Migraine Foundation Aotearoa New Zealand has begun to
publish results from its 2022 online survey, providing
much-needed data of the lived experience of people with
migraine in Aotearoa.
The migraine charity has
released nine key insight reports, with more to be released
over the coming months. Some of the reports already released
provide information about the impact of migraine on work,
migraine stigma, access to health and allied health
professional services, the perceived knowledge of health
professionals treating migraine, and feeling judged or
misunderstood because of the neurological
disorder.
“One of our key objectives when we
launched the charity last year was to support and encourage
more migraine research in New Zealand,” says Dr Fiona
Imlach, co-founder of Migraine Foundation Aotearoa New
Zealand.
Dr Imlach is also an epidemiologist and
researcher and is leading the analysis of the
data.
“We had 530 people complete our survey, which
was the first comprehensive online survey ever run in New
Zealand,” Fiona says.
“With migraine estimated to
affect 642,000 people in New Zealand and the fourth largest
cause of disability in this country, research into the
reality and challenges of living with migraine was well
overdue.”
From reports already published, the survey
has identified many of the challenges people living with
migraine face, including:
- Only 17% of respondents
reported no work-related difficulties due to migraine; one
third reported working full time but not working at their
best; 14% reported they were unable to work. - Seven
out of ten respondents reported feeling judged or
misunderstood because of migraine disease in the
workplace. - A high 42% of respondents said they
sometimes, often or always felt like they were judged or
misunderstood because of migraine disease by health
professionals, with some reporting being treated as ‘drug
seekers’ and that the symptoms of migraine weren’t
recognised as disabling. - Over half of respondents
had been unable to see a neurologist, despite wanting to
(most referrals for migraine to a neurologist are turned
down in the public health system and most migraine patients
have to see a neurologist privately). - The biggest
barriers for people unable to see a health professional for
migraine were long waiting times, the expense and because
they were unable to get or declined an
appointment.
The charity also provided an
opportunity for respondents to describe their experience of
living with migraine in their own words, which will be
shared in the series of reports. These voices of people with
migraine paint the true disability of migraine disease and
the daily challenges people have living with a neurological
condition.
Next steps
Migraine Foundation
Aotearoa New Zealand is continuing to write and release key
insight reports from the survey, which can be found on their
website here:
https://www.migrainefoundation.org.nz/survey.
The
charity has already used some of the findings to support
their application to Pharmac to fund Emgality
(galcanezumab), a new, migraine-specific medication
currently funded in many other OECD countries.
The
reports also support ongoing efforts to raise awareness of
the impact of migraine disease, advocate for improved access
to treatments and health professionals, support people with
migraine and their carers and help improve the migraine
research gap in Aotearoa.
Migraine Foundation hopes
the survey results will help fill a gap in New Zealand
migraine research and highlight the need for improved
services for people with migraine.
Find out more about
Migraine Foundation by visiting its website:
migrainefoundation.org.nz.
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