Nov 23, 2009

Are patients the best advocates for improved cancer services?

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.

Melissa Sweet — Health journalist and <a href=Croakey co-ordinator" class="author__portrait">

Melissa Sweet

Health journalist and Croakey co-ordinator

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.


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5 thoughts on “Are patients the best advocates for improved cancer services?

  1. M Barton

    Radiotherapy is one of the most cost effective forms of cancer treatment. We have previously calculated that radiotherapy costs less per life year gained than common medical interventions such as treating high blood pressure. For non-curative treatments it is more cost-effective to use radiotherapy for problems such as bone pain than to use drugs such as morphine. So a rational use of health resources suggests a modest investment in radiotherapy.
    For the price of a Pacific Solution we could easily close the gap between actual and optimal radiotherapy services.

  2. Darren

    Anyone who can benefit from medical treatment will seek access and will argue forcefully their rights to such access. Anyone denied access to treatment on whatever grounds such as lack of knowledge, time, distance, resources can claim disadvantage or discrimination. The economic, social and other losses from premature death can be calculated and the numbers can be impressive. However there needs to be a balance between cause and effect and at present, with the aging of the baby boomers, we are going to see greater demands for access to services than our ability to provide them. The question that then needs to be raised is are we utilising our present resources to best effect? If we need to make choices regarding access to services then on what basis should we do so?

    At present many resource allocation decisions, macro and micro, are made for idiosyncratic reasons. The extent to which evidence informs those decisions is not always apparent. So while the NSW Cancer Council is acting in its capacity as a lobbyist to what extent should their claims of disadvantage in access be offset by the choices individuals have made, in the light of evidence, to continue in their lifestyle. Excesses of sunlight, calories, speed, consumption of drugs (licit and illicit) all carry risks. As individuals we seem to be able to ignore our personal responsibility in contributing to our health status by claiming that if diagnosed and if able to benefit (regardless of the magnitude of benefit) then we should have unlimited access to health care regardless of the consequences to others. The Tragedy of the Commons analogy suggests “selfish” consumption will always exceed the ability of sustainable and equitable access. By selfish I mean the interests of the individual being placed higher than the collective interests of the community or society.

    If we cannot dramatically alter the amount of resources available then we need to ensure that the manner in which we allocate them is optimal. Not all people who seek access to radiotherapy will benefit equally. The question we need to ask in parallel to whether we should increase resources to avoid the current unmet demand for radiotherapy services, is at what point does premature death become mature? If we want to keep on extending existence then we need to consider the resources required for that.

  3. EnergyPedant

    Is the issue lack of hardware or lack of staff? If its lack of hardware then it really is just a case of throwing money at it.

    Or is radiotherapy not seen as cost-effective compared to other options?

    And now for my anecdote:

    My mum had breast cancer. The least nasty form as I understand it. Biopsy or two to remove the very small lump(s). Couple of weeks of radiotherapy in a regional center. I know it was fairly tight to get timeslots to get microwaved (not sure if having private insurance made a difference, probably did).

  4. ash1995

    Wouldnt radiation thats so accurate that you only need 1 treatment be part of the answer?
    Cyberknife is used all over the world and generally takes one 2 – 3 hr session. If i lived remotely and had this option I would head into my nearest Cyberknife centre and have it done. No side effects so back to work/normal life the next week. Available worldwide for over a decade but most people here have never heard of it. India has 2 hospitals using it, who is 3rd world? Learn more and support getting Cyberknife to Australia:

  5. Tweets that mention Are patients the best advocates for improved cancer services? – Croakey --

    […] This post was mentioned on Twitter by Cancer Council NSW, Melissa Sweet. Melissa Sweet said: When cancer patients tell their stories about the difficulties of getting radiotherapy, will politicians listen? […]

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