ADHD: community responds to new clinical guidelines

The social and economic cost of attention-deficit/hyperactivity disorder (ADHD) in Australia has been estimated at $20.4 billion a year.

Economic costs are estimated at $12.8 billion, including health system costs (which are estimated at $800 million a year), while wellbeing costs are estimated at $7.5 billion, according to modelling by Deloitte.

People with ADHD report significant improvement in functioning across different settings when their ADHD is treated, which usually involves a combination of medication and psychological or behavioural interventions.

The prescription of stimulant medication for treatment of ADHD in Australia is overseen by both state and federal governments.

The regulations vary in the different states and territories in relation to GP involvement in prescribing but overall, in Australia, the majority of ADHD medication is prescribed by paediatricians and psychiatrists.

The new ADHD guidelines

In 2022, the Australian evidence-based ADHD clinical guidelines were published by the Australian ADHD Professionals Association (AADPA).

These highlighted that the optimal model of care for ADHD is multimodal — involving medication as well as non-medical management. The latter could include counselling or other therapy such as mindfulness or anger management, or learning life skills from an ADHD coach.

The AADPA Conference in 2022 brought together representatives from seven Australian ADHD community organisations, which included discussion on the latest clinical guidelines.

This event was vital in bringing together ADHD experts and people with lived experience, and gave the ADHD community the opportunity to further coordinate and organise.

Representatives from community organisations were invited to present the main concerns of their membership in writing and to contribute as panel members at a plenary session chaired by Alyssa Weirman.

Below is a summary of the ADHD community’s concerns that were discussed during the conference.

Insufficient number of specialists authorised to diagnose and treat ADHD

There is a severe shortage of the paediatricians and psychiatrists required to diagnose and treat ADHD (here and here).

This contributes to the difficulty and cost of getting a diagnosis.

Doris Hopkins, from Parents for ADHD Advocacy Australia, told the conference that waiting times for appointments are extensive.

The ADHD community believes there is a lack of awareness at a political level of the scale of the problem, particularly for adults, as ADHD is still being seen as a childhood disorder.

Solving this will require more involvement by paediatricians, psychiatrists, GPs, and qualified nurse practitioners.

There is a perceived a lack of initiative to train GPs to take a more active role in managing ADHD independently. Many people with ADHD can be adequately diagnosed and well managed by a GP who has had training and support.

But the barriers, which include lack of recognition of ADHD within the public health system and consequent lack of resources allocated to treatment, seem insurmountable and also require the involvement of the state and territory health departments.

Lack of training in ADHD among professionals

There needs to be a much higher standard of education on ADHD (here and here).

The community representatives believe that every medical, psychologist, occupational therapist, speech pathologist, and nurse training program should cover ADHD to improve our workforce understanding of this condition.

We suspect the current lack of training among professionals is one of the reasons appropriate ADHD treatment is lacking in Australia.

There also needs to be more integration and communication between the various practitioners, together with a clearer understanding of the ways that the different disciplines can contribute to the management of ADHD.

Lack of support and understanding of ADHD in schools

Associate Professor Louise Kuchel, of Square Peg Round Whole, commented that when a child is labelled as naughty, oppositional or defiant, this focuses on the deficits and stigmatises the child.

The ADHD community believes there is a lack understanding of ADHD in schools.

In a 2020 survey by ADHD Australia of parents of children with ADHD, 90% said that their children were not getting enough support for ADHD in school.

One-quarter of parents and carers of children with ADHD report disproportionate use of suspensions at school.

A 2021 survey of 1100 teachers across Australia found that 55% were not confident about managing ADHD in the classroom.

Teachers need evidence-based professional development on ADHD and how to support student learning.

Behaviour policies should include safeguards to reduce exclusions and build more empathy and understanding for students with ADHD.

School-wide approaches for behaviour support need to be geared towards inclusive, collaborative solutions-focused approaches rather approaches based on rewards and punishment.

Inadequate provision in the public sector and high cost of accessing treatment privately

In Australia, there are high costs for specialist and allied health appointments and for some medications.

The National Disability Insurance Scheme does not accept ADHD as a disability.

Adolescents and young adults must transition from a paediatrician to a psychiatrist for ongoing treatment. The age of transition varies from 16 to 25. This involves a referral to a psychiatrist who would be likely to reassess the young person for ADHD. The fees charged by a private psychiatrist for such an assessment and for ongoing treatment may be unaffordable for the young person or for their parents.

Cost of care is a major factor in accessibility of specialists and some families cannot afford the private fees involved.

Costings could come down if the federal health department pushed for ADHD to be diagnosed and treated in the public health system, with care provided and managed through GPs.

The need for a unified advocacy organisation

People with ADHD need an organisation to speak on behalf of ADHD to governments.

Collaboration and partnerships are much more powerful than separate organisations working on their own.

There have been informal national bodies advocating to governments, with their members writing to the Health Minister and to their local Member of Parliament. ADHD WA has had some success with a letter writing campaign, leading to an audience with the Parliamentary Secretary for Health.

But even an encouraging meeting with the Health Minister or the Parliamentary Secretary may not progress to action on upskilling GPs. The next move is a petition calling for a select committee to look at the shortage of services.

Lack of community understanding of ADHD, its attributes and complexities

ADHD is often complicated by other associated diagnoses such as dyslexia, autism, dyspraxia, and developmental language disorder in children.

The mental ill health and lack of community understanding and support may lead to anxiety and depression and suicidal thoughts and tendencies.

There is lack of community awareness about ADHD and its impact, including the difficulty of trying to live with the symptoms of ADHD.

The painful decision to medicate your child is something that most parents do not want make, and it is done with a lot of soul-searching.

Helping people with ADHD

The stigma associated with ADHD medication affects all of the ADHD community because it casts a cloud over everything to do with ADHD and its treatment.

The diversity of information on the internet and social media can be confusing and misleading. As a consequence, the journey to find an accurate diagnosis, effective treatment and management can be long, expensive and overwhelming, and lead to disillusionment.

It is therefore important to have sources of information that are easily accessible and accurate to meet the needs of a variety of ADHD consumers. The information should be realistic, in order to manage expectations and prevent early withdrawal from the journey.

We need to look for the positive side to ADHD – as a difference rather than a disorder. People with ADHD can be encouraged to recognise and use their strengths, such as their creativity for having new ideas. Their willingness to take positive risks could also be an advantage in the right settings.

Conclusion

There are significant hurdles that need to be overcome before the ADHD community will be able to benefit fully from the new ADHD guidelines.

These particularly relate to the limited access to affordable care from appropriately trained professionals. The conclusions accord with the findings of the 2019 Henry Review of paediatric services in New South Wales: that existing services for ADHD are inadequate and that new models of care that include GP prescribing are needed.

There is a significant role for organised advocacy for investment in training professionals, increasing services, particularly within the public sector, and loosening the prescribing regulations to allow upskilled GPs and/or qualified nurse practitioners to treat ADHD.

Overall, we need to remember to be empathetic to people and families with ADHD to ensure people with the condition have fulfilling and supported lives.

Dr Alison Poulton is an academic paediatrician at the University of Sydney specialising in ADHD.

The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated. 

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