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.
