Sign in to CMS Desk.

Statement of good practice for the management of ALS/MND

International Alliance of ALS/MND Associations 
November 1999 © 
Revised: November 2007

Support and care management for people living with ALS/MND is underpinned by five basic principles:

  • Management of the disease determined by the needs and wishes of the person living with ALS/MND, treating the person with ALS/MND with care, respect and dignity
  • Timely response to identified needs
  • Access to a coordinated and integrated care plan
  • Regular monitoring and review of the person’s condition, and appropriateness of the care plan
  • Information about the person’s medical condition held in confidence

The International Alliance of ALS/MND Associations recommends the following good practice that will result in effective management of the diagnosis and care of people living with ALS/MND.

Before Diagnosis…

  • Early recognition of symptoms and access to a physician competent to diagnose complex neurological diseases

At Diagnosis…

  • Diagnosis given by a physician who is informed about ALS/MND, in a sensitive way appropriate to the person with ALS/MND and, in an appropriate setting with family and/or friend(s) present
  • Information provided in verbal and written forms about the disease, including its impact, sources of help and support, and referral to the ALS/MND Association as appropriate to the needs of the individual
  • Information sent to the patient’s principal health practitioner about the disease, management implications, and the ALS/MND Association
  • The opportunity to return to the diagnosing physician for further information, care and follow up

After Diagnosis…

Access to:

  • information and support services
  • planning and coordination of support and care

These include:

  • advice about personal care and equipment, clinical interventions, treatments and therapies, palliative care
  • support for caregivers and families, for example, respite care and bereavement support
  • health and financial benefits
  • research and clinical trials
  • access to support from the ALS/MND Association

In summary, it is essential that people living with ALS/MND are enabled to make informed decisions about living with ALS/MND so as to achieve quality of life, and dignity in living and dying. Adopting a proactive approach to disease management, and respecting the needs and wishes of the individual and their caregivers is imperative.

Referral Pathways

Click on a state or territory.

Or to search using additional criteria visit Referral Pathways.


Disclaimer Copyright MNDcare

Funded by the Australian Government Department of Health and Ageing


MND Australia would like to advise Aboriginal and Torres Strait Islander users that this website may contain images or names of deceased persons.