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Mother calls for change after daughter with intellectual disability told to wait five months for CT scan
One of Imogen's favourite games is to play doctor with her teddy.
As she pretends to take a blood sample, it is clear how familiar she is with being reassured during medical procedures.
"It's OK Teddy, it doesn't hurt," she tells a knitted bear fitted with a cannula.
The five-year-old knows what it is like being scared of needles, hospitals and health workers.
Imogen lives with a rare condition, which involves intellectual disability and profound hearing loss.
To prepare for medical procedures, her parents use games, toys and stories.
But nothing they have tried works when it comes to CT scans.
Her mum Ineke once managed to get her into the room at Westmead Children's Hospital in Sydney, where the scanner was decorated with colourful fish to reassure young people.
"It was just too overwhelming. Even though she desperately wanted to try, she was not able to," Ineke said.
So when their ear nose and throat specialist had concerns a mass may be growing in her middle ear, a scan under anaesthetic was ordered.
Ineke was shocked when she was told her daughter would have to wait five months for the procedure.
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More than 450,000 Australians live with intellectual disability, according to government data.
People with intellectual disability die on average 27 years earlier than the rest of the Australian population and have double the preventable death rate, according to research from UNSW's National Centre of Excellence in Intellectual Disability Health.
A review into deaths of people with disability in care in Queensland also found "many people [were] not diagnosed with the condition that led to their death until either just before their death or at autopsy."
Cathy Franklin, a researcher with the Queensland Centre for Intellectual and Developmental Disability and Autism Health, said there was not enough support for people with intellectual disability in the medical system.
She said even having a simple procedure like a blood test could be challenging for this community and the people who cared for them.
Accommodations that can help make it possible for a person with intellectual disability to undergo a medical procedure include role play or visual stories that explain the smells, sensations, sounds and movements to expect.
Dr Franklin said only a few medical centres across Australia do this and are generally set up to accommodate children.
"In most parts of Australia, there's simply nowhere to refer if someone with intellectual or developmental disability needs a blood test under sedation or even just with additional psychological support," she said.
It took several weeks and many phone calls before Imogen's mum was able to secure an appointment for her CT scan under a general anaesthetic.
When her GP saw the results, the family was told to take her straight to hospital.
The radiologist's report noted the bones in her middle ear were "almost completely eroded" and other parts were facing "near complete obliteration".
Within 48 hours, Imogen underwent urgent surgery to remove the rapidly advancing growth.
"That there could have been even more serious consequences is really scary."
Ineke said the family was grateful for the care Imogen received over the years across multiple hospitals, but lamented it often fell on individual healthcare workers to ensure her daughter received the care she needed.
She has written to NSW Health asking for an increase to the number of days allocated to medical imaging under anaesthetic, worried that others were missing out on the kind of care Imogen received.
"It was a near miss," Ineke said.
"Many families, especially families who have kids with disabilities, don't have the time, energy or resources to be able to advocate in the way that I was able to."
In a statement, NSW Health said it was "committed to providing safe, inclusive, person-centred care to people with disability".
It said the decision to conduct imaging under sedation or general anaesthetic was based on the needs of the patient and in conversation with the treating practitioner, the patient, their families and in line with relevant policies.
A statement from the Sydney Children's Hospital Network focused only on MRI scans.
"All children and young people requiring an MRI scan, with or without general anaesthetic, are triaged and prioritised based on clinical need, with the most urgent cases always seen first," a spokesperson said.
"Parents are given an estimated timeframe for an MRI scan, however, this timeframe may change based on a child's clinical assessment," they said.
"For children who do require general anaesthetic, MRI sessions are held five times a week, with emergency sessions run on weekends, as required. There is no anticipated change to the service."
If a parent feels their child's condition has worsened, they can contact their child's treating team so a clinical review can take place, the spokesperson added.
