Optimal Clinical Pathway for Adults: Motor Neurone Disease (MND)

National Neurosciences Advisory Group. (2023).

London (United Kingdom): National Neurosciences Advisory Group (NNAG), 1-21.

<div>This consensus-based document provides recommendations regarding the optimal care pathway for adults with motor neurone disease otherwise known as amyotrophic lateral sclerosis (ALS). Findings relevant to the field of speech-language pathology are included in this article summary.</div>

National Neurosciences Advisory Group (United Kingdom)

<div>Adults with ALS should be referred to a specialty ALS clinic within four weeks of referral. These patients should be seen by a multidisciplinary ALS community-based team led by a physician with expertise in ALS. This team should be collaborative and integrate effectively between services.</div> <div> <ul> <li>The core team should consist of neurology, specialty nursing, speech-language pathology, physical therapy, occupational therapy, dietary care, respiratory care, and a provider with expertise in palliative care.</li> <li>The core multidisciplinary care team should have established relationships and the ability to promptly refer to clinical psychology/neuropsychology, social care, counseling, respiratory ventilation/cough services, specialist palliative care, gastroenterology, orthotics, wheelchair services, assistive technology services, augmentative and alternative communication (AAC), neurorehabilitation services, and community-based neurological care.</li> <li>Care planning should include shared decision-making and ALS clinic appointments should occur every three months.</li> <li>A care plan should include an emergency plan, symptom management strategies, psychological support, advance care and end-of-life planning, an established first point of contact, and considerations for support services for the patient and their family and care partners.</li> <li>Saliva/secretion management should be provided.</li> <li>Swallowing should be routinely assessed in clinic appointments.</li> <li>Communication should be routinely assessed, with access to AAC and voice banking as needed.</li> <li>Cognitive function should be discussed and assessed.</li> <li>Patients should be given the opportunity to discuss end-of-life issues regularly and access palliative care services when needed.</li> </ul> <div>For a full list of recommendations and clinical pathway algorithms, see this open access document's full text.</div> </div>