PANS / PANDAS Standards of Care
Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) are a set of conditions which result in an inflammation of the brain causing a variety of neuro-psychiatric conditions such as obsessive compulsive disorder (OCD), tics and eating restrictions (Swedo, Frankovich & Murphy, 2017). Identifying and proving appropriate treatment for anyone who has PANS / PANDAS is challenging to navigate (PANS PANDAS UK, 2023) with children and young people often being guided towards Child and Adolescent Mental Health Services (CAMHS) before physiological testing is fully explored. Children and their caregivers face challenges and injustices in accessing appropriate NHS Care. There are limited published studies guiding clinical practice. Furthermore, this is exacerbated by the absence of PANS or PANDAS NICE guidelines.
PANS PANDAS UK charity was created in order to raise awareness and understanding of PANS / PANDAS amongst the general public, education and health care professionals. Together with colleagues who sit on the PANS PANDAS Working Group (PPWG) and backed by NHS England we have developed an initial Working Statement to improve standards of care for people with symptoms of PANS and PANDAS in the UK.
Children with acute onset neuropsychiatric symptoms can have severely compromised access to education and a normal quality of life. From an Occupational Therapy perceptive, a mixed-methods study concluded that many activities of daily living and occupational performance was being impacted by the symptoms of PANS. This included participation within maths, handwriting, free play, sports, community activities and social activities. The study continued to highlight specific skills including memory, attention, sequencing, energy and motivation were also commonly affected by PANS. From the research sample, the children required additional assistance and adaptations to feel confident in their participation in activities of daily living (Tona, Bhattacharjya & Calaprice, 2017).
PPWG encourage all professionals involved with each patient to understand the difficulties that this presents to the patients, their families, educational settings, and clinicians. Parents report that “life suddenly turned upside down” (Demchick et al., 2019) due to PANS / PANDAS. As Occupational Therapists understanding the person, occupation and environment this is our core language which guides our collaborative occupational therapy process including assessment and intervention.
The PPWG recommends that all NHS Trusts develop comprehensive cross-speciality multidisciplinary team (MDT) provision to review and treat children with PANS PANDAS symptoms. Absence of a local MDT should not prevent clinicians from exercising their proficiency and judgement acquired through clinical experience, knowledge and practice in treating children presenting with PANS or PANDAS symptoms.
Find out more about PANS PANDAS UK and read the working group statement