Navigating and managing the healthcare system as a carer can be difficult. It helps to have the right tools and knowledge.

Talking to health professionals

As a carer of someone with a blood cancer, you will meet many different health professionals. Doctors, nurses, pharmacists, physiotherapists and other allied health workers. These health professionals make up the cancer care team. They are 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 to inform the health professionals about what you have observed.

The person living with a blood cancer can become forgetful during treatment. It is helpful if you have a good understanding of what is going on. If you don’t understand something, ask for it to be explained again. Ask for more reading material or sources of information.

Managing appointments, treatments and documents

Treatment for blood cancer can require many medications. Regular check-ups and appointments with doctors and allied health professionals are required. There can be a lot to manage. Keeping a record of treatments and medications can help the carer feel organised. Often people having treatment for blood cancer can find it difficult to concentrate.

Many carers find it is helpful to keep a dedicated diary. Detail appointments, medication schedules and health goals in this diary. Use it to write down questions you may have for the treatment team. Take the diary to upcoming appointments. Use it to take notes about important details.

Keep referrals, hospital documentation and legal information in one folder. You may also like to keep a digital copy on important documents.

Often many medications are prescribed for blood cancer treatment. Talk to your pharmacist about a blister pack, also called multi-dose packaging. The pharmacists dispenses the medications prescribed by the treatment team into each day. This helps both patient and carer to manage the medications. If you would prefer to manage the medications there are free apps.

Tips:

• Carers are vital: You play a crucial role in supporting someone with blood cancer.
• Navigate the system: Understanding the health system helps you advocate for their care.
• Know your rights: You have rights as a carer, including access to information and support.
• Communicate effectively: Open communication with the care team is essential.
• Access support services: There are resources available to help you and the person you care for.
• Find practical help: Learn about managing appointments, medications, and other daily tasks.

Making a complaint

As a carer issues may arise where you feel your loved one’s healthcare needs are not being met.

There are several ways for making a complaint in the health system:

• Informal complaint – could be through an email or making a comment in person. This is usually the best approach for simple issues. Issues such as wait times at the doctor’s clinic or dietary needs not being met in the hospital.
• Internal complaint – is where you make an official complaint to the service provider. This may mean sending your complaint to the hospital. Or to the manager of the organisation where the person you care for receives treatment. These complaints should be made in writing.
• External complaint – for what you consider a serious breaches of healthcare regulations. Or if your internal complaints have been ignored. An external complaint is to either:
  1. Australian Health Practitioner Regulation Agency
  2. Health Ombudsman in your state:
     • 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