One in five people diagnosed with motor neurone disease (MND) in the last three years have had to wait a year or more to be referred to a neurologist, says an MND charity.
New research released to mark the start of MND awareness month shows that of the patients forced to wait for a referral, 52% had been referred to other healthcare professionals initially.
These healthcare professionals were commonly physiotherapists, orthopaedic surgeons or ear, nose and throat specialists.
However neurologists are the best professionals to deliver accurate diagnosis of MND, even though the lack of a definitive test for MND adds to delays.
The research showed that while 27% of patients received a diagnosis within a month of seeing a neurologist, 14% experienced a delay of a year or longer.
Some 32% of the 919 people who took part in the research also said they hadn’t been able to get important home adaptations done when they needed them, including 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.
“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.
“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.”
Dr Maureen Baker, chair of the Royal College of GPs (RCGP), said early diagnosis is “essential” but “it is incredibly rare and difficult to diagnose in a primary care setting, particularly within the constraints of a standard 10-minute consultation.
“When you consider that GPs across the UK make in excess of 1.3 million patient consultations everyday, it brings home just how difficult identification of such a rare condition is at initial presentation.
Baker added that the RCGP is pleased to work iwht MND Association to develop resources for GPs but she said “these results show that more needs to be done ensure delays are minimised for patients who have suspected MND once they have been referred by a GP, to ensure the best possible outcomes for them and their families”.
The poll was the largest survey of people living with MND in England, Wales and Northern Ireland.