One in five people who have been diagnosed with motor neurone disease in the last three years have had to wait a year or more to be referred to a neurologist, a study from MND Association has shown today.
The research has shown that more than half of these people had been referred to other healthcare professionals first, most commonly physiotherapists, orthopaedic surgeons or Ear Nose and Throat (ENT) specialists instead of straight to a neurologist.
MND Association added that the lack of a definitive test for MND continues to further add to the delays, even after someone is seen by a neurologist.
The study showed that whilst over a quarter of patients received a confirmed diagnosis within a month of seeing a neurologist, almost one in seven (14%) experienced a delay of a year or longer.
This slow diagnosis hinders patients from getting the right help to manage the diseases’ rapid progression, and delays them from putting the appropriate care in place.
A third (32%) of those who took part in the research also said they hadn’t been able to get important home adaptations done when they needed them; essential changes like stair lifts, ramps and door-widening to accommodate powered wheelchairs.
Sally Light, Chief Executive of the MND Association, said: “This fatal and still incurable disease kills more than half of those diagnosed within two years. 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 3 months.
“As traumatic as a diagnosis of MND must be, once you know why symptoms are occurring you can make more informed decisions for you and your family. Swift and accurate diagnosis, most commonly from a neurologist, is crucial in ensuring the needs of people living with MND are met from the earliest possible stage.
“The problem is, there’s still no single diagnostic test for MND and we appreciate that it is also challenging for GPs, who might only see one patient with MND in their whole career. Symptoms can be similar to other conditions, so people can spend months seeing various specialists and undergoing unsuccessful treatments until MND is suspected.
“We work very closely with healthcare professionals including the Royal College of General Practitioners (RCGP) to emphasise the rapid progression of the disease and the need for urgent referral to a neurologist. Together we’ve developed a tool (called Red Flags) to help GPs spot the signs earlier and avoid referring people to the wrong services.
“The survey results suggest this might already be helping – those diagnosed in the last year have had on average faster referrals than in the past, but there’s still too many people waiting too long.”
