Struggles, Sufferings and Hope within ADHD crisis of Australia

Even when a patient manages to get an appointment with a psychiatrist, the cost of undergoing an ADHD evaluation can be prohibitive for many.

Twenty-seven-year-old Rashmi Patel* is a student of nursing at Latrobe university. She comes across as a self-assured, confident young woman pursuing her childhood dream of becoming a registered nurse.

The course schedule for the three-year degree is intense. It requires tens of hours of rigorous study and clinical work each month. Balancing it with family commitments, which include raising a two-year-old, Rashmi is required to consistently plan, prioritise, and manage her time.  

Four years ago, it would have been almost impossible for Rashmi to imagine herself pursuing a course requiring such concentrated and prolonged effort.  She had struggled with poor concentration and focus ever since childhood. While considered herself to be a ‘bright’ child, her schoolteachers had always complained about her lack of motivation and attention. Her inability to focus on schoolwork often led to delayed or missed assignment submissions and below-average grades. 

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During her teenage years, she struggled with forming friendships at school and suffered from debilitating anxiety and low self-esteem. She dropped out of school in Year 10 and found work as an office administrator but was fired for poor performance. 

Rashmi eventually saw a GP for worsening depression and anxiety following the breakdown of a long-term relationship.

Listening to Rashmi describe her life-long struggle with poor time management, procrastination, impulsiveness and disorganisation, the GP raised the possibility of a common mental condition causing all of Rashmi’s varied symptoms. 

Representative picture ADHD; Image Source: @canva
Representative picture ADHD; Image Source: @canva

Suspecting that Rashmi was dealing with ADHD or “attention deficit hyperactivity disorder,” she made a referral to a psychiatrist who ultimately confirmed the diagnosis and prescribed stimulant medication to treat the condition. Rashmi noticed a significant difference almost immediately. 

“I believe the diagnosis saved my life in more than one way. For the first time in my life, I felt in control. My mind which was constantly racing before began to calm down. I began to feel like a completely different person.  I could never have imagined going back to finish school and then starting a nursing degree but here I am! “

Rashmi’s story is hardly unique. Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental disorder that affects almost a million people in Australia today.

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The condition which typically starts in childhood is associated with impulsive and hyperactive behaviours, lack of attention and focus, an inability to concentrate and emotional outbursts. 

It is estimated that one in twenty Australians have one of the three variants of the condition- “impulsive and hyperactive”,inattentive” or a mix of both. There is a strong genetic component to the condition, and it is quite common for multiple members of the same family to have ADHD.

The impact of ADHD on an individual’s personal and professional life is enormous.  People with ADHD are more likely to suffer from other mental health conditions like depression and anxiety, low self-esteem, eating disorders and substance abuse.

Representative picture ADHD; Image Source: @canva
Representative picture ADHD; Image Source: @canva

Sufferers have significant difficulty in managing priorities, keeping up with appointments, following instructions, meeting deadlines, and following routines. Heightened impulsivity, risk-taking behaviours, and substance abuse lead to disruptive behaviours at home and in the workplace.

People with ADHD often turn to substance abuse to try and manage their symptoms, often with distressing results. 

It is a devastating condition, but the good news is that it can be managed and treated very effectively through appropriate medication.

Yet hundreds of thousands of Australians continue to suffer in the absence of treating clinicians and lack of support within the public health system. 

Rashmi says, ” When my GP referred me to a psychiatrist for an ADHD evaluation, I did not expect that I would have to wait six months to be seen. I also did not imagine having to travel to the other side of town as no doctors in my area were taking on patients with ADHD.”

Rashmi’s struggle is shared by most patients in Australia, where ADHD remains an underfunded and under-researched area of mental health.

Given the enormous scale of the problem, it is almost incomprehensible that the public health system in Australia does not deal with ADHD at all. It is next to impossible for a patient to receive a diagnosis or treatment of this debilitating condition through any publicly funded mental health services. 

Representative picture ADHD; Image Source: @canva
Representative picture ADHD; Image Source: @canva

There is growing awareness about the condition in the community and more and more people with symptoms or a family history of ADHD have begun to request their GPs for ADHD assessments.

The GP then has the task of referring the patient to the appropriate specialist in the private sector where fiscal costs become a barrier for many.

Children under the age of 18 are referred to paediatricians who can diagnose and treat the condition until the child transitions to adulthood.

Adults are referred to psychologists or psychiatrists. While psychologists can diagnose the condition, medication can only be prescribed by clinical psychiatrists.

