Service Quality

MND NSW social media sites including Facebook, Instagram, LinkedIn and others are spaces for people to:

• learn more about motor neurone disease (MND)
• find information about practical support, care, equipment and services
• connect with the MND community
• learn about MND NSW events, fundraising, advocacy and other initiatives

1. When we monitor MND NSW social media sites

MND NSW generally monitors its social media sites between 9am and 5pm, Monday to Friday, excluding NSW public holidays.

Some posts may be scheduled outside these hours. Comments or messages posted outside our monitoring hours may not be reviewed until the next business day.

Social media sites are not continuously monitored and should not be used to request urgent assistance.

2. Community standards

We welcome people living with MND, carers, families, friends, health professionals, supporters and members of the wider community.

We ask everyone who participates to communicate with care, respect and consideration. People may be navigating diagnosis, changing support needs, caring responsibilities or grief.

Respectful discussion, questions and feedback are welcome, including constructive feedback about services and systems.

People who repeatedly or seriously breach these guidelines may be blocked from one or more MND NSW social media sites. 

3. Comments from contributors

Comments shared by contributors reflect their personal views and experiences. They do not necessarily represent the views of MND NSW.

We value respectful conversation and appreciate your help in keeping MND NSW Social Media sites a safe, supportive and inclusive space for everyone impacted by MND.

MND NSW may hide or remove posts and comments that:

• contain abusive, threatening, defamatory or harassing language
• are racist, sexist, homophobic, biphobic, transphobic, ableist or otherwise discriminatory
• target, shame or intimidate another person
• are likely to cause serious or unnecessary distress to members of the community
• share another person’s personal, health or identifying information without their permission
• promote inaccurate, unsafe or potentially harmful health information
• advertise products, services or fundraising activities without approval
• contain spam, scams or repetitive promotional content
• include inflammatory, aggressive or unrelated party-political commentary
• are unrelated to the purpose of the page
• breach the social media site’s community standards or applicable laws

Where appropriate, we may contact a person privately before removing their contribution.

4. Health and support information

Information shared on MND NSW social media sites is general in nature and is not a substitute for medical advice, diagnosis or treatment. 

5. Further information

For information about MND NSW support and services, contact our team on 1800 777 175 during business hours.

For non-urgent health advice in NSW contact your GP.

In an emergency or life-threatening situation, call Triple Zero on 000.

For crisis support, contact Lifeline on 13 11 14.

MND NSW is committed to providing you a quality service. We are accredited under the NDIS Practice Standards.

MND NSW values and respects the privacy of the people we deal with.

Particpants can provide us with their:

• Consent to communicate with a family member or friend
• Consent to communicate with an organisation or service provider
• Consent to communicate with a directed contact

The MND NSW Privacy Policy describes how MND NSW manages the privacy protection of personal information provided to our organisation.

If you would like to receive a hard copy of the MND NSW Privacy Policy please contact MND NSW

Rights Responsiblities and Feedback

2 page leaflet describing rights and responsbilities, and how you can make compliments or complaints about our services.

• free online
• hardcopy available - free for members and others

(c) MND NSW published February 2022

Continuity of Supports Policy

An emergency is a situation of grave risk to health, life or environment. Key to being ready for any disaster is having a known and understood plan by all parties. In the event of an emergency, MND NSW will:

• inform participants of the current situation and how the provision of their services and workers may be impacted
• consult with participants and support networks on the plan’s development and any adjustments or changes in circumstances. Always ensuring that they are informed of what will occur before, during and after any disaster or emergency.
• continue to provide participants with the same key workers if they are available. If they are not available, we will replace unavailable key workers with other experienced workers who have the knowledge and skills to provide appropriate care to the participant
• inform the participant of any service changes and outline reason/s for these changes.

MND NSW Whistleblower Policy 

8 page document.

• free online
• hardcopy available - free for members and others

(c) MND NSW published December 2021