A carer is someone who provides unpaid care and support to a person with a disability or illness. Carers have a vital but often demanding role providing physical and emotional support to people with cancer.

This section sets out your rights as a carer in dealing with the treatment team, and making medical and financial decisions.

Talking to the treatment team

As a carer, you're part of the health care team. One of your key roles as a carer will be to help the person you care for communicate with their treatment team and make decisions about their care. The person needs to provide their written consent to allow you to do this, and this consent should be included in their medical record.

At times, you may also need to be an advocate for the patient. It is your right to take on this role if that is what they would like.

Making decisions

The person you care for may give you the power to make decisions on their behalf if they lose the capacity to make their own decisions, including decisions about finances and medical care. It's important to have a discussion ahead of time about how much treatment the person wants, what matters most to them, and whether you're able to carry our their wishes.

If the person you're caring for becomes incapable of making their own decisions and has not give you the power to make decisions on their behalf, the medical practitioner will approach the default substitute decision-maker. This may be you, if you are a spouse, partner, close family member or friend. See Making treatment decisions for more information on this and on advance care planning.

Workplace issues for carers

Many people who care for someone with cancer are also employed, and may find it difficult to balance their working role with their caring role. You may need to take time off work or stop working for some time. See Cancer, work and me for more information.

Rights of same-sex partners

The law recognises the role of same-sex partners in medical decision-making. Sometimes, medical staff may not be fully aware of this and they may seek a decision from another member of the patient’s family before approaching the person’s domestic partner.

To ensure your rights as the domestic partner are protected, you may want to speak to the treating doctor to confirm that you are the person responsible for medical decisions.

If you or your partner have any concerns about you being recognised as the decision- maker, consider asking your partner to appoint you as their  substitute decision-maker (when they still have capacity).

For more information, see our LGBTQI+ people and cancer web page.

Taking time off work

All full-time employees except casuals are entitled to receive 10 days of paid personal leave each year, which includes sick leave and carer’s leave. Part-time employees receive this entitlement on a pro rata basis. In addition, full-time and part-time employees are entitled to two days of paid compassionate or bereavement leave when an immediate family member is seriously injured or dies. Casuals are not paid for this type of leave.

All employees, including casuals, are also entitled to two days of unpaid carer’s leave per year, or more time if their employer agrees. This unpaid leave can be used when the employee has used up their paid personal leave.

For more information about carer’s leave, visit Fair Work Australia.

Flexible working arrangements

You may have the right to ask your employer to change your work arrangements to help you manage your work and caring responsibilities. The request must be made in writing. Employers can only refuse to provide these arrangements on reasonable business grounds. Examples of possible flexible working arrangements include:

• allowing you to work from home some or all of your working hours
• changing your start, finish or break times
• allowing you to vary your hours, work part-time or job share.

Discrimination

Discrimination at work because of your caring responsibilities is against the law, and your caring responsibilities cannot be held against you when you are applying for a job. You also have the right to the same opportunities for promotion, transfer or training and to the same benefits as other employees.

Making a complaint

If you feel you have been discriminated against because of your caring responsibilities, you may have the right to make a complaint to the Australian Human Rights Commission, the Fair Work Commission, or the human rights, equal opportunity or anti-discrimination agency in your state or territory.

See further information on making a complaint about discrimination in the workplace.

Support and financial assistance for carers

Being a carer can bring a sense of satisfaction, but it can also be stressful and challenging. Give yourself some time out and share your concerns with somebody neutral such as a counsellor or your GP, or call Cancer Council 13 11 20. There is a wide range of support available to help you with your caring role, including respite care. The Australian Government’s Carer Gateway provides practical information and resources for carers. Call 1800 422 737.

Caring for someone with cancer can also cause financial difficulties. Services Australia (Centrelink) supports carers with a range of payments, including the Carer Payment and Carer Allowance. For more information about these payments, call 132 717.

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