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Baseline of Services for People Living with 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 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 eg: respite care, 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

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