A new programme targets an old problem
A new programme is targeting motor neurone disease. It is a UK first. The scheme has been designed for general practitioners and for dentists. The My Name'5 Doddie Foundation launched the initiative. Its goal is simple. The charity wants to help clinicians spot the disease earlier. Much earlier. The training focuses on the very first signs of a condition that often evades prompt identification, leaving patients waiting for answers while the disease progresses. This educational push represents a new strategy in the fight against a brutal illness, moving the first line of detection from specialist neurology clinics into local surgeries and dental practices across the country.
Motor neurone disease is a neurodegenerative condition. It is progressive. It is always fatal. There is no cure. The disease attacks the nerves, specifically targeting the motor neurons in the brain and the spinal cord which are responsible for sending instructions to the body’s muscles. As these vital nerve cells stop working correctly and eventually die, the muscles they control begin to weaken and waste away. The process is relentless. The initial signs can be subtle, perhaps a slight tremor or a minor change in speech, but the weakness inevitably and unforgivingly spreads through the body over a period of months and years.
Identifying MND is a known challenge for doctors. Its early symptoms are varied. They are often vague. These signs are easily missed. A patient might present to their GP with slurred speech, a weakened grip, or unexplained stumbling, all of which can be attributed to dozens of other, less severe conditions like tiredness or simple ageing. The new training now being offered by the foundation is designed to cut through this clinical ambiguity. It gives health professionals a new framework for their patient examinations. The goal is to raise the suspicion of motor neurone disease far sooner than is currently typical.
This programme is a direct response to that diagnostic problem. The journey to a diagnosis. By arming dentists and general practitioners with greater knowledge, the My Name'5 Doddie Foundation hopes to trigger earlier referrals to neurologists, the only specialists who can confirm the disease through complex tests. A faster diagnosis is not a cure. It does not halt the disease. But it provides access to support. Patients get time to plan. It is a critical window of opportunity that is often lost during a prolonged search for the cause of their symptoms. This is the central purpose of the new scheme.
Diagnosis can take more than a year
The average time is twelve months. That is the period from the first symptom to a final diagnosis of motor neurone disease in the United Kingdom. It is a long wait. This delay is often called a 'diagnostic odyssey', a protracted and uncertain journey through the healthcare system while a fatal condition progresses unchecked. Patients report feeling lost. They are trapped in a cycle of appointments and tests that yield no clear answers, watching their own bodies decline without knowing why. The process itself causes significant distress for both the person with the suspected condition and for their family, who are forced to navigate a labyrinth of referrals with no clear end in sight. For a disease where time is a finite and diminishing resource, this year long search for a name is a profound problem. The clock is always ticking.
The initial signs of MND are notoriously difficult to pin down. They are mimics. They imitate other, far more common, ailments. A person might notice a persistent weakness in their grip, making it difficult to open a jar or turn a key, which could be dismissed as a repetitive strain injury or arthritis. Speech can become slightly slurred, a symptom known as dysarthria, but this is often attributed to tiredness or stress. A stumble on an uneven pavement or a sudden trip on the stairs could be put down to simple clumsiness. None of these events on their own would lead a general practitioner to immediately suspect a rare neurodegenerative disease. Doctors are trained to investigate the most probable causes first, a logical clinical approach that unfortunately consumes valuable weeks and months when the underlying illness is MND. The ambiguity is the enemy.
This process of elimination forms the core of the diagnostic delay. A patient with a weakened hand might be referred to an orthopaedic specialist. Someone with difficulty swallowing, a condition called dysphagia, may see an ear, nose and throat consultant. Each specialist will conduct their own investigations, often running tests that come back negative, before the possibility of a neurological cause is considered. It is only then that a referral is made to a neurologist, the one doctor who can provide a definitive diagnosis. This usually involves complex examinations, including electromyography (EMG) tests which use needles to measure the electrical activity of muscles, and nerve conduction studies. Getting these appointments can take months. The system is sequential. It is not built for speed.
