The following resources can help patients and their loved ones better understand the neurosurgical diseases and disorders they face.
National Advocacy Service (NAS)
All people diagnosed with a Primary Brain Tumour should contact the NAS within the first 6 weeks of diagnosis. However it is never too late to register.
NAS is a collaboration between Peace of Mind & Cure Brain Cancer Foundation, supporting people with a primary diagnosis of brain cancer. It operates currently between 9am - 5pm Monday to Friday.
The service engages clients in a compassionate and empathetic manner and provides general advice, guidance and hands-on support to identify and connect to a full range of Government funded and community based services.
Equipping patients and carers with sound advice, information and practical support. Critical in assistance with applying to the NDIS, Centrelink, Carer Gateway and My Aged Care.
To create your referral please call 0456 608 484 or visit: https://www.peaceofmindfoundation.org.au/request-for-support-services
Find out more: https://www.peaceofmindfoundation.org.au/national-advocacy-service
ANZCTR - Australia New Zealand Clinical Trials Register
The ANZCTR is an online registry of clinical trials being undertaken in Australia, New Zealand and elsewhere.
The search function on the website allows you to conduct either a basic search or an advanced search of clinical trials available on the ANZCTR database. Once you find a relevant trial, you will be able to contact the person listed as the 'public contact' on the trial record for more information.
Please visit: https://www.anzctr.org.au/
Brain Tumour Alliance Australia (BTAA)
- Brain Tumour Alliance Australia (BTAA) is a national organisation focused on support for brain tumour patients, their carers and families. They provide a support phone line – please call 1800 857 221.
- BTAA seeks to provide peer support to people living with a brain tumour. We extend this to their carers, their families, and friends. BTAA provides information resources for newly diagnosed patients and can assist with referrals to the most appropriate support services in their area.
- Access information about support for people living with a brain tumour – and how to deal access support and access information for services such as Centrelink, Superannuation and the NDIS.
- BTAA operates a support line - 1800 857 221 (a free call in Australia) where you can speak to someone who knows what it is like to travel the brain tumour journey and receive peer support. It is important to be aware that this number is answered by a coordinator who then contacts the on-call BTAA member to return your call.
- https://www.btaa.org.au/
Adelaide Brain Tumour Support Group
We are a small informal support group in Adelaide and meet for coffees and other activities.
Please see our Facebook page: Adelaide Brain Tumour Support.
Adelaide Brain Tumour Support Group was created by Annette Taylor in September 2017 after she was diagnosed with a Meningioma brain tumour in 2014. Since finding out she now has 3 meningiomas. However hasn’t had surgery as yet. She felt compelled to support people who are going through a similar experience, as well as creating a safe space for patients, carers and loved ones of those effected by brain tumours. This support group is heavily involved in social events with group members, such as coffee catch ups 1st Saturday of each month at various locations around Adelaide. Lunches, dinners, at home support and fundraising for brain tumour/cancer research. Current admin are Annette Taylor , Kerry Wilson & Catherine.
All of us have / had tumours. We are here to support all people on the brain tumour journey.
We encourage you to participate in sharing your story and supporting those who share theirs. Please join us for our monthly face to face chats.
If you are not on Facebook and would like to attend one of the regular monthly catch ups please call Ginta on 0419844511 for details of the next event.
Carer’s SA – Support for Carers
- If you care for someone with terminal illness, we can connect you to services to support you in your caring role.
- The program focuses on providing carers with access to early-intervention, preventative, and skill building supports, to improve well-being and long-term outcomes.
- In addition to the supports we are able to provide, there is a number of online services and information available for carers to access.
- Contact Carer’s SA on 1800 422 737 or email info@carerssa.com.au
- Use our online chat from 9am – 5pm weekdays (or leave a call back message)
- https://www.carerssa.com.au/contact/
Cancer Council SA Counselling
- Whether you are directly or indirectly affected by cancer our free Cancer Counselling Service offers you an opportunity to discuss your cancer experience and its impact on your life.
- Our professional counsellors are experienced in helping people affected by cancer and can help you learn new ways to manage stress, set personal goals and develop ways to achieve them, or find ways to talk to family and friends about your concerns.
- You can speak to our counsellors in person or over the phone at any stage of your cancer experience
- Ph: 13 11 20
- https://www.cancersa.org.au/support/support-services/counselling/
Carer’s Support – National Services
Community Care
Calvary Community Care has been supporting people in their own homes and communities for over twenty years.
They deliver a range of aged care, disability and other support services that enable independence, improve social connections and promote positive health and well-being.
Services offered:
- Home Care
- Private Home Support
- Disability Support
- Hospital to Home
- Fact Sheets and Publications
- Calvary Home Care Experts
Website: https://www.calvarycare.org.au/community-care/
Country Patient Guides
SALHN - servicing Flinders Medical Centre
- Download the Patient Information Guide
- Please download this document if you are a country patient attending a Southern Adelaide Local Health Network hospital looking for accommodation and other useful information
CALHN - servicing Royal Adelaide Hospital
- Visit this page for rural and remote patient support information including accommodation options and the patient assistance transport scheme.
