Sue Haldane, a mother of a child with a rare disorder, has spent 17 years dealing with barriers within our health system
to ensure her daughter Lizzie’s needs are met. Now Sue is determined that the journey will be easier for future
generations of New Zealanders living with a rare disorder.
Despite the low prevalence of each rare disorder, collectively they affect many families, with 1 in 17 people living
with a rare health condition – more than those diagnosed with diabetes.
Lizzie was born in 2003. She has a genetic rare disorder, 22q Deletion Syndrome, which leads to heart abnormalities,
weakened immune system and developmental delays.
Sue, on behalf of Rare Disorders NZ, has launched a Parliamentary Petition seeking essential systemic changes that would
benefit everyone within the rare disorder community, and wider society as well.
“My Petition urges the Government to acknowledge the universal challenges faced by people living with a rare disease,
and the unfairness within the current system, by committing to the long overdue development of a New Zealand National
Rare Disorder Framework,” says Sue.
“I would make no changes to Lizzie’s lovely self, but I crave many, many changes to the world she lives in.”
“For many of the 6% of New Zealanders living with a rare disorder every day is a fight, with many feeling neglected and
invisible” says Rare Disorders New Zealand Chief Executive Lisa Foster. “Currently their healthcare is fragmented,
there’s little cohesiveness in services, there’s inequitable access and high levels of stress. This leads to high
uncertainty in all aspects of their life and often no clear pathway for diagnosis, treatment and care. Many vulnerable
patients continue to fall through the cracks. As a country with a keen sense of fairness it simply doesn’t make sense to
have no formal policy or framework in place to support them”.
The recommendations of the Health and Disability System Review aim to address inequiuties in the system and yet those
with rare disorders are still not recognised as part of the changes.
Rare Disorders NZ says New Zealand lags behind almost every other developed nation by not providing a basic national
framework or set policy to support these patients and ensuring access to cohesive healthcare and simple fairness so that
the type of disease does not detrimentally affect access to care and supports. Rare Disorders NZ and its 140 support
groups are now calling for the immediate establishment of a New Zealand National Rare Disorder Framework to bring New
Zealand into line with other countries.
“Most developed countries, including Australia, the UK, EU countries and many in Asia and South America all rightly
recognise the importance of implementing a National Rare Disorder Framework, strategy or policy to ensure no-one is left
behind” says Foster. “Yet here in New Zealand, a country known for its empathy and fairness, we are falling behind. New
Zealand is one of only five nations to have no commitment to address these challenges. However, we have the opportunity
to do the right thing and develop a national rare disorder framework to change lives. The social, health and economic
cost of ignoring this issue is too high a price to pay and must be resolved”.
“There in a unique opportunity now to create a system that includes the rare disorder community by acknowledging this
vulnerable group then minimising the significant challenges they currently face,” says Lisa.
Sue has been Lizzie’s advocate, her medical officer, her education director, her social worker, her therapist, her
nutritionist, her dietician, work placement officer and retirement planner.
“There’s has been no shape or coordination to Lizzie’s care. We handle each health, education and social ‘portfolio’
separately. We tell her story again and again and again. We attain a level of health or stability – and we are
discharged. But this is a lifelong condition from which Lizzie can only be discharged by death,” says Sue.
“I want to make sure the thousands of families like ours have an less fragmented and stressful journey through the New
Zealand health system, with a clear blueprint for coordinated family care,” says Sue.
“Of course, the person diagnosed should receive laser-like focus, but primary caregivers also need a strategic support
plan and formalised care. Burning out when you are the mother of a child of complex needs is a frightening experience.”
Petition of Sue Haldane for Rare Disorders NZ: Develop a National Rare Disorder Framework.