Guidance
This guideline covers assessing and managing motor neurone disease (MND). It aims to improve care from the time of diagnosis, and covers information and support, organisation of care, managing symptoms and preparing for end of life care.
MHRA advice on gabapentin: In July 2019 we linked to new MHRA safety advice on prescribing gabapentin. As of 1 April 2019, because of a risk of abuse and dependence gabapentin is controlled under the Misuse of Drugs Act 1971 as a class C substance and is scheduled under the Misuse of Drugs Regulations 2001 as schedule 3.
Last reviewed: 19 September 2024
We added links to relevant technology appraisal guidance in the sections on saliva problems and disease-modifying treatment. This is to provide easy access to relevant guidance at the right point in the guideline only and is not a change in practice.
This guideline updates and replaces NICE guideline CG105 (July 2010).
Next review: This guidance will be reviewed if there is new evidence that is likely to change the recommendations.
Recommendations
This guideline includes recommendations on:
- recognition and referral
- information and support at diagnosis
- cognitive assessments
- prognostic factors
- organisation of care
- planning for end of life
- managing symptoms
Who is it for?
- Healthcare professionals and social care practitioners caring for and supporting adults with MND
- Commissioners and providers of MND health and social care services
- Adults with MND, their families and carers
Guideline development process
How we develop NICE guidelines
Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.