Around 50,000 Australians are living with tic disorders and GPs have an important role to play in supporting those patients, writes Dr Melissa Licari.
A young patient presents to their GP, accompanied by a concerned parent. The child has been experiencing sudden, involuntary movements and sounds – facial grimacing, head jerking and throat clearing – that are becoming increasingly noticeable.
The parent is anxious, unsure whether these behaviours are a sign of something serious. The GP attributes them to anxiety, recommending a watch-and-wait approach and advising stress reduction, but offers no further investigation or referral.
It’s an all-too-common scenario for children with tic disorders. While for some, tics resolve quickly, for others they persist or worsen. In Australia, about one in 100 children will experience persistent tics.
Of these, 75% will see symptoms peak between ages 10–12, after which their tics often gradually reduce. However, the remaining 25% will continue to experience tics for life. Currently, about 50,000 Australians live with a lifelong tic disorder.
Australia’s first national survey evaluating the unmet needs of people with tic disorders – Impact for Tourette’s, led by The Kids Research Institute Australia and UNSW Sydney – has revealed worrying gaps in the healthcare system.
RELATED: What do you know about tic-related disorders?
Delays in diagnosis, inconsistent access to care, a lack of knowledge among medical professionals, and limited availability of evidence-based interventions are having a profound impact on the lives of people with tic disorders.
Dealing with delays
Many individuals with tic disorders experience significant delays in diagnosis. Our survey found one in four individuals waited more than two years for a diagnosis, with some waiting up to four years.
Poor understanding of tic disorders within the healthcare system exacerbates the issue. When patients with severe tics or tic attacks present to emergency departments, they are often misidentified as intoxicated or experiencing a mental health crisis, leading to unnecessary treatments or dismissal.
Similarly, when patients see specialists, they often leave with a prescription for medication but no guidance on managing their condition.
Although tic disorders like Tourette syndrome are lifelong for many, early intervention can make all the difference – improving understanding, reducing tic severity, and boosting quality of life.
Instead, many patients report being dismissed or not believed, with symptoms often attributed to anxiety or stress – delaying proper care and prolonging unnecessary suffering.
The GPs’ role
As the frequent first point of contact, GPs play a critical role in early diagnosis, support and referral. Lack of knowledge can result in missed opportunities for timely intervention.
Considering tic disorders as a possible diagnosis rather than attributing symptoms to anxiety, GPs can refer patients to paediatricians, neurologists, or psychiatrists who specialise in tic disorders for further evaluation.
While there is no cure, tic disorders can be effectively managed and sometimes even significantly reduced through evidence-based treatments and therapies.
While medication can be effective for some individuals, first-line interventions such as Comprehensive Behavioural Intervention for Tics (CBIT) and Exposure and Response Prevention (ERP) can reduce symptoms and improve quality of life.
GPs can also provide families with educational resources and offer guidance on managing the condition more effectively.
The emotional toll
Having a tic disorder takes away control of your body. It can cause pain and injury and affect your ability to concentrate, perform simple daily tasks, relax or even sleep.
Compounding this, limited access to treatment and support, being turned away by the NDIS, bullied at school, unable to work, and constantly stared at by a society that does not understand, and you begin to grasp just some of the burden being carried by individuals living with tic disorders, and their caregivers.
Unsurprisingly, these challenges in turn impact mental health. Our national survey revealed 70% of people with tic disorders have an anxiety disorder, one in three experience depression, more than half have thought about ending their life, and one in four adults and one in 10 children have attempted suicide. Access to psychologists specialising in tic disorders is critical.
The survey also revealed almost 80% of caregivers face mental health issues, often due to the significant care burden. Caregivers also need support.
Immediate action is needed to address health system gaps. By proactively considering tic disorders as a potential diagnosis, GPs can ensure timely referrals to specialists and early intervention.
Medical professionals, including tic specialists, should also provide individuals and families with educational resources – readily available from the Tourette Syndrome Association of Australia (TSAA) – and offer guidance on managing the condition effectively.
Given the common co-occurrence of mental health issues such as anxiety and depression, healthcare professionals should screen for these conditions and refer patients to appropriate mental health support when needed.
Additionally, when patients present at EDs or seek specialist care, it is vital that all healthcare professionals recognise tic disorders – avoiding misdiagnosis and ensuring appropriate treatment and support.
While broader systemic changes, such as the development of a National Clinical Guideline, are needed for long-term improvements, healthcare professionals can make a significant difference today.
By improving early recognition, offering timely referrals, and providing holistic care, they can reduce delays, improve treatment, and ensure patients with tic disorders receive the care they need.
ED: Dr Licari is a senior research fellow at the Kids Research Institute Australia
Want more news, clinicals, features and guest columns delivered straight to you? Subscribe for free to WA’s only independent magazine for medical practitioners.
Want to submit an article? Email editor@mforum.com.au