Useful links
Navigate to the following sections by clicking the topic title:
Allied Health Professionals Australia, Australian Psychology Society, Beyond Blue, Dietitian's Association of Australia, Human Genetic Society of Australia, Occupational Therapy Australia, It's About Us, Dreams2Live4
Carer Gateway, Carer Help, Carers Australia, Carers Couch, Care Search, Young Carers Network, It's About Us, Cancer Council
Centrelink, Dept of Veterans Affairs, Insurance, Money Smart, PBS Safety Net, Patient travel assistance scheme, Superannuation release
Advance care planning, Clinical trials, Canrefer, Healthdirect Australia, Optimal Care Pathway, Palliative Care, Cancer Council
Australian Pancreatic Cancer Genome Initiative, Australian Gastro-Intestinal Trials Group, PanKind The Australian Pancreatic Cancer Foundation, Cancer Australia
Australian Funeral Directors Association, Australian Centre for Grief and Bereavement, Choices, Palliative Care, Macmillan Cancer Centre
Pancreatic Neuroendocrine Tumours
Unicorn Foundation
International Pancreatic Cancer Organisations
Let’s Win PC, Pancreatic Cancer Action Network, Pancreatic Cancer Action, Pancreatic Cancer UK, Lustgarten Foundation, Macmillan Cancer Centre, World Pancreatic Cancer Coalition
Please note, the following external pages are not managed by PanKind, The Australian Pancreatic Cancer Foundation. Always consult your doctor or health professional about any health-related matters. PanKind does not provide medical or personal advice and is intended for general informational purposes only. Read our full Terms of Use.
Allied Health Care
Allied Health Professionals Australia
Allied health professionals are health professionals that are not part of the medical, dental or nursing professions. They are university qualified practitioners with specialised expertise in preventing, diagnosing and treating a range of conditions and illnesses. Allied health practitioners often work within a multidisciplinary health team to provide specialised support for different patient needs. Allied Health includes but is not limited to physiotherapy, psychology, social work, genetic counselling and occupational therapy. Medicare or your health insurance may cover some of the costs check with your GP and your private health insurance provider.
Australian Psychological Society
The APS are the peak body for psychologists in Australia. Their websites include information on a number of topics that may be relevant to patients and carers such as depression, anxiety and grief. They also include a search function to find a psychologist in your area. If your doctor refers you to a psychologist some of the costs may be covered by Medicare. If you have private health insurance, it may include psychology cover - check with your insurance provider for more information.
Beyond Blue provides information and support for people affected by depression, anxiety and other mental health conditions. Depression and anxiety are common feelings after a diagnosis of pancreatic cancer, please raise any mental health concerns you have with your doctor, but you may also find it helpful to refer to Beyond Blue.
Information on Cancer Council’s support services can be found here. These patient support resources include a phone service, information on practical and financial assistance, online community and multilingual resources. Each state has their own Cancer Council and not all Cancer Council’s offer the same services and support.
Phone:
Cancer Council 13 11 20 is a free, confidential telephone information and support service run by Cancer Councils in each state and territory. If you have a question about cancer, or if you're seeking emotional or practical support, call 13 11 20 to speak to our specially trained staff.
Podcasts:
A series of podcasts hosted by Julie McCrossin where Julie interviews experts to provide Information and insights for people affected by cancer.
The Thing About Cancer (early cancer diagnosis).
The Thing About Advanced Cancer.
Dietitian's Association of Australia
Diet and nutrition are important aspects for treatment of pancreatic cancer and patients may find it helpful to see an Accredited Practicing Dietitian.
Find out more about diet and nutrition on our website here.
Human Genetic Society of Australia
In most cases pancreatic cancer is somatic, however in a small percentage of cases there is a familial/genetic component. Genetic counselling is a communication process, which aims to help individuals, couples and families understand and adapt to the medical, psychological, familial and reproductive implications of the genetic contribution to specific health conditions. Get the advice of your doctor before seeing a genetic counsellor.
Fine out more about genetic screening and testing on our website here.
Occupational Therapy Australia
Occupational therapy enables people to participate in activities they find meaningful. Occupational therapists prescribe devices to help you do the activities you want and need to do. They will make sure you can use the device in the best way to meet your needs. This means that you will get a total solution and not just a product. Occupational Therapy Australia is the professional association representing Occupational Therapy throughout Australia. If your doctor refers you to an occupational therapist some of the costs may be covered by Medicare. If you have private health insurance, it may include occupational therapy cover - check with your insurance provider for more information.
It's about us is a Not for Profit which is about helping those who have been affected by cancer. Every person’s cancer journey is unique and trying to leave a legacy of memories during a difficult time may be too overwhelming. It’s about us enables those affected by cancer to create a digital scrapbook to customise and create something relevant and meaningful to them.
