New research has revealed that one in five people with motor neurone disease (MND) have to wait at least a year to see a neurologist in a bid to be diagnosed.
The MND Association released the results of the report to mark the start of MND Awareness Month in June.
The responses from 900 patients in England, Wales and Northern Ireland, shows the roundabout ways many people have to take towards diagnosis.
A total of 52 per cent of the respondents said they had been referred to other healthcare specialists before being sent to a neurologist. Orthopaedic surgeons, physiotherapists, and Ear, Nose and Throat (ENT) specialist appointments all lead to delays in people getting early care.
Even when they did see a neurologist, one in seven experienced a delay of a year or more in receiving a confirmed diagnosis.
As a result, the MND Association has called for GPs to be more vigilant to the condition, although they acknowledged that diagnosis was difficult.
Sally Light, chief executive of the charity, said: “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. However, there are things we can do to improve this.
“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. As an Association we will continue to strive to improve care for people affected by MND, raising wider awareness of the devastation of MND and also fund global research towards treatments and a cure.”
More than half of those with the disease die with two years of diagnosis, but swift diagnosis and action can ease symptoms.
Approximately one in 50,000 people will develop MND in any one year, with more than 5,000 people in the UK affected at any one time.
MND causes a progressive weakness of many of the muscles in the body; motor nerves become damaged and eventually stop working.
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