Motor Neurone Disease & Parkinson's Disease
Background
Motor Neurone Disease
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.
Current initiatives
Program of Experience (PEM) in Motor Neurone Disease
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.
Top-up funding
Palliative care services can apply to receive up to $2,000 top-up funding if they have a client with Motor Neurone Disease. This is available to:
- Inpatient Palliative Care Services
- Community Palliative Care services
Applications for this funding are available on MND Victoria‘s Health Professional’s page, at MND Victoria – Top Up Funding.
For assistance with applications in the Southern Metropolitan Region, please contact our MND Shared Care Worker, Jane Turton. Please see below for Jane’s contact details.
Training and education
Jane provides training, education, information, resources and support about Motor Neurone Disease and palliative care for health professionals. Topics include:
- What is MND?
- Identifying signs of deterioration
- Fronto-temporal dementia in MND
- Non-invasive ventilation management and care
- Conversations about palliative care communication skills to assist appropriate palliative care referrals
- Communication advice for residents/patients with speech difficulties
- Secretion management and its implications in the care of the patient
Parkinson’s Disease
Parkinson’s Disease is a progressive, degenerative neurological condition caused by the loss of dopamine, which is produced by cells in the brain. Symptoms can be managed however at this stage there is no cure.
Like other progressive neurological diseases, Parkinson’s Disease presents a number of challenges at the end of life, which might differ from cancers and other chronic conditions.
The SMRPCC Parkinson’s Disease Program supports community based and palliative care services to better care for people living with Parkinson’s Disease, when they require palliative care. The program aims to improve access to palliative care for people with Parkinson’s Disease.
We do this through:
- Advocacy
- Training
- Resource development.
For further information for both MND and Parkinson’s Disease, or to discuss support needs for other neurological conditions, please contact Jane Turton at SMRPCC.
Contact SMRPCC
Jane Turton – Shared Care Worker MND
0428 264 446
jane.turton@smrpcc.org.au
Jane has extensive knowledge of MND and other progressive neurological conditions from her many years working in Case Management, MS Limited and more recently at Calvary Healthcare Bethlehem in the Statewide Progressive Neurological Diseases Service.
Jane is passionate about education and empowering staff to provide quality care to those patients with progressive neurological conditions and looks forward to working with SMRPCC and the wider Southern Metro community.
Consortium Developed Resources
Parkinson’s Disease resource for palliative care staff
A guide for staff who are caring for people with Parkinson’s Disease (PD) in the palliative stage. This guide:
- sets out an example care plan with issues commonly faced in terminal stages
- reviews specific symptom management
- notes which medications for people with PD are contraindicated and suggests substitutes
- includes contact details for further help and information.
To access this guide please contact SMRPCC Consortium Manager Tanja Bahro at tanja.bahro@smrpcc.org.au
MND podcast series
Our previous MND Shared Care Worker, Robyn Reid, produced a number of podcasts on MND and its management, before her retirement. The podcasts and transcripts are available on SMRPCC’s website.
If you work in aged care or primary health and have a client with MND, these podcasts will help you better understand the illness and improve your care.
To listen, simply click on the title of the podcast below. To download the transcript, click on the ‘Podcast # transcript’ link.
- MND Podcast 1 — Presentation, diagnosis and clinical decision-making
- MND Podcast 2 – Secretion management and dysphagia
- MND Podcast 3 – Respiration and Non-invasive Ventilation
- MND Podcast 4 – Frontotemporal dementia in MND
- MND Podcast 5 – Communication in MND
- MND Podcast 6 – Carers of people with MND
- MND Podcast 7 – Sexuality, MND and palliative care
- MND Podcast 8 – Maintaining hope
The podcasts are available on PodBean, an app which can be downloaded for free from the Apple App Store or Google Play to your phone or computer. PodBean provides easy access to a variety of video and audio podcasts. To find our audio podcasts on the app, search for, and follow, SMRPCC’s Podcasts.
MND – Information for the Palliative Care Team
For new palliative care staff who support clients with MND
Many new staff in palliative care services may not have come across people with MND. This Orientation Package is designed with summary information to help new staff care for people with MND and their family or carers.
This package includes:
- 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
- designed to be a prompt for the kinds of issues that should be included in a comprehensive care plan
To open MND – Information for the Palliative Care team, click here.
MND – Information for the Aged Care Team
A quick and practical guide for staff in Aged Care who work with a person who has Motor Neurone Disease. It includes a nursing care plan, relevant for residential aged care.
To open MND – Information for the Aged Care Team, click here.
Basics of Non-Invasive Ventilation (NIV)
MND patients may 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 learning module provides basic information about the management of the MND patient and their NIV equipment in the home environment.
To open the Basics of Non-Invasive Ventilation learning module, click here.
For more MND resources and links to other organisations, go to SMRPCC’s Resources and Links page
Other useful organisations
MND Victoria
MND Victoria is a non-profit organisation that provides services and support to anyone impacted by MND, including health service providers.
MND Australia
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 strive to improve the lives of everyone impacted by MND by investing in research, driving advocacy and advancing high-quality care.
https://www.mndaustralia.org.au/
MND Connect (MND Australia)
MND Connect, part of 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.