Pathways to care for young people diagnosed with functional tic like behaviours in the United Kingdom: An online mixed-methods survey

Aim: This study aimed to analyse the pathways to obtaining a diagnosis of functional tic like behaviour (FTLBs) in the United Kingdom.
Methods: The primary caregivers of children with FTLB (n=55) were recruited through charities and completed an anonymised survey. The authors established the pathway to any diagnosis, gaining information about their child’s tics, their impact and the sequence of health care professionals (HCPs) they had contacted, that had either led/not led to a diagnosis and any support on offer. Mixed-method analyses were conducted on the surveys.
Results: Many of the characteristics of the children met the criteria for FTLBs, with over half of the children (n=30; 55%) also showing self-harming and suicidal ideation behaviour. Mothers reported often finding themselves seeing more than three different services and being given differing labels for their child’s symptoms (e.g., Transient Tics, PANDAS). There was little clear guidance of how to manage symptoms, with those who were able to access treatment offered CBT, counselling and/or medication. There were several families still waiting to be seen (n=13; 24%), however, of those who had received a diagnosis, almost one-third had accessed support from private healthcare providers (n=14; 25%).
Conclusions: Pathways to diagnosis for young people showing FTLBs is complex, time consuming and can involve multiple health care contacts, with patients alternating between primary and specialised care. Our findings reflect failures in the diagnostic protocols and referral systems of health care in the UK and a general lack of understanding and specialist skill or knowledge relating to FTLBs.