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Hui called to bring light to motor neurone disease

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Hui called to bring light to issues faced by people living with motor neurone disease.

Every year in New Zealand, over 130 people die from motor neurone disease (MND). Also known as ALS or ‘Lou Gehrig’s disease, MND attacks the muscles that enable us to move, speak, swallow and breathe until they gradually stop working. At any one time, MND affects the lives of over 350 New Zealanders and their families.

New Zealand has the highest known rate of MND in the world, and what’s vital as this rapidly progressing disease takes hold on people, is access to the right care and information.

In light of this, MND New Zealand called the first motor neuron disease Hui, held in Parliament yesterday, focused on discussing ways to standardise care for people living with MND.

Established in 1985, this small not for profit organisation provides support and advocacy for people with MND and their families.

As the only national organisation supporting people with MND and their families, MND New Zealand is uniquely placed to understand the variances in care and support.

55 people gathered at parliament including representatives from MND New Zealand, health professionals, MND New Zealand Patron, Hon Ruth Dyson MP, Minister for Health, Hon Dr David Clark, as well as representatives from district health boards across New Zealand, to discuss ways to standardise care for people living with MND.

The Hui is the brainchild of Dr Claire Reilly, Community and Research Advisor at MND New Zealand, who was also diagnosed with MND thirteen years ago.

Dr Reilly says: “Having worked in the New Zealand health system, I have an advantage knowing which services I need and how to access them. This is not the case for most of our community. Navigating the health system can be daunting for people with MND & whanau. Our community have told us that they want national standards of care for people with MND, that are equitable for everyone. Today’s Hui is a first step towards achieving that goal.”

A positive outcome from the Hui was the formation of a working group tasked with developing national guidelines for care of MND patients in New Zealand.

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