A useful new booklet, called Understanding Your Rights, has recently been released by the Cancer Council NSW. It sets out what patients can reasonably expect, both from health services and themselves as they undertake the cancer journey.

Many of the issues raised by the booklet could be more generally applied, and may also be useful for anyone undergoing diagnosis or treatment for other conditions as well.

The booklet focuses very much on the individual patient’s rights, whether in the health care system or at work or when negotiating superannuation or insurance.

It would be interesting to consider similar issues from another tack – do all Australians have the same rights of access to treatment, for example? Or the same rights to healthy environments?

Clearly not, if you look at the evidence about the differential health status and treatment outcomes for different groups in the population. Some of us, it seems, have more rights than others.

Meanwhile, Sally Crossing, Chair of Cancer Voices NSW, has kindly provided this enthusiastic review of the booklet, from the perspective of a patient and consumer advocate.

She writes:

“A booklet has arrived, courtesy of the Cancer Council NSW and its supporters, which gives people affected by cancer some most essential keys for coping with their strange new world.

The title “Understanding your rights” doesn’t really do its contents justice.  Knowing your rights and responsibilities underpin successful navigation of the rocky cancer “journey”, but this booklet offers a great deal more practical stuff.

I was delighted to be asked to contribute to its development, but am even happier now I see the end result.  It’s an absolutely essential part of anyone’s” cancer kit” and is a main component of the Cancer Council’s new Support and Information Kit, as it should be.

A cancer diagnosis is not just medical business, although handling that will be the first challenge we meet in this strange and scary new world.  This booklet gives information about what to expect from the treatment team, how to decide on a specialist, making treatment decisions, accessing medical records, making complaints or giving feedback, coping with financial problems, insurance and superannuation, work issues; end of life preparations and help for carers.  Finding a consumer advocacy group like Cancer Voices NSW is in there too.

A cancer diagnosis and its treatment could change your life without any warning at all, and in so many unexpected ways.  And this remains the case if the journey continues – I’m still learning how to handle it after 14 years living with the disease.

My only regret is that there is no mention of a subject that many of us with metastatic cancer seriously consider – supported by 87% of people in NSW, according to latest Newspolls – how to reassure yourself of being able to die with dignity and control.

This booklet was no doubt hamstrung by our current bizarre legislation which almost prohibits discussion, let alone information and assistance.  However, the Dying with Dignity website – which has the best Advance Care Directive – is included. Thankyou!”

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