Guidance on the use of riluzole (Rilutek) for the treatment of motor neurone disease

It is estimated that the potential budget impact to the NHS in England and Wales of making riluzole available to all individuals with ALS would be at maximum around £7.5 million per annum. Given an estimated current level of funding of riluzole for ALS of about £2 million per annum, this represents an additional cost to the NHS in England and Wales of about £5 million. However, there is considerable uncertainty about the proportion of patients who will take up this therapy. Moreover, these figures do not take into account the additional NHS costs of patient survival.

A diagnosis of motor neurone disease (MND) should be made or confirmed by a specialist physician with experience in the management of MND after appropriate investigations. In most cases, the specialist will be responsible for monitoring the progress of the disease and the safe use of riluzole. The needs of people with MND demand flexibility, and this monitoring role can be taken up by the general practitioner or by other physicians involved in providing shared care.

In the latter stages of their disease, patients may wish to review their continued use of riluzole and they should be provided with the opportunity to discontinue treatment, if after discussion with the responsible clinician, they consider it appropriate.