Dreams2Live4 makes dreams come true for people living with metastatic cancer (meaning any cancer which has spread). They provide an opportunity for people with metastatic cancer to identify and realise their dreams, giving them goals on which to focus and helping them to live a positive healthy life.
Carers
Carer Gateway is an Australian Government initiative which has been established to help carers (all diseases). If you care for a family member or friend, then Carer Gateway could help you.
Carer Gateway:
- provides practical information and advice
- helps you to get the services and support you need
- provides free counselling services over the phone
- provides free coaching to help you in your role
- lets you connect with other carers through a community forum
Information on a range of services and support for unpaid carers when caring for someone at the end of life.
Carers Australia is the national peak body representing Australia’s unpaid carers, advocating on their behalf to influence policies and services at a national level. It works collaboratively with partners and its member organisations, the Network of state and territory Carers Associations, to deliver a range of essential national carer services. Note from April 2020 Carers Australia will be referring mostly to Carer Gateway going forward.
A safe place of community and support for those caring for a loved one with cancer.
CareSearch helps patients and carers find trustworthy information to help understand, plan and care at the end of life. It includes information about palliative care, what is involved in caring for someone who has a life-limiting disease, what happens at the end, bereavement, grief and loss. The website also includes links to a range of services that can help patients and carers.
This is a general carers booklet, not specific to any disease but it includes information that can be of assistance to carers.
The Young Carers Network is a place for young carers to learn about support services, access resources and share their stories and opinions. It is a Carers Australia initiative.
It's about us is a Not for Profit which is about helping those who have been affected by cancer. Every person’s cancer journey is unique and trying to leave a legacy of memories during a difficult time may be too overwhelming. It’s about us enables those affected by cancer to create a digital scrapbook to customise and create something relevant and meaningful to them.
Information on Cancer Council’s support services can be found here. These patient support resources include a phone service, information on practical and financial assistance, online community and multilingual resources. Each state has their own Cancer Council and not all Cancer Council’s offer the same services and support.
Phone:
Cancer Council 13 11 20 is a free, confidential telephone information and support service run by Cancer Councils in each state and territory. If you have a question about cancer, or if you're seeking emotional or practical support, call 13 11 20 to speak to our specially trained staff.
Podcasts:
A series of podcasts hosted by Julie McCross where Julie interviews experts to provide Information and insights for people affected by cancer.
The Thing About Cancer (early cancer diagnosis).
The Thing About Advanced Cancer.
Financial
A list of Centrelink payments and services available from the Department of Human Services.
The below are some of the payments that a patient/carer may be able to apply for if the meet eligibility requirements:
Carer Allowance: A fortnightly supplement if you give additional daily care to someone who has a disability, serious illness, or is frail aged.
Carer Payment: An income support payment if you give constant care to someone who has a severe disability, illness, or an adult who is frail and aged.
Disability Support Pension: Financial help if you have a permanent physical, intellectual or psychiatric condition that stops you from working.
Department of Veterans’ Affairs
The Department of Veterans' Affairs is a department of the Government of Australia charged with the responsibility of delivering government programs for war veterans, members of the Australian Defence Force, members of the Australian Federal Police, and their dependants. The DVA provides a range of benefits including ongoing and one-off payments. These services are designed to assist eligible persons to manage their health and lifestyle and support those they care for.
If you have life insurance cover it would typically include a terminal illness benefit in which you can access the full amount of your life cover or a set benefit, in advance, if your life expectancy is less than 12 to 24 months. Check with your insurance provider. If you have income protection insurance or other insurance you may be able to make a claim if you are unable to work.
MoneySmart is run by the Australian Securities & Investment Commission to help people make the most of their money and offer free, independent guidance. Having pancreatic cancer or caring for someone who has can place a huge financial burden in addition to the emotional and physical burdens. If you are struggling to pay electricity/gas/phone/water bills, credit card or loans check out this website to understand how you can apply for a hardship variation.
Moneysmart has further information on services that may help at:
Financial Counselling: Financial counselling is a free service offered by community organisations, community legal centres and some government agencies. Financial counsellors can help you solve your money problems and included in this section is information on how to find a financial counsellor, what financial counsellors do, financial counselling for rural businesses, debt consolidation vs Financial counselling.
Dealing with illness: This section includes information on taking care of your emotional wellbeing, checking your financial entitlements, asking for a hardship variation to your bills and debts.
