Being involved in such a program ensures that the experiences I endured during my own cancer battles, along with the processes I went through, can be put to good use in assisting present and future consumers.
- Ray Kelly
NEMICS recognises that one of the best ways of enhancing patient care is to listen to and value the voice of people who have been diagnosed with cancer and have experience of the health care services.
It was because of this understanding that NEMICS formed a Consumer Reference Group (CRG). Our consumers provide advice and make an active contribution to improving cancer services by working with the NEMICS program office and health services within the region.
If you have had an experience of cancer or supported someone through cancer, your knowledge can help us understand the needs of people affected by cancer and contribute to improvements to cancer services.
Community members can participate through involvement in a range of ways. These can include:
• membership of the NEMICS Consumer Reference Group
• providing the patient experience of cancer through involvement on project committees, attending small group discussions and workshops
• reviewing and providing feedback on patient information pamphlets and service improvement ideas
If you would like to be involved or wish to find out more, please contact:
Project Manager - Coordinated Care & Consumer Engagement
Ph 9496 3322
“It is very satisfying to know that the issues we have input to, or involvement in, are making improvements to the way cancer services are delivered,……which we hope leads to better outcomes and experiences for others”
Janine Rossely - NEMICS Consumer Reference Group member
A Common Path Cancer Support And Advice Videos
The ‘A common path’ suite of cancer support and advice videos have been developed by NEMICS for people who have been newly diagnosed with cancer. They provide people with an opportunity to learn from others who have already experienced a cancer diagnosis and treatment, highlighting how they made decisions, the things they learned along the way, the things that helped, and things they wish they had known or done better.
Consumer input has been crucial in the development of these videos. Involvement has included :
the NEMICS Consumer Reference Group who were central in the development of the project idea
participation in focus groups to identify the issues people face when diagnosed with cancer; and
people sharing their experiences as participants of the videos.
The videos can be found on YouTube under the ‘A common path’ channel
A total of 16 videos have been produced. Fourteen relate to specific cancer types and there are two general videos
A Common Path Cancer Support And Advice Podcasts
The ‘A Common Path’ series of cancer support and advice podcasts have been developed by NEMICS for people who have been newly diagnosed with cancer.
They provide people with an opportunity to learn from others who had already experienced a cancer diagnosis and treatment, highlighting how they made decisions, the things they learned along the way, the things that helped, and the things they wish they had known or done better.
The podcasts are currently available on Spotify and Podbean. They will be available on other platforms in the near future.
Community Ambassador Program
The Community Ambassador Program is an initiative of the NEMICS Consumer Reference Group.
Research indicates people with cancer who receive information and help with psychological and social issues have been shown to demonstrate lower rates of anxiety, mood disorders and physical symptoms such as pain and nausea, and significantly greater knowledge about their disease and treatment.
If you or a loved one have received a cancer diagnosis, having the right information and support can make things easier. Local community services offer a range of valuable resources including information and support. Knowing what these services are and where to find them is important.
The free program provides a trained volunteer to present to community groups and organisations on:
Available services and resources
Helpful tips at different stages
How and where to find reliable information
For more information on having the Coping with Cancer presentation conducted at your group/organisation, please contact:
Project Manager - Coordinated Care & Consumer Engagement
Ph 9496 3322
Coping with Cancer: Community Ambassador Presentation
Ray Kelly, a community ambassador and an active member of the CRG, has been instrumental in delivering the presentation at many of the local Probus clubs in our region.
Having being diagnosed and treated with several cancers, as well as a strong history of cancer in the family, Ray is well familiar with dealing with health professionals and cancer health services. He is also a very keen advocate of sharing with others the useful tips that he has learnt along the way.
Audiences consistently feedback that the material presented is informative, helpful, interesting and inspirational.
View an example of the presentation below, conducted at the North Balwyn Men's Probus Club meeting on Tuesday 9th August 2016.
“Emotional and practical support is just as important as the medical treatment. You need support, and to get the support, you need to know what is out there and how to get it.”
“Being involved in such a program ensures that the experiences I endured during my own cancer battles, along with the processes I went through, can be put to good use in assisting present and future consumers”.
My Cancer Care Record
My Cancer Care Record is a resource that supports people affected by cancer to store and record their medical and health-related information in one place.
It provides tips on questions and information to ask health professionals. It can also assist you to record specific details that you may be frequently asked and find hard to remember.
The folder has eight key sections to help you organise your medical information.
Click on the relevant heading to find information and pages relating to that section:
Financial & legal
Tests & results
The folder is aimed at helping with issues related to managing information when you have multiple treatments provided by multiple people, across different services and over long periods of time. It can assist you to be able to communicate across the variety of health care professionals involved in your care.
My Cancer Care Record can also help the clinicians working with you. It can provide easy access to information they often require such as:
copies of your test results and letters from other hospitals/doctors
current medication, medical and family history, current treatment schedules
details of side effects & symptoms you might have had since your last appointment
contact details of other clinicians involved in your care
Survivorship initiatives in NEMICS health services
Brain tumour support group
Endocrine breast cancer clinic
Dedicated clinic addressing survivorship issues (including bone health, menopausal symptoms and cardiovascular risk management) in women who are prescribed adjuvant endocrine therapy. The clinic enables translational and clinical research in ER/PR+ breast cancer and links to wellness centre acupuncture, massage and psychology services. Contact: Kathryn.WALLACE@austin.org.au
Haematology late effects and healthy living clinic
Austin Health haematology service provides a nurse-led late effects and healthy living clinic.
Haematology survivorship Clinic
The haematology survivorship clinic provides holistic assessment and referral to a range of wellness and community services. They have delivered projects investigating a nutrition intervention following stem cell transplantation and the impact of computer brain training on cancer-related cognitive changes.
For more information, contact
Olivia Newton John Cancer Wellness and Research Centre information lounge
The information lounge provides an excellent range of electronic and paper-based information resources for people at all stages in the cancer journey.
Prostate Cancer Survivorship Clinic
Austin Health received a NEMICS service improvement grant to improve care provided to men after prostate cancer. Targeting men treated with radiotherapy, this initiative provides holistic assessment, care planning and care coordination at end of treatment.
For more information, contact Carla.D'AMICO@austin.org.au
Wellness Centre services
Supportive care and group interventions accessible to people living with/beyond cancer. Programs include: mindfulness meditation, relaxation, yoga, support groups and educational groups.
Live Well Program: evidence-based group program promoting emotional wellbeing, diet and exercise after cancer
Carrington Health Good Life Cancer Survivorship Program
Carrington Health, a community health service in Box Hill have established a new Good Life Cancer Survivorship Program with support from a Department of Health and Human Services Victorian Cancer Survivorship Program grant. A partnership project with Eastern Health and NEMICS, the service provides allied health interventions to people with/after cancer. With access to services including physiotherapy, occupational therapy, dietetics and counselling, the service assists people to get back to life after cancer and to maximise function and quality of life for people living with cancer.
Eastern Health Breast Service survivorship care planning
Eastern Health are establishing health and wellbeing care planning for women who have completed treatment.
For more information, contact Mary-Anne Dennemoser
You can find useful links to other cancer related website and resources on our resources page.