Nicholas Trust has delivered world class paediatric palliative care services in the Hunter | PHOTOS

JENNY and Craig Butters’ final days with their son Nicholas were spent in a busy children’s hospital ward devoid of the comforts they needed during that unbearably difficult time.

In honour: Craig and Jenny Butters hope the paediatric palliative care rooms at John Hunter Hospital provide a more peaceful place for a child's final moments.

In honour: Craig and Jenny Butters hope the paediatric palliative care rooms at John Hunter Hospital provide a more peaceful place for a child's final moments.

More than 10 years on, the trust established in Nicholas’ honour has raised more than $1 million to establish leading paediatric palliative care services in the Hunter that are “the envy” of other Australian hospitals.

Nicholas lost his nine year battle with cancer in 2004. He was 14.

“During his dying months there was nowhere for us to remain together as a family to say goodbye to Nic, and there was nowhere his friends could say goodbye to him either,” Mrs Butters said.

“Everything was done across a hospital bed in a very small room.

“We received the best of care, but it wasn’t a place where we were left with any lasting memories. Our grief was very deep because we couldn’t share it as a family.”

Soon after, the Butters’ established The Nicholas Trust to address the lack of paediatric palliative care services in the region.

“We knew that we could make a difference, and make it better for other children and families going through the same thing,” Mrs Butters said.

“I suppose they initially saw us as the grieving parents, and thought ‘If we pat them on the back eventually they’ll go away’.

“But we didn’t go away. We established a very knowledgeable board that helped us get it over the line and we worked very closely with Hunter New England Health in ensuring that what we provided was what was needed for the children in our region.”

The money raised for the trust has been channelled into building paediatric palliative care rooms at the John Hunter Hospital, as well as spaces at Tamworth, Taree and Maitland hospitals.

It has also funded a palliative care equipment service, and its family support volunteer program aims to help normalise family life as much as possible.

“The final moments that you have with your child are so important. These services are helping people to build those final memories,” Mrs Butters said.

At the John Hunter Hospital, the trust funded the refurbishment of the school room, and its “Nicholas Room” was specifically designed for teenagers undergoing palliative care.

“We are the envy of all the other hospitals,” Mrs Butters said.

“The rooms provide enough space for a family of six to live in the hospital and not feel crowded.