Motor Neurone Disease and other

Neuro-Degenerative Disorders

Motor Neurone Disease (MND), also known as amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease, describes a group of diseases in which damage to motor neurones occurs. Motor neurones are nerve cells that control the movement of muscles that are under conscious control. These include all the muscles of the trunk and limbs and of speech and swallowing. Without activation, muscles gradually weaken and waste, resulting in paralysis. The initial symptoms of MND may be weakness in the hands or feet, swallowing difficulties or slurred speech. Muscle twitching and/or cramps may also occur. In the majority of cases the senses and intellect are not affected.

Each person with MND is affected differently in terms of their initial symptoms, the rate and pattern of disease progression and the length of time to death. There are no remissions and there is no cure. Some medications may increase life expectancy by several months. The average time between diagnosis and death is two to three years, with very few people surviving more than five years. The progression of MND is rapid, quickly creating high levels of disability and the consequent need for support, including assistance with feeding, communication, movement, transferring, toileting, and other personal care activities. MND has an impact on all activities of daily living ( from DHHS Interim report on the MND Pathway Project, 2015)

For more information visit the MND Victoria website.

 

MND Shared Care Worker

The unpredictable and often rapid progression of MND means that the level of disability changes over months rather than years. Healthcare professionals who are unaccustomed to managing MND may not recognise the significance of progressive symptoms. This can lead to unnecessary hardship for those with the condition. This speed of progression creates problems of adjustment for people who have MND, the escalating burden on carers and families and the challenges faced by service providers and their staff who are charged with meeting the variable and complex care needs.

The Victorian Department of Health and Human Services funds an MND Shared Care Worker in each region to provide support and education to palliative care services and residential aged care facilities, and other service providers, on a palliative approach and care of a person with MND.

In the Gippsland region, the MND Shared Care Worker is:

Carol Barbeler
Palliative Aged Care and Disability Resource Nurse and MND Shared Care Worker (Gippsland)
Gippsland Region Palliative Care Consortium
C/O Cottage 4, West Gippsland Healthcare Group
Warragul

Office: 5622 6842
Mobile: 0435 823 008
Carol.barbeler@wghg.com.au

 

Top Up Funding (TUF), information for Palliative Care Service and Health Services

The Community Top Up Funding (TUF) requests are made to MND Vic by Community Palliative Care Services, to enable people living with MND to access equipment, services, events, or activity that can be seen to enhance their quality of life.  Funding for the request should not be available from another funding source. Equipment should not be funded from this source.

A request for up to $2000 per 12 month period is available per client.

A few examples of activities/events that have previously been funded include large screen TV /Foxtel subscript; additional massage sessions; short holiday; family reunion; clothes drier; a platform pet bed with steps so a client’s little dog could still sleep beside him when he needed to move from his double bed into a single hospital bed; attractive feminine bed linen for a lady confined to bed and receiving visitors; and room heating/cooling.

For application and further information for this funding visit the MND Victoria website.

For clients with MND who come into the inpatient setting for specifically “palliation or palliative care” (not necessarily terminal care), please see the explanation for funding application for additional support on the MND Victoria website.

 

MND Associations

  • Unit 6, 2 Phipps Close, Deakin ACT 2600
    Tel: (MND Australia) +61 2 8287 4980
    Tel: (MND Research Australia) +61 2 8287 4989
    Email: nfo@mndaustralia.org.au
    Web: https://www.mndaustralia.org.au/

  • MNDRA supports high-quality MND research to discover the causes, improve care and find treatments and ultimately a cure for MND.

    Unit 6, 2 Phipps Close, Deakin ACT 2600
    Tel: (MND Research Australia) +61 2 8287 4989
    Website: https://www.mndaustralia.org.au/research

  • 265 Canterbury Road (PO Box 23) Canterbury Victoria 3126

    Tel: (03) 9830 2122
    Mobile: 0402 183 140 or
    Freecall: 1800 806 632
    Fax: (03) 9830 2228
    Website: https://www.mnd.asn.au

 

Professional Development

  • MND Victoria provides a range of professional development opportunities including:

    • Annual health professional webinar programs

    • Free introductory MND webinars for health professional service providers

    • Free introductory MND webinars for support workers

    • Free education for Aged Care Facilities providing care for a resident affected by MND

    • Bespoke webinars and face-to-face training for organisations

    Click here to be directed to the MND Victoria website.

  • This comprehensive course is designed to provide in-depth knowledge about Motor Neurone Disease, its symptoms, treatments, and the latest research advancements.

    Course Highlights: The MOOC has 4 modules that include:

    1. What is MND? 

    2. The Body and MND  

    3. Diagnosing MND

    4. Living with MND

    How to Enrol:

    1. Visit our course page click here.

    2. Click on the 'Enrol in Course' button.

    3. Follow the registration instructions.

 

Recorded Education and Webinars

  • The purpose of this channel is to provide VRSS clients with ‘How To Videos’ on using and caring for their ventilator in the community.

