Motor Neurone Disease Shared Care Worker
Motor Neurone Disease (MND) is a progressive neurological disease effecting nerve cells that control the muscles used in movement, speech, swallowing and breathing. MND is a life limiting illness. There is no cure for MND at this time.
Palliative care can provide support to patients and families living with MND through assistance with physical, psychological, emotional and spiritual care.
Motor Neurone Disease Shared Care Worker (MND SCW)
Jackie Creek is the Motor Neurone Disease Shared Care Worker (MND SCW) in the Hume Region. The MND SCW is available to provide support to health professionals and community care providers through education when caring for people with MND. As MND progresses, care needs can rapidly change. Each individual will have their own unique range of symptoms and requirements for support. Early referral to Palliative Care can assist to improve the quality of life for people living with MND. Care staff may have limited or mixed experiences caring for people with MND, and this is where the SCW may be useful.
The MND SCW works closely with the MND Victoria Advisor and Support Coordinator.
Health professionals and community care providers can contact the MND SCW for consultation and advice for any client’s with MND receiving palliative care in the Hume Region.
Hume Region MND SCW: Jackie Creek Ph: (03) 5722 5184
MND Victoria Advisor and Support Coordinator: Sam Mitchell Ph: 1800 806 632
Top up Funding
The SCW can assist patients and families in application for ‘Top up funding’. Top up funding is utilized to support the palliative approach to care to improve quality of life. Each patient can potentially access up to $2000 each 12-month period.
For MND patients in the inpatient setting, health care services can also access additional top up funding. This is available to ‘care type 8’ patients, or a diagnosis code of “Z51.5 Palliative Care”.
Further information: MND Victoria – Top up funding
Education and resources
MND Podcast Series.
An informative series developed by Robyn Reid, MND Shared Care Worker at Southern Metro Palliative Care Consortium. The podcasts explore various aspects of the management of MND. A transcript of the podcasts can be downloaded for future reference.
Further information: Southern Metro Palliative Care Consortium – MND
MND Aware training
This comprehensive training module is provided in three key areas;
- Introductory sessions
- Symptom management sessions
- Wellbeing and support need sessions
The training costs $60 and a certificate is provided for CPD evidence. The first 2 sessions are available for free preview.
The training is for health and community care professionals.
Further information: Access the training on the MND Hub
Non-invasive ventilation and the Victorian Respiratory Support Service Outreach Education Channel
A series of short demonstration videos are available from the Victorian Respiratory Support Service (VRSS) to provide information about all aspects of caring for a person and their non-invasive ventilator.
Access the videos via the youtube link below:
Statewide Progressive Neurological Disease (PND) Assessment, Management and Education Services
The statewide PND service is based in Melbourne at Calvary Health Care Bethlehem. They have clinics at a number of regional centers, and utilise a telehealth model of supportive care when patients are unable to travel. The PND clinic provides additional support to people diagnosed with MND and other progressive neurological diseases. They also provide secondary consultation, education and training to health professionals across Victoria.
Further information and referral:
Victorian Respiratory Support Service (VRSS) Outreach Service
The VRSS provides ongoing support to people at home utilising non-invasive ventilation through education and consultation. VRSS also provides additional equipment, and services ventilators. VRSS staff also provide secondary consultation to care staff.
Further information: Victorian Respiratory Support Service