We live in the era, so we’re constantly told, of evidence based health care and evidence based policy. It’s not a paradigm that’s known for being sympathetic to narrative and anecdote. And yet there is nothing like the power of an individual’s story for generating attention and action.
It’s telling that a new report from the NSW Cancer Council called Roadblocks to Radiotherapy is using the power of patients’ stories to raise broader issues of concern about the inequitable access to radiotherapy that have been highlighted in literally dozens of reports and inquiries over the years. It will be interesting to see whether this report has more impact than all those that have gone before.
Radiation oncologist Professor Graeme Morgan has been a tireless advocate over many years for improved access to radiotherapy. Here is his analysis of the report – and a call to action:
“On Friday, NSW Stateline documented the personal traumas of cancer patients attempting to access grossly inadequate radiotherapy services provided by NSW Health.
In NSW, only 36% of cancer patients receive radiotherapy – well short of the benchmark of 52%. In June this year, the NSW Auditor-General criticised the inability of NSW Health to provide enough treatment machines and recommended it develop a 10 year Strategic Plan for Radiotherapy.
Although NSW Health now has a draft Plan, it fails to substantively tackle the lack of access and equity for treatment.
But the rest of Australia is little better with the national radiotherapy treatment rate at 38%, largely unchanged since 1999 – varying from 43% in Victoria to 31% in Western Australia.
How has this been allowed to happen? Well, it’s not due to a lack of reports or inquiries – in the 10 years from 1986 to 1996 over 50 reports had been published – an average of 5 per year.
In 2002, former Senator Peter Baume in “A Vision for Radiotherapy In Australia” recommended the formation of a central body – Radiation Oncology Australia – for planning, quality and funding, and to overcome the fragmentation between different levels of government – sound familiar?
But after seven years, little has been achieved – still only 38% are being treated, but the number missing out has risen from 7,400 in 1999 to 16,200 in 2008, and as a result 2,500 premature deaths each year due to lack of radiotherapy.
In the last Federal budget, funding was announced for ten regional cancer centres. But this will be to no avail if money is not allocated through a central body for radiotherapy – as occurs with chemotherapy through the PBS.
During the election campaign, Rudd committed to taking over health care from the states if they could not show they were able to improve service delivery within 12 – 18 months. In the case of radiotherapy services, the States have had years to address the problem.
It’s time Rudd took over so that all cancer patients in Australia have equitable access to this essential cancer treatment.”
And now for an anecdote from Croakey:
Last year, when researching an article on cancer care in the bush for Australian Rural Doctor magazine, I heard many distressing stories about what the lack of radiotherapy services in the NT means for cancer patients there, especially for those from remote areas. I tried to imagine what it must be like for Aboriginal people from remote areas having to travel thousands of kilometres to Brisbane or Adelaide when they were unwell.
It became clear that the trauma of a cancer diagnosis, bad enough in the best of circumstances, is magnified terribly in remote communities. It inevitably means a long, arduous journey into a foreign world far from home and kin. One doctor told me of an Aboriginal man with a young family, who had to spend several months living in a hostel in Adelaide while having radiotherapy without the support of a familiar face. It was his first trip outside the NT. He was not the only such patient the doctor had seen develop serious depression.
Others chose to go without treatment. The doctor told me of one such patient who had to be sent back to Darwin, to die without any family around her.
So there are plenty more powerful stories out there, many beyond NSW’s borders.