National Projects

Helping People Living with MND to Live Better for Longer:

Facilitating a Coordinated Multidisciplinary approach to MND Care in Australia through ‘one stop shop' e- resources

www.mndcare.net.au is a new ‘one-stop shop' website about motor neurone disease for primary, allied, palliative, aged, disability and community care professionals.  No matter where a professional works MNDcare provides access to latest evidence based and best practice MND symptom management and support information. The website includes state specific referral pathways to assist in identifying providers and services to meet the identified needs of patients with MND. The aim of the website is to facilitate and promote best practice coordinated, multidisciplinary MND care for all people with a diagnosis of MND in Australia.

The website is an initiative of MND Australia funded by the Australian Department of Health and Ageing. The information on the website has been developed and reviewed by a panel of MND experts and MND Association staff.

Evidence based guidelines and systematic reviews are the primary source of information on the website. These guidelines and reviews provide evidence for timely interventions and referral to improve survival and the quality of life of people living with MND.

The website provides MND specific information for professionals from the onset of symptoms through to bereavement. As a symptom or need arises MNDcare will assist the professional to:

1. assess the needs of the person with MND and their carer
2. get evidence based and best practice MND information
3. make referrals to the right provider at the right time
4. provide a coordinated, multidisciplinary team approach to MND care

Each web page provides a quick and easy summary of a symptom or MND related need with links to the source paper or resource. Links to related content, documents and external links provides further information as required. 

The Referral Pathway is a simple tool with more than 1200 potential pathways so that Australian health professionals and community care workers can: 

• locate the appropriate health professional, community care worker, agency or other service for the person living with MND
• as soon as the need is identified

Research studies have shown that the health and community professionals involved in the care of a person with MND can give better care and advice when they are knowledgeable about motor neurone disease and are supported to provide a coordinated, multi and inter disciplinary team approach to care.

If you are caring for a person with MND or their carer visit www.mndcare.net.au to learn more about this uncommon disease. You can help people with motor disease live better for longer.

Education programs for Queensland

MND Australia received funding through the Commonwealth Government Department of Health & Ageing, Palliative Care Grants round 4, to conduct the The Confident Caring Project. This project was run collaboratively with MND Queensland, and supported by MND NSW during 2008/09. 

This project provided quality education programs for family carers of people living with MND, people recently diagnosed with MND, palliative care volunteers, and health and community care providers in Brisbane and surrounding areas.  It is hoped that home-based care was supported and enhanced and awareness about MND was developed through these programs. 

Four types of education programs were offered up until the end of March 2009, including: 

• Information sessions for people recently diagnosed with MND and their family and friends
• Carers workshops specifically for the family carer
• A palliative care volunteer program

• Flexible education sessions for health and community care providers involved in the care of people living with MND  

The following people attended MND specific information sessions during the project:

• Over 800 people were directly assisted to have a better understanding of MND to support home based care.
• 40 people recently diagnosed with MND including their family and friends were assisted to understand the impact of MND and services available.
• 30 Carers were assisted on 43 occasions to better understand a range of challenges and issues related to the care of a person with MND  
• Approximately 700 health professionals and community service providers were informed about MND
• 46 palliative care volunteers were assisted to better understand the needs of people living with MND.

Similar programs may be available in other states please contact your state association  for details

For support and services available in Queensland please contact MNDQ - 1800 777 175