Finding the best tips, advice and other information about motor neurone disease (MND) can be difficult, especially if you or someone you love has been recently diagnosed with MND.
The shock of a recent diagnosis can make it hard to focus. Reading complex information about treatments, while living with the stress of MND, can feel overwhelming. You may also find it challenging to navigate Australia’s health and government systems, and not quite know where to start.
Accessing easy-to-understand sources of information about MND can help. Information based on the latest evidence and insights from those affected by MND can really help to make a positive difference to daily life with the disease. You can also learn about what professional help is available and decide what will work best for you and your family.
To help share the most reliable information about MND available, MND Australia recently launched the MND Connect website, which is especially for people living with MND, their carers, health professionals and service providers.
MND Connect features a range of easy-to-use articles, guides and other information resources about MND, from advice about eating, drinking and swallowing, to where to find assistive technology and help from MND Associations located across the country.
Below we explore what you can find on MND Connect. You can learn of ways to use MND Connect to discover support and services that are available, and who else might be able to help to make life with MND easier, day-by-day.
MND Connect is a project that has supported creation of a new website and helped MND Associations, which are located across Australia, to provide the MND Info Line service.
The website has information for people living with MND, their carers and loved ones about looking after the body and mind with MND, and for helping support you to have the best quality of life possible. The MND Connect site is part of MND Australia’s website and represents a major upgrade to the previous information we made available.
MND Connect helps make information easy to find and understand with its new content and tools. New content includes plain language articles, short animation explainers, bright and colourful posters, and photos from the MND community.
Tools like the accordion style page design and a clear, “tile-based” navigation system guides you to a wide range of MND related content. You can use the tools to quickly scan and select information most relevant to your needs.
On MND Connect you’ll find information about:
GPs, neurologists, nurses, physiotherapists, speech pathologists, occupational therapists, palliative care professionals and other professionals can also find specialised information for supporting people with MND. The information is based on major care needs for MND. Links to webinars, professional development and accredited training are also provided.
While living with MND can be tough, it’s important to remember that there are people available to assist you.
Staff on the MND Info line know about MND and are there to listen and share information to help answer any questions you have.
You may like to talk with staff about services that are available to support you, other MND related topics and how to access the equipment you need.
You can call the MND Information Line on 1800 777 175, 9am to 4:30pm Monday to Friday.
We hope that MND connect provides you and others affected by MND with choices to find information on your terms, as much as possible.
Some people might prefer talking on the phone about what they need. Others may feel more comfortable reading online. Your preferences could change over time, too.
For example, if movement and mobility are becoming issues, you might feel more comfortable reading about walking sticks, electric beds and other kinds of assistive technology on MND Connect, before talking about them with loved ones. That way you have some time to figure out your preferences and what you want.
You might prefer talking on the phone with someone when thinking about joining a local MND Association. Staff on the MND Information Line can help with specific details about services, memberships, how to enrol and what sorts of community events might be happening nearby.
Or sometimes, you may feel like asking questions about MND more generally, and having someone listen to what’s going on. You can also ask for printed information resources to be mailed out to your home.
Health and community professionals can also contact the MND Information Line. Staff can help provide information about care and managing MND symptoms and can also start the process of referring patients into the MND association for services and support.
MND Connect was developed by looking at what the evidence tells us about MND, how to deal with its symptoms, what sorts of services and supports are available in Australia and what people affected by MND have wanted to know more about. We also considered research and advice about what helps make information easy to read and understand.
The information and resources on MND Connect, as well as its overall look and design, was informed by the reality of living with MND and is hoped to reflect MND in a real and authentic way.
We’ve drawn on the latest scientific studies and clinical guidelines available, wherever possible, to help share the highest quality and most relevant information with the MND community. All of the content on MND Connect has been reviewed by people with expertise with MND.
An MND Connect steering committee, made up of people living with MND, carers and professionals working at the MND Associations of Australia, was also involved in the development of MND Connect. The committee provided insights from people in the MND community and about living and working with MND.
We will continue to gather feedback about MND Connect and review its content to keep providing high quality and trusted information for people living with MND. Feedback and content checking form part of MND Australia’s regular cycle of review and improvement for its information resources, in line with Australian recommendations for best practice.
MND Connect was funded by the Information Linkages and Capacity Building (ILC) program, Department of Social Services, Commonwealth of Australia.
If you have any questions or feedback about MND Connect, you can contact MND Australia on:
(02) 8287 4980