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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.

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