Pharmaceutical Benefits Scheme Safety Net
If a patient/family spend a lot on PBS medicines, the PBS Safety Net can reduce costs. The safety net period is based on a calendar year and resets at the beginning of each year, 1 January. The threshold to be eligible to apply for a PBS safety net card can change yearly so refer to the above link to find out current thresholds and how to apply. You will need to ask each pharmacy you use for a print out of what you have spent on PBS medicines so you may find it easier to manage if you use fewer rather than more pharmacies.
Patient Travel Assistance Schemes
The burden of travel can be particularly difficult for patients living in rural or remote regions. Each state and territory have different schemes to assist with these travel and accommodation costs and the above link includes the information for each state and territory and the eligibility criteria.
Superannuation release for a terminal illness
Super can be released early for a terminal illness if certain conditions are met including the certification of a terminal illness (and likely to result in death within 24 months) by two registered medical practitioners of which at least one is a specialist. Your super may also have life insurance, Total and Permanent Disability) cover and sometimes with income protection insurance bundled in with it, you should check with your super company to find out if you can make a claim on these insurances. Note your insurance cover within your super fund may be cancelled if you have all your super released, so it is recommended to find out first if this is the case before withdrawing all your super. There may be taxation or other financial implications from accessing these and we recommend you speak to a financial advisor.
Healthcare Information
Advance Care Planning Australia
It prepares a person and others to plan for future health care, for a time when the person may no longer be able to communicate those decisions themselves.
AustralianClinicalTrials.gov.au is a joint initiative between the National Health and Medical Research Council and the Department of Industry, Innovation and Science to provide information and resources to consumers, health care providers, researchers and industry about clinical trials.
There is a section of the website specifically for consumers (patients and carers) which explains what a clinical trial is, benefits of being part of a trial and how to be part of one. It also includes a section where you can search for clinical trials for the disease (select Cancer from the drop down list under ‘broad health condition’ and then Pancreatic from the drop down ‘specific condition’ list). After clicking on search it will show a list of trials and you can further narrow it to trials in your state which you can discuss with your treating doctor. PanKind encourages participation in clinical trials.
Find out more about clinical trials on our website here.
Canrefer is an initiative of the Cancer Institute of NSW (NSW cancer control agency) and provides information on cancer specialists and hospitals across NSW and ACT. Only specialists who are active members of a multidisciplinary cancer care team are listed.
Healthdirect Australia is a government-funded service, providing quality, approved health information and advice.
Healthdirect can assist with finding services such as a GP, pharmacy or hospital.
Healthdirect helpline:
Free helpline for health advice 1800 022 222 where registered nurses are available 24 hours a day, 7 days a week to provide advice when a patient/carer is not sure what to do — whether you should see a local GP, manage the condition at home, or go to an emergency department. ***If you think you need an ambulance or your injury or illness is critical or life threatening, call triple zero (000) for an ambulance immediately.***
The Optimal Care Pathways (OCP) are designed for health professionals to promote a full understanding of the patient journey in order to foster quality cancer care from the point of diagnosis. The government and stakeholder endorsed pathways have been established for a number of cancers including pancreatic cancer. The pancreatic cancer OCP can be accessed here.
Palliative care provides high quality health care to people living with a life-limiting illness to live as well as they can by managing pain and symptoms to ensure their quality of life is maintained. Palliative Care Australia is the national peak body for palliative care and provides information on services and resources that can be of assistance.
Find out more about palliative care on our website here.
Information on Cancer Council’s support services can be found here. These patient support resources include a phone service, information on practical and financial assistance, online community and multilingual resources. Each state has their own Cancer Council and not all Cancer Council’s offer the same services and support.
Phone:
Cancer Council 13 11 20 is a free, confidential telephone information and support service run by Cancer Councils in each state and territory. If you have a question about cancer, or if you're seeking emotional or practical support, call 13 11 20 to speak to specially trained staff.
Research
Australian Pancreatic Cancer Genome Initiative (APGI)
The Australian Pancreatic Cancer Genome Initiative (APGI) is a global research enterprise of over 100 scientists, clinicians and allied health professionals involved in pancreatic cancer research and care. The APGI has mapped the genome of pancreatic cancer in a landmark effort as part of Australia’s contribution to the International Cancer Genome Consortium (ICGC). This fundamental understanding of the genetic underpinnings of pancreatic cancer will accelerate the evolution of pancreatic cancer care into the molecular age of oncology. The APGI’s world-class BioResource – biological samples coupled with comprehensive clinical and genomic data – is aiding research worldwide in ongoing discovery and development through quality research and strategic collaborations.
The APGI’s ongoing mission is to further develop this existing world-class resource comprising biospecimens and comprehensive information on pancreatic cancer patients from diagnosis onwards, including clinical, genomic and outcome data and to use this resource to improve pancreatic cancer care in the era of personalised medicine. Since 2016 the continued work of the APGI has been made possible by a grant from PanKind. Read more here.
