Parents of children with colorectal conditions furious amid clinic’s quiet closure

“The doctors and staff have [previously] been gagged from communicating directly with the patients,” the source said of the centre’s closure.

The staff member also speculated that the move was a cost-cutting exercise. Victoria’s hospitals were last year told to clamp down on their expenses for the first time since the pandemic.

Treasury figures from late last year showed Victoria’s net debt had reached $140.7 billion and that the Allan government’s quarterly interest bill was $1.6 billion – the equivalent of $17.6 million per day.

Albury resident Mel Armstrong, who has two young girls with Hirschprung’s disease, said she couldn’t imagine life without the clinic’s specialised wraparound services.

“If it wasn’t for the psych team, I don’t think my eldest would have been able to go to school,” she said.

She added that the unit’s clinical nurse consultants were particularly helpful at identifying whether the family needed to visit their local emergency department, in southern NSW, or rush to Melbourne for speciality care.

“There are weeks when I speak to them every single day. It’s about the level of care and the thoroughness. They know our kids so well. I can’t tell you how many times I visit a regional service and they’ve never heard of Hirschsprung’s disease.”

A spokesperson for the Royal Children’s declined to respond to questions about whether the unit had been disbanded and staff made redundant but said its paediatric surgery department was dedicated to providing outstanding care to all patients and families, including those with colorectal conditions.

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

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“In 2019 the service received one-off federal government project funding. This funding was used to deliver improvements that will have a long-lasting impact on the model of care we deliver at the RCH”.

In a recent letter to parents of children who use the clinic, which was sent more than two weeks after The Age approached the hospital for comment on the closure of the clinic, Royal Children’s interim chief executive Ed Oakley and surgery boss Nathalie Webb wrote that they regretted any distress or anxiety caused by the recent changes but said the situation was “still evolving”.

“We recognise that many families would have preferred to have received information about impending changes sooner and we regret any uncertainty caused,” the letter stated.

“Patients will continue to receive Allied Health and Nursing support through … centralised teams in the same manner that children with other complex surgical conditions at the RCH receive care.”

Opposition health spokeswoman Georgie Crozier argued that hospitals would be able to afford speciality wraparound services if not for Labor’s “gross mismanagement” of the economy.

“Labor can’t manage money, can’t manage health, and it’s Victorians who are paying the price.”

In 2022, an 11-year-old boy from Gippsland passed away following complications of a bowel obstruction caused by chronic constipation.

A paediatric gastroenterologist had earlier suspected that he might have Hirschsprung’s disease and planned for further investigation with surgical referral, according to a finding handed down in the Coroner’s Court in November. But the young boy deteriorated and died before this took place.

A spokesperson for federal Health Minister Mark Butler directed questions about the centre’s ongoing funding to the Victorian government.