Motor Neurone Disease

Background

Motor Neurone Disease (MND) is a life-threatening illness. People with MND, their families and carers need access to a broad range of services that assist with the physical, psychological, emotional and spiritual impacts of the disease. Palliative care can provide many of these elements.

The MND Program aims to increase access of people with MND to palliative care. It assists palliative care services to manage and support people living with MND.

Lee-Anne Henley – Motor Neurone Disease Shared Care Worker

Lee-Anne has extensive experience as a palliative care clinician and educator with significant understanding of the issues that people with MND and their families face.

Contact: [email protected]

  • Current Activities:

Top-up funding

Palliative care services can apply to receive up to $2000 top-up funding if they have a client with Motor Neurone Disease. This is available to:

  • Inpatient Palliative Care Services and
  • Community Palliative Care services

Applications for this funding are available at the Motor Neurone Disease Association.

For any assistance with applications in the Southern Metropolitan Region please contact [email protected]

Training/education/resources/support:

Lee-Anne provides education, information, resources and support about Motor Neurone Disease and Palliative Care for health professionals.

Topics include:
  • What is MND?
  • Fronto-temporal dementia in MND
  • Non- invasive ventilation management and care
  • Conversations about palliative care- communications skills to assist appropriate palliative care referrals

MND: An Orientation package for new staff supporting clients with MND

Many new staff in palliative care services may not have come across people with MND. This package is designed with summary information to help them care for people with MND and their family/carers. It includes contact details for further help and information. The example care plan is designed to be a prompt for the kinds of issues that should be included in a comprehensive care plan.

This package is designed to provide:

  • information and education about MND and its management
  • a list of contacts and resources for health professionals
  • an example of a nursing care plan for someone with MND

To access this document CLICK HERE!

Program of Experience in Motor Neurone Disease (PEM)

This is an annual placement program, organised in collaboration between the consortium, Calvary Healthcare Bethlehem and the Motor Neurone Association of Victoria.

Up to four palliative care professionals per year undertake a four day placement in the specialist services. Participants identify their learning needs and are supported to improve their understanding of best practice with regard to MND. This skill development and knowledge is then taken back into their palliative care agency and used to support, resource and educate their colleagues.

MND podcast series

Before her retirement, MND Shared Care Worker, Robyn Reid, produced a number of podcasts on MND and the various aspects of its management. The series will be released at regular intervals and made available on the SMRPCC website.

As well as listening to the podcasts, a transcript of each podcast can be downloaded for free and kept for your future reference.

If you work in aged care or primary health and have a client with MND, these podcasts will help you to better understand the illness and improve your care.

To listen, simply click on the title of the podcast below:

**All podcasts available on the  PodBean App which can be  downloaded for free from the Apple App Store or  Google Play to your phone or PC and provides easy access to a variety of video and audio podcasts. To find our audio podcast(s) simply search for and follow SMRPCC’s Podcasts.

Basics of Non-Invasive Ventilation

MND patients may in the course of their illness experience hypoventilation as a result of the progression of their disease. This may require them to undergo testing and as a result they may be fitted with Variable Positive Air Pressure (VPAP) ventilation. As their condition deteriorates, they will become more and more dependent on it. This module provides basic information about the management of the MND patient and their NIV equipment in the home environment.

CLICK HERE! to open the learning module.

Resources

  • SMRPCC developed MND resources 
  • MND Victoria (MNDV). MNDV is the a non-profit organisation that provides services and support to anyone impacted by MND, including health service providers
  • MND Australia is the national voice for people living with MND. Together with the State MND Associations and the research arm, MND Research Australia, They are striving to improve the lives of everyone impacted by MND through investing in research, driving advocacy and advancing high-quality care.
  • MND Connect (MND Australia) provides resources, information and service linkage for people living with MND, their carers and family, as well as the health professionals and services providers who support them to live well.