with Tina Coope, Education Lead, PANS PANDAS UK
SNJ is 17 years old this month, and in that time we’ve seen many developments in children’s health, including new conditions, diagnostic changes (see the disappearance of Asperger’s syndrome in favour of autism, and the growth of pathological demand avoidance for example), the arrival of Long Covid, and a growing awareness of rare diseases. How health conditions impact children’s behaviour, development and learning is also rapidly evolving—especially how a child’s educational support needs increase as a result of what might at first seem to be just a health issue.
One condition we’re hearing more about is PANS/PANDAS. A lack of research data means it isn’t included on the NHS website, but work is being done to develop resources and support. Tina Coope, Education Lead for the charity, PANS PANDAS UK. She’s written 10 things you probably don’t know about the condition
All about PANS PANDAS and 10 things you aren’t likely to know….by Tina Coope, Pans Pandas UK
- PANS – Paediatric Acute-onset Neuropsychiatric Syndrome
- PANDAS – Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections
“PANS and PANDAS are conditions that affect the brain. People with PANS or PANDAS experience a variety of symptoms ranging from mental health symptoms to changes in behaviour and difficulties with movement.”
Awareness of the post-infectious conditions of PANS and PANDAS is slowly growing. This medical condition is being reported by thousands of families to affect their children and young people, often puzzling and dividing both families and professionals. Children and young people with PANS or PANDAS can develop SEND without any prior evidence of need, often really struggle to attend school, and the conditions can often be misdiagnosed as purely mental health conditions, neurodivergence or other conditions.
My name is Tina Coope and I’m the Education Lead for the charity PANS PANDAS UK. Special Needs Jungle has kindly offered me the opportunity to raise much-needed awareness of these potentially devastating, but treatable medical conditions. Here are 10 key points that I think will provide a helpful overview, starting with the basics about what these conditions entail.
1. What are PANS or PANDAS?
In simple terms PANS and PANDAS are post-infectious conditions that affect both physical and mental health. They can be triggered by common infections like strep throat, chickenpox, or flu and can only be diagnosed by a medical professional. Some children and young people have developed PANS following Covid-19. The underlying cause of PANS and PANDAS is suspected to be an abnormal immune and/or inflammatory response.
While PANDAS is a paediatric diagnosis, (onset typically between the ages of three and 12), PANS can also occur in adults, and symptoms do not necessarily resolve at 16. PANS and PANDAS are relapsing and remitting conditions (the symptoms go up and down) and an exacerbation of symptoms is known in layperson’s terms as a “flare”.
The symptoms can be wide-ranging and variable and can impact lots of different areas of a child or young person’s life. Signs can include the abrupt onset of OCD, tics, disordered eating, learning difficulties, sensory needs, and a deterioration in handwriting. Children and young people do not have to develop all of the symptoms.
2. An infection can cause the development of psychiatric and physical symptoms in children and young people.
Sadly, this is so little known: When a child or young person develops the sudden onset of a wide scope of symptoms such as Obsessive Compulsive Disorder (OCD), disordered eating, severe anxiety (including separation anxiety), sensory needs and learning challenges, it is not typically on any professional’s radar to ask about a recent history of infections.
3. Claims the conditions are “controversial” have been debunked and superseded.
Until relatively recently, the conditions used to be perceived as controversial, but events have quickly evolved. In a Parliamentary debate in Autumn 2023, Maria Caulfield, then Parliamentary Under Secretary of State for Health, stated both PANS and PANDAS were recognised as discrete diseases by the NHS. PANDAS is also included in the World Health Organisation (WHO) International Classification of Diseases (ICD 11) with two codes. A huge amount of work is taking place in the background across the areas of health, social care and education.
As part of these efforts, the PANS PANDAS Steering Group (PPSG) was established in late 2022 to support the diagnosis and treatment of children and young people with these conditions. It includes representatives from the charity PANS PANDAS UK and multiple Royal Colleges, such as the Royal College of Paediatrics and Child Health (RCPCH) and the British Paediatric Neurological Association (BPNA).
