Report reveals motor neurone disease patients experience long delays in diagnosis and getting the right help

Posted: 01/06/2016

A new survey by the MND Association has found that one in five people diagnosed with motor neurone disease in the past three years waited more than a year to see a neurologist.

The survey report, which was based on the responses of over 900 patients in England, Wales and Northern Ireland, found that patients are experiencing delays in getting a diagnosis and accessing the right help.

More than half (52%) of the patients said they had been referred to other professionals such as physiotherapists, orthopaedic surgeons or ear, nose and throat specialists first and 14% waited over a year to see a neurologist. Furthermore, two in five of the patients surveyed said they went to their GPs at least three times before a referral to a neurologist was made.

Motor neurone disease is a progressive, incurable disease that attacks the motor neurones in the brain and spinal cord, which leads to muscle wasting. It is very difficult to diagnose and there is no single diagnostic test. The symptoms can be similar to other conditions and patients may spend months undergoing unsuccessful treatments before motor neurone disease is identified.

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.” She also recognises it is a challenge for GPs to diagnose the disease as they might only see one person in their career with the condition.

The Association urges GPs to be vigilant in looking out for the symptoms and making an urgent referral to a neurologist to ensure that people get the appropriate help as soon as possible. It has also put a scheme in place together with the Royal College of General Practitioners (RCGP) to help GPs spot signs earlier. Although this is reportedly having some success, RCGP leader, Dr Maureen Baker, has said the constraints of a standard 10 minute consultation understandably add to difficulties in reaching a diagnosis.

Helen Hammond, a member of the Penningtons Manches clinical negligence team, said: “The symptoms of motor neurone disease can be varied to begin with and develop slowly over time. The findings highlight that more needs to be done to help GPs recognise the symptoms as soon as possible.”

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