Parents speak out after sick kids cut from Canberra Hospital waiting list

Even though doctors suspect 13-year-old Jordan Mavroudis has a potentially life-threatening illness, he has been removed from a specialist waiting list at Canberra Hospital.

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Jordan is one of about 1000 patients deemed ineligible for paediatric outpatient appointments as part of a clinical review of the waiting list. Parents, clinicians and Legislative Assembly members are concerned that children with serious medical conditions were struck off the list during the review.

Brothers Jordan and Dallas Mavroundis, with inset, Jordan when he suffered a facial swelling as a baby. Pictures by Keegan Carroll and supplied

Jordan Mavroundis when he suffered a facial swelling as a baby. Picture supplied

Jordan was about eight months old when he was admitted to hospital with a rash and severe swelling.

"He got massive swelling of the face, the eyes, the mouth and there was a rash all over his body," Jordan's mother Donna-lee Mavroudis said.

"They were very concerned and treated him like it could be meningococcal."

Jordan was well again within a few days, but over recent years he has had repeated episodes of tissue swelling, including developing boxer-like "cauliflower ears".

While Jordan said he "doesn't really notice" when this happens, in March 2024, a paediatrician became concerned that the swelling might be caused by the condition hereditary angioedema (HAE), which can cause life-threatening swelling in airways.

A letter sent to a parent advising them their child had been removed from a Canberra Health Services waiting list. Picture supplied

The paediatrician referred Jordan to the specialist paediatric immunology clinic at Canberra Hospital.

Mrs Mavroudis recently received a letter from Canberra Health Services advising that Jordan no longer met the eligibility requirement for a specialist appointment and the referral had been "closed".

Another mother of a young patient, who spoke to The Canberra Times on the condition of anonymity, also received a letter from the health service advising her child's case had been "closed".

The mother, who is a registered nurse, said her daughter was referred to the paediatric immunology outpatients clinic after being rushed to hospital with anaphylaxis.

"Watching my daughter's face swell, hives spread across her body and her breathing become difficult was terrifying. She needed two doses of adrenaline,'' the mother said.

Having waited three years to see a specialist, the family is seeking to have the referral reinstated.

Health Minister Dr Marisa Paterson said patients who had suffered anaphylaxis were eligible for appointments. She urged parents who had concerns about cancelled referrals to contact Canberra Health Services.

"A child experiencing anaphylactic anaphylaxis is absolutely eligible," Dr Paterson said.

"We want to speak to them. They should contact the hospital and we will engage with that family."

Jordan and his 16-year-old brother Dallas, who has allergies, are now receiving treatment at a private clinic. But their mother worries about other families who cannot afford to access treatment privately.

'Robodebt'-type review process

Liberal, Greens and independent MLAs combined to pass a resolution in the Legislative Assembly calling on the government to ensure that existing referrals remained active unless a Canberra Health Services clinician consulted the patient and their referring doctor.

Opposition Leader Mark Parton described the attempt to clean up the waiting list as a "debacle".

"When you read the feedback and when you talk to people who have been booted off the list, it is impossible to support the way the government has gone about it," Mr Parton said.

Independent MLA Thomas Emerson compared the review process to "robodebt"-type exercise, with patients taken off the waiting list and then forced to prove why they still needed an appointment.

There are more than 65,000 people on Canberra Health Services outpatient waiting lists. Paediatrics was the first service to be reviewed, with other areas to be reviewed in the coming months.

The reviews are mean to ensure that patients with the highest levels of clinical need receive specialist appointments, with other patients referred back to their GPs.

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