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An ideal approach to managing the health care system when you
are living with a terminal illness is to pursue the curative
treatment that is available but to consider palliative care support
at the same time. This may help you to make the most use of
resources that are available to you.
Often, hospitals and other services will offer out of hours
service, crisis support and other resources for people who have
been identified as receiving palliative care services. There are
also additional pharmaceutical benefits and access to medications
for people who are identified as receiving palliative care
services, whether this is through your GP, consulting physician or
a specialist palliative care service.
If you are interested in finding out more about palliative care
either in a hospital, at home or in an aged care facility contact
your doctor or your local palliative care service.
Other ways of getting the best health care include:
Talking to your doctor as
they can be a great support and it is important to discuss
concerns, ideas and plans.
Being aware of and talking to the different health professional groups.
Knowing what to do when unhappy
with the health care system
Talking to your doctor
Here are some suggestions for what you can do to get the most
out of meeting with your doctor :
- Make a list of questions - Write down any questions or
concerns, even if they seem insignificant or silly.
- Keep a diary - Keep a record of how you are feeling each
day and share this with the doctor or use it to summarise how you
are managing.
- Ask for more information - It is important to say you don’t
understand something and ask for more information.
- Bring someone along with you - Bring someone along for support
and with whom you can discuss
the meeting afterwards.
- Take notes - Write down your questions on one side of a page
and leave space on the other side to
fill in the answers.
- Tape record - With the doctor’s permission, record the meeting
so it can be listened to later.
More information on talking to your
doctor is available and includes online booklets and tip
sheets.
Health professional groups
Medical
practitioners
Your physician or surgeon - Will diagnose and tell you
about the disease you have. A physician is a specialist in an area
of medicine. Some examples are: an oncologist (specialises in the
diagnosis and treatment of cancer), a neurologist (specialises in
the diagnosis and treatment of diseases of the nerves) and a
respiratory physician (specialises in the management and treatment
of lung diseases).
Your general practitioner - When you leave the care of a
hospital and/or physician you will be referred back to your general
practitioner (often called a family doctor). The general
practitioner is the key medical doctor for all community care (that
is, all care when you are at home).
A palliative care consultant - A palliative care
consultant is a medical doctor who has specialised in the care of
people living with a terminal illness.
Psychiatrists
If you feel you would benefit from talking to a psychiatrist,
speak to your doctor about this. Psychiatrist's fees are generally
covered by medicare. Ask about any gap fees that may need to be
paid.
Nurses
Each region in Victoria has palliative care nurse specialists
and/or consultants who can speak with you about your special needs.
Contact the palliative care service in
your region to discuss this further.
Other professional groups
The role of Social
Workers, Pastoral Care Workers and the Volunteers in Palliative
Care is outlined
within each leaflet.
For more information on the different services / professional
groups available contact the palliative care service within your
region.
Other therapies
Complementary therapies - are used as well as
conventional medical treatments to improve your overall feeling of
well being. Many palliative care services now provide therapies
such as aromatherapy, massage and music therapy as many people say
that these promote a sense of well being and can complement other
treatments used to manage the symptoms of illness. There are many
useful websites on complementary
therapies.
Contact the palliative care
service within your region to find out what therapies are
available and if there are any associated costs.
Problems and
complaints
Is there is a lack of communication between you and the care
provider? Does there seem to be poor understanding by the care
provider of your needs? Is there a general breakdown in
communication? Simple communication problems are often the main
cause of dissatisfaction with health care services.
If you decide to deal with the issue directly yourself, choose a
time when the health care professional is not pushed for time. You
may like to make an appointment to discuss the issue and perhaps
begin the discussion with ‘I am not feeling happy about…could we
talk about it and try and make it better.’ This gives the person
you are talking to a chance to understand your concern.
If you do not feel you can deal with the issue directly, or feel
that your efforts to deal with it have not helped ring, email or write
to Palliative Care Victoria to discuss the issue. The
staff at PCV will advise you about the best way to resolve the
issue. All contact will be treated confidentially.
The
Office of the Health Services Commissioner receives
and acts on complaints about any health care provider in Victoria.
Ring the office on (03) 86015200 and ask for
assistance on how to formulate your complaint.
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