ACT Education Directorate to review diabetes medication procedures in schools after teenager falls into diabetic ketoacidosis in class

Adrienne Cottell’s twin girls were diagnosed with diabetes at the ages of two and six. (Supplied: Ina Jalil at Ina J Photography)

Last year, one of Canberra mum Adrienne Cottell’s twin girls slipped into diabetic ketoacidosis while at school.

When Ms Cottell picked up her then-15-year-old daughter, she noticed she looked “incredibly unwell”.

“The minute she opened the door, I could smell that she had ketones, which is a very distinct acetone [smell]. And I found out that she had been asleep in class that day, and no one had called me,” Ms Cottell told ABC Radio Canberra.

“Her diabetes management plan says if drowsy, or lethargic, please call me — and they didn’t call.”

Diabetic ketoacidosis is a serious complication that can occur in people with diabetes. When ketoacidosis occurs, the body produces excess blood acids, known as ketones.

“Diabetic ketoacidosis can lead to brain damage, especially in children,” Ms Cottell said.

Ms Cottell is used to advocating for her daughters in the ACT public school system — one had been diagnosed with type 1 diabetes at two, and the other at six.

Her daughter became seriously unwell following that day in 2023, and Ms Cottell said when she went to the school to discuss what had happened, they were not responsive.

She then took the matter to the ACT Civil and Administrative Tribunal (ACAT).

“The school shut down. They wouldn’t talk to me even though I had another child at the school with the same condition,” Ms Cottell said.

“So I threw a Hail Mary.”

‘There was no consciousness. She was just breathing’

Ms Cottell said there were typically visible signs a person was slipping into diabetic ketoacidosis.

“It looks like she’s asleep, but she’s actually very drowsy. And she’s going into diabetic ketoacidosis, which is where the brain shuts down,” Ms Cottell explained.

“She actually powered down, and went to sleep in class.”

After this incident, Ms Cottell’s daughter grew progressively unwell and they realised she had contracted a virus, too.

Three days later, she “flipped over” into a diabetic coma at 2am.

“She is literally not able to drink or eat. She’s lying there. She looked yellow and waxy,” Ms Cottell said.

“She wasn’t responsive to her name. She wasn’t responsive to anything and had very minimal brain functioning cells.

“There was no consciousness. She was just breathing.”

Ms Cottell said she believed that if the school had followed her daughter’s “sick day management plan”, the situation would not have escalated.

She said she had instructed the school about how to identify signs of ketoacidosis.

“They should have called me to let me know that she was so unwell, and she should have gone onto a sick day management plan,” Ms Cottell says.

“I was so upset, because I had begged the school to acknowledge that she had diabetes, and to make sure that the staff were trained.”

One year on, Ms Cottell’s daughter has not fully recovered from the incident, nor has she returned to school.

“She had deficits for a while. She had inner ear issues so she had trouble walking. She couldn’t go in the car without vomiting. So we had to work really, really hard,” Ms Cottell said.

“She had brain scans, heart monitoring, and then physio to be able to rebalance, and now she requires medication.”

Training cancelled, critical medication deemed ‘contraband’

Ms Cottell said she had been fighting for recognition and training for diabetes and their comorbidities in ACT public schools since her daughters first entered the school system.

“Originally, the Canberra Hospital used to deliver training [to school staff], and then they reached capacity and couldn’t deliver training anymore. So it was left to the parents to train staff,” she said.

“And then in 2017, WorkSafe ACT stepped in and said parents aren’t allowed to train. So after that there was no training.”

From that point on, she said any training given on diabetes was delivered online, which she said was “definitely not adequate”.

“All children’s diabetes isn’t the same. My children have comorbidities that interact with their diabetes, but I wasn’t allowed to hand that [information] over,” she said.

“The parents have to manage these children’s conditions all the time. You’re not allowed to take your child home from hospital unless you’re competent. You’re not allowed to leave them in the care of anyone else unless they’re competent.

“But then you can leave them in a schooling system where people aren’t trained?”

Then, in 2020, Ms Cottell’s twins were no longer permitted to carry a glucagon kit with them at school, and she said the school branded it “contraband”.

“WorkSafe had asked us to minimise our [diabetes management] plan, so we did … and it got accidentally left off,” Ms Cottell says.

“And then when we tried to put it back in the plan, they said, ‘no, it’s contraband’.

“[Glucagon] is an S3 drug, the same as an EpiPen — so you can buy it over the counter at a chemist.”

Ms Cottell decided her twins should still carry the kit with them at school, as per their medical advice, but said it caused them significant stress.

“My child actually had to go to psychology appointments, because she was so distressed about carrying contraband,” Ms Cottell said.

‘Hail Mary’ leads to change

When Ms Cottell turned to ACAT about the situation in 2020, she asked for better communication and training for ACT Education Directorate staff.

But after her child’s diabetic ketoacidosis at school in 2023, Ms Cottell went to the ACT Human Rights Commission, who referred the matter back to ACAT.

“I threw a Hail Mary,” Ms Cottell said.

“The ACT Education Directorate made it very clear that they were not budging on glucagon or training.”

In February 2024, ACAT ruled that the ACT Education Directorate “review its procedures in relation to the administration of glucagon in ACT public schools” and provide an update in six months.

ACAT also ruled that the directorate “take all reasonable steps” to facilitate training at Ms Cottell’s daughter’s current school — both in glucagon administration and in her individual diabetes management plan.

The directorate “agreed to settle the claim without the admission of liability, pursuant to the terms set out in the deed”.

“The result of the hearing is that we’re allowed glucagon. It’s no longer contraband and my child’s school staff [are permitted] to be trained on it,” Ms Cottell said.

“I’m really happy with that individualised training.”

Ms Cottell said the decision to allow training in individual diabetes management was also crucial.

“It is awesome, because it can pick up the child’s comorbidities … such as coeliac disease, ADHD, autism, or any other condition that causes the diabetes symptoms to look different,” Ms Cottell said.

“I was over the moon that we got these changes. But we’re still waiting for them to be actioned.”

In a statement to the ABC, the ACT Education Directorate said it was “currently engaging with Canberra Health Services and diabetes peak bodies to ensure best practice diabetes management procedures continue to be used in ACT public schools”.

“The directorate is also working with Canberra Health Services to deliver tailored diabetes management training, including the administration of glucagon for diabetes emergencies,” a spokesperson said.

“The directorate appreciates that parents bring significant expertise in relation to their children’s medical conditions, so schools follow diabetes management plans prepared by the child’s clinical team in consultation with their family.”