Finding Support for Patients and Carers
MND Support Organisations
Australia-wide
MND Association of Australia website: MNDA
NSW, ACT and NT
Phone: 1800 777 175 website: MND NSW
SA
Phone: 1800 777 175 website: MND SA
VIC
Phone: 1800 777 175 website: MND Vic
QLD
Phone: 1800 777 175 website: MND Qld
MND and Me Foundation (Queensland)
Phone: 07 3394 5333 website: MND and Me
TAS
Phone: 1800 806 632 website: MND Tas
WA
Phone: 08 6457 7355 website: MND WA
Helpful Resources
MND Connect and MND Info Line
MND Connect is an initiative of the Motor Neurone Disease Association of Australia and is a reliable source of information and support on all aspects of MND.
NICE (UK) Guideline on MND Assessment and Management
The National Institute for Clinical Excellence (NICE) guidelines are respected around the world as they are formed with a strong evidence basis. The first link below leads to the NICE website and an overview of the different aspects of MND
Motor Neurone disease: Assessment and Management – published by the National Institute for Health and Care Excellence, UK.
The following document called ‘what you should expect from your care’ is published by MND Association (England, Wales and Northern Ireland) and is based on the NICE Guideline. It helps you to know if the care you’re receiving is in line with the best recommended care. It gives you an opportunity to advocate for what should be offered to you for the best outcomes. This may be particularly important if you are not attending or cannot attend a Specialist MND Clinic or service. The contact details are for those living in the UK- for Australians contact the MND Association of Australia or your State based organisation.
NICE What you should expect A7 2019
Help making decisions about treatments and interventions
MND Decision Tools: This website is still in the process of being developed but is very useful nonetheless. It offers step by step information about the pros and cons of different treatments that you may be offered. Sometimes these decisions can be difficult and whilst healthcare professionals can make recommendations, the ultimate decision is yours to make.
ALS Untangled– A panel of world experts reviews alternative and off label treatments, with the goal of helping people with ALS make more informed decisions about them. This service is provided by the experts free of any charge.
Advance Care Planning Australia
My Values: a website designed by Barwon Health to help you identify, consider and communicate your wishes about the medical treatment that supports your goals of care.
What sort of care are you entitled to? The Australian government has an informative website about your rights as a health care consumer: Australian Commission on Safety and Quality in Health care
Palliative Care
Palliative Care is a philosophy of patient and family centered care for people who have been diagnosed with a life limiting illness. There are advantages in becoming involved with Palliative Care Specialists and Teams from the early days after diagnosis.
Palliative Care Australia: This website provides resources for patients and carers.
Help and Information for Carers
Caring for someone close to you is hard on a number of levels.
Carer Help: is a very useful website for carers at all stages of the journey
Carers Australia: has resources for carers and helpful information.
Young Carers
Carers Australia also reaches out to young carers: Young Carers has resources and contacts for people under 25 years old who are caregivers.
The Little Dreamers Foundation supports young carers mainly in the Eastern States of Australia Little Dreamers