Jayda Cousins shares story amid calls for specialist eating disorder services for Border and North East

She'd even run laps around the house.

She ran, and she ran, and she ran - sometimes she ran until she passed out.

But 16-year-old Jayda Cousins couldn't out-run the voice in her head telling her she was too big.

She weighed food meticulously, even the cottage cheese her mum Jodie insisted she have with a muffin every morning.

It was like eating poison.

Counting and control, counting and control.

A dangerous, deadly numbers game.

As the insidious grip of anorexia took hold of her mind, Jayda hid its savage destruction on her body with baggy jumpers, belligerence and brilliant school reports.

If he didn't know better now, Scott Cousins might have thought his daughter had made a New Year's resolution.

It was the start of 2021 and Jayda was in Year 11 at James Fallon High School.

She was taking more of an interest in her appearance and watching her diet.

"I thought it was just her growing up - she'd been talking about doing her deb," Scott recalls.

They'd always been into sport as a family but Jayda suddenly began increasing the intensity of her exercise.

She'd regularly run three to six kilometres up and down the steep hill near their home.

Jodie was the first to notice the change in her daughter's habits and that "analysing food labels had become an obsession".

Jayda started making her own meals and taking full control of her eating.

When she fainted after exercising one day, her mother knew something was amiss.

"Jodie was more on to it than me; she wanted to do something but I played it down, thinking she'd just over-done it," Scott admits.

After two more fainting episodes, Jodie insisted on making an appointment with their GP, who referred Jayda to the Child and Adolescent Mental Health Services (CAMHS) team.

She had just turned 16.

Scott and Jodie duly marched their reluctant daughter along to the first of many frustrating and, ultimately, fruitless appointments over months during the thick of COVID-19 lockdowns.

It was a battle to get Jayda to go and she kept insisting the sessions weren't helping her.

The main focus at CAMHS was "making" Jayda eat, according to Scott.

"The theory - the only method offered - was she needed to gain weight before they could work on her mental state," he says.

Jodie's eyes fill with tears as she describes the "torture" of trying to enforce that.

She spent hours coaxing, cajoling, threatening her daughter to eat - often until 11pm.

"I'd sit at the table after work and Jayda would spin it out for three hours every night until sometimes I was falling asleep," Jodie admits.

Jayda would meticulously check and weigh everything that went in her mouth.

"With school and both of us working, Jayda was in full control of meals and snacks during the day ... so she didn't eat," Jodie explains.

At one point the CAMHS team recommended Jodie go to Jayda's school to supervise lunches.

It didn't last long; Jayda was so embarrassed and self-conscious she begged her parents not to and "soft old Mum caved in".

Family-based treatment might provide you with the information "but we had no idea how to put it into practice", Jodie reflects sadly.

Jayda came to loathe and fear the scales at weekly GP appointments and sessions at CAMHS.

She was weighed every time.

"It was one of the most triggering things," she insists. "It's like ... it resets the goal.

"If you'd maintained weight, they'd say, 'Good job, keep it up' and I'd think, 'No, no it's not a good job'.

"I hated knowing my weight; I felt angry."

Appointments tapered off towards the end of 2021 as the family's exhaustion grew.

"Nothing was happening, Jayda just wasn't making progress," Scott says.

"Even with Medicare, it felt like we were shuffling out money everywhere."

Paediatricians refused to see her.

"It was like the whole journey we kept getting told she was too old to be a child and not old enough to be an adult," Scott says.

"Everyone just wanted to handball us.

"We couldn't get her admitted or referred anywhere. Basically we had to wait and hope for her to snap out of it, we had lost hope of any help and only had hope of her surviving."

In reality, Jayda had descended into the grip of a severe eating disorder as she started Year 12 in 2022.

By March, "it was in total control", Jodie says.

Both parents were working - at some stage Jodie also contracted COVID and had to isolate - and Jayda was in the thick of preparing for her HSC.

"Her school results kind of tricked us into thinking she was doing much better than she was," Scott reflects.

"That was a really good mask."

