Motor neurone disease patients facing long waits, MND Association warns

The Motor Neurone Disease Association (MND Association) has released new research that suggests patients diagnosed with the disease are facing long waits for specialist treatment.

According to the research, which was released to mark the start of MND Awareness Month, one in five patients diagnosed within the last three years have had to wait a year or more to be referred to a neurologist.

Of these, 52 per cent had been referred to other healthcare professionals first who were not as well equipped to deliver accurate care - such as physiotherapists, orthopaedic surgeons or ear nose and throat (ENT) specialists.

The MND Association has also cautioned that once patients have been seen by a neurologists many still face further delays. The research found that, while 27 per cent received a confirmed diagnosis within a month, 14 per cent faced a further delay of a year or longer.

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 per cent reporting that it took over three 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.”