In the aftermath of the death of their three-year-old, a West Auckland family are trying to find ways to support the whānau of dying children.
It comes as palliative care specialists say their services are on the ropes.
Mum Michelle Woods, dad Warwick and elder sister Scarlett lost Frankie to an aggressive form of brain cancer in April 2021.
"He was loud, he was funny and he was sweet and caring. He loved his big sister Scarlet and he loved Fireman Sam, he was super passionate about anything fire truck or rescue," Michelle said.
It's partly that special kind of toddler-inspired devotion to firemen that's helped focus the Woods' fundraising efforts.
A Givealitle page has been set up to help provide financial support for parents who have a child with a terminal diagnosis.
"Frankie to the Rescue came about because of his love for helping people.
"It's often the children that have a non-cancer diagnosis that really struggle for support.
"Sometimes a parent can't work so finances are really tight. So whilst we can't pay the mortgage, we can do some things like give them a meal, pay for some petrol for appointments, buy some toys for children or put some smiles on faces."
The project was also inspired by Gemma, a palliative care nurse from Starship Hospital, and her staff.
"You know, it's pretty heavy conversations that you're having, and so I think they were really patient with us and guiding us when we were ready to hear stuff."
So far their efforts have raised nearly $15,000 - the Woods say they were "heartbroken" to hear that nurses often have to reach into their pockets to pay for toys and that their experience with the palliative sector isn't available to everyone.
Their efforts come at a time when hospices, doctors and nurses are banding together to demand what they say is more equitable support from the Government.
The newly formed lobby group Palliative Care Collaborative Aotearoa (PCCA) has written to Andrew Little asking for a meeting. They are calling for change across six key areas including:
- funding a national approach to the care of dying babies, children and young people
- increasing funding, strategy and training
- increasing awareness to families of what support is in place
- and increased regional and cultural accessibility to services.
"You will be well aware of the distress that the state of palliative care in New Zealand has caused for countless everyday New Zealanders.
"We are under-resourced and underfunded, and the result is an essential health service that is not accessible to many depending on where they live, and thus thoroughly inequitable," said PCCA.
"We have many fine professionals and volunteers in our ranks and yet we are unable to offer our quality palliative care to all New Zealanders when it is most needed."
Hospice New Zealand chief executive Wayne Naylor signed the letter on behalf of the PCCA saying: "Our profession is desperate."
Health Minister Andrew Little said he had received the letter and was awaiting advice on the issues the PCCA had raised.
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