Riluzole (Rilutek®) – Amyotrophic Lateral Sclerosis (Motor Neurone Disease)

NICE recommendations, summary of meeting discussions, links to additional supporting docs etc.

NICE: Riluzole is recommended for the treatment of individuals with the amyotrophic lateral sclerosis (ALS) form of Motor Neurone Disease (MND).

Riluzole therapy should be prescribed and maintained by a neurological specialist with expertise in the management of MND.

In July 2007 the TAG agreed to support use of a shared care agreement developed by neurologists at the NNUH for use of riluzole in amyotrophic lateral sclerosis.

November 2009: Shared Care Agreement reviewed (no changes) and approved by the TAG.

January 2013: The TAG agreed that on-going monitoring responsibility for patients on riluzole after the initial 3 month period should be returned to the hospital specialist (3-monthly bloods to be taken in primary care but results to be interpreted by the specialist).

May 2013: Confirmation of agreement with the NNUH received.   Recommended changes to the Shared Care Agreement made.

September 2015:

In view of there being on-going prescribing by GPs, the TAG recommended that riluzole should remain as a shared care prescribing option. A revised version of the shared care prescribing agreement was recommended for continued use by the TAG.

October 2015:

Use of the revised shared care prescribing agreement was supported by the Norfolk & Waveney CCGs’ Drugs & Therapeutics Commissioning Group.

March 2016: The TAG noted NG 42 (February 2016)  Motor neurone disease (MND): assessment and management

January 2018:  The TAG agreed to support continued use of the revised shared care agreement for this treatment.

January 2018:  The NHS Norfolk & Waveney CCGs’ noted and supported the TAG recommendation.