Living with Illness Resources

Experiencing a need for palliative care can be overwhelming and stressful. Access to information you can trust is important. In the following we list a number of resources that you might find helpful.

If you need help now:

• Carer Gateway Australia has a Carer gateway service, freecall 1800 422 737 for links to carer supports.
• If you live in Victoria the Palliative Care Advice Service can help, phone them on 1800 360 000.

Living with illness

• CareSearch Palliative Care Booklet for Patients, Carers, and Families.
• Cancer Council Australia has a booklet on Understanding Palliative Care.

Changes over time

• CareSearch Interactive SPICT-4ALL form (571kb pdf)

Advance care planning

• Video from Future planning and advance care planning, Planning ahead including advance care planning and why it is important.
• Advance Care Planning Australia have information and forms for each state and territory, You can also ring 1300 208 582 for help.
• BBC and Open University have a video on planning Should everyone have an end-of-life plan?
• Moneysmart has information on wills and powers of attorney to assist in planning ahead.

Managing Finances

• Information on Centrelink payments and and services can be obtained via the Services Australia website or by calling 13 27 17. Services Australia also has a Financial Information Service.
• Information on carer payment and allowance can be accessed via the Services Australia website.
• Carergateway has a list of links to transport help that you can get in the different states.
• Patient assisted travel schemes (PATS) provide patients (and eligible escorts) with financial assistance to help with the costs of travelling to and from and staying near non-GP specialist medical services while undergoing treatment.
• Cancer Council offers information on financial costs and assistance. It also has a Cancer and Your Finances booklet (404kb pdf) that provides guidance to help people manage the financial impact of a cancer diagnosis and treatment
• From the Cancer Council NSW: What happens to debts after death? (57kb pdf).

Continuing to work

• Cancer Council Australia have information on Cancer, work and you.
• Business Victoria has created a webpage, Illness and Business Management Plan, dealing with illness management and business issues such as closing or selling a business and continuing to work with a critical illness.
• Carers Australia: The business case for carer-friendly workplaces (834kb pdf).
• Carers Australia has links to the State and Territory Carers Associations.
• Better Health Channel has information on managing work and employment with a life-limiting condition.

Emotional challenges

• The Healthtalk (UK) website has information on roller coaster feelings and on the positive aspects of life-threatening illness.
• Cancer NSW has information on When a family member has cancer and the emotional impact of living with advanced cancer.
• Cancer Council Facing End of Life booklet (462kb pdf) has information on the emotional and spiritual needs of people facing the end of life.
• The NHS Inform (UK) website has information on Talking about life shortening conditions.

Anxiety and depression

• Marie Curie of the UK has information for patients on Anxiety.
• The Beyond Blue website has comprehensive information about the signs and symptoms and treatments of anxiety and depression.
• Mental Health Australia has checklists for consumers and carers to use when discussing a mental health issue with a health professional.

The hard thing about being cared for

• Joanne Lynn’s book ‘Handbook for Mortals’ may be helpful. It has sections on enduring and changing and being prepared for end-of-life decisions.
• Supported decision-making: A guide for people living with dementia, family members and carers. Sydney: Cognitive Decline Partnership Centre, 2018. A quick help sheet is also available.

Would it help to talk with someone

• The Beyond Blue website has a support line that may be useful 1300 224 636.
• CareSearch pages on Support Groups includes a list of contacts for support.
• ABC Health Matters has information on patient support groups.
• If you live in Victoria the Palliative Care Advice Service can help, phone them on 1800 360 000.
• Healthdirect has information on Coping with learning you have a terminal illness.
• If you live in Queensland, PalAssist is here to provide trusted advice or simply to listen. Phone them at 1800 772 273.

Complementary therapies

• Cancer Council Australia has information and resources on complementary therapies that highlights some of the main issues.
• The Department of Health Therapeutic Goods Administration website has information on complementary medicines.
• The Better Health Channel has a webpage called Complementary medicines – tell your healthcare professionals.
• The Healthtalk website (UK) has information on Complementary and alternative approaches.

Why is communication important?

• Dying to Talk encourages Australians of all ages and levels of health to talk about dying.
• From Palliative Care Australia, Asking questions can help – an aid for people seeing the palliative care team (623kb pdf).
• The NHS Inform website (UK) has information on Talking about life shortening conditions.

Communicating with Health Professionals

• CarerHelp has a question prompt list (576kb pdf).
• Cancer Council NSW has a list of common questions about palliative care.
• Healthtalk (UK) has information on Different types of doctor patient relationship, What information needs to be shared? and What may go wrong when decision are not shared?
• Carers NSW has a series of Brochures that provide useful information for carers.

Difficult conversations

• Dying to Talk encourages Australians of all ages and levels of health to talk about dying.
• From Cancer Australia, a resource developed to help people with metastatic (secondary) cancer talk about how palliative care might help them to live as well as possible when cancer has spread ‘Finding the Words’.
• The Cancer Council NSW has information on Talking about dying.
• The UK website Healthtalk has a section on Living with dying with interviews with people who are dying, talking about their different feelings and experiences.

Family communication

• The HospiceUK website has information on Talking about death and dying.
• The NHS Inform (UK) website has information on Talking about life shortening conditions.

Talking with children

• Useful information on depression and anxiety, and how to find various forms of support can be found on the Beyond Blue website. This website also gives phone helpline numbers for parents, families, and kids.
• Canteen is an Australian organisation for young people living with cancer and provides information and resources that may help. There is also a Cancer Council Helpline.
• Kids Helpline is a 24 hour telephone and online counselling service for young people between the ages of 5 and 18.
• From the Raising Children website How to talk about death with children.
• The UK website Winston’s Wish has information on Talking to your children about the death.
• From CarerHelp a factsheet on Relationships and children (515kb pdf).
• The Canadian Virtual Hospice has information on Talking with children and youth about serious illness.
• MacMillan Cancer Support (UK) has Advice on talking to children about cancer.
• The NHS Inform (UK) website has information on Talking to children and young people about life shortening conditions.
• From Canteen Australia, A guide to supporting your friend when their family member has died (3.31MB pdf).
• From The Trauma and Grief Network Information on grief & loss.
• The Good Life, Good Death, Good Grief (UK) website has information on Information to help you help children understand death (2.27MB pdf).
• The MND Association of Victoria has Child friendly resources.
• The Cancer Council of NSW has information on Talking to kids about cancer.
• Multiple Sclerosis (MS) Australia has a booklet called Has your Mum or Dad got MS? (2.89MB pdf).

Spirituality

• Meaningful Ageing Australia has information and resources on spirituality.
• Spiritual Health Association has information for consumers. They also have multi-faith resources including a calendar of religious and cultural events.
• The Canadian Virtual Hospice has information on spiritual health.
• See me. Know me.
• Listen to the Cancer Council NSW podcast on The role of hope and purpose in advanced cancer.