Psychiatrists treat ADHD with stimulant medication that regulates impulsive behaviour and improves attention span and focuses by changing the levels of certain chemicals in the brain

The condition is extremely responsive to treatment and with adequate medication, patients find that their quality of life improves dramatically in a short period of time.

However, in Australia, the process of obtaining a diagnosis and medication is long, tedious, and extremely expensive.

In the private sector, there are only a handful of psychiatrists that treat ADHD.  This area is hugely under-serviced and there is an extremely large gap between need and availability.

Many of the specialists who treat ADHD have their books full and are refusing new patients. 

For those psychiatrists that are still accepting new patients, the waiting time can be as long as 12 months. 

Representative picture ADHD; Image Source: @canva
Representative picture ADHD; Image Source: @canva

For adults who have never been previously diagnosed, this can be a time of gnawing anxiety. Untreated ADHD continues to wreak havoc in their lives as they helplessly wait for help.

The situation is even worse for children who turn 18 and can no longer be managed by their paediatricians. The long wait time to transition to a psychiatrist can mean that they are without medication at the most crucial juncture of their lives.

The situation is so dire that a psychiatrist commented, “On average, our clinic receives 8-10 referrals for ADHD every single day. We simply cannot accommodate the sheer volume of patients and have to strictly triage the referrals. It is devastating to tell desperate parents that they would need to wait 6-8 months to have their child seen”

The reason why more psychiatrists are not treating ADHD, despite the obvious and urgent need, are complex. 

Up until a decade or so ago, adult ADHD was not considered to be a ‘ real condition’. It was classified as a childhood disorder, affecting mostly boys. It was assumed that children outgrew the disorder as they transitioned into adulthood. 

This theory has now been soundly discredited and it is estimated that more than half of children with ADHD will continue to experience symptoms all through their lives. 

The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, has also expanded the diagnostic criteria for ADHD removing previously limiting criteria such as the age of onset being before seven years.

However, many psychiatrists continue to remain sceptical about its existence in the adult population. 

The hesitancy to treat is further compounded by the fact that ADHD is treated with medication that is often viewed as highly addictive and habit-forming. 

The medication is strictly regulated under the Schedule 8 category of drugs and psychiatrists must apply for permits to prescribe. The seemingly complex management of stimulant medication prescription can be a deterrent for psychiatrists. Fearing adverse implications from medication abuse, many psychiatrists choose not to treat ADHD at all.

Even when a patient manages to get an appointment with a psychiatrist, the cost of undergoing an ADHD evaluation can be prohibitive for many. The ADHD diagnostic process is lengthy and numerous meetings between the patient and psychiatrist are required. Each appointment comes with a hefty out-of-pocket fee for the patient.  The cost can easily run into thousands of dollars, despite Medicare rebates.

Representative picture ADHD; Image Source: @canva
Representative picture ADHD; Image Source: @canva

Medication can also be expensive to obtain. While PBS does subsidise most of the stimulant medication required to treat ADHD, there is a threshold to the subsidy, after which all medication must be purchased at full price. 

There are many patients who are faster metabolites of the drugs and require more medication than that subsidised by PBS. Without the subsidy, the medication is extremely expensive. This leads to patients being under-medicated and sub-optimally managed.

These multiple factors have led to the ADHD scenario becoming a crisis of major proportions. Sweeping changes in the mental health sector are the need of the hour.

Untreated ADHD is not just devastating for the patient, it comes with a cost to society as a whole. Economic research estimates the cost of lost productivity, health system expenses, and educational, crime and justice costs to be in excess of $ 20 billion a year.

New Zealand recently announced that its top healthcare agencies have begun work to identify changes that will improve access to medicine and treatment for people with ADHD. Similar discussions are urgently required in Australia. The public system needs to step in and take the pressure off private psychiatrists. In the private sector, more psychiatrists need to be encouraged to start treating ADHD. 

Primary care physicians need to be trained in the diagnosis of ADHD and more flexibility in allowing them to prescribe stimulant medication needs to be considered.

There is a demand from ADHD consumers and support groups for more funding for the establishment of ADHD Specialist Clinics within an integrated Public and Private Mental Health System and better flexibility within the PBS system.

In the words of Rashmi,

“All my life, I have felt like an outsider. At school, I could never focus on the lesson – my mind was in a thousand places at once. I was always getting into trouble without even realising why. Things are so much better now. I finally know what it feels like to be part of the conversation. I am sad for all the years I lost to ADHD but so grateful that I am now able to pursue my dreams.