    Videos include

    Plus a suite how to videos. Click here to visit the VRSS Education Channel

  • The Assistive Technologies used to Support People with Motor Neurone Disease (MND) recorded education was delivered by Jessica Moller, Community Occupational Therapist at Gippsland Lakes Complete Health in October 2020.

    It is relevant to registered and enrolled nurses, and community and residential aged care workers, who care for people with MND.

    WATCH HERE

  • The Communication, Swallowing and Secretion Management in MND recorded education was delivered by Chloe Carter, Speech Pathologist at West Gippsland Healthcare Group and Carol Barbeler, MND Shared Care Worker (Gippsland) in August 2020.

    It is relevant to registered and enrolled nurses, and community and residential aged care workers, who care for people with MND.

    WATCH HERE

  • The Management of NIV in MND & Elective Withdrawal of Ventilation webinar was hosted by the Centre for Palliative Care and was delivered by three different health professionals with specialities in Neurology, Respiratory Medicine and Palliative Medicine.

    This webinar addresses the care of people with MND in the inpatient setting, progression of the disease, palliative care, and NIV management and withdrawal discussions.

    WATCH HERE

  • The Physiotherapist support for people with MND recorded education was delivered by Una McLeod, Physiotherapist at Gippsland Southern Health Service in June 2022.

    WATCH HERE

  • Presented by Lauren Gordon, Social Worker, Gippsland Regional Palliative Care Consultancy Service. This session covers topics including: Psychosocial considerations for people with MND and their families, understanding the patient/residents wishes, Grief and Bereavement, Supporting those around you and Helpful/Unhelpful responses after a death

    WATCH HERE

  • This webinar presented by Dr Indra Jayasinghe, Dual specialist in general medicine and palliative care with interest in neuro-palliative care, Calvary Bethleham and St John of God and Dr Sarah Lee, Neurologist, Calvary Bethleham, discusses Palliative Care for people of MND.

    Webinar recording and powerpoint presentations are available upon request to GRPCC.enquiries@wghg.com.au or by calling 03 5623 0684

  • Presented by Dennis Espinosa, Clinical Nurse Consultant, Victorian Respiratory Support Service this webinar discusses

    • Non Invasive Ventilation (NIV)

    • Overview, tips, tricks, setting up and positioning

    • Use of NIV in people with MND

    Click here to view the webinar

  • Click here to view the webinar

 

Resources

  • This package, developed by Southern Metro Palliative Care Consortium, provides information about relevant aspects of MND. It includes contact details for further help and information. The example care plan is designed to be a prompt for the types of issues that should be included in a comprehensive care plan.

    Click here to download the Information Package

  • The Motor Neurone Disease (MND) Information for the Palliative Care Team booklet, developed by Southern Metro Region Palliative Care Consortium (SMRPCC), is designed with summary information to help them care for people with MND and their carers. It includes contact details for further help and information.

    Click here to view the Motor Neurone Disease (MND) Information for the Palliative Care Team booklet

  • This guideline aims to provide an overview to support health professionals in managing the process when a patient with Motor Neurone Disease (MND), who is non-invasive ventilation (NIV)-dependent, expresses the desire to discontinue/withdraw NIV. It provides guidance on support for the patient, their family, and the support required by the healthcare team in an inpatient setting, in collaboration with specialist palliative care, in Gippsland.

    Click here to view the guideline

  • Discharge booklet developed by Victorian Respiratory Support Service (VRSS)

    Click here to view booklet

  • Click here to be directed to the MND Australia website

  • This document has been written for health professionals who are caring for a person with Parkinson’s Disease (PD) living in the community. It may also be applicable for other progressive neurological conditions (PNC).

    The guide aims to highlight symptoms the patient may exhibit which could be an early indicator of the transition to the palliative stage of the person’s life.

    Click here to view the document

 

Podcasts

  • Robyn Reid, MND Shared Care Worker in the Southern Metro Region has produced a number of podcasts on MND and the various aspects of its management. 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.

    Topics include:

    #1 –Presentation, diagnosis and clinical decision-making.
    #2 –Secretion management and dysphagia.
    #3 –Respiration and Non-Invasive Ventilation.
    #4 –Frontotemporal dementia in MND.
    #5 –Communication in MND.
    #6 –Carers of people with MND.
    #7 –Sexuality, MND and palliative care.
    #8 –Maintaining hope.

    LISTEN HERE

    As well as listening to the podcasts, a transcript of each podcast can be downloaded from the Southern Metro Region Palliative Care Consortium website and kept for your future reference.

    READ TRANSCRIPTS HERE

 
 
This document was last updated on Monday 13 June 2022.