Every caring situation is different. What you are required to do will depend on the needs of the person you are caring for and what you are able to do. The level of care you provide may change over time. This chapter discusses a range of tasks that may or may not be part of your role as a carer.
Caring can be more than a one-person job. Family and friends are often willing to help, but don’t know how – consider telling them what you need help with.
- Working with the health care team
- Preparing for the doctor’s appointment
- Health professionals you might see
- Managing medications
- Applying for a PBS Safety Net card
- Managing pain
The Australian Government has developed the National Carer Recognition Framework to acknowledge the valuable contribution of carers to the Australian community.
The framework is made up of the Carer Recognition Act 2010 (Commonwealth) and the National Carer Strategy 2011 (Commonwealth), and outlines six priorities to ensure that carers have rights and choices. Each state and territory government has also passed their own Acts and policies.
Carers should have:
- recognition and respect
- access to appropriate information that makes it easier to get support
- economic security and the opportunity to participate in paid work
- access to appropriate services
- the skills to do their role and the opportunity to participate in formal education and training
- improved wellbeing and health and the capacity to participate in community life.
Working with the health care team
Most cancer treatment centres now have multidisciplinary teams (MDTs) made up of specialist doctors, nurses and allied health professionals including physiotherapists and dietitians. MDTs work together closely to manage the care of patients.
The team will discuss the needs of the person with cancer and recommend the best treatment. They may also refer the person to other specialists to ensure all aspects of their care are covered.
As a carer, you’re part of the health care team. You can work with the team to ensure you understand, and are included in, decisions about the care and treatment of the person you care for.
Dealing with health professionals can be intimidating, especially if it’s something new for you. You may feel overwhelmed with all the new and complex information or finding your way around a new clinic or treatment centre. Having one contact person in the multidisciplinary team, such as a cancer care coordinator, can help you feel more comfortable.
The person you are caring for needs to give written consent for the treatment team to talk with you about their care. This consent and your contact details should be formally recorded in their case file.
Preparing for the doctor’s appointment
Before the visit
- Write a list of all the questions you both have so you don’t forget them during the actual appointment. Call Cancer Council 13 11 20 if you need information or help working out the questions to ask.
- Do some research at the library or on the internet so you can ask informed questions.
- Make a list of all the medications being taken, including complementary therapies. Note the dose and any side effects.
- Check with the doctor’s receptionist about what you need to bring, e.g. test results, scans, blood tests.
- Record any recent change in the person’s condition or symptoms.
- Ask for a longer appointment if you have a lot of questions.
During the visit
- Take notes or record the discussion with the doctor.
- Write down any specific instructions.
- Clarify anything you don’t understand.
- Ask the doctor if they can give you printed material or tell you where to find further information.
After the visit
- Review your notes.
- Record the next appointment in a diary or calendar.
- Call the doctor for test results, if appropriate.
- Contact the doctor about changes in the condition or symptoms.
Health professionals you might see and their roles
- general practitioner (GP) – responsible for general health and coordinates specialist treatment
- surgeon – operates to remove tumours
- medical oncologist – prescribes and coordinates the course of chemotherapy
- radiation oncologist – prescribes and coordinates the course of radiotherapy
- haematologist – diagnoses and treats diseases of the bone marrow, blood and lymphatic system
- nurses – provide support and help during all stages of treatment and administer chemotherapy
- nurse care coordinator – provides care, information and support throughout treatment
- palliative care specialist and nurse consultant – responsible for control of symptoms such as pain, nausea, depression and anxiety
- pharmacist – responsible for dispensing medication
- dietitian – supports and educates patients about nutrition and diet during treatment and recovery
- physiotherapist – helps with restoring movement and mobility, and preventing further injury
- occupational therapist – assesses changes needed to your home and recommends equipment
- pastoral care worker – helps provide emotional and spiritual support
- counsellor, psychologist, social worker – provide emotional support and new ways to think about your situation and deal with difficulties
The person with cancer may be taking non-prescription and prescription medications. Knowing the answers to the following questions can help save time and confusion.
- What are the names of the drugs and what are they for?
- How much should be given and when?
- How should the drugs be given (with or without food, etc.)?
- Is there anything, such as alcohol or driving, that should be avoided while taking the medications?
- Do the drugs interact with other drugs or vitamin supplements?
- Are there any possible side effects? What should I do if the person experiences side effects?
- How long will the medications be needed?
- What should I do if a dose is missed?
- When is the use-by date?
- How should the drugs be stored?
Keeping track of medications
The National Prescribing Service (known as NPS MedicineWise) can help you record information about medications in several ways. See nps.org.au
Medicines list (paper) – Download from website or order a copy online.
Medicines eList – Create a list online and save as a PDF.
Applying for a PBS Safety Net card
Many medicines cost a lot more than the price they’re sold for. The Australian Government helps reduce the cost through the Pharmaceutical Benefits Scheme (PBS) and Safety Net card.
To apply for a PBS Safety Net card, you need to keep a record of what is spent on PBS medicines on a Prescription Record Form (available from pharmacists). If you always use the same pharmacist, you can ask them to keep a computer record instead. Once the threshold is reached, your pharmacist can give you a Safety Net card so your PBS medicines are less expensive or free for the rest of that calendar year. To find out more, call 1800 020 613 or go to pbs.gov.au
The following strategies can help you work with the person you’re caring for to control their cancer pain:
- Use a pain scale to help you understand the intensity of the pain, and the need for extra doses of pain medication.
- Keep a diary of pain levels and symptoms. Let the health care team know how the medication is working and of any changes.
- Try relieving pain and discomfort with hot water bottles, ice packs or gentle massage. For more information about massage you can do at home, see Cancer Council’s booklet Massage and Cancer.
To learn more about managing pain, call Cancer Council 13 11 20 and ask for a copy of Overcoming Cancer Pain.