'No one else's child should almost have to die': Mother's fight to change diabetes management in schools

A Canberra mum has claimed parents are “scared their children will die” in an ACT public school program designed to manage students’ diabetes.

Adrienne Cottell received a tribunal-mandated letter of apology from the ACT Education Directorate after one of her teenage children, who cannot be named for legal reasons, started experiencing diabetic ketoacidosis (DKA) – a serious complication which can be life-threatening – during class.

“[My daughter] had an individualised Diabetic Management Plan (DMP), which says if she’s drowsy or lethargic, call her parents,” Ms Cottell said.

“I don’t think [the teachers] ever read the plan. I don’t think they even knew she had [type 1] diabetes.”

When Ms Cottell picked up her daughter, she could smell the ketones (which have a fruity smell) on her breath, which she said meant they were about “three or four hours” behind sickness management.

Her child ended up in a diabetic coma three days later.

“If we’d had the jump on it when she was drowsy, we would have reduced her going into a coma and [insulin] deficits,” Ms Cottell said.

She took the directorate to the Human Rights Commission and the ACT Civil and Administrative Tribunal (ACAT).

“The reason I fought so hard is for other children,” Ms Cottell said.

“No one else’s child should almost have to die.”

The tribunal ordered the directorate to review its procedures concerning GlucaGen (similar to Epipens) administration in public schools, facilitate the child’s accredited assistance dog’s attendance at school, train school staff in the administration of GlucaGen, and have relevant staff take part in a session by a credentialed diabetes educator regarding the child’s DMP.

As part of the directorate’s review, Ms Cottell made suggestions to the directorate on how to improve diabetes management.

Ms Cottell said administration of GlucaGen, in particular, was an issue.

“We [as parents] can’t leave the hospital unless we’re trained, but our children can be left at school with untrained people,” she said.

It’s understood GlucaGen is allowed in ACT public schools, but it can only be administered by a trained member of staff, which the child’s school did not have at the time of the incident.

Ms Cottell also took aim at the Healthcare Access at School (HAAS) program’s DMPs, which she claimed missed important information and steps, didn’t contain emergency management for seizures and comas, and didn’t allow for a child’s comorbidities to be added.

She also felt that involved nurses didn’t have enough credentials or training to make decisions about a child’s diabetes management.

“HAAS nurses are required to have five years’ paediatric experience … [but] a paediatric nurse’s experience is not valid for managing type 1 diabetes in a school setting,” Ms Cottell wrote.

“[They] only receive a PowerPoint presentation from a Canberra Health Services’ credentialed diabetes educator. Full stop. Not additional training.”

Schools can also receive online National Diabetes Services Scheme (NDSS) training.

But Ms Cottell wants public school staff to receive the same level of training as private school staff – that is, level 3 NDSS in-person training delivered by Canberra Health Services (CHS).

Ultimately, she said parents of type 1 diabetic children wanted all staff to receive individualised training from a credentialed diabetes educator on a child’s specific DMP, more collaboration between parents and the directorate, GlucaGen administration to not be restricted just to trained staff, and to not leave decisions to HAAS.

“Parents have the ultimate responsibility (and authority) for managing their child’s diabetes, but HAAS removes this responsibility and treats parents as incompetent and an inconvenience,” Ms Cottell wrote.

“Therefore, many parents are concerned that the HAAS program will kill their child.”

An ACT Education Directorate spokesperson said the agency does not provide public commentary on an individual student’s medical conditions but stressed that Canberra’s public schools are committed to supporting students with diabetes to “safely engage with all aspects” of their schooling.

They also confirmed it was engaging with CHS and other diabetes “peak bodies” to review policies and ensure “best practice diabetes management procedures”.

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