgkin lymphoma.
"The Chemo@home lass came once a month and administered my infusion and truthfully it was quite like a social visit – we would sit and chat and she was a delightful person and I had no trouble," she said.
"I was comfortable and safe and Stacey and I would talk about our families and about cooking.
"I am a Country Women's Association member and one of our members goes to Charlie's for her chemo. With all the waiting, the travel, parking, remembering your change, then you've got to get up and go home and drive your car or get someone to do it for you – it must be exhausting, and incredibly stressful and distressing.
"I cannot think for the life of me ... why the government will not come to the party."
A spokesman for the North Metropolitan Health Service said Sir Charles Gairdner Hospital's Hospital in the Home Team assisted with the management of suitable chemotherapy patients with about 10 treatments per week.
"These services are provided as part of a comprehensive service for cancer patients through the Cancer Centre involving care provided by skilled, multidisciplinary care teams who are specialised in the treatment of cancer and the care of cancer patients," he said.
"SCGH has had discussions with Chemo@home service managers and are aware of their program and services.
"Costs and infection rates between services cannot be directly compared."
Health Minister Kim Hames told a Parliamentary estimates hearing in June that he had met Ms Rogers and Ms Wilkes and asked the Health Department to investigate their proposal for a program in the Peel region specifically.
"The report that came back suggested two problems," he said.
"One was that some chemotherapy in the home is already being provided by our hospitals through the Hospitals in the Home program, so we were already doing some of that ourselves. The cost structure that the proponents put forward was no better than that of what we are doing already."
He said the difficulty for Peel was that taking away treatments now being provided on contract by Peel Health Campus would take away some of the services now being provided, which would reduce the unit's workload and make it no longer viable.
"The advice I received was that that was not the best way to go for the provision of good health, and that was the decision we made. I am happy to review it again if there is any further advice or change in the future. The concept seems good to me, but I can only go on the advice that I have been given."
Meanwhile, others are questioning the way cancer treatment is doled out at the Cancer Centre, a state-of-the-art building opened in 2013.
Christopher Kueh, an expert in creative approaches to business and service provision and senior design lecturer at Edith Cowan University, said the age of organisations building excellent facilities then settling into business as usual was over.
"Governments and big organisations focus on building infrastructure, especially in health and the social sector, but the problem is they're not invested in looking at the whole system," he said.
"We put in $54 million for a cancer ward and then think that will fix things for the next hundred years.
"Similarly, businesses used to write a three to five-year business plan, then follow it. That is now inappropriate because things change so quickly."
He cited Copenhagen, Denmark, where 'innovation unit' MindLab involved citizens and businesses in creative problem-solving in the Denmark government's business, growth, education, employment and economic affairs ministries.
"Bringing it back to healthcare, we are not just looking at cutting down time people spend in the wards, but how the hospital can take care of the people who take care of the patients," Dr Kueh said.
"Plonking in infrastructure but not looking at how people function within that infrastructure ... sees people as objects functioning in the systems but doesn't take into account their emotions and their capacities."
Dr Kueh said other models based around empathy and the experiences of all users better understood and thus improved stakeholder engagement – for example, an airport's stakeholders included not just the travellers within, but also taxi companies, public transport and the online world.
"This kind of approach involves visualising what the service could be like and finding 'touch points', where different stakeholders interact," he said.
"In the emergency room, for example, people see nurses behind a desk but they look like they aren't doing anything. This makes people frustrated. They don't understand all that is going on behind the scenes for those nurses."
Dr Kueh said it was never too late for the government to invest in an approach that involved the perspectives of carers, families, medical teams and even peripheral participants such as taxi drivers or parking attendants.
Approaches had to be "bottom-up" as opposed to "top-down" and urged the government to start holding "co-creation" workshops involving all stakeholders.
"If you spend the money in the right place you can build a more sustainable system," he said.