This lost time has immense consequences. It is more than just a period of anxious waiting. It is a critical window during which patients could be accessing specialised support, making adaptations to their homes, and preparing financially and emotionally for the future. A faster diagnosis gives people agency. It gives them options. For some, it might mean the opportunity to join a clinical trial for a new therapy, something that is often only possible in the earlier stages of the disease before significant function is lost. The delay effectively closes these doors for many. While family and friends watch helplessly as symptoms worsen, the patient is left in a state of limbo, denied the clarity that a diagnosis, however devastating, can bring. The foundation's new programme is aimed squarely at shortening this period of damaging uncertainty. It hopes to give people back that lost year.
The mouth can show the first signs
The mouth holds the first clues. For many, it starts there. The logic of including dentists in the fight against motor neurone disease is both unusual and clinically precise. It is based on a specific form of the condition known as bulbar onset MND. This variant accounts for around a third of all diagnoses. In these cases, the disease does not begin with a weakened limb or a stumble. It begins with the muscles controlling speech and swallowing. These are the muscles of the mouth, the jaw, the tongue and the throat. A patient attending a check up at their local practice in Perth or Portsmouth may have no idea anything is wrong, attributing a slight change in their voice to a cold, or difficulty chewing to being tired. The dentist, however, has a unique perspective. They are looking for different things. They are trained to see what others miss.
During a routine examination, a dentist is granted an unobstructed view of this critical area. They are not simply looking for tooth decay or gum disease. They are observing the function and structure of the entire oral cavity. The training offered by the My Name'5 Doddie Foundation equips them to spot the subtle tell tale signs of neurological distress. One of the most significant of these is tongue fasciculations. These are small, involuntary ripples or twitches under the surface of the tongue, caused by the dying nerves firing randomly. They look like a bag of worms. To the untrained eye, they are almost invisible and a patient cannot feel them, but to a professional looking directly at the tongue and asking the patient to move it, they can be a clear red flag. A dentist might also notice a wasting of the tongue muscle or the muscles around the jaw, a clinical sign of atrophy that suggests a deeper problem.
Speech is another vital indicator. The conversation between a patient and a dentist is usually brief and functional. ‘Open a little wider’. ‘Rinse for me now’. Yet it provides a crucial sample of a person's voice. Early bulbar MND can cause dysarthria, which is a slurring or slowing of speech. It happens because the muscles of the lips, tongue and palate are too weak to form words correctly. A dentist might notice that a patient’s speech is less clear than it was at their last appointment six months ago. They might hear a new nasal quality to the voice, as weakened palate muscles allow air to escape through the nose during speech. These are changes that friends and family might gradually get used to, but which stand out in the context of a clinical assessment. The dentist is not being asked to make a diagnosis. They are being asked to be suspicious.
The entire purpose of the scheme is to shorten the journey to a neurologist. It is an exercise in informed pattern recognition. A dentist spotting tongue fasciculations and slurred speech in the same patient is not expected to say ‘I think you have motor neurone disease’. Instead, the training provides them with the knowledge and the confidence to act. It encourages them to ask a simple question. ‘Have you noticed any other weakness or twitching?’. It empowers them to write a direct and urgent referral letter to the patient’s GP. This letter would not be a vague note about slurred speech. It would be a specific communication, highlighting a combination of clinical signs and raising the possibility of a serious underlying neurological condition. This single action could bypass months of appointments with other specialists. It could place the patient on the correct diagnostic pathway immediately. It transforms the dental chair from a place of treatment into a point of early detection.
The work continues for Doddie Weir
The foundation carries his name. Doddie Weir. He was a Scottish international rugby player. Weir was unmistakable on the pitch, a six foot six inch lock forward who played 61 times for his country between 1990 and 2000. He was a giant of the amateur and professional eras. He played for Melrose, Newcastle Falcons and the Border Reivers. His playing kits, often incorporating his family tartan, were famous. People knew him.
