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Motor neurone disease patients face long wait for diagnosis

One in five motor neurone disease patients have to wait at least a year to see a neurologist

Ingrid Torjesen

Wednesday, 01 June 2016

One in five people diagnosed with motor neurone disease (MND) have to wait a year or more to see a neurologist, a survey of more than 900 people with the condition for the Motor Neurone Disease Association has found.

Two in five of the people surveyed said they went to their GP at least three times before a referral to a neurologist was mentioned. Of those who had to wait at least a year for an appointment with a neurologist, more than half (52%) were referred to other professionals first, including physiotherapists, orthopaedic surgeons and ear, nose and throat specialists.

The lack of an effective diagnostic test for motor neurone disease also means that, even after seeing a neurologist, patients with the condition still face a long wait for a diagnosis. Just 27% of patients with motor neurone disease receive a diagnosis within a month of seeing a neurologist, while 14% had to wait a year or more.

Karen Pearce, director of care at the MND Association, said: "It is notoriously difficult to diagnose, and this new research shows many face 12 months or more of anxiety and uncertainty while their symptoms worsen.

"This could be in part due to delays between a GP referral and actually getting to see a neurologist, with 16% reporting that it took over three months.”

But she added: "The problem is, there's still no single diagnostic test for motor neurone disease and we appreciate that it is also challenging for GPs, who might only see one patient with motor neurone disease in their whole career. Symptoms can be similar to other conditions, so people can spend months seeing various specialists and undergoing unsuccessful treatments until motor neurone disease is suspected. However, there are things we can do to improve this."

Ms Pearce said more needed to be done to increase the speed of referral due to the rapid progression of the disease. More than half of people diagnosed with the condition die with two years.

"Swift and accurate diagnosis, most commonly from a neurologist, is crucial in ensuring the needs of people living with motor neurone disease are met from the earliest possible stage,” she said.

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