PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are related medical conditions that present mostly, but not exclusively, in children and young people.
For many families, the journey into PANS and PANDAS begins suddenly – and without warning.
A child who was once thriving can become acutely unwell almost overnight. Parents describe a dramatic shift: anxiety, tics, obsessive behaviours, eating difficulties, and emotional distress that feels impossible to explain.
As Sam Febrey, a Research Fellow at Isca Evidence, explains:
“These conditions can develop after an infection or illness, whereby a misdirected immune response… results in a cascade of severe, and often sudden, neurological, psychiatric and behavioural symptoms.”
Yet despite the severity, awareness remains low – and for many families, that’s where the real struggle begins.
The project: What is “PANS PANDAS Unveiled”?
PANS PANDAS Unveiled is a research project led by the University of Exeter that aims to bring together what we currently know – and don’t know – about PANS and PANDAS.
At the heart of the project is something called an Evidence and Gap Map (EGM). In simple terms, this is a visual tool that gathers all the existing research in one place and organises it by topics like symptoms, treatments, and access to care. Just as importantly, it highlights where evidence is missing.
This approach was chosen because the research landscape for PANS and PANDAS is still developing. Much of the available evidence is based on case studies or observational research, with very few large, high-quality clinical trials. There is also currently no clear consensus on how these conditions should be diagnosed, treated or managed. For families and clinicians, this can mean making difficult decisions without a strong or consistent evidence base to rely on.
By mapping out both the evidence and the gaps, the project provides a clearer picture of what is known so far, while also helping to guide future research priorities.
Living with PANS/PANDAS
A life-changing condition – for the whole family
For the parents and carers we spoke to, one theme was unmistakable: PANS and PANDAS don’t just affect a child – they affect entire families.
One parent, Carrie, described it as:
“a really cruel illness, because it doesn’t just affect the child, it affects the family and their wider family.”
Another, Jon, reflected on just how disruptive it can be:
“When you have a child with PANS PANDAS, it is completely life-changing… you go from having a core family where everything’s manageable to literally nothing is manageable.”
For Lorna, whose son became unwell suddenly, the experience was disorienting and overwhelming:
“We’d never heard of PANS PANDAS 18 months ago, and we were thrust into the world… when my son suddenly became unwell.”
Alice, a young person, explained that:
“No one can fully understand what it’s like without living through it.”
Despite very different journeys, families repeatedly described the same emotional landscape: fear, confusion, exhaustion – and a constant search for answers.
The diagnostic journey: confusion, persistence, and barriers
A major challenge highlighted by both families and researchers is how difficult it is to get recognition, diagnosis and support.
Parents and carers spoke about not being believed, or being redirected down other pathways:
“They kind of dismiss it… they’re either going to say… it’s mental health… or teenager hormones.” (Carrie)
“I had ‘it won’t be that. That’s very rare.’… and it was that.” (Lorna)
The lack of a clear diagnostic test makes things even harder. As researchers explain, there is currently:
- no single test
- no global consensus on diagnosis or treatment
- limited high-quality evidence
NHS support was described by one parent as a ‘postcode lottery’. Many families face difficult choices, with some turning to private care:
“Families often have to pay for private care, and if you can’t afford it, it’s really hard to know where to turn.” (Lorna)
Why research – and this project – matters now
The PANS PANDAS Unveiled project was born out of this uncertainty.
Originally planned as a review of treatments, the team quickly realised the evidence simply wasn’t strong enough. As Graduate Research Assistant Allison Stitt explains:
“Reliable, high-quality research was severely lacking… most of what we know comes from case studies.”
Instead, the team created an Evidence and Gap Map (EGM) – a tool that brings together all available research and highlights where evidence is missing.
As Systematic Reviewer Dr Michael Nunns explains:
“Previously, people seeking information… would inevitably only come across a portion of the available evidence.”
Now, families, clinicians and researchers can:
- access research in one place
- identify gaps
- make more informed decisions
For parents, this kind of resource is powerful. As Lorna described:
“It’s very validating… you look for that symptom and it’s there… and you’re like, oh… this isn’t imagined.”
The power of lived experience
A defining feature of the project was its deep involvement of families and young people.
Researchers were clear: this wasn’t just helpful – it was essential.
“They were our experts.” (Sam Febrey)
“Meeting parents… illuminated a plethora of issues that we would never have known about through reading alone… It has been the most influential engagement I have been involved with over the last decade, and it is a prime example of why this sort of engagement is vital.”” (Dr Michael Nunns)
This input shaped everything – from the structure of the evidence map to the inclusion of overlooked topics like access to services.
Young people also played a key role in making the map accessible, for example by suggesting changes to colour choices so it could be used by people with colour blindness.
It also changed how researchers interpreted the evidence. As Graduate Research Assistant Pooja Sharma explains:
“Hearing directly from patients, families and clinicians helped us see where the most pressing challenges lie, particularly around diagnosis and access to care…some of the issues people face most acutely are not well reflected in the evidence”.
For parents, being involved brought a sense of purpose during an incredibly difficult time.
Lorna shared:
“It gives you a sense of… doing something that’s going to make a difference.”
Jon shared:
“I wanted to help bring together proper scientific evidence in a way that could support families.”
And for young people, being heard mattered deeply.
“It was good to feel heard, although it was emotional at times.” (Ellen)
“I know how scary it was not knowing what was going on and there being nothing really about it. I just wanted to make sure other people get the help they need and know they’re not alone.” (Alice)
A shared goal: better awareness, better care
Across all perspectives, there is a shared hope: that this work will lead to earlier recognition, better support, and stronger evidence.
Researchers hope the map will raise awareness, inform UK guidelines and drive funding and future research.
For families, its value is both personal and practical.
“I’d spent 18 months trying to piece together information, and you do come across conflicting or unreliable sources. So the idea of everything being pulled together in one place was really appealing.” (Lorna)
“The map shows where research is missing – and that could help drive new studies in the areas families really need.” (Carrie)
Young people also spoke about what they hope the research will achieve:
“I hope it helps families feel less alone and know there are people trying to help – and that things can get better.” (Alice)
For families who have often felt unheard, this research is more than a map of evidence – it’s a step towards change.
As one parent put it:
“There is light at the end of the tunnel… even though you feel like you’re never going to come out of it.” (Carrie)
Looking ahead
The Evidence and Gap Map is just the beginning. The next phase of the project involves targeted systematic reviews – one focusing on lived experiences of patients, families and clinicians, and another on treatment effectiveness. Together, this work will help inform the development of UK guidelines, with the aim of improving recognition, care pathways, and outcomes for families affected by PANS and PANDAS.
Together, these steps aim to move the field closer to something families have been waiting for: clearer answers, better care pathways, and real understanding.
Until then, one message comes through strongly from everyone involved:
Families are not alone – and their voices are driving change.
If you would like to learn more about PANS PANDAS or access support, please visit PANS PANDAS UK.
How do I access PANS PANDAS unveiled?
You can access the full PANS and PANDAS EGM here. A user guide has been created which will appear as a pop up when you first access the map, or is accessible via the ‘about’ button at the top of the screen. Additionally, this short video walkthrough explains how to navigate the tool.