In 2016, everything changed. Weir announced he had been diagnosed with motor neurone disease. He was 46. He decided to establish a charity. The My Name'5 Doddie Foundation was launched just a few months later, the number five a reference to the jersey he wore for most of his career. Its purpose was clear. The foundation exists to fund research into the causes of MND and to investigate potential cures, while also giving grants to help individuals and families affected by the fatal condition. It has two goals. A cure and a life. The foundation has committed over £11 million to research projects since its creation.
Weir became the public face of the fight against MND in Britain. He refused to hide. He gave interviews and appeared in documentaries, allowing the public to see the progressive and debilitating effects of the disease on his own body. He did this to raise awareness. He raised millions. His work was recognised with an OBE in 2019 for services to rugby, motor neurone disease research and the community in the Scottish Borders. He campaigned relentlessly, meeting politicians to push for more investment and faster action, even as the disease increasingly confined him to a wheelchair and stole his voice. His physical presence diminished. His influence grew.
Doddie Weir died on 26 November 2022. He was 52. The work did not stop with his death. This new initiative to train dentists is a direct part of his legacy, a practical and focused project aimed at tackling a specific problem that patients face. It is an example of the foundation continuing the mission he started. He created an organisation designed to outlast him. The charity he founded continues to fund scientific research and patient support, powered by the momentum he generated and the structure he helped to build. The fight goes on.
Success depends on the frontline
The programme is voluntary. This is the central challenge. Its success depends entirely on frontline healthcare professionals who are already working under immense strain. They must choose to take part. The course itself is free. Their time is not. General practitioners and dentists in the United Kingdom face unprecedented pressures, a reality that could hinder the scheme's adoption before it has even properly begun. Many will question if they have the capacity. They are very busy.
Consider the general practitioner. The British Medical Association has warned for years that the system is in crisis, with doctors routinely managing workloads inside appointment slots that last, on average, just ten minutes. Ten minutes. That is a short time to assess a patient, make a diagnosis, and agree a course of action for a common ailment, let alone to begin contemplating the subtle signs of a rare neurological condition. The NHS waiting list in England stood at 7.57 million in July 2024. This number forms the backdrop to every single consultation in the country. The pressure is immense. The situation in NHS dentistry is equally severe, with a 2022 BBC investigation finding that nine out of ten practices were not accepting new adult patients for treatment. Finding a dentist is hard. Getting an appointment can be harder. The question is whether a professional, faced with a queue of patients and mounting administrative tasks, will find the space to complete an optional training module.
The prize for overcoming these hurdles is significant. It is time. For a person with motor neurone disease, a faster diagnosis is the most valuable asset they can acquire. The MND Association confirms that the average period from the first appearance of symptoms to a final neurological confirmation is twelve months. A full year. That is a year of uncertainty and anxiety for patients and their families, a diagnostic odyssey of referrals and tests while the incurable condition progresses. An earlier referral from an informed dentist or GP could shorten this delay dramatically, offering a patient the chance to access specialist care, support services, and palliative planning much sooner. It provides an opportunity to make choices. It could also open the door to clinical trials, such as the major UK based MND-SMART trial, which seek to test new medicines. These trials often have strict criteria for entry related to the timing of diagnosis.
The ultimate success of the Doddie Weir foundation's plan will be decided in thousands of individual surgeries and dental practices across Britain. It is a contest between the ideal of improved patient care and the harsh reality of a health service struggling with demand and resources. The training aims to give clinicians a new tool. Will they have the time, the energy, and the opportunity to use it? The choice rests with them.
Sources. Independent UK: Dentists and GPs offered training to spot early MND signs in UK first. Evening Standard: Dentists and GPs offered training to spot early MND signs in UK first.
Analysis. Drafted with AI assistance from the sources listed above and reviewed by an editor before publication. Jnews links to the organisations it writes about.
