The Star: April 18, 2024

The Star Thursday April 18 2024
4
NEWS
Latest Canterbury news at starnews.co.nz
Plea for greater understanding
• By Chris Barclay
AS PAUL BARTON’S wife
succumbs to Motor Neurone
Disease, he is pleading for the
Ministry of Health to increase its
efforts to study potential causes
of the incurable illness.
Barton has launched a petition
seeking MND to be classified as
a notifiable disease so the ministry
can collect more data on a
sickness which claims about 120
Kiwi lives a year.
If the Englishman’s initiative
is successful, a more comprehensive
approach to MND will be a
foundation of Ally’s legacy.
She was diagnosed with MND
in 2021, two years after symptoms
developed as she worked as
an intensive care unit nurse in
Sydney.
“Now she’s trained me to nurse
her,” said Barton, her full-time
carer.
He wants MND notifiable so
each case must be reported to
the ministry, a stipulation which
ideally makes it possible to detect
factors common across multiple
diagnoses.
“MND affects everyone in different
ways. That’s the frustrating
part because they (doctors)
say: ‘We don’t know why’. They
should be investigating links,”
he said.
When a New Zealander is
diagnosed with MND there is
an optional registry, but Barton
believes recording details would
be a low priority for a new
sufferer.
“If you’ve just been told you’ve
got 2-5 years to live, you’re so
overwhelmed you’re not going
to give a s**t about a register,” he
said.
Barton suspected MND was
not already notifiable because
it is not infectious or a risk to
public health, a view vindicated
by Ministry of Health – Manatū
Hauora deputy director of public
UK HOLIDAY: Paul and Ally Barton visited Roche Abbey in his native Yorkshire in England
last Christmas. The couple were married in Sydney during the Covid-19 pandemic in 2020
and then returned to New Zealand as Ally’s MND symptoms worsened.
health, Richard Jaine.
“Making a disease notifiable
is aimed at assisting the surveillance,
monitoring and response
to a disease that presents a risk
to public health. Mostly this
includes infectious diseases,” he
said.
“As such, there are no plans to
make Motor Neurone Disease a
notifiable disease.”
However, the ministry’s
current list of notifiable diseases
includes lead absorption
(poisoning) and decompression
sickness, which covers injuries
caused by a rapid decrease in air
or water pressure.
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