A family's struggle to get an ADHD diagnosis and treatment for their son has left them feeling frustrated and powerless.
"We feel we are failing him even though we are doing everything we can," Juliana Pires said.
Ms Pires's son, Milton Pires Fearman, is eight years old. Two years ago a teacher raised concerns that he was struggling to focus in class.
"We noticed before Milton started school that he was a little bit more on the side of creativity and he likes to be in his own world a lot," Ms Pires said.
"He doesn't have the hyperactive element … so he's not jumping around and causing a lot of chaos in the classroom … he's off on his own thoughts a lot and very engaged in that," Milton's dad, Oliver Fearman said.
After an assessment by a psychologist, Milton was given a pre-diagnosis of ADHD (attention deficit/hyperactivity disorder).
The family was advised to get a formal diagnosis with a specialist.
Ms Pires called every paediatrician in her home state of Tasmania but none were taking on new patients.
"They said, 'Sorry it's been really challenging, many people call but we can't take new patients,'" she said.
"[There are] no waiting lists, just no options in Tasmania. We were gutted."
The family eventually managed to get an appointment with a paediatrician in New South Wales who diagnosed Milton with ADHD.
Milton was prescribed Ritalin and Ms Pires was advised it would be clear fairly quickly whether the medication helped with his symptoms or not.
But back in Tasmania the family was told the prescription could not be filled.
"I cried, I was shaking I was really upset because until that point it has been so hard," Ms Pires said.
Different states have different regulations around ADHD medications and because the prescribing specialist was in NSW, the medication could not be dispensed in Tasmania.
"We'd need to be doing a trip to Sydney every month to [have Milton's prescription filled]. That definitely takes it out of the budget, that's not really workable," Mr Fearman said.
The family is now working with their GP to get approval from Tasmania's Health Department to have the prescription filled.
"The drugs are very serious and we want to respect that but … let's respect the professional that's interstate who says this is going to help the kid," Mr Fearman said.
In the meantime, the family is concerned Milton is not getting the timely help he needs.
"He came to me at the second week of school and asked, 'Mama, when are you going to give me the pill that will help me pay attention because I am really struggling.'
"I didn't know what to tell him," Ms Pires said.
Mr Fearman said even though getting a diagnosis in NSW came at a cost, he is conscious that not everyone can afford to travel interstate for a diagnosis.
"Milton is not the only kid at his school, and definitely not the only one in the state with the issue."
He said there would be benefits if GPs were trained to diagnose and treat ADHD.
National shortage of clinicians able to diagnose ADHD
Children with symptoms of ADHD can only be diagnosed by a trained paediatrician, psychiatrist, or psychologist.
Adults can be diagnosed by a psychiatrist or psychologist but psychologists cannot prescribe medication.
It is estimated one in 20 Australians have ADHD.
Data from the Pharmaceutical Benefits Scheme (PBS) shows prescriptions for the two most commonly used ADHD medications — Ritalin and dexamphetamine — have doubled in a decade.
Mark Bellgrove is a member of the Australian ADHD Professionals Association board and a professor in cognitive neuroscience at Monash University.
He said people were experiencing long wait times for a diagnosis Australia wide.
"We just don't have enough clinicians who are trained specifically in ADHD diagnosis and treatment," he said.
While there had been discussions about training GPs to diagnose and treat ADHD, Professor Bellgrove said nothing had been put in place yet and it would be a challenge to make a diagnosis in a short consultation.
"Typically, a diagnosis for ADHD or an assessment for ADHD could take a number of hours so that will be a challenge to work out how to fit that within the context of a GP clinic," he said.
A federal parliamentary inquiry has been announced to look at ways to improve the lives of people with ADHD.
Professor Bellgrove said the inquiry would be an opportunity for people with lived experience of ADHD to influence policy.
"We know that when people with ADHD are treated appropriately we can really boost the quality of their life, we can increase their participation in the workforce," he said.
"This then becomes a boon for the whole country."
The first hurdle to overcome was improving access to ADHD assessment, because many people could not afford to pay privately for assessment and treatment.
"Yet, that really is the only solution or the only route in adulthood," he said.
Maddi Derrick runs Tasmania's only specialist ADHD clinic and is hopeful the inquiry will lead to change.
"The parliamentary inquiry's a fantastic opportunity for the government to really understand the problem here so they can work on the solutions with professionals in the area [and] improve the quality of life not only for people with ADHD, but also their families," Dr Derrick said.
Early intervention the key
Dr Derrick said an early diagnosis was "absolutely critical" to prevent poor outcomes for people with ADHD.
"We can prevent or improve the primary impacts of ADHD symptoms in the schooling environment, and allow people to access their learning and then be able to meet their potential and contribute to the workforce and society at large," she said.
"We can also prevent the secondary outcomes, and these are impacts on mental health and physical health, and [impacts] on relationships and family life."
Dr Derrick said long wait times and a lack of clinicians able to diagnose ADHD was "a human rights issue".
"We have a whole lot of suffering that's happening for people that was really preventable if we had have been able to get on top of the assessment and diagnose all the people with undiagnosed ADHD out there," she said.
"It's also an economic problem — we had a Deloitte report in 2018 that showed the cost of ADHD to be $20 billion per year in Australia."
For parents who suspect their child might have ADHD but are awaiting confirmation, Dr Derrick said "you can't really go wrong by assuming they've got ADHD".
"Resources are available online, and as a parent you can be providing the non-pharmacological support for your child," she said.
The increased understanding could help the child's symptoms and if it turned out they did not have ADHD, there would be no damage done.
Dr Derrick recommended a similar approach for adults who suspected they had ADHD but had not been diagnosed yet.
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