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.
Do you have a story to share? Email Specialist.Team@abc.net.au
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.
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
News.com.au
23 minutes ago
- News.com.au
Katherine Heigl's candid bathroom confession praised
One of Hollywood's biggest stars has been praised for throwing her weight behind a health topic that is typically considered taboo. Katherine Heigl, known for her roles in Grey's Anatomy, Firefly Lane and 27 Dresses, has teamed up with healthcare brand Poise to speak about bladder leakage and perimenopause. In a video shared to Instagram, Heigl speaks directly to her Australian fans. 'As you know, I am not one to shy away from speaking out and so now I am speaking directly to you,' she said. 'When Poise came to me and said that the prevalence of bladder leakage is even higher in Australia with two in three women over 25 experiencing what I like to call the old 'giggle dribble' I wanted to do a special call out to my fans Down Under. 'Those post-partum or perimenopause bladder leaks are so common but often not talked about and so I thought this was an excellent opportunity to get outspoke once again. I don't want a single woman out there to feel alone in this experience or to feel shame or embarrassment. I refuse to let a little giggle dribble stop me from doing everything it means to be a woman and a mother.' Heigl, 46, said that was why she was excited to bring her Poise campaign to Australian televisions — and women who have seen it have praised the actress for her openness. 'I was thrilled to see a pretty and popular actress talking about this so openly on TV. I mean the bar is low right now, but, hearing her say 'perimenopause' AND speak so openly about leaks and peri in front of her male child in the commercial is a step in the right direction IMO,' one viewer said. Another said: 'Obsessed with Katherine Heigl! Love that she is talking about such a taboo topic, go Poise!' 'Great to see this topic being spoken about more openly,' one added. One social media user chimed in: 'Hard relate!' 'Such an important issue,' another agreed. Heigl went on share more about her own experience with bladder leakage, with the Emmy Award winner revealing her first experience with it happened after the birth of her son Joshua in 2017. 'I was just like, 'Oh, excuse me, I'm going to need to go change my underwear'. I kind of just laughed through it versus feeling shame. But then you start going through perimenopause and it's just all falling apart. So you just have to embrace it,' she said. She reiterated that she wasn't OK with anyone feeling any kind of shame or embarrassment around it as it's a natural part of being a woman. 'And it's such a blessing to have a product that can support you through that,' she said. 'Just having someone else who's going through it or having similar experiences makes you feel like, okay, it's not just me. It's kind of universal – which is why I feel strongly that there should be more proactive help for all of us women going through this.'
News.com.au
3 hours ago
- News.com.au
Queensland's forensic boss has been suspended over allegations DNA testing was contaminated
Queensland's top forensic scientist Linzi Wilson-Wilde has been immediately suspended over fears DNA tests have been contaminated. Attorney-General Deb Frecklington issued a statement late on Friday following advice she received that Forensic Science Queensland had paused testing after contamination issues were identified. 'I moved to immediately suspend, pending a show cause notice for removal, the Director of Forensic Science Queensland,' Ms Frecklington said in a statement. The organisation supports criminal and coronial investigations with forensic biology and chemistry services. Ms Frecklington said the forensic lab would pause operations for seven days, then carry out a review to determine the next steps. She said the government has been advised Forensic Science Queensland would still process urgent matters using appropriate controls.
ABC News
4 hours ago
- ABC News
Forensic Science Queensland director Linzi Wilson-Wilde suspended after 'contamination issues' identified
The director of Forensic Science Queensland (FSQ) has been immediately suspended by the state's attorney-general after "contamination issues" were identified. Attorney-General Deb Frecklington said she moved to immediately suspend the director, Linzi Wilson-Wilde, who was appointed in September 2024, pending a show cause notice for removal. "This action was taken following advice I received today that FSQ was placing a general pause on routine DNA testing after contamination issues were identified," Ms Frecklington said in a statement. Ms Frecklington's office could not provide any further details on the contamination issues. It is not known how long Dr Wilson-Wilde has to respond to the notice. FSQ is an independent statutory authority and forensic service provider, which supports the criminal justice and coronial systems with specialised services in forensic biology and forensic chemistry. Two commissions of inquiry, in 2022 and 2023, found serious failings over many years at the FSQ lab, including a "fatally flawed" automated testing method that might have seen offenders escaping conviction. More than 120 recommendations were made during the commissions of inquiry to address "disturbing and troubling" issues which have meant tens of thousands of samples may need retesting. Dr Wilson-Wilde became director in September 2024 after joining FSQ as interim chief executive in January 2023. Ms Frecklington said FSQ's pause in operations would be for a preliminary period of seven days followed by a review to determine the next steps. "The government has been advised FSQ will continue to progress urgent matters in a limited capacity during this time and that this can be done with appropriate controls," she said. Ms Frecklington said the government was "firmly committed to fixing the long-standing issues at Forensic Science Queensland". When contacted by the ABC Dr Wilson-Wilde declined to comment.
