Statement of Good Practice for the Management of ALS/MND

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 an 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, and palliative care;
  • support for caregivers and families, e.g. respite care and bereavement support;
  • health and financial benefits;
  • research and clinical trials;
  • support from an 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.

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