Paediatric Palliative Care Nurse

A dedicated paediatric palliative care nurse will soon begin working with children and their families in Canberra.

The ACT Government has announced $2.1 million in funding over the next four years to expand palliative care services.

Assistant Health Minister Meegan Fitzharris said the position was an important addition.

“This position will be dedicated to understanding the special needs of children and their families, particularly working with the families who often may have other siblings that need to be considered in the palliative care stages,” she said.

“While children needing treatment for cancer usually go to Sydney, when they return to Canberra having someone there to help support them navigate local services can be vital.”

The nurse will maintain a close link with the Sydney Children’s Hospital network.

“I would like to acknowledge the Wills and Anthoney families in memory of their children, Benny Wills and Dainere Anthoney, who spoke with me about the need for this service,” Ms Fitzharris said.

“In their experiences they had identified a gap in the health services in the palliative care space.”

New funding will also support palliative care education for health professionals to strengthen their skills in end-of-life care and support patients to actively make end-of-life decisions.

Palliative Care ACT General Manager Gayle Sweaney said the package would make an enormous difference to young families.

“It’s a real gap in services for the ACT, and having a dedicated nurse is going to be really beneficial,” she said.

“That distance, the stress, the expense is something they don’t need while they’re going through what they’re going through.”

Ms Sweaney said the broader funding for education was also critical to the sector.

“It’s a bit like the leaky hole in the roof. We only think about it when the rain comes,” she said.

“Educating people is about empowering people and getting them to understand that process better.”

This announcement ‘touches our hearts’, family says

Yvonne Anthoney’s daughter Dainere died in 2013 after a battle with brain cancer aged 15.

She said a paediatric nurse would be a major support for families at a difficult time.

“[It’s] really important because there wasn’t a dedicated palliative care nurse for children and adolescents when Dainere was going through her journey,” she said.

“Children who are living with a life-limiting disease have a totally different area of need to what adults do.

“To have that particular nurse that can work with the children, to work through their pain, through their symptoms, through their psychological feelings and to work with their families as well is something that is huge and very relevant.

“It touches our hearts very much.”

Dainere’s brother Jarrett said extra support was welcome.

“I think that a palliative care specialist in Canberra would make so much of difference both for the patient and the support for all the family members as well,” he said.

The Anthoney family is holding a ‘Happily Ever After’ gala dinner later this month to raise money for Dainere’s Rainbow Brain Tumour Research fund.

“Dainere actually said that she wanted all children to live happily ever after and have a future, so, just like the Disney princesses do,” Ms Anthoney said.

‘More respite care needed for families’

The Wills family lobbied strongly for the paediatric position, having lost their 4-year-old Benny to a brain tumour in 2011.

A dedicated paediatric palliative care nurse will soon begin working with children and their families in Canberra.

The ACT Government has announced $2.1 million in funding over the next four years to expand palliative care services.

Assistant Health Minister Meegan Fitzharris said the position was an important addition.

“This position will be dedicated to understanding the special needs of children and their families, particularly working with the families who often may have other siblings that need to be considered in the palliative care stages,” she said.

“While children needing treatment for cancer usually go to Sydney, when they return to Canberra having someone there to help support them navigate local services can be vital.”

We acknowledge the traditional custodians of the land where we meet and work, the Ngunnawal people, and the many other Aboriginal and Torres Strait Islander peoples from across Australia who have now made Canberra their home. We celebrate and respect their continuing culture and the contribution they make to the life of the ACT and region.

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