Why we need to recognise the rights of our invisible cancer carers

Wednesday 27 September, 2023

Most of us are likely to know someone who has been diagnosed with cancer. Which means that most of us whether we’re aware of it or not know someone who has been, or will be, a carer.  

More than 90 per cent of people living with cancer in Australia have at least one informal or unpaid carer in addition to formal or paid care services. These carers, who are usually a family member or friend, provide vital practical, medical, emotional, legal and financial support without compensation, and are mostly females. 

By 2040, the number of new cancer cases globally is expected to rise to 30.2 million and the number of cancer-related deaths to 16.3 million.  

Research shows that three in five Australians will be diagnosed with cancer at some point in life, meaning most people are likely to either need care, or will provide it. Often in Australia, people caring for others with health conditions provide support and care for up to 40 hours a week, the equivalent of a full-time job. 

Unpaid care remains a mostly invisible job, despite being fundamental to healthcare in Australia, with all forms of unpaid care representing a value of almost $78 billion.

The experience in other countries is similar, with women being the majority of unpaid carers worldwide and spending many hours a week looking after people affected by cancer. This pattern is reflected in low-, middle- and high-income countries. And in countries where health systems are less equipped to care for people with cancer, unpaid carers take on an even bigger burden – in some cases about 120 hours a week

Cancer care can be urgent, intense and unpredictable and may be required over days, months or years given the complex and chronic nature of the disease. Often care is still required many years after cancer diagnosis given cancer treatments can impact a person’s quality of life long after treatment ends. 

And while most unpaid carers say they wouldn’t hesitate to step in and provide this care, they also report high levels of anxiety, distress and burden – often higher than the person receiving treatment for cancer.  This can be due to many reasons, including the often-demanding nature of caring for someone who is ill, being unable to work, having to work fewer hours, or having to take a lower paid job to meet their caring commitments.  

This stress can also be compounded by ‘financial toxicity’, which is when high treatment costs and changing financial circumstances result in physical and psychological harm, affecting decisions about treatment and care.  

Greater recognition of the role of carers, whose contribution to our community and healthcare system is often hidden from view, is a vital first step towards valuing the work of unpaid carers. 

Along with recognition though, we need to change the economic and practical circumstances under which people provide care. This is particularly relevant for women, as the majority of unpaid carers. 

One example is greater access to paid and unpaid care leave – a law that’s worked in other countries like Mexico, for example. In 2019, Mexico introduced a law that allows one parent to support a child sick with cancer by taking leave of up to 28 days, which can be taken multiple times and extended to 364 days within a three-year period, during which time they receive just over half of their salary and access to social security benefits. This law recognises the role of carers, but also the often time intense and unpredictable nature of treatment and care. 

Australia is one of the few countries in the world with a Carer’s Recognition Act. However, there are still significant challenges facing carers, and so the Australian Government is currently reviewing the Act, with a view to changing the law to improve recognition and awareness of unpaid carers.  

The McCabe Centre for Law and Cancer, Cancer Council Victoria and Cancer Council Australia have made a submission to the inquiry, highlighting the various tasks unpaid carers undertake, the multidimensional aspects of cancer care and impact on carers, the importance of an inclusive and expansive definition of ‘carer’; the importance of good data about carers and their needs to better inform laws and policies that impact carers; and affirming and honouring the human rights of carers.  

We also recommended developing a new national strategy for carers, and the need to improve support for community awareness and education about the role of unpaid carers.  

The McCabe Centre and Cancer Council also made a submission to an Australian Productivity Commission inquiry in support of adding an entitlement for extended unpaid leave for unpaid carers to the Australian National Employment Standards.  

We also recommended introducing review processes for employees to challenge an employer’s refusal of extended unpaid leave, separate rather than combined entitlements to paid and unpaid personal sick leave and carers leave, strengthening anti-discrimination and equal opportunity protections, and improving other supports for unpaid carers, especially those outside of formal employment.  

In Australia current political, economic and social structures still value economic contributions over social contributions. Change is achievable and necessary: further recognition in law of the work of unpaid carers can shine a light on the myriad ways they contribute. Introducing entitlements such as greater flexibility and allowances in paid and unpaid leave is both a way to recognise them and can support carers in balancing work and care obligations.   

It is important for all countries to make good on their commitments to human rights, including those of people providing such necessary and important care. We hope that Australia’s experiences and ongoing review of carers laws will provide useful learnings for many other countries grappling with these issues. 

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