Motor neurone disease guidelines to have “hugely significant” impact on care
Updated motor neurone disease guidelines will have a “hugely significant” impact on care, according one national charity.
The guidelines, published by NICE, aim to improve and standardise care for people who have motor neurone disease (MND).
MND is a group of rare, incurable, progressive, fatal neurodegenerative diseases that attack the motor neurones in the brain and spinal cord. Around 1100 people will develop MND each year in the UK and around 5000 adults currently live with the disease.
Typical symptoms include muscle weakness, wasting, cramps, problems with speech and swallowing, and rare cases, breathing problems. Most people with MND die within 2-3 years of developing symptoms, but 25% are alive at 5 years, and between 5 and 10% are alive at 10 years.
Since there is no cure for MND, the aim of care for the diseases is to maintain ability to function and enable those with MND and their family members to live as full a life as possible.
Currently, care for MND varies. While MND care centres and networks provide coordinated multidisciplinary care, some people with MND are left isolated and their care is less than ideal.
The NICE guidelines include recommendations that cover the care of people with MND from diagnosis until preparation for end of life care to help improve and standardise assessment and management of the disease.