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NICE publish updated guidance for motor neurone disease

For Motor neurone disease

The National Institute for Health and Care Excellence (NICE) have published their updated guidance for motor neurone disease.

NICE guidelines provide advice on the care and support that should be offered to people who use health and care services.

This information explains the advice about motor neurone disease (MND) that is set out in NICE guideline NG42. It also covers advice on non‑invasive ventilation that NICE produced in 2010.

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

What is motor neurone disease?
Motor neurone disease is commonly known as MND. It is also known as amyotrophic lateral sclerosis, which is usually shortened to ALS.

The motor neurones are nerves in the brain and spinal cord that control the muscles used for gripping, walking, moving, speaking, swallowing and breathing. In MND the motor neurones gradually stop working properly, so their messages do not get through to the muscles. This means that MND affects how you grip, walk, move, speak, swallow and breathe.

There is no cure for MND, but treatment aims to help people have the best quality of life possible by managing their symptoms, providing equipment and devices that can help with day-to-day activities, and supporting the person and their family or carers.

MND can also affect the areas of the brain involved in thinking, language, behaviour and personality. Doctors call this 'cognitive change'.

Motor neurone disease with frontotemporal dementia
For most people, any cognitive changes will be mild. A small number of people may have more severe cognitive changes that may affect the way they behave, their personality and thinking. This is called 'motor neurone disease with frontotemporal dementia'. It is sometimes shortened to FTD.

© NICE [2019]

Motor neurone disease: assessment and management. NICE guideline [NG42]. Published date: February 2016. Last updated: July 2019
Available from: See Link below. All rights reserved. Subject to Notice of rights
NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication.

The information provided by NICE was accurate at the time this article was issued.


NICE guidance for motor neurone disease

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