The Japanese approach to caring for people with MND

01 December 2006

Japan’s unique approach to caring for people with Motor Neurone Disease came under the spotlight today at the 17th International Symposium on ALS/MND, being held in the country for the first time.

In Japan, many more people with MND are mechanically ventilated than elsewhere in the world. Up to 34% use tracheostomy positive pressure ventilation (TPPV) compared to a fraction of that number in other countries.

Dr Takashi Najakima, of Niigata National Hospital, explained in a session exploring international perspectives on care that ALS – the most common form of MND – was classed in Japan as a “nanbyo” condition.

Nanbyo comes from two Japanese words – nan, which means difficult and worried, and byo, which means illness. Diseases that are classified as “nanbyo” by the Japanese Ministry of Health, Labor and Welfare receive funding for clinical treatment and research. Following ALS’s classification as “nanbyo”, health insurers in the 1990s started to pay for home mechanical ventilation, making it much more widely available.

Mechanical ventilation is controversial in the care of people with MND, as it raises ethical and medical issues. The patient lives for much longer, but continues to decline, eventually reaching a “locked in” state with no muscle movement at all, and no ability to communicate. They need 24-hour care and the burden on family and health services can be immense.

But Dr Najakima said he believed that, with the right multi-disciplinary care, people’s experience of living with mechanical ventilation was a positive one. He showed case studies of people who had shown improved respiratory function and muscle strength after going on to mechanical ventilation and having a PEG (feeding tub) inserted.

He said: “TPPV isn’t only a life-sustaining treatment but also a palliation to improve respiratory muscle function and general muscle weakness.”

He added that the most important element of care for people with MND in Japan was the involvement of a number of different specialists working together in a multi-disciplinary team.

“The most important thing is that multi-disciplinary care team conference is regularly held,” he said.

Sarah Fitzgerald, Head of PR and Media
+44 (0)1604 611840
sarah.fitzgerald@mndassociation.org

The 17th International Symposium on ALS/MND is taking place in Yokohama, Japan, between Thursday, 30 November and Saturday, 2 December. The event is organised by the UK-based Motor Neurone Disease (MND) Association and hosted this year by the Japanese ALS Association (JALSA).