Optimal clinical pathway for adults with Motor Neurone Disease

Motor neurone disease (MND) is a progressive, often rapidly progressive, life-limiting neurodegenerative disorder for which there is no curative treatment. Current treatment strategies are largely supportive. Disease severity at presentation and rates of progression can vary widely. Median survival is 30 months from first symptom onset and 22 months from diagnosis. 10% of patients die within one year of first symptom onset. Patients with early bulbar or respiratory involvement may have worse outcomes.

The prevalence of MND is 3-4 per 100,000 in the UK currently. This figure is rising, in part due to an aging population. 10-15% of cases have an identified genetic aetiology.

The development of the optimal clinical pathway has been overseen by NNAG.  It has been led by MND specialists including representatives from the Association of British Neurologists (ABN), with input from professional bodies and patient groups.  The pathway sets out what good treatment, care and support looks like.  A public consultation was held to gather input, views and experience from people with neurological conditions and wider stakeholders.

Download the optimal clinical pathway for adults with MND here.