Under the umbrella of the PPSG, four working groups have been established: a research group, a clinical guideline development group, a service specification group, and an education, social care, and health group. This last group is currently developing guidance for local authorities.
With Royal College of Paediatrics and Child Health (RCPCH) endorsed clinical guidelines set to be issued within the next 12 months, it’s crucial professionals can access further resources, information and training on the conditions. A free short online CPD-accredited MIMS online health training module and teacher and educational psychology training are both currently available.
4. PANS and PANDAS can potentially be misdiagnosed.
Families report that individuals struggle currently to access a diagnosis of PANS or PANDAS. They might receive several different diagnoses or one that does not fully explain their symptoms. In the UK currently, many doctors are not trained to recognise PANS and PANDAS, so they might not be able to consider these diagnoses. The symptoms can also look like other conditions and/or neurodivergence such as OCD, autism, ADHD, dyslexia, dyscalculia and anxiety.
Some symptoms of PANS and PANDAS may overlap with neurodivergent traits, making these conditions harder to identify. Neurodivergent individuals need to receive a medical evaluation if PANS or PANDAS is suspected, and there is an acute, marked or distressing change. Some experts believe that autistic individuals might be at greater risk of developing these conditions, and more research is needed.
5. There are low levels of awareness about the conditions across health, education and social care.
Outdated but persistent views that the conditions are controversial, the lack of UK guidelines and the scarcity of professional knowledge and training resources available, are all contributing to insufficient awareness across the board of professionals. Many families currently report a lack of diagnosis, tailored treatment and support for their children and young people.
A Recent High Court Judicial Review covered by Special Needs Jungle found a local authority failed to provide the special educational support (section F) required in a child’s EHCP (Education Health and Care Plan) EOTAS package who had a diagnosis of PANS (alongside ADHD and autism) and reaffirms that LAs are under ‘absolute duty’ to secure special education provision.
A recent update on the status of PANS and PANDAS has been sent out across all of the councils in England, including the key message that the conditions are recognised by the NHS.
6. The limitations of assessments
One of the unusual characteristics of PANS or PANDAS includes the variability and pattern of the symptoms. Unlike many other conditions where symptoms may either remain stable or have a more predictable pattern of flare-ups, the signs of PANS and PANDAS can cover a large scop. These can range, for example, from eating restrictions to changes in working memory to a deterioration in fine or gross motor skills. Such a potentially wide range of needs can be challenging to identify.
With each subsequent flare, children and young people can either experience similar signs as with their previous flare, or a range of new symptoms. Flares can also change a lot in how severe they are, how long they last and how well a child or young person recovers. If professionals undertaking assessments are unaware of this, needs can easily be either under- or over-estimated and temporary needs can be incorrectly assumed as chronic.
7. How common is PANS / PANDAS? Incidence figures (or lack thereof)
There are no UK-based figures for how many children and young people have PANS or PANDAS. A lack of incidence figures does not mean children and young people are not potentially developing these conditions in significant numbers. The charity PANS PANDAS UK is currently supporting around 7,000 families reporting the onset of neuropsychiatric symptoms in their children and young people. The potential scale of the issue is such that the PANS PANDAS Steering Group recently submitted an application for a UK-wide surveillance study to BPSU (British Paediatric Surveillance Unit) and CAPSS (Child and Adolescent Psychiatry Surveillance System).
8. Psychological impacts of PANS and PANDAS are often not recognised.
Children and young people with PANS and PANDAS often experience significant changes in their functioning and are typically aware of these changes. Due to current limited awareness, they often do not receive an explanation for what is happening to them or why. This lack of understanding is often accompanied by a lack of treatment to alleviate their symptoms.
Families may quickly find themselves supporting a child or young person who is unable to attend school and who requires extensive support both at home and school. As a result, parents and caregivers often need to rapidly adapt their own lives and unexpectedly navigate both the SEND and health system.
