Australians living with attention deficit hyperactivity disorder (ADHD) have been marginalised and stigmatised for many years, Professor Mark Bellgrove, from Monash School of Psychological Sciences said.

It is estimated one in 20 Australians have ADHD but many have been misdiagnosed, been met with barriers when accessing treatment or dealing with stigma.

Which is why the Senate’s Barriers to consistent, timely and best practice assessment of attention deficit hyperactivity disorder (ADHD) inquiry, and the 15 recommendations the committee has put together, is a step in the right direction, according to Bellgrove, who is also director of research at the Turner Institute for Brain and Mental Health.

“It is a landmark report and a real, I think, watershed moment, to give you two cliches,” Bellgrove told The New Daily.

“And that is because I think for too long, ADHD has been treated as a condition which, for many, there’s been a lot of misinformation around the condition, a lot of stigmatisation of people living with ADHD.”

Widespread support

The Royal Australian College of GPs (RACGP) also welcomed the inquiry and the report’s recommendations for GPs to have a greater role in the diagnosis and management of ADHD.

RACGP Vice President Bruce Willett said long waits for specialists and high costs are a significant barrier for patients living with ADHD, particularly adult patients who do not have access to diagnosis via a paediatrician and patients outside major cities.

“We welcome the Inquiry’s recommendations and support moves towards a nationally consistent approach that helps adults and children with ADHD, and symptoms of ADHD, access support via their GP and a coordinated team of health professionals,” he said.

“Many GPs are ready to help individuals and families who need support with ADHD in a shared care model with psychiatrists, paediatricians, and allied health professionals.”

Dr Willett said enabling GPs to improve early diagnosis and better support people living with the condition would have huge benefits for Australia.

“At the moment there are too many barriers to optimum treatment including challenges of getting appointments with specialists, the cost of these appointments, unclear referral pathways and a lack of coordination between different services,” he said.

“ADHD costs the Australian economy more than $20 billion per annum, but earlier diagnosis and better access to treatments could not just reduce the impact on our patients, but also lead to substantial savings.

“At the moment wait times for a diagnosis can be several months, and a diagnosis can cost a patient more than $700 for a telehealth diagnosis, though we have seen reports of people paying as much as $3000.

“GPs can alleviate that burden, and as this report recognises, the recently published ADHD clinical guidelines have given GPs a comprehensive, evidence-based resource to guide the diagnosis and management of ADHD and the Government should implement this framework into practice.”

He said the RACGP would also welcome reducing regulatory barriers so GPs with an interest in the area and appropriate training can continue and commence prescriptions for stimulant medicines for people living with ADHD.

“There is also scope for increasing rebates for longer consultations which are currently lower per minute for longer consultations which disadvantages people who require more time with their GP, including patients with ADHD. Increased investment in longer consultations is a simple way to build additional support for these patients,” Dr Willett said.

Greens health spokesman Jordon Steele-John called the report historic.

“For the first time, it indicates a willingness by our decision makers to address the barriers to ADHD care in this country,” he said.

There were 701 submissions for the inquiry and 79 witnesses, and Bellgrove praised the people with ADHD who spoke up, the clinicians who treat them and the Senate committee for looking into the disorder.

ADHD is a chronic and complex neurodevelopment condition, the Senate report says.

“The diagnostic criteria focus on persistent patterns of inattention and/or hyperactivity-impulsivity. ADHD can impact all elements of a person’s life, including the way emotions and senses are regulated,” it says.

Most people are diagnosed with ADHD before they turn 12 years old, but there are several factors that could lead to a diagnosis much later in life, such as masking, individual environments and access to health care.

Sometimes, children with ADHD are unjustly deemed “lazy” when they are not given adequate support, which can lead to issues in school or lead to social exclusion.

Similar issues can follow people with ADHD when they enter adulthood, enter the workforce, navigate mature relationships, or interact with the justice system.

The submissions highlighted that ADHD can greatly affect one’s life and how being diagnosed can be of benefit.

One person who was diagnosed at 31 years old and had their submission used in the report said that diagnosis “profoundly” changed their view of themselves.

“I have spent my life being misunderstood and misdiagnosed by family, friends, education systems and health systems,” they said.

The committee identified several barriers people living with ADHD faced, including lack of access to services, the high cost of services, poor customer service due to the lack of information, and a lack of support in schools.

Additionally, the committee found there were specific challenges for key groups such including “girls, women and gender-diverse people, First Nations peoples and people from culturally and linguistically diverse backgrounds”.

ADHD inquiry recommendations strike a balance

The report put forward 15 recommendations, which Bellgrove says “strike a nice balance between what is practical and implementable, what is evidence based, and what is appropriate, and takes into account those lived experience perspectives”.

The recommendation span from having a national framework, which would be designed together with people with ADHD as well as ADHD advocacy and community organisations, to assessing existing schemes and benefits to ensure people are getting appropriate access.

Bellgrove says all of the recommendations are equally important and he suspects they will all prove to be beneficial.

He noted the need for understanding people’s lived experiences and the need for incorporating those experiences into research and for targeted media campaigns to help eliminate stigma.

“That in and of itself will make a tremendous difference to folks with ADHD because they will report to you that the thing they find most difficult is actually living with the stigma surrounding ADHD,” he said.

The Senate committee recommended that governments should review services like Medicare and pharmaceutical subsidies to improve treatment, diagnosis and support options while clarifying information about the eligibility of ADHD under the NDIS.

Bellgrave said changes to Medicare will allow people to get treatment at a more affordable cost, which is very important.

Another recommendation is having the government consider whether other healthcare professionals, like nurses and GPs could provide ADHD assessments, which would not only benefit patients, but the whole sector.

“That will reduce bottlenecks that are currently there for seeing psychiatrists, psychologists, paediatricians,” Bellgrove said.

A step in the right direction

Globally 2.5 per cent of adults have, or will have a diagnosis of ADHD, Bellgrove said. However, Australia’s data is significantly less than that.

“So despite what you might hear in some quarters of the media, it’s definitely not overdiagnosed [adult ADHD],” he said.

“We’re getting better in the sense more people are coming forward. But what we need is more appropriately trained clinicians to do a really accurate valid diagnosis and to reduce the bottlenecks engaged in gaining access to treatment.”

In a piece for The Conversation, foundation chair of developmental mental health at the University of Melbourne, David Coghill, noted that awareness and acceptance of ADHD has led to adults seeking assessment and treatment.

“The report makes 15 recommendations, all of which should be welcomed by Australians with ADHD and those involved in supporting them,” he wrote.

“The committee emphasises that ADHD is not just a mental health issue but a public health concern.”

There might be dissenting voices, even within the inquiry, but Bellgrove noted that it was overall a positive step in the right direction.

“Folks with ADHD deserve better than they have been getting and I think this is a tangible step in the right direction,” he said.

This is an edited version of a story that appeared in our sister publication The New Daily.