GP Management Plan
- If you have a chronic medical condition (one lasting more than 6 months), and your GP determines that you could benefit from a documented plan for your health, with your consent a GP Management Plan (GPMP) will be written.
- The appointment will be longer than a standard GP consultation to allow a thorough history and examination to be undertaken. Access to a Medicare Rebate for a total of 5 appointments with relevant allied health services assists patients financially.
- Please book an appointment with your GP to access this service.
- https://www.patients.org.au/care-plans/
Lift Cancer Care Services
Lift is a healthcare facility in Adelaide providing evidence-based treatments to help people through their cancer experience with the very best outcomes.
Lift Cancer Care Services specialises in integrated allied health services for oncology patients such as Prescribed Exercise Medicine, Clinical Psychology, Dietetics, Speech Pathology, Physiotherapy, Lymphoedema Screening & Early Intervention, Men’s Health Physio.
“At Lift, our full circle of care approach ensures that the person is being looked after, not just the cancer. You can come to Lift at any point in your journey, as services are individualised to meet the changing needs of our patients.”
Past and present patients of Lift and their families can even join The Lift Choir.
Look Good, Feel Better
Look Good Feel Better is a free national community service program run by the Cancer Patients Foundation, dedicated to teaching cancer patients how to manage the appearance-related side-effects caused by cancer treatment. Women, men and teens participate in practical workshop demonstrations covering skin care, make-up and head wear, leaving them empowered and ready to face their cancer diagnosis with confidence.
Workshops cover skincare techniques to address common side-effects like dryness and sun sensitivity; makeup tips to help correct and conceal redness, sallowness, pigmentation and dark circles as well as techniques for drawing on eyebrows; and advice on headwear including scarf styling and wig selection.
Look Good Feel Better workshops are open anyone undergoing treatment for any sort of cancer, free of charge.
Medication Support
- Talk to your local chemist and GP- webster pack details to help you manage your medications
Palliative Care SA
- From the moment people are told that they have a life limiting illness, they, and their families, are encouraged to find out more about the services and supports available to help them to live, die and grieve well.
- This is NOT an end of life service this is about extending and quality of life.
- The first step is to speak to your GP or current healthcare provider about palliative care.
They may recommend a palliative care provider to you, or you can find a provider near you using this tool: https://pallcare.asn.au/palliative-care-service-providers-2/
Peace of Mind Foundation
They understand the stress, anxiety and journey that brain cancer patients, their families and loved ones go through. To help improve quality of life and survivorship our services focus on providing supportive care here and now for patients and their families across 4 key areas: Counselling & Wellbeing, Financial Assistance, Resources & Advocacy, Retreats & Community Events.
https://www.peaceofmindfoundation.org.au
They also offer a free Survivorship Diary - please order here: https://www.survivorshipdiary.com/
RDNS – Support for Adults with Chronic Conditions
If you experience limitations resulting from a chronic condition or have a life limiting illness and wish to receive end of life care at home, support is available. Government-subsidised support may be available if you:
- live in metropolitan Adelaide
- are over 18 years old and under 65 years old (or under 50 years for Aboriginal and Torres Strait Islander persons)
- face significant functional limitations caused by your health
- are not eligible for other programs such as the National Disability Insurance Scheme.
RDNS will work with you to develop a care plan to meet your individual needs and goals. Services include allied health and therapy services, restorative services, respite and carer support, personal care, domestic assistance, social support, equipment and home modifications.
Dreams2Live4
Vision - To encourage people who live with metastatic cancer, relapsed blood borne cancers and grades 3-4 brain cancers to live life to the full and overcome any emotional limitations they may have as a result of living with a chronic disease.
Mission - To provide an opportunity for adults (17 years and older) 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.
Looking Forward after Cancer
Dr Elisabeth Coyne, who spoke at the recent BTAA Patient Education and Information Forum, is part of a team of researchers who have developed the YouTube channel Looking Forward after Cancer. The channel provides a range of videos developed with persons with cancer and health professionals to provide information tailored to your supportive care needs. Together with Dr Dieperink, Dr Winter, Dr Carlini and Ms Robertson, Dr Elisabeth Coyne shares her vision for persons with cancer [particularly brain cancer] and their family to develop capacity to survive well at home.
You can find Looking Forward after Cancer by following the link below:
https://www.youtube.com/channel/UCqNGuI9Ig7XXOfjgZiDcc4Q/videos
Building the Bridge to Life with Brain Cancer Support
Have you or a loved one finished treatment for brain cancer?
Whether you are a person affected by brain cancer, a family member or an interested health professional, this resource will understand some of the challenges and impacts and help make plans about what next.
This is a resource about getting back to life. It’s about finding information relevant to your situation, hearing from others who have been here and getting some tips to help you live the best life you can with this diagnosis. Building the Bridge to Life with Brain Cancer has been designed for you in collaboration with people in your situation, health professionals who work with them and families who care about them.
Access the resource here.
