Patients with motor neurone disease should have care from a multi-disciplinary team with expertise in the illness, according to guidelines published today.
The team should include health professionals, social care practitioners and workers who visit the patient in the home, according to the National Institute for Health and Care Excellence.
The guidance says patients should be given full information about the disease at the time of diagnosis or when they ask for it.
This should include details of waiting times for consultations, investigations and treatments, it says.
NICE says that if patients find it difficult to eat, then the use of gastrostomy should be discussed with them.
The guidance sets out how to manage symptoms such as coughing, breathlessness and drugs to treat muscle cramps and stiffness. Its development has been backed by the Motor Neurone Disease Association.
About 1,100 people in the UK develop the disease annually and some 5,000 people are living with the disease.
Palliative care consultant Dr David Oliver, who led the group that developed the guidance, said: “The guideline will enable all people with MND across the country, whether in hospital, at home, in a care home or hospice, to receive care that is co-ordinated, consistent, comprehensive and responsive to their needs, that will improve their quality of life and support them, and their families.
"The challenge is now to see the recommendations put into practice in services across the country.”
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