Each year, October 9th marks PANS PANDAS Awareness Day, time to reflect, raise awareness, and deepen our understanding of two complex and often misunderstood medical conditions.
Building on last year’s blog, which explored the impact of PANS and PANDAS on young people in the classroom, this year PANS PANDAS UK acknowledges the progress made with local authorities and the Department for Education, while also highlighting the ongoing challenges faced by families.
For educational psychologists, these developments offer important context for understanding how systemic responses can shape the support available for this cohort in educational settings.
Recognising the nuances of presentation
Children and young people with the post infection conditions of PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) or PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) can experience a sudden and dramatic shift in behaviour, cognitive functioning, physical and mental health impacts. These abrupt changes can be both deeply distressing for families, children and young people and highly confusing for professionals.
Presentations may include the sudden onset of obsessive-compulsive thoughts and behaviours, restricted eating, motor and vocal tics, separation anxiety, toileting difficulties, emotional dysregulation, heightened sensory sensitivities, executive functioning challenges, and a decline in handwriting skills. The abrupt and wide-ranging nature of these symptoms, often emerging in a previously well child or young person, is striking.
An exacerbation of PANS and PANDAS symptoms (aptly described as a flare) is reported by many families to be an intense, often overwhelming episode that typically ignites suddenly. Once the flare subsides, it often leaves behind a child or young person enduring a charred emotional and functional landscape, sadly marked by distress and ongoing impairments.
While the rapid onset and broad range of symptoms associated with PANS and PANDAS are clinically distinctive, many of the individual presentations such as obsessive-compulsive behaviours, emotional dysregulation, or sensory sensitivities are not uncommon in educational settings. This overlap can easily lead to misinterpretation, including when symptoms of PANS or PANDAS overlap with neurodivergent traits.
Families frequently also report that neurodivergent children and young people are especially vulnerable to misdiagnosis when they develop PANS or PANDAS. In these cases, new or escalating symptoms are often attributed to their underlying neurodivergence, for example autism, rather than recognised as indicators of a separate, medically driven process.
The recent Children’s Commissioner’s School Census (2025) cautioned against the over-medicalisation of children’s or young person’s needs, a perspective that encourages careful reflection on the use of diagnostic labels.
‘Wider needs are too often either unrecognised, ignored, or shoehorned into a SEND system which isn’t designed to provide the right support, where wider needs often manifest as learning needs. No child should be pushed to getting a medical diagnosis for behaviours that are natural responses to the challenges they are facing in their lives. (p.7)
Yet, when educational systems lean too heavily on non-medical interpretations, they risk overlooking serious conditions like PANS and PANDAS. In these cases, acute, biologically driven symptoms are frequently misread as emotional or behavioural issues, and the underlying medical causes may themselves be misattributed to trauma or adversity. Striking an informed balance is essential, one that neither pathologises distress unnecessarily, nor dismisses genuine medical conditions as purely psychosocial.
Timing and context matter for assessment
Once a cluster of unexplained changes in a child or young person is observed, the next step is often a well-informed assessment. However, this is where professionals find themselves navigating uncertain terrain. PANS and PANDAS can manifest through a constellation of symptoms that may appear fragmented or atypical, increasing the likelihood of defaulting to familiar diagnostic categories that don’t quite fit, especially when the more distinctive features of these conditions often go unrecognised.
The timing of assessment in cases of PANS or PANDAS is critical. During a flare, symptoms may present as severe and pervasive; during partial remission, they may appear diminished or inconsistent. This variability poses a genuine risk of either underestimating or overestimating a child or young person’s needs, especially when those needs may be transient, persistent, or a combination of both.
If the cyclical nature of PANS or PANDAS is overlooked, assessments can easily become skewed, focusing narrowly on what is observable in that moment while missing the broader patterns and potential medical underpinnings. This can again result in misclassification, inappropriate educational planning, and delayed referral for medical evaluation.
The Educational Psychologist’s role in supporting children and young people
Accessing a diagnosis and treatment for PANS or PANDAS in the UK is currently difficult, leaving many children or young people likely to be under-supported in the education system. Educational psychologists can play a vital role in helping schools respond to a child or young person’s fluctuating presentation.
Support may need to shift between compensatory strategies during flare-ups and re-engagement approaches during periods of recovery, aligned with the child’s or young person’s social, emotional, and mental health needs when they feel well enough to participate.
Whilst tailored educational accommodations are undoubtedly important, it is important to avoid attributing a child’s or young person’s progress solely to these interventions. In PANS and PANDAS, symptoms are typically relapsing and remitting and improvements in functioning may also reflect a period of medical stability rather than being the direct result of educational input. Misinterpreting this can again delay appropriate medical referral and lead to misclassification.
Research: a shared responsibility
Despite growing awareness of PANS and PANDAS, there remains a striking lack of educational research, contributing to professional uncertainty and inconsistent responses across disciplines. This absence of a research-evidence base leaves educational psychologists navigating a fragmented landscape, where varying levels of understanding among professionals and organisations can hinder collaborative decision-making.
Compounding this issue is the lack of reliable incidence data in the UK. In a climate of high demand and limited resources, this data gap makes it harder to justify investment in research, training, and service development; further marginalising affected children and young people. Encouragingly, plans for a UK-based incidence study are now underway, but this is realistically going to take some time.
This challenge also presents a critical opportunity. Educational psychologists are well placed to contribute to a more coherent and informed approach by documenting case studies, engaging in interdisciplinary research, and advocating for the inclusion of PANS and PANDAS in professional training.
Building interest in this area begins with a commitment to reflective practice; ensuring that children and young people are not only seen through an educational lens, but also understood within the broader context of their health. The presence of over 7,400 members in the PANS PANDAS UK private Facebook group is a powerful reminder that this is not a niche issue, but one affecting thousands of families seeking recognition and support.
Signs of positive practice
Last’s year’s blog concluded with the theme of Hope and Moving Forward. Since then, we have witnessed encouraging signs of progress. These include:
- a Local Authority update on PANS and PANDAS
- the re-convening of the PANS PANDAS All Party Parliamentary Group (APPG)
- correspondence from both the Department of Health and Social Care (DHSC) and the Department for Education, (DfE)
- further development of free training for key professionals.
These are significant steps forward, but their true impact will depend on how swiftly and effectively they are adopted and implemented in practice.
For children and young people with PANS and PANDAS, time is critical. A year is not a policy cycle; it is a significant period in a child’s or young person’s life and the question we must keep reflecting on is: has their experience on the ground improved?
By October 2026, we expect the publication of Royal College of Paediatrics and Child Health (RCPCH) UK accredited clinical guidelines, and Local Authority guidance to be in place. The challenge is to ensure that these developments lead to change that is felt by children, young people, and their families; not just recorded in policy documents.
Further Resources
PANS PANDAS UK – Further Education Resources
Ask the Educational psychologist – A series of recorded education Q and A tailored for parents/caregivers- with many thanks to the educational psychologist Dr Joanne Riordan
What happened to Evan’s writing? (Dyslexia and PANS and PANDAS)
Engagement with The Department for Health and Social Care (DHSC) and the Department for Education (DfE)
MIMS CPD accredited online 0.5hr Learning Module for all health professionals
