PANS and PANDAS: Developing Awareness and Effective Practice in Education

Tina Coope is the Education lead at PANS PANDAS UK, working to raise awareness of the conditions amongst educators and to support the development of effective practice.  She has written multiple education resources about the conditions and has created the first teacher training presentation in the UK.

What are PANS and PANDAS? 

PANS and PANDAS are post–infectious, autoimmune/inflammatory medical conditions which affect both physical and mental health. Typically relapsing and remitting they can be triggered by common infections (for example, strep throat, chickenpox, or covid-19). Much of the focus has been on children and onset usually happens between three and 13 years, but PANS can also affect adults and the conditions do not just disappear at 16.  An exacerbation of neuro-psychiatric symptoms post infection is known colloquially as a ‘flare.’

PANS (Paediatric Acute-onset Neuropsychiatric Syndrome)

PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)

Children/young people with PANS and PANDAS can quickly change from thriving in school to developing a broad range of symptoms including:

•  extreme obsessive-compulsive behaviours
•  motor and vocal tics
•  severe generalised and separation anxiety
•  behavioural regression
•  sensory needs
•  emotional regulation issues
•  restricted food intake
•  sleep disturbance
•  urinary problems
•  development of learning difficulties.

Not all children/young people will have every symptom. The severity of the symptoms can also vary greatly across individuals, and within the same child/young person at different stages of the condition.

When education professionals hear about PANS and PANDAS, a typical response is often either a blank look or a wry glance, coupled with a reference to the controversial label that has historically surrounded these conditions.

This reaction is not at all surprising given past medical debates around the diagnosis and classification of PANS and PANDAS. Compounding the issue further is the fact that most educators are unfamiliar with the conditions, and that the ever-changing symptoms of PANS and PANDAS can easily be mistaken for poor parenting, neurodevelopmental conditions or alerting signs of safeguarding issues. Historical challenges accessing a diagnosis on the NHS have also led to many families seeking private health care* which has on the ground been problematic in some schools.

This situation has often left families supporting children/young people with PANS/PANDAS caught in a complex web. Frequently stuck between health services, and with the root causes of their child’s/young person’s symptoms in schools both under-estimated and misinterpreted.

Parent/caregivers of a children/young people with PANS or PANDAS

The medical picture of PANS and PANDAS

The UK landscape around PANS and PANDAS is now rapidly evolving.  Within the last twelve months, there have been several significant developments. These include the formation of the PANS PANDAS Steering Group (PPSG) with representation from multiple Royal Colleges, [1] alongside the explicit acknowledgement of both PANS and PANDAS as discrete diseases recognised by the NHS.

PANS PANDAS Steering Group/February 2023

PANDAS also has designated WHO ICD-11 codes 8E4A.0 and 8AO5.10, highlighting its recognition as a distinct disorder.  Notably information about PANS and PANDAS is now also included on the British Paediatric Neurological Association (BPNA), the Royal College of Occupational Therapists (RCOT) and the Royal College of Nursing. (RCN) websites.  

The PPSG research sub-group have also recently completed an application for a UK wide surveillance study to gather incidence data. Additionally, a consensus sub- group will engage professionals from all relevant fields to agree interim management guidelines. These will be put in place until sufficient research is in place to apply for NICE guidelines. A collaboration involving representatives across social care, health and education has also led to the formation of a further sub group. Their goal is to produce information on the conditions to be distributed across Local Authorities.

Schools

Where does that leave children/young people with PANS and PANDAS in education?

Schools are increasingly encountering children/young people with these diagnoses in their settings, and these numbers are expected to increase. Whilst the medical community advances efforts to delineate pathways for diagnosis and treatment, the growing numbers of diagnosed children/young people in educational settings need support now.

The current situation is challenging to say the very least. Parents/caregivers are reporting a wealth of difficulties going right back to the basics, i.e. having their child’s/young person’s diagnosis accepted by schools and Local Authorities.  On top of that often comes parent blame and frustratingly inaccurate assessments and interpretation of the child’s needs.

In ‘straightforward’ cases, PANS and PANDAS differ from developmental conditions in their often-rapid onset and the lack of emerging signs of difficulties. Children/young people can unexpectedly develop SEND that are wide ranging. Often the initial focus is on the most ‘dramatic’ symptoms such as the sudden onset of severe anxiety or physical signs such as tics.  This weighted picture is then presented to further professionals which is unhelpful at best and contributing to misdiagnosis at worst. The key principle of giving due attention to all new impairments is being hampered by a lack of training and educational awareness of PANS and PANDAS. 

Equally challenging is the often-dramatic waxing and waning presentation of children/young people. If the fluctuating trajectory of symptoms is not recognised as transient, this can have far reaching implications for a child.  Families have reported that their child or young person with PANS/PANDAS has been permanently placed in specialised provision based on the outcomes from assessments at the height of a ‘flare.’

