Understanding Your Rights

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Who can help?

From the uncertainty of diagnosis through to the busy period of treatment there are doctors, nurses and other health professionals who can help you find your way through the health care system.

Specialists

Depending on the cancer type and treatment you have, several specialists may plan and manage your treatment, such as:

  • a surgeon
  • medical oncologist
  • radiation oncologist
  • haematologist
  • urologist
  • palliative care specialist.

You may want to ask your specialist all your questions but often you have limited time so it is best to use that time to talk about treatment. It's often helpful to ask junior doctors, such as resident medical officers and registrars, who can get information from your specialist.

Other staff

Other staff may be able to help you sooner with questions and concerns. Those staff will then take your concerns back to the doctor and other people in the treatment team.

Cancer care coordinator and clinical nurse consultant

The cancer care coordinator (CCC) and clinical nurse consultant (CNC) are senior nurses who monitor a patient from throughout treatment, and work closely with specialists.   There may be CCCs for specific cancer types in large hospitals, while smaller hospitals may have general CCCs. In hospitals that don't have either CCCs or CNCs, the Nursing Unit Manager (NUM) may have a similar central role.

Social worker

The social worker is a vital person in your health care team because they are the primary point of contact for practical issues that affect life outside hospital, such as transport, accommodation, financial assistance, child care and home nursing care.

Allied health

  • dietitian - supports and educates you about nutrition and diet
  • psychologist, counsellor and pastoral worker - help you manage your feelings and cope with changes to your life as a result of cancer or treatment
  • physiotherapist and occupational therapist - help you return to your normal activities. A physiotherapist can also help with physical side effects, such as lymphoedema.

Your general practitioner (GP)

It is important you have a good relationship with a GP who knows you and your medical history. Keep your GP informed while you're being treated in hospital. The treating team should provide information to your GP every time you are discharged, and specialists should send test results to your GP.

You can talk over treatment options with your GP, who can also arrange second opinions.

Deciding on specialist care

It is important that you feel comfortable and confident with your choice of specialist because you will work closely with that person and they will have a lot of influence over your care.

Public or private treatment

You are entitled to be treated as a public patient in a public hospital. If you need or want to be treated in the public system, you can be referred to any doctor regardless of where they are located. Keep in mind, though, that public hospitals may give priority to patients in their local area health service, so you may have to wait longer if you want to be treated by a particular doctor outside your area.

If you have private insurance, you can be treated as a private patient in a private facility. You can also choose to be treated in a public hospital at any stage of your treatment to avoid out-of-pocket expenses.

Choosing a specialist

Under the Medicare system, you need a referral to see a specialist. This referral can come from a GP or another doctor. Some patients are happy to leave the choice of specialist to their GP. However, if you want to be involved, this is your right.

If you are having surgery as a public patient in the public system, the hospital will choose your surgeon. You can have a say, though, by researching a public treatment centre that may treat more of your type of cancer.

Questions to ask the surgeon or oncologist

  • How many cancer operations have you done in total?
  • How many cases of my type of cancer did you manage last year?
  • Which hospitals do you work in?
  • Do you work within a multidisciplinary team or have access to one?
  • Do you work within a treatment centre that is known for specialising in the type of cancer I have?

Cancer Institute NSW website has lists of questions to ask cancer specialists.

Key issues in choosing a specialist

Volume of patients

Some doctors and treatment centres have particular expertise in treating certain types of cancer because they do it a lot and therefore have more practice. In some types of cancer, particularly breast cancer, there is evidence that doctors who have a high volume of patients have the best outcomes.

Multidisciplinary care

There is evidence that patients have better outcomes if their doctor works as part of a multidisciplinary care team. This means health care professionals work together to plan treatment and manage a patient's care.

The team, which often includes a surgeon, medical oncologist, radiation oncologist, care coordinator, nurse and social worker, meets regularly to review cases and consider treatment options.

They also discuss how best to help the patient cope with the physical and emotional effects of cancer.

Specialist centres

There may be treatment centres that specialise in the type of cancer you have. These centres see many patients and also tend to see rarer cancers.

The best way to find out if there's a treatment centre like this for you is to talk to people in the know - your GP, other patients, the Cancer Council Helpline and patient advocacy groups such as Cancer Voices NSW.

How to find a specialist

  • Ask your GP - Your GP should have clear reasons for referring you to a particular specialist and you are entitled to ask about those reasons and to receive an answer. Is it because the doctor has particular skills or simply because they are nearby?
  • Ask friends - Try to find someone who has been through a similar experience. While everyone is different, it's helpful to share information.
  • Look in directories and then ask your GP for a referral:
  • Call the Cancer Council Helpline - the Helpline can't refer you to a doctor, but can provide general information about choosing one.

Rural patients

In rural areas, your GP may refer you to a local specialist or treatment centre, or to a visiting oncologist. Some regional specialists treat many cancer patients and there are also some excellent regional cancer centres. However, some regional specialists treat far fewer cancer cases than city doctors and there may be a longer wait to see the visiting oncologist.

If you're prepared to travel for cancer treatment, tell your GP. It's your right to choose whether you want treatment close to home - if it's available - or to be referred out of area.