Imogen Innes describes life with attention deficit hyperactivity disorder (ADHD) as “like running a race and realising you’re the only one wearing weights on your ankles”.
The 26-year-old medical receptionist from Perth was diagnosed with ADHD in May this year, after waiting eight months for her initial appointment.
Ms Innes said she was originally told it would take 10 months to be assessed, and it was only due to her knowledge of the medical system and the fact that she continued to check for appointment cancellations that she was seen earlier.
The complete diagnosis process cost her more than $1,000, with additional medication costs.
Ms Innes has shared her story in the wake of a parliamentary inquiry investigating the support and assessment needs of the ADHD community, which has recently held its last hearing in Perth.
‘It finally started being quiet’
Ms Innes said having ADHD meant she needed to “mentally tick off every individual thing” as she completed tasks.
“It’s like you can’t go on autopilot for those menial tasks and when you’re doing everything manually, it makes you so much more exhausted,” she said.
But she said being medicated for ADHD with dexamphetamine had been “incredibly” helpful.
“I couldn’t believe that this is what my brain was supposed to be like – it finally started being quiet and I could focus,” Ms Innes said.
For 33-year-old Tom, from south-west Western Australia, an ADHD diagnosis and treatment remains out of reach.
Tom, who asked to be referred to by his first name only, said as a child his behaviour was dismissed as “naughty kid syndrome” but his symptoms had worsened with age.
“I’m very, very disorganised, not very socially adept,” Tom said.
“I just struggle with things everyone else seems to do really well.”
Tom, who is a painter by trade, said his symptoms prevented him from maintaining regular work, which in turn stopped him from accessing the help he needed.
“I live week to week, I can’t afford $500 just for the initial appointment, let alone save that money for months on end while I’m on a waiting list,” he said.
“It’s really hard to organise everything, and you need to be able to organise yourself to get a diagnosis.”
‘A fight the whole time’
Three years ago, Tom was so desperate for help that he took himself to his local emergency department.
“I broke down and said, ‘I don’t know what to do here’,” he said.
“All they could do was record that I’d checked in so that if I did finally get an appointment, they could see I’d checked into a hospital.
“It’s been a fight the whole time.”
Tom said he self-medicated with marijuana, but his inability to provide a clean drug test also inhibited his access to ADHD medication.
“If it wasn’t for the weed, I wouldn’t be able to sleep, it’s the only thing that really does anything to try and slow my mind down,” he said.
“If I had the proper medication, I would absolutely stop using the weed, but essentially they’re asking me to fix myself before I get help from them.”
Ms Innes and Tom did not take part in the parliamentary inquiry.
Time to ‘think bigger’ on ADHD
NursePrac Australia director and nurse practitioner Stephanie Dowden said it was time to “think bigger” when it came to ADHD treatment.
“This is not just an illness that needs medications. We need to be able to manage people’s wellbeing, help them regulate, help them manage their underlying anxiety,” she said.
“There’s a very strong relationship between ADHD and ongoing mental health disorders.”
Ms Dowden said ADHD was a neurodevelopmental condition that was inherited.
“So if you see a child with ADHD, it’s almost certain someone in their family, most likely their parent, has ADHD,” she said.
Inquiry into treatment barriers
When it comes to receiving an ADHD diagnosis, experiences like Tom’s and Ms Innes’s are common, according to a survey of more than 10,000 people conducted by the Office of Greens Senator Jordon Steele-John.
Mr Steele-John said the survey found the process for a formal ADHD diagnosis in Australia was extremely costly and waiting lists were incredibly long.
“Medication is expensive and difficult to access, and follow-up care is lacking,” he said.
“Stigma and poor understanding of ADHD among healthcare providers is common.”
Submissions for the parliamentary inquiry into the diagnosis and treatment of ADHD closed on June 9 and its final public hearing was was held in Perth on Monday. A public hearing was also held in Canberra in June.
Senator Steele-John, who chaired the inquiry, said it was the first time a parliamentary inquiry had investigated the support and assessment needs of the ADHD community.
He said some of the solutions proposed by medical experts and advocates included “listing all ADHD medications under the Pharmaceutical Benefits Scheme and bringing child and adult diagnosis into Medicare so it can be fully covered”.
Senator Steele-John said the inquiry committee was also considering the benefits of training general practitioners to make ADHD diagnoses and providing integrated advice and support to the “whole of the health workforce”, so they understood what ADHD was and how to support people diagnosed with it.
The possibility of including ADHD within the NDIS was also being examined by the committee, which is due to publish its report on September 27.
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