NICE has published its guideline on the assessment and management of motor neurone disease (MND). The guideline calls for a range of health and social care professionals to be involved at every stage in the care of people with the condition so that decisions about the person’s care can be informed by and tailored to their individual needs and circumstances.
MND is a group of rare (about 1100 people will develop MND in the UK each year and around 5000 adults are currently living with the disease), incurable, progressive, fatal neurodegenerative diseases that attack the motor neurones in the brain and spinal cord.
Motor neurones are the nerve cells along which the brain sends instructions to the muscles. Deterioration of these cells leads to weakness and wasting of muscles. This causes increasing loss of mobility and stiffness or cramps in the limbs, and difficulties with speech, chewing, swallowing and breathing. Some people may experience changes in thinking and behaviour (cognitive impairment), but only a few (10-15%) will experience severe cognitive change.
The effects of MND can vary from person to person, including the initial symptoms and how quickly the disease progresses, to the length of time people live after being diagnosed.
The aim of treatment is to manage symptoms so that people with the condition can maintain functional ability and enable them and their family members to live as full a life as possible.
Mark Baker, Director for the Centre of Clinical Practice at NICE, said: “MND is a devastating, fatal disease with no cure and limited treatment options. Perhaps because of this, and the fact that every person with MND has a unique, individual experience of the disease, care of people with MND varies across the country. In some areas people receive co-ordinated multidisciplinary care, however, some people with MND are left isolated and their care is less than ideal.
“This guideline, by making evidence-based recommendations covering the care of people with MND from the time of diagnosis until the preparation for end of life care, will go some way towards helping to mitigate the effects of this devastating disease and enable people with MND and their family members to live as full a life as possible.”
Commenting on the guidance, Dr David Oliver, Consultant in Palliative Care and Chair of the group which developed the guideline, said: “MND is a complex and difficult illness and treating it can be complicated because it requires the management of a variety of medical problems. There are only about 5000 people with MND in the UK but the impact on them, their families and the professionals involved in their care can be great.
“This guideline covers the care that people with MND and their families and carers should receive from the time of diagnosis. This includes communicating the diagnosis, monitoring disease progression, managing symptoms such as swallowing, breathing and muscle weakness, stiffness or cramps, and preparing for end of life care.