Fyansford family fighting for RCH Colorectal and Pelvic Reconstruction

A Geelong mum is doing whatever she can to save a specialised health service she describes as a “life saver” after her son was born with a rare condition.

Oscar King, 5, pictured with mum Hannah. Picture: Alison Wynd

Fyansford mum Hannah King dares not think how she and five-year-old son, Oscar, will cope without the support of a service that now appears lost.

The Royal Children’s Hospital’s Colorectal and Pelvic Reconstruction Service (CPRS) has played a vital role in helping Oscar and his family deal with the Hirschprung disease he was born with.

“It (CPRS) was established when he was about eight months old, so we know what life was like without it and what’s it been like with it, and it’s just been a life saver,” Ms King said.

Federal government funding of $5.9m in 2019 led to its creation, but with that now exhausted and no new money in Tuesday’s budget, nor any forthcoming from the state government, the service has been quietly wound down.

Ms King and other affected families, together with a bipartisan group of state politicians, are campaigning to have it reinstated.

A parliamentary petition sponsored by Geelong-based MLC Bev McArthur has received more than 7000 signatures, while letters to new RCH chief executive Peter Steer have emphasised the need for its continuance.

Along with Hirschprung disease – a condition where the nerve cells in the lower part of the bowel do not form properly – the CPRS provided care for anorectal malformations and chronic constipation.

Hannah and Oscar King at home in Fyansford. Picture: Alison Wynd.

Ms King, a nurse herself, said the CPRS nurses were integral in helping Oscar successfully transition to primary school this year through the provision of documentation and education of staff that would otherwise have fallen back on the family.

“Oscar has been very up and down throughout his whole little life … he has been a very sick kid at times, he’s needed a lot of procedures, a lot of emergency services,” she said.

“But even though we had to present to hospital quite a lot, especially in the first few years of his life, having the CPRS as a point of contact prevented some of those hospital admissions, because you’ve got that direct line.

“You knew you would be OK because people knew your story, history, family, it just made life a lot easier.”

Ms McArthur has a personal connection with the CPRS due to her grandson being born with Hirschprung.

A parliamentary motion introduced by Bev McArthur that called on both state and federal government to keep the CPRS in its original form received unanimous support. Picture: Yuri Kouzmin.

She said RCH management wants to centralise the service, an outcome she claimed would put children’s health at risk due to the rare and complex nature of colorectal conditions.

“These families are not asking for special treatment – they’re asking for the care their children need to survive and thrive,” she said.

“The CPRS has proven that it is possible to provide world-class care in a way that supports children and their families at minimal cost and it should be applauded not disbanded.”

The RCH did not directly address whether the CPRS had closed, rather a spokeswoman said the hospital’s Department of Paediatric Surgery provided “outstanding care to all patients and families who require their services, including for patients with colorectal conditions”.

“There is no staffing or funding change to the core medical care that patients with complex colorectal and pelvic conditions receive,” she said.

Originally published as Fyansford family fighting for RCH Colorectal and Pelvic Reconstruction