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Rights of carers

A carer is someone who provides unpaid care and support to a person who needs this help because of an illness or disability. Carers have a vital but often demanding role providing physical and emotional support to people with cancer. Knowing your rights as a carer can help you deal with the treatment team, and make 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 is to help the person you care for communicate with their treatment team and make decisions about their care. The person needs to give 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 speak on behalf of the patient. It is your right to take on this advocacy role if that is what the person you care for would like.

Getting ready for medical appointments
  • Talk with the person you care for and make a list of questions to ask the doctor.
  • Call the receptionist to check what you have to take, such as test results or scans.
  • Prepare a list of medicines that the person is taking. Include the dose and any side effects.
  • Record any recent changes in the person’s condition or symptoms so you can tell the doctor about them.

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. This can include decisions about finances and medical care. It is important that you have a discussion ahead of time about how much treatment the person wants for the cancer, what matters most to them when making treatment decisions, and whether you’re able to carry out their wishes.

If the person you are caring for becomes incapable of making their own decisions and has not given you the power to make decisions on their behalf, the medical practitioner will approach the default substitute decision-maker.

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 default substitute decisionmaker for medical decisions.

You or your partner may be concerned about you being recognised as the decision maker. If so, consider asking your partner (when they still have
capacity) to appoint you as their enduring guardian, enduring power of attorney or medical treatment decision maker.

Many people who care for someone with cancer are also employed. Sometimes people find it difficult to balance the needs of both roles. You may need to take time off work or to stop working for some time.

Taking time off work

All full-time employees except casuals are entitled to a minimum of 10 days of paid personal leave each year. This can be used if you are unwell or if you are providing care to a member of your immediate family or household. Part-time employees receive this entitlement on a pro rata basis. Employees can take as much personal leave as they have accumulated, though your employer can ask you for basic facts about why you need time off.

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 ill or injured, or dies. Casual employees are also entitled to this leave, but it is unpaid.

If you’ve used all of your paid personal leave, you are entitled to two days of unpaid carer’s leave each year. Both casual and permanent employees are entitled to this leave, which must be used to provide care or support to a member of your immediate family or household.

If you need to take more time off work, you may be able to use annual leave or long service leave, or apply for leave without pay (if your employer allows this). For more information about leave entitlements, visit Fair Work Australia.

Special arrangements

You have the right to ask your employer to make flexible working arrangements to help you manage your work and caring responsibilities. They can only refuse to provide these arrangements if the changes would cause serious unjustifiable hardship to their business or, in some cases, on reasonable business grounds.

Some examples of flexible working arrangements are:

  • allowing you to work from home some or all days
  • changing your start, finish or break times
  • allowing you to vary your hours, work part-time or job share
  • varying the amount of unpaid or paid leave you can take and when you can take it.


Discrimination at work because of your caring responsibilities is against the law. 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 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.

Download our booklet ‘Cancer, Work & You’

Caring for someone with cancer can cause financial difficulties. Services Australia (Centrelink) supports carers with a range of payments. These include the Carer Payment and Carer Allowance. For more information about financial assistance for carers, and to check eligibility requirements, visit Centrelink or call 132 717.

Being a carer can bring a sense of satisfaction, but it can also be challenging and stressful. It is important to look after your own physical and emotional wellbeing. Give yourself some time out and share your concerns with somebody neutral such as a counsellor or your doctor, or try calling Cancer Council 13 11 20. There is a wide range of support available to help you with your caring role.

Local support services – The Australian Government’s Carer Gateway provides practical information and resources for carers, and a service finder to help carers connect to local support services, including respite care. Visit Carer Gateway or call 1800 422 737.

Respite options – Respite care is available to give you a break. Contact a Commonwealth Respite and Carelink Centre for information on local carer support services and respite options that may suit you. Call 1800 052 222 during business hours or call 1800 059 059 for emergency respite support outside business hours.

Cancer Council telephone support group – Cancer Council offers a national telephone support group for carers. It runs twice a month. For more information about how you can speak with other people in a carer role, call 13 11 20.

Carers Associations – Carers Australia works with the Carers Associations in each state and territory to provide information and services to carers. They also run local support groups and offer short term counselling through the National Carer Counselling Program. Visit Carers Australia or call 1800 242 636.

Young Carers – For information and support tailored for carers under 26, visit Young Carers Network or call 1800 242 636.

Consumer advocacy

Advocacy means speaking out on behalf of others to achieve positive change. Cancer advocates lobby the government and key organisations to convince them to reduce cancer risks and improve services. Many people affected by cancer get involved with advocacy. For more information, call Cancer Council 13 11 20 or visit Cancer Voices Australia.

Featured resource

Cancer Care and Your Rights

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This information is reviewed by

This information was last reviewed May 2023 by the following expert content reviewers: Prof Sarah Lewis, Faculty of Medicine and Health, The University of Sydney, NSW; Kevin Bloom, Senior Social Worker, Haematology and Bone Marrow Transplant, Royal North Shore Hospital, NSW; Danielle Curnoe, Consumer; Alana Fitzgibbon, Clinical Nurse Consultant – Gastro-Intestinal Cancers, Cancer Services, Royal Hobart Hospital, TAS; Hall & Wilcox (law firm); Johanna Jordaan, Consumer; Dr Deme Karikios, Medical Oncologist, Nepean Cancer and Wellness Centre, Nepean Hospital, NSW; Melissa Lawrie, Breast Cancer Clinical Nurse, Cancer Services, Gold Coast Hospital and Health Service, QLD; Jacqueline Lesage, Consumer Reviewer, Cancer Voices NSW; McCabe Centre for Law and Cancer, VIC; Louise Pellerade, 13 11 20 Consultant, Cancer Council WA; Andrew Potter, Consumer; Siân Slade, PhD Candidate, Nossal Institute for Global Health and Non-Executive Director (health, disability sectors), VIC; Paula Watt, Clinical Psychologist, WOMEN Centre, WA.

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