Families trying to explain the ‘change’ in their child/young person to professionals has also been fraught with difficulties.  Parents/caregivers have been told that their child/young person is now suddenly autistic or has ADHD, and that they just didn’t notice the early signs.  Other children are diagnosed with dyslexia, when earlier writing samples, school and parental reports document a child who had been exceeding expectations. Children/young people can of course have co-occurring conditions, but the importance of tracking an accurate time-line cannot be overestimated.

If families persist with the narrative of a ‘change’, professionals often begin to question parent/carers to suggest that they are struggling to come to terms with a particular diagnosis.  Over time no professional has ever seen the child/young person present any differently. A pre-onset baseline has seldom been explicitly documented, and rarely has the child/young person been assessed following a flare to ensure that any impairment in skills have resolved.  Some children/young people with PANS/PANDAS are losing their baselines and this is largely going unacknowledged.  Conversely once diagnosed and effectively treated, children/young people with PANS/PANDAS can also improve dramatically including in the areas of cognition and learning.

Research

The educational consequences for these children/young people in the current climate are stark.

PANS PANDAS UK undertook a survey in 2022[2] whereby they questioned 217 parent/carers of children/young people with suspected or diagnosed PANS/PANDAS and found the following results in academic progress.  The figures speak for themselves.

Predictably PANS and PANDAS also significantly affect children’s/young people’s ability to attend school.  Intriguingly families noted that even during remission, their children/young people continue to grapple with attendance challenges long term.  Despite the current focus on poor attendance levels following the Covid 19 lockdowns, it is noteworthy that few professionals are considering post-infectious disorders such as PANS as one differential to consider.

Clearly more education research is needed to underpin the factors driving this emerging data picture.  School-based trauma is also frequently reported by children/young people with PANS/PANDAS who have sat in a classroom whilst hallucinating or enduring multiple often under-estimated horrific symptoms. The current situation is creating exactly the opposite of what we are all trying to achieve, happy and healthy children/young people who are thriving in education and feel psychologically safe and supported in schools.

Children/young people with PANS/PANDAS

Hope for Children and Young People with PANS and PANDAS

There are however glimmers of change.  The first UK universities are in the process of including the conditions in their core teacher training curriculum. There are a growing number of education resources available and the charity PANS PANDAS UK (PPUK) is now listed on more than 100 Local offer sites. 

PPUK have now also delivered education training to more than 1000 professionals and families.  Common themes of reflective feedback include ‘all of those children that I think I have missed’, ‘I think this is the missing piece of a child/young person who we have been struggling to support’ or even, ‘we have a member of our own family who has really been struggling and I think it might be this…’ .

The need for further educational research, integrated approaches between services and discussions on how children/young people with PANS/PANDAS are supported to access education needs to be firmly on the agenda.  Needless to say, the role of educational psychologists is pivotal.  The scale of this issue will not become fully apparent until we have a better idea of the incidence figures. What is abundantly clear, however, is that those children/young people who are suffering now cannot wait. Their childhood and education matters too.

Further Signposting

Padlet of Educational Resources - Educational Resources for PANS and PANDAS (padlet.com)

Medical and education resources - PANS PANDAS UK website - https://www.panspandasuk.org

House of Commons debate Pack - 8^th September 2023 - https://researchbriefings.files.parliament.uk/documents/CDP-2023-0174/CDP-2023-0174.pdf

PANS and PANDAS trauma resources - Dr Naomi Fisher - https://www.panspandasuk.org/trauma

EBSA resource from Sarah Johnson (including PANDAS) - https://www.phoenixeducationconsultancy.com/_files/ugd/bbe3de_7aad6df8df5f4bb89b1ef696f6a75fa0.pdf

Twinkl - * New * TeachMeet Reflections - Supporting Children with PANS or PANDAS in Educational Settings - https://www.twinkl.co.uk/resource/teachmeet-supporting-children-with-pans-or-pandas-in-educational-settings-t-cpd-1701699353

For any further information please contact Tina Coope - [email protected].

References

[1] Established late in 2022, the PANS PANDAS Working Group (known going forward as the PANS PANDAS Steering Group or PPSG) was convened to address the variation in care available to children and young people presenting with symptoms of PANS and PANDAS. The PPSG has representation from the following organisations: 

British Paediatric Neurology Association, PANS PANDAS UK, the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, the Royal College of Nursing, the Royal College of Occupational Therapy, the British Paediatric Allergy, Infection and Immunology Group, The Royal College of General Practitioners and the British Association of Social Workers. 

*(There is no case in law for schools to not accept a private diagnosis purely on the basis that it from an independent clinician.)

[2] PANS PANDAS UK 2022 Safeguarding survey found that children declined in their academic performance and attendance levels. This was a survey based on parent//carer reporting. No distinction were made between children with a formal diagnosis or suspected PANS or PANDAS. Neither was the variable of treatment included.