NZ’s shock motor neurone death rate

Mortality from crippling disease highest in the world, international study finds

New Zealand’s motor neurone disease death rate is the highest in the world and five times the global average, a new study has found.

Experts warn this shock finding should be a major wake-up call for healthcare systems and research funding agencies to up their game.

The Global Burden of Disease (GBD) study — the world’s largest scientific effort to qualify the health loss from more than 300 major diseases, injuries and risk factors — found the mortality rate for MND in New Zealand was as high as 2.2 deaths per 100,000 people.

That’s just ahead of Australia and the United Kingdom, and well above the global average of 0.46 deaths per 100,000 people.

In New Zealand, the risk of developing the crippling condition — which takes away a person’s ability to move, speak, swallow and breathe — was one in 300, and most died within 15 to 20 months of diagnosis.

The cause for the disease was yet to be discovered, which means the reason New Zealand was top of the chart was also unknown, Auckland University of Technology (AUT) professor and world-renowned neurologist Dr Valery Feigin said.

Feigin said the Government needed to take a better look at funding research priorities because neurological disorders were the leading cause of disability in the world and the burden was growing.

The shortage of neurologists in New Zealand was also likely to be a contributing factor that needed to be addressed. Wait times for a patients with MND to get a consultation with a specialist was up to 15 months, Feigin said.

“The disease cannot be cured but an early diagnosis can help slow progression down.”

A 2015 study estimated 77 neurologists were needed to meet patient demand. Feigin said this was about three times the amount of neurologists available.

Ian Powell, executive director of the Association of Salaried Medical Specialists, said overall New Zealand’s specialist workforce for public hospitals was at a crisis and had

been an ongoing problem.

“A shortage in neurologists would absolutely be the reason for the significant wait times.”

Powell said this problem was getting worse as the Government had not yet formed a coherent strategy to assess that workforce demand.

“These specialists were not only short but also weakened with a 50 per cent burnout rate.”

Feigin said overall there needed to be more services available — neurologists and “hospital beds, outpatient rehabilitation services and support systems”.

With 3600 collaborators in 145 countries, the GBD study has helped transform healthcare policy.

These findings come amid the Global Burden of Disease Brain Summit being held in Auckland this week for around 150 leading researchers from around the world.

Health Minister David Clark said the GBD study generated important insights into health and wellbeing. “I look forward to learning more about the GBD’s most recent findings.”