9. Families supporting children and young people with PANS and PANDAS can be vulnerable to false accusations of Fabricated Induced Illness. (FII)
There are several context-specific factors leading to disproportionate numbers of families supporting children and young people with PANS or PANDAS being accused of fabricated or induced illness.
These include, but are not limited to:
- a lack of professional awareness of the conditions,
- some of the symptoms themselves can mimic warning signs in safeguarding,
- a child or young person may mask or partially mask their symptoms in school or during a medical consultation so families and professionals may have very different perspectives on the scope and severity of needs.
- Parents/caregivers often also need to seek multiple medical opinions to gain a diagnosis and treatment, which can seem to be a further “red flag”.
While adhering to safeguarding legislation/guidance is of course crucial and applicable to all groups, the issue of FII has been so significant in the PANS and PANDAS community that the charity PANS PANDAS UK, in conjunction with the independent social worker Cathie Long, has produced a guide for social work, healthcare and education professionals.
10. There is a lack of UK-led research into the educational impacts of PANS and PANDAS
Many families supporting children and young people with PANS or PANDAS report feeling stuck and isolated. There is a lack of UK-based educational research, and only a handful of universities and Initial Teacher Training (ITT) programs include these conditions in their curricula. Many SEND organisations are unaware of these conditions, and specialist knowledge, training, and educational resources are limited.
‘I wish teachers knew about PANS and PANDAS, none of them knew about it’
(Millie age 15 with PANDAS)
- Further information and a wealth of education and health resources
- CPD accredited PANS and PANDAS teacher training–
- CPD accredited online MIMS Learning module for Health Professionals
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Also read:
- Learning to cope with your child’s Pathological Demand Avoidance
- Survey reveals “systemic bias” of professionals and parental blame linked to family profiling of autistic children with Pathological Demand Avoidance
- Missing the mark: Anxiety and avoidance, illustrated.
- 5 Top Tips tips to support mental health in neurodivergent young people this summer*
- Fabricated or Induced Illness (FII) and Perplexing Presentations – New guidance for social work practitioners
- Research finds unfounded FII accusations cause “devastating and often life-long impact on children and families” and over 80% of allegations dropped
- “Lack of stigma” blamed for rising SEND? We will NEVER be ashamed of our disabled children
- The worrying trend of social care tactics to target SEND ‘problem parents’
- Big ideas belong to everyone: Education, rights and lifelong learning for people with learning disabilities
- As The Guardian prints our joint campaign’s open letter, it’s clear people with lived experience don’t want to lose SEND rights
- How do you ensure pathways to education, health, and social care support, meet both diagnosis and needs?
- Researching flexi-schooling: How beneficial is it for children with SEND?
- Oops, we did it again… The Government must now listen to more than 100,000 people who do not want to lose SEND rights
- Experts at Hand: When is an occupational therapist also a SEND expert?
- Could using AI to filter Government consultation responses lead to “algorithmic silencing” of neurodivergent voices?
- A council’s “improvement journey”? How determined SEND parents catalogued the trail of their LA’s unlawful behaviour
- Research: Social networks in special schools. Friendships, bullying and play
- CrowdJustice SEND accountability: When the law says “must”, local authorities cannot treat it as “maybe”
- DfE must give its SEND reform Child Rights Impact Assessment a do-over; this time, without marking its own homework
- Research: SEND case officers are LAs’ “human shield” gatekeepers. But parents shouldn’t have to be their own key workers
The Unacceptable Truth: 20 SEND legal rights at risk from the Government’s SEND reformsSeptember 9, 2026
Dear Secretary of State for Education, Lucy Powell: an Open Letter from Special Needs Jungle and SEND legal charity SOS!SENAugust 4, 2026
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- Big ideas belong to everyone: Education, rights and lifelong learning for people with learning disabilities - October 12, 2026
- As The Guardian prints our joint campaign’s open letter, it’s clear people with lived experience don’t want to lose SEND rights - October 9, 2026
- How do you ensure pathways to education, health, and social care support, meet both diagnosis and needs? - October 7, 2026
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