Te Whatu Ora Reset Standing In The Way Of People With Rare Disorders Getting The Care They Need

23 October 2024

Rare Disorders NZ is deeply frustrated that Te Whatu Ora | Health NZ is using the current reset of the health system as a reason to not begin planning how they will implement life-changing improvements to the health system for people living with a rare disorder, despite having the responsibility to do so as an implementing agency of the Rare Disorders Strategy.

“The rare disorder community has been calling for action for over 20 years to improve services for people living with a rare disorder. The Government has finally delivered a Rare Disorders Strategy, but unless it is implemented it will not be worth the paper it’s written on,” says Chris Higgins, Chief Executive of Rare Disorders NZ.

In July, the Ministry of Health released New Zealand’s first Rare Disorders Strategy, setting the direction for health entities to better support people living with a rare disorder.

The Strategy was committed to by the previous Government after years of advocacy from the patient community. It took two years to develop and was informed by the lived experience of the rare community.

Rare Disorders NZ is launching a petition today calling on Te Whatu Ora to take action to develop an implementation plan without further delay.

“Many of the actions that can be taken do not involve new substantive programmes of work. Rather it’s about existing services being provided more effectively to people with rare disorders,” says Higgins.

Deb Beazley knows all too well how important it is to have accessible care pathways in the health system for rare disorders. Deb lives with Complex Regional Pain Syndrome (CRPS), known as one of the most painful conditions in the world. It can affect anyone at any age – for Deb her journey with CRPS began in mid-life when she ruptured a calf muscle at a kids’ rock and roll dance fundraiser she was running.

“The injury changed my life. One song, one dance was all it took. The injury caused my central nervous system to malfunction and triggered my brain to keep sending out pain signals, constantly. It took four and half years to finally get a diagnosis and by that time the damage was irreversible,” says Deb.

“If I had received treatment within the first 6 months, I could have fully recovered and gone back to leading a normal life. Instead, I will now battle with mobility issues and pain for the rest of my life. It has impacted my work prospects, my relationships, my mental health, and to know that all this could have been avoided is gutting,” says Deb.

The specialist pain services Deb needed to rehabilitate her injury are available in New Zealand, but due to a lack of coordination of care or pathways in the health system for rare disorders, Deb was not referred to the correct pain services.

“There are actions that can be taken now to improve care pathways for people with rare disorders, to improve their health and wellbeing and reduce their dependence on Government services. We just need the will from the Government to take action, beginning with engagement and an implementation plan by Te Whatu Ora,” says Higgins.

To sign the petition, go to rdnz.nationbuilder.com/petition.

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