Navigating and managing the healthcare system as carer can sometimes feel frustrating and daunting, but it doesn’t need to be if you have the right tools and knowledge at your disposal.

Talking to health professionals

As a carer of someone with a blood cancer, you will likely meet many different health professionals – doctors, nurses, pharmacists, physiotherapists and other allied health workers. These health professionals make up the cancer care team and are a wonderful source of information and support for carers as well as people living with blood cancer.

As a carer, you do not have the right to make medical decisions on behalf of the patient (unless you are the appointed enduring power of attorney or in an emergency), but you do have the right to ask questions and inform the health professionals about what you have observed.

The person living with a blood cancer can become foggy and forgetful during treatment, which is why you must have a good understanding of what is going on. Because of this, you can’t be afraid to ask questions – even if they sound silly. If you don’t understand something, ask for it to be explained more clearly. Ask for more reading material or sources of information. Nothing is out of bounds and no one will punish you for wanting to know more.

One great tip many carers find helpful is to keep a dedicated diary with appointments, medication schedules and health goals laid out. Use this diary to write down questions you may have for the doctors at upcoming appointments as well as for taking notes, so you don’t forget to ask about important details.

Making a complaint

As a carer for someone living with a blood cancer, issues may arise where you feel your loved one’s healthcare needs are not being met or you don’t feel the healthcare provider is doing a substantial job.

It is firstly important to know the difference between ‘making a complaint’ and ‘providing feedback’. Where providing feedback may mean voicing an opinion without direct consequence (whether it be negative or positive), making a complaint is providing negative feedback which requires an immediate solution.

There are three pathways for making a complaint in the health system:

Informal complaint

Making an informal complaint may be as simple as sending an email or making a comment in person. This is usually the best approach for simple issues that do not require a big solution – issues such as wait times at the doctor’s clinic or dietary needs not being met in the hospital.

Internal complaint

An internal complaint is where you make an official complaint to the service provider. This may mean sending your complaint to the hospital where the person you are caring for is being treated or to the manager of the pharmacy where your pharmacist works. In making your complaint, you should not only voice your grievances, but illustrate what you would like changed to resolve your grievance. These complaints should be made in writing.

External complaint

If you have made one or many internal complaints which have not been resolved, you can consider making an external complaint to either the Australian Health Practitioner Regulation Agency or the relevant Health Ombudsman in your state (see below). External complaints should be made for what you consider to be serious breaches of healthcare regulations or if your internal complaints have been ignored. External complaints may be needed to action a refund or compensation, as well as seeking formal apologies.

Queensland – Office of the Health Ombudsman

New South Wales – Health Care Complaints Commission

Victoria – Health Complaints Commissioner

Tasmania – Health Complaints Commissioner

South Australia – Health and Community Services Complaints Commissioner

Western Australia – Health Consumers’ Council

Northern Territory – Health and Community Services Complaints Commission

Managing appointments, treatments and documents

Treating or managing blood cancer can require a wide range of medications and treatments, often simultaneously, as well as regular check-ups and appointments with doctors and allied health professionals. There can be a lot to manage.

Keeping organised and keeping a clear record of treatments and medications is important for a carer. As many blood cancer medications are very strong and can cause serious side effects, patients can feel foggy and feel their concentration drop, resulting in important information being forgotten.

A handy tool many people use when taking multiple medications are ‘dosesettes’, commonly known as ‘pill organisers’. Not only are they a good way to keep track of what medications to take and when, they are also a good safety mechanism to prevent children and pets getting their hands on these strong medications. Some pharmacists will also sort your medications for you into these pill organisers when dispensing.

To keep track of appointments, many carers benefit from keeping a carer-specific diary (separate from their personal diary). This diary can also be used to track medications, which combination of drugs need to be taken and in what dosage. There are also many free apps available for download to help you manage appointments and medications.

Keeping all referrals, hospital documentation and legal information in one folder is also a good idea. However, if you were to lose this folder or your diary, it can be extremely stressful, which is why keeping a digital copy is also a good idea.

Last updated on June 29th, 2020

Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.