Providing support for medical care

Carers often help with medical care. Medical care should be based around the needs, preferences and values of the person with cancer, as well as your needs as the carer.

Talking to the healthcare team

As a carer, you are part of the healthcare team. One of your key roles is to help the person you care for communicate with their healthcare team and make decisions about their care. At times, you may also need to speak on behalf of the patient, if that is what the person you care for would like. The person you are caring for must give written consent before the healthcare team can talk with you about their care when they are not present. This consent should be included in their medical record. Read about what happens if the person you care for is unable to make decisions.

Most cancer centres now have multidisciplinary teams (MDTs) made up of specialist doctors, nurses and other health professionals. The MDT is there to support the person with cancer and their carers.

Try keeping a notebook to record which members of the MDT are responsible for what area of care. You might need to make the initial contact with them if it doesn’t happen automatically. Having a key contact person in the MDT to answer your questions, such as a cancer care coordinator, can help you feel more comfortable.

Dealing with health professionals can be intimidating, especially if this is new for you. You may feel overwhelmed by all the new information or working out who to talk to about different issues. Having a regular general practitioner (GP) can help you and the person you are caring for find a way through the healthcare system and be a source of support.

Making the most of a medical appointment

Health professionals you may see

• GP – assists with referrals and treatment decisions, and works in partnership with specialists to provide ongoing care
• surgeon – surgically removes tumours and performs some biopsies; specialist cancer surgeons may be called surgical oncologists
• medical oncologist – treats cancer with drug therapies such as chemotherapy, targeted therapy and immunotherapy (systemic treatment)
• radiation oncologist – treats cancer by prescribing and overseeing a course of radiation therapy
• haematologist – diagnoses and treats diseases of the bone marrow, blood and lymphatic system; prescribes chemotherapy and other drug therapies
• nurse or nurse practitioner – administers drugs and provides care, information and support throughout treatment; a nurse practitioner works in an advanced nursing role and may prescribe some medicines and tests
• cancer care coordinator – coordinates care, liaises with other members of the MDT, and supports the patient and family throughout treatment; care may also be coordinated by a clinical nurse consultant (CNC) or clinical nurse specialist (CNS)
• community nurse – visits you at home to supervise medical treatment, assesses your needs for supportive care, and liaises with your GP and MDT as required
• dietitian – helps with nutrition concerns and recommends changes to diet during treatment and recovery
• social worker – links people to support services and helps people with cancer, and their carers and families, with emotional, practical and financial issues
• counsellor, psychologist, psychiatrist – help people with cancer, and their carers and families, manage their emotional response to diagnosis and treatment
• speech pathologist – evaluates and treats communication, voice and swallowing difficulties during and after treatment
• physiotherapist, exercise physiologist – helps with restoring movement and mobility during and after treatment, returning to daily activities, and improving fitness and wellbeing
• occupational therapist – helps people with cancer, their carers and families, manage everyday activities during and after treatment by suggesting ways to adapt the living and working environment with aids, equipment or strategies
• spiritual care practitioner (pastoral carer) – discusses spiritual matters and search for meaning, if appropriate; may arrange prayer services and other religious rituals
• palliative care team – specialist doctors and nurses who work closely with the GP and cancer team to help control symptoms and maintain quality of life

Organising paperwork

Many carers talk about how complicated and time-consuming paperwork can be. A social worker at the treatment centre can offer support with this part of your role. The following tips may also help:

• Set up a system for organising paperwork to reduce stress. Use a folder, expanding file or filing cabinet to organise bills, receipts and letters from health professionals.
• Keep a record of all treatments and test results, and take it with you to appointments.
• Consider helping the person with cancer set up an online My Health Record. This stores their important health care information in one place and they can give permission for their health professionals to see it. If the person is not capable of making their own decisions, you may be able to apply to manage their account as the authorised representative.
• Consider using an app to store medical records on a smartphone or tablet. The Australian Government’s my health app can be connected to My Health Record.