Australasian Gastro-Intestinal Trials Group (AGITG) and the GI Cancer Institute
The AGITG & GI Cancer Institute are dedicated to improving the health & quality of life of GI cancer patients by developing & conducting clinical trials. The AGITG membership encompasses a wide range of medical specialists, scientists, nurses, allied health professionals and consumers involved in all aspects of Gastro-Intestinal (GI) cancer research. PanKind's first research investment was to the GI Cancer Institute for a clinical trial in pancreatic cancer.
Information on the grants funded by PanKind and other research programs.
Cancer Australia was established by the Australian Government in 2006 to benefit all Australians affected by cancer, and their families and carers. The vision of Cancer Australia is to reduce the impact of cancer and improve the wellbeing of people affected by cancer.
Planning for the end
Australian Funeral Directors Association
Information on how to organise a funeral, what is involved, costs, how to find a funeral director and frequently asked questions.
Australian Centre for Grief and Bereavement
The Australian Centre for Grief and Bereavement provides a range of specialist grief and bereavement support services to individuals, families and communities to help them manage their grief following the loss of their loved one. The centre is based in Mulgrave Victoria and offer face to face counselling from their Centre and also offer Telehealth and Telephone counselling country wide.
The counselling service is specific to a bereavement (they do not do general grief counselling). Generally they would not do counselling for children under the age of 12yrs over the phone or online. The interstate online and telephone counselling service is charged at $140 per 1 hour session. The client will have access to the same counsellor for their sessions and they try to cap it at 16 sessions per person.
A list of Centrelink payments and services available from the Department of Human Services.
The below are some of the payments that a patient/carer may be able to apply for if the meet eligibility requirements:
Bereavement Payment: A lump sum or short term payment when your partner, child or the person you were caring for has died.
Bereavement Allowance: A short term payment if your partner has recently died.
Choice: What to do if someone dies.
Arranging a funeral, working out the Will, determining where you stand financially and information on taking the next steps.
Information on some simple steps you can take to protect the important people in your life before you die: This section includes information on how to organise your financial affairs to make a difficult a little easier on your family. It includes information on Check bank accounts and other assets, Review your life insurance, Involve your partner in your finances, Write or update your will, Keep your important documents safe.
Helping you live with a life-limiting illness booklet
A guide from Occupational Therapy Australia for people with a life limiting illness, their family and friends.
Palliative care provides high quality health care to people living with a life-limiting illness to live as well as they can by managing pain and symptoms to ensure their quality of life is maintained. Palliative Care Australia is the national peak body for palliative care and provides information on services and resources that can be of assistance. They also have several resources including a booklet on the dying process.
Macmillan Cancer Support is one of the largest British charities and provides specialist health care, information and financial support to people affected by cancer. It also looks at the social, emotional and practical impact cancer can have, and campaigns for better cancer care.
Supporting Someone with cancer.
Information for carers.
Pancreatic Neuroendocrine Tumours (NETs)
Not for Profit organisation set up for Neuroendocrine Tumours including Pancreatic Cancer Neuroendocrine Tumours.
International Pancreatic Cancer Organisations
Let’s Win Pancreatic Cancer! (USA)
Let’s Win PC is an affiliation of the Lustgarten Foundation. It is a platform that enables doctors, scientists, and patients to share fast-breaking information on potentially life-saving pancreatic cancer treatments and clinical trials.
A large US charity heavily focused on research into pancreatic cancer. It’s website includes resources for patients and carers.
Pancreatic Cancer Action Network (PanCAN) (USA)
Large US pancreatic cancer charity with a focus on research, clinical initiatives, patient services and advocacy.
Pancreatic Cancer Action is a UK charity focused on the early diagnosis of pancreatic cancer. The charity works with doctors, researchers and supporters to save lives. Their website includes information about the disease, treatment and diet and nutrition.
Charity in the UK which provides information about the disease, invests in research and campaign for change. They also have an online forum which patients and carers may find helpful.
World Pancreatic Cancer Coalition
The World Pancreatic Cancer Coalition (WPCC) is a global collaboration which is focused on raising awareness of pancreatic cancer and sharing information about the disease, support and treatment. PanKind is a member of this Coalition.
Macmillan Cancer Support is one of the largest British charities and provides specialist health care, information and financial support to people affected by cancer. It also looks at the social, emotional and practical impact cancer can have, and campaigns for better cancer care.
Please note, external pages are not managed by PanKind, The Australian Pancreatic Cancer Foundation. Always consult your doctor or health professional about any health-related matters. PanKind does not provide medical or personal advice and is intended for general informational purposes only. Read our full Terms of Use.
