When Liz Allen's daughter was seven years old, she suffered an anaphylactic response while helping to peel prawns for a Christmas meal.
She's since had allergic reactions to other unidentified allergens, some of which have involved trips to the emergency department.
In January 2024, Ms Allen said her daughter was referred to Canberra Health Services' paediatric allergy clinic because it was "the best, most comprehensive place" to determine what was going on.
But in mid-October, after almost three years of waiting, she received a letter stating that her daughter had been removed from the waitlist because her condition "no longer meets the requirement for a specialist appointment".
"It is stressful because … it could be life threatening," Ms Allen said.
"Not knowing the source of the allergy is of great concern.
"We have waited on this list patiently in the belief that she would get the medical treatment she needs."
Liz Allen says her daughter had been on the paediatric allergy clinic's waitlist for over two years when she was removed. (ABC News)
Ms Allen said she received no other communication from Canberra Health Services (CHS) before the letter arrived.
"There was certainly no communication about further information, particularly around her [current] health," she said.
"Each new reaction [she has] occurs about every six months. It is getting more and more of a concern for us as she gets older."
'Your referral has been closed'
The letter from CHS explained that there were more than 65,000 people on outpatient waiting lists, and that the wait for the allergy centre was more than six years long for some patients.
"To deliver an effective service, the criteria we use to decide which patients can be seen at the clinic has recently been reviewed and updated by our clinicians," the letter stated.
"Our team has reviewed the information your doctor sent us against the new criteria, and your referral no longer meets the criteria for a specialist appointment with CHS, and your referral has been closed."
A CHS spokesperson said "approximately 1,000 letters" had gone out to patients.
Ms Allen said it was a "kick in the guts" to have to "start all over again", particularly given their referring doctor had since retired.
"We feel like as family, we are in nowhere land trying to navigate this issue," she said.
A post on social media about her experience attracted dozens of comments from other Canberrans who had received similar letters.
"How is it that the criteria has changed so that even an anaphylactic … response does not make a child eligible for such a service?," she said.
"I do worry about this whole system that appears to be crumbling.
"And that doesn't bode well for families trying to raise healthy children."
CHS 'systematically working through' wait lists
CHS chief operating officer Alison Derritt told 666 ABC Canberra Breakfast that they were "systematically working through" more than 40 outpatient waiting lists as part of a review of specialist and outpatient services.
"There will be more reviews to occur. We are working service by service," she said.
"We need to work through all 40-odd services to understand their waitlists and go through them."
CEO Alison Derrett says Canberra Health Services is trying to focus on higher-category patients. (ABC News: Mark Moore)
She said the current criteria for the paediatric allergy service was "those under 16 with a severe and complex food allergy, and primarily with the history of anaphylaxis".
"Now we do need to talk to [Liz Allen] ... and certainly happy to understand her particular situation," she said.
"But what we're trying to do is focus on those patients that are at the top categories or top of the new categories and be able to see them in a timely way."
Ms Derritt said that some patients removed from waitlists would need to look at being "seen elsewhere", and one "alternate" would be to go to a private clinic.
She also said some patients needing a "lower category service" may be able to access other local services without needing to travel interstate.
"If someone has got communication or a letter from us and you consider that we've not fully appreciated the situation or there's additional information that you think that we've missed, we're very happy to talk through that with our patients and families," she said.
'Honour original waiting lists': Opposition
Canberra Liberals Leader Mark Parton says the government should "walk back" removing patients from waitlists. (ABC News: Ian Cutmore)
ACT Opposition Leader Mark Parton has criticised CHS's process, and accused the government of trying to make waitlists look better.
"We understand that they're going through a process of review, but we don't believe that process of review should mean weeding out everyone on the waiting list and starting from scratch,"
he said.
Mr Parton said he would move a motion in the ACT Legislative Assembly this week, calling on the government to "honour the original waiting lists".
"It doesn't matter which way you look at this situation, it's diabolically bad," he said.
"I don't know how the government's going to defend its position because I think it's indefensible.
"And I would hope that the motion that I run tomorrow will give the government the ability to walk back from this and actually genuinely look after the people who need looking after."