Patients with motor neurone disease (MND) require access to a range of NHS services. Riluzole is the only drug licensed in the UK to slow the progression of MND. Riluzole was recommended by the National Institute for Care Excellence (NICE) in 2001 for the treatment of individuals with the amyotrophic lateral sclerosis (ALS) form of MND within its licensed indications, which are to extend life or the time to mechanical ventilation for individuals with ALS. NICE is currently evaluating a potential new treatment, Tofersen, for ALS caused by SOD1 gene mutations and, subject to licensing, expects to publish guidance in July 2024.
NHS England commissions the specialised care and treatment that patients with MND may receive from the specialised neurological treatment centres across England. Integrated Care Boards are responsible for the commissioning of the non-specialised elements of treatment and care patients with MND may require. Funding decisions for both the specialised and non-specialised elements of patients’ care are made in line with local needs and priorities.