Spencer’s battle with inoperable brain cancer has left his parents battling the health system

Spencer’s battle with inoperable brain cancer has left his parents battling the health system
  • PublishedSeptember 13, 2023

Barely two months ago, Spencer Barton was an active and energetic five-year-old who enjoyed kicking a football and jumping on a trampoline.

But on July 3, his life — and the lives of his mum, dad and sister — changed in the most confronting of ways because of a shocking and entirely unexpected diagnosis.

After showing signs of sleepiness, Spencer began vomiting, and Ms Loughhead decided to keep him home from school.

But his condition deteriorated — within hours, he was undergoing emergency surgery to reduce swelling in his head.

“He was sent for a CT scan and that’s when they told us there’s a mass in his brain,” Ms Loughhead said.

A woman looks out of the frame, with her hand resting on the side of her head.
Laura Loughhead said her son’s cancer is inoperable.(ABC News: Che Chorley)

Spencer was diagnosed with diffuse midline glioma — a highly aggressive tumour — that left him unable to walk, talk or use the right side of his body.

“It is a life-limiting cancer. There has been a zero per cent survival rate, so we were essentially told there’s no treatment, there’s nothing we can do,” Ms Loughhead said.

“Within two weeks he had three brain surgeries but the actual tumour and the mass in his brain is inoperable. They cannot touch it due to its location in the brain stem.”

For Ms Loughhead and her husband Scott Barton — who are originally from Brisbane and Sydney respectively — the past 10 weeks have been a “whirlwind” and a “blur”.

Both have taken time off work to care for their son at their home at Aldinga Beach along Adelaide’s southern coast.

“There was a point there where they pretty much said to say goodbye — and he just worked his way back.”

But Spencer’s health has left his parents facing other, more bureaucratic, battles — including to secure the support and equipment they need to help their son stay mobile.

Spencer Barton in a wheelchair with a blanket over his lap sitting outside with his mum
Spencer’s parents are battling to get access to equipment and other supports.(Facebook: For Spencer)

His parents have said that, while Spencer was accepted as a National Disability Insurance Scheme (NDIS) participant, their efforts to obtain funding through the scheme for therapies and equipment — inlcuding to help him get in and out of bed, the bath and their car — have been rejected.

They said they were told that is because his disabilities are the result of an active cancer.

“He’s able to talk now but that’s only within the last week or two. He’s still not swallowing properly, he’s being fed through a nasogastric tube,” Ms Loughhead said.

“Most of the supports we’ve had are through a lot of charities or just friends of family who had heard about Spencer and what had happened, and things like equipment loaning, and we had a ramp built by someone.

“But these things we wouldn’t have been able to access without them being offered to us.”

A man in a red-checked shirt looking solemnly down the barrel of the camera.
Spencer’s dad Scott says his family will continue to fight.(ABC News: Che Chorley)

Mr Barton said it felt like his family had “fallen through a crack”.

“We just want some physio to sort of help and get him back to where he can get to — if he could walk again, that’d be unreal,” he said.

“We’re enjoying the time with him but we’re spending a lot of time doing things that we don’t think we should be wasting our time with.

“We’ve got the palliative care stuff there in place for when that time comes and helping with those bits and pieces, but we’re looking for help with his disability now and to enjoy his quality of life.

“We should be spending time with him being mum and dad, not everything else.”

‘Truly heartbreaking’ battle, government says

Spencer’s family has expressed deep gratitude for the work of medical staff at the Women’s and Children’s and Royal Adelaide hospitals as well as donations from friends.

Spencer Barton lying in a hospital bed. He is smiling with his sister next to him
Spencer has undergone surgery to reduce brain swelling.(Facebook: For Spencer)

But in their bid for NDIS assistance, they have reached out to the state government and have secured a meeting with Health Minister Chris Picton, who has described their situation as “truly heartbreaking”.

“I look forward to my meeting as a local southern suburbs MP with Spencer’s family to work through how they can get the assistance they need,” Mr Picton said in a statement.

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“If there are gaps in the provision of NDIS and disability support then I will certainly take that up with my federal counterparts.”

SA Health has said it is committed to “working with Spencer and his family, and other government agencies to continue to provide support to Spencer and his family”.

“The Women’s and Children’s Health Network Palliative care service is working closely with Spencer and his loved ones, to organise the treatment and equipment he needs,” SA Health said.

In a statement, federal NDIS Minister Bill Shorten extended his “deepest sympathies to Spencer and his family”, but said responsibility for the matter rested with South Australian health authorities.

“I expect the NDIA and South Australian Health can work together to ensure Spencer is receiving all the disability supports he needs in this extremely difficult time,” Mr Shorten said.

“It is not acceptable to leave Spencer  and his family in the lurch while levels of government argue about who is responsible.

“I will sort this out from my end and send South Australia an invoice for their obligations.”

The National Disability Insurance Agency (NDIA), which oversees the NDIS, said the agency was committed to “ensuring participants and their families receive the disability-related supports they need”.

“A review of Spencer’s NDIS supports is underway and we will continue to work closely with Spencer’s family and South Australian Health on this,” an NDIA spokesperson said.

A mother and father with a child in a wheelchair, and another child on a swing.
Spencer’s family is committed to giving him the best life possible.(ABC News: Che Chorley)

In the meantime, Spencer and his family can do nothing but wait.

“We try to build him up as much as we can and we’ve just said to him you’re the bravest boy that we know,” Ms Loughhead said.

“It’s a waiting game … [and] each day’s a wasted day without help,” Mr Barton said.

“We want the best life for him. He hasn’t given up and neither have we.”

SOURCE: ABCNEWS

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