When things go really wrong they are the last line of defence for the most vulnerable, but a survey of almost 700 family carers shows how invisible and unsupported these New Zealanders have been during Covid-19.

Almost half a million carers support family members who are frail, unwell, or have a long-term health condition or disability. The pandemic disrupted access to home care, respite, day programmes and other services, and family carers stepped up, providing intensive support for weeks with little outside help.

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Released today, the report calls on the Government to improve support and respite for carers, and better recognise this large population in the work to follow the release of the New Zealand Health and Disability System Review report.

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“We are lucky in New Zealand to have emerged from lockdown without more Covid cases. We have a chance to prepare better for future events by fixing some of the problems carers raised in our survey.”

These included poor access to information to keep themselves and vulnerable family members safe; no information or access to Personal Protective Equipment until risk Level 2; sudden changes to key respite and funding supports that confused carers at a critical time; and poor information and coordination so carers could access breaks after weeks of caring as New Zealand emerged from Covid-19 lockdown.

Hilsgen says widespread cases of Covid-19 would quickly overwhelm the formal system.

“Carers have told us what would sustain them and the vulnerable people they support through an ongoing pandemic. We are working with the Government to address gaps carers identified in the report, and to help them plan ahead to deal with what may yet come with Covid-19.”

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Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

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