"In hindsight," Jodie says with tears in her eyes, "I should have just left work and fed her."

In September, Scott happened to take Jayda to their GP to have a form signed that would allow her to sit her Year 12 exams separately to assist with her anxiety.

During the consultation, the doctor examined Jayda and checked her heart rate.

In that moment, as her shirt was lifted, Scott caught a glimpse of his daughter's skeletal frame, revealing the terrible extent of her illness.

"I was horrified - she looked like a prisoner of war," he says.

Jayda remembers her dad crying as they walked out of the appointment.

"I didn't think I was skinny then," she muses.

"My body dysmorphia was that bad, I just looked at myself and thought 'I'm such a monster'."

By this point, Jayda had lost nearly half her body weight.

The GP said the situation was urgent and that Jayda needed to be immediately admitted to hospital.

"She kept saying to Jayda and to us, 'You wouldn't let a blind person walk on the road would you?'"

On three separate occasions between September 14 and October 27, Jayda was sent home from Albury's emergency department.

"She wasn't sick enough," Scott says.

The first time they took her in, Jayda's vitals were taken and because "there was nothing to say anything was failing" they refused to admit her.

"They checked her BMI against a sheet of paper from Queensland University and told us she was within safe limits," he says.

"We tried to argue but were told in no uncertain terms ... even though I later noticed the piece of paper they gave me said the guidelines were not to be used for adolescents."

Jodie says their attitude was almost like, "You silly girl, just eat!"

But there was nowhere to turn.

Their GP was working frantically behind the scenes trying to find somewhere for Jayda to get treatment.

Scott made phone call after phone call to facilities in Melbourne, Sydney and even Brisbane but all had waiting lists - some up to 12 and 18 months.

"I said I need somewhere now or my daughter won't be here at Christmas," he told them.

There was even a wait at Queensland's specialist eating disorder facility Wandi Nerida, whose program carries a $70,000 price tag.

In desperation, Scott enquired about accessing his super to help his daughter.

It was about this time their GP found out about an adolescent eating disorder program at Sydney's Westmead Hospital and arranged for the Cousins to talk with the specialist team.

A teleconference was organised where Westmead advised the family to take Jayda back to Albury hospital where they could start care or arrange to have her transported by ambulance to Sydney.

Jayda's weight had dropped further, her legs had turned black and swollen from lack of protein, and her heart rate was hovering at dangerously low levels.

"Westmead told us she was too sick for us to take her directly to Sydney ourselves," Scott says.

"They contacted Albury's emergency department to make the arrangements and advised us to go in - so we were under the assumption something would happen."

After a few hours, the attending doctor informed the family he'd been advised it was up to Jayda if she wanted to be admitted, Scott says.

"He made it clear he was being instructed to do this and, while he clearly indicated to us that he too believed things weren't good with Jayda's health, he couldn't help us.

"He formally asked Jayda if she wanted to be admitted and she refused."

Ironically, Westmead called the following morning to ask where Jayda was and when Scott told them what had happened, they advised him to go through the necessary steps to obtain guardianship.

More hoops to jump through, delays, and despair at watching their daughter waste away in front of them

Scott applied for and was granted a guardianship hearing for 17-year-old Jayda on October 17.

By this time she was in the middle of exams,

"We were trying to do the right thing," Jodie laments.

"How stupid to look back now and think we were letting her finish school."

Jayda's last exam was on October 26.

At 9am on October 27 at a telehealth meeting with Westmead, the family was once again instructed to take Jayda to emergency.

"Again Westmead pre-called the hospital to make arrangements," Scott says.

"We were told to pack Jayda's stuff; she didn't want to go."

For the third time, they forced their daughter into the car and through the doors of Albury's emergency department.

From the moment they arrived - and despite having the guardianship paperwork - they were met with outright resistance, Scott says.

"One of the triage nurses declared, 'We will decide who comes into our hospital'," he reveals.

"The nurse who took Jayda's obs said her blood pressure and blood sugar were low, noted her weight and the fact her legs were black."

