Dentists and GPs across the UK are to be trained to spot early and little-known signs of motor neurone disease, in what organisers say is the first programme of its kind in the country. The scheme will teach healthcare professionals to look out for hidden symptoms such as difficulty swallowing and changes to the tongue muscles.
The charity behind the initiative, the My Name'5 Doddie Foundation, says the training could prompt earlier diagnosis, giving patients more time for disease-slowing treatments to take effect. A speedier diagnosis would also give families extra time to make adjustments to living arrangements, such as disability adaptations, before a patient becomes severely unwell.
Motor neurone disease is caused by damage to the nerves in the brain and spinal cord that control movement, speech, swallowing and breathing. As the nerves stop working, the muscles become weak and waste away, leading eventually to paralysis and death. Around 2,200 people in Britain are diagnosed with the condition every year, but it is more often than not picked up at later stages, once symptoms have already become debilitating. Studies show most patients live for two to three years after diagnosis.
Jessica Lee, director of research at the My Name'5 Doddie Foundation, said the new programme, called Race to Diagnose, was designed to close that gap. "The early signs of motor neurone disease vary considerably," she said. "There is no single test that tells you conclusively that someone has it. That means people can move between different parts of the healthcare system before they reach the right specialist."
"Race to Diagnose gives professionals practical guidance on what to look for, how to assess what they are seeing and when to make an urgent referral," Lee said. "As treatments begin to emerge, reaching people earlier in the course of the disease may be critical to giving those treatments the best possible chance of having an effect."
Warning signs in the mouth
According to experts involved in the scheme, early damage to the nerves that control the face can sometimes show up first in the mouth. Patients may struggle to move the tongue in and out, or a dentist may notice involuntary muscle twitches under the tongue while it is relaxed.
Speech may also become slightly slurred, less clear or slower, with sounds that require precise tongue movement becoming harder to pronounce. Other early signs of the disease include difficulty swallowing, muscle cramping, and problems with walking and using stairs.
As well as helping professionals spot these early signs, the training also shows them how to explain the need for an urgent referral to a neurologist without causing unnecessary alarm to patients.
What causes motor neurone disease
Around one in 10 cases of motor neurone disease is thought to be inherited from relatives, while the cause of the remaining cases is unknown. However, a growing body of research suggests lifestyle factors may also play a role.
Smoking has been heavily investigated as a possible trigger. Some studies suggest people who have ever smoked may be 20 to 40 per cent more likely to develop the disease than those who have never smoked, although scientists stress the evidence remains mixed. Research also indicates that smokers who are diagnosed with motor neurone disease typically experience the onset of symptoms at a younger age than non-smokers, and some studies have suggested women who smoke may face a particularly elevated risk, especially after the menopause.
The disease's most famous patient
The best-known person to have lived with motor neurone disease was the physicist Stephen Hawking, who was diagnosed with a form of the condition in 1963 at the age of 21. Hawking became renowned for his work on black holes and cosmology, including the bestselling book A Brief History of Time.
Doctors initially gave him only a few years to live, but he survived for more than five decades, going on to become one of the world's most recognisable scientists before his death in 2018.