This was relayed to the doctor who instructed the nurse to re-check in half an hour, according to Scott.

"When Jayda was hooked to the monitor we'd already noticed her heart rate was fluctuating around 40 to 50 beats per minute," he says.

"When the nurse came back, she noted the stats were still low.

"The doctor came in and told Jayda if she had a cup of juice she could go home - Jayda negotiated half a cup."

And that was the end of that.

"So after another six hours at the hospital, we were again informed Jayda was not sick enough to be admitted," Scott says.

With a growing sense of helplessness and terrified they were going to lose their beloved daughter, Jodie and Scott decided to take matters into their own hands.

On October 28, they drove Jayda - who lay slumped in the back seat - the 560 kilometres to Westmead Hospital where a team was on standby to admit her.

"I felt numb; I've never felt like that before," she says.

When they arrived, Scott remembers one of the professors telling Jayda, "I'll tell you right now, you are the sickest person in this hospital".

That night in the cardiac ward, her parents were told Jayda's heart rate plummeted to 30 beats a minute - less than 36 hours after she was told "she wasn't sick enough" to be admitted at Albury.

"She might not have woken up at home," Scott says.

Jayda would spend five weeks in Westmead being re-fed via a nasogastric tube and a strictly supervised meal program on a ward with other eating disorder patients.

It was her first time away from home.

Jayda was released from Westmead on December 5, 2022.

But the heart-breaking part to this story is this is just the start of her recovery.

"The doctors (at Westmead) told us to rest up because the hard bit begins when she gets home," Scott says.

The family has learned the brutal reality of that every day since.

Jayda is receiving follow-up treatment with a Sydney-based psychologist via telehealth.

It's not ideal and the family is feeling the lack of specialist recovery support services close to home.

Jayda admits she's struggling - "there are lots of bad days".

She tries to avoid the triggers but it can be as simple as catching a reflection of herself.

She avoids exercise even though she'd love to walk her dog.

"But if I was going to go for a walk, I would have to measure it," she confesses.

"As soon as you have numbers, you get hooked, and you try to beat them every day."

There's not a morning Jayda doesn't wake up with that voice in her head.

"I'm trying to be in recovery but I don't want to gain weight," she admits.

"I know Mum worries ..."

Jodie describes the eating disorder as an "evil genius".

It's a wretched insight into an illness that wraps its tentacles around the sufferer - and those trying to care for them.

The love and support of family and friends, and the compassion shown by Jodie and Scott's employers have propped them up during the past two-and-a-half years.

Jodie openly weeps as she talks about the "unbelievable" kindness of Jayda's school - from care parcels and fuel vouchers to an open invitation for their student to return any time for careers advice or support.

The Cousins recently shared their story with Albury MP Justin Clancy, who was so moved by their plight he raised the issue in parliament in May.

Mr Clancy applauds Jayda's bravery in sharing her story.

"Our health care workers work hard and we know of the health infrastructure needs for our region," he says.

"And yet Jayda's story highlights a need for families to be assured that processes from early intervention to co-ordination of services and communication reflect best models of care.

"Where we can do better, we need to do better!"

Sadly, during this journey, the Cousins say they have heard "many more stories" like theirs ... "it doesn't seem to be getting any better".

"We don't want anyone else going through what we've been through," Scott says firmly.

"What happens when somebody else goes to emergency and is turned away?

"Someone's child is going to die."

Albury-Wodonga Health provided this statement in response to The Border Mail's questions about Jayda's case:

AWH endeavours to provide safe and accessible care for everyone in our community, including ensuring we have appropriate systems in place to care for patients with specialist medical and mental health needs.

As part of our investigations into Jayda's experience, we met with her family to fully understand and learn more about her experience, and we have apologised to them. Our discussions with the family, which included offering follow-up care and support, have provided valuable insights that we are using to improve our systems of care.

We have extended an open invitation to Jayda and her family to continue to meet with us to provide their feedback as to how our services can be improved.

- Dr Lucie Shanahan, Executive Director Mental Health & Wellbeing, Allied Health and Public Health