Neuropsychiatric Conditions: PANS and PANDAS

Wendy Chamberlain Excerpts

Thursday 25th June 2026 Commons Chamber

[Wendy Chamberlain (North East Fife) (LD)]

I beg to move,

That this House has considered the diagnosis and treatment of Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS).

It is a pleasure to open this debate, and I am grateful to colleagues who have attended, despite the immense heat. I welcome the members of the PANS PANDAS UK youth board, and the families impacted by these conditions who are here to watch the debate from the Gallery, and I am grateful to the Doorkeepers for their accommodation in that regard. The heat has meant that many families who were planning to attend, as well as the PANS PANDA UK team, have not been able to travel down, and I know how understandably disappointed they are, but I am pleased to still have the opportunity to speak about this condition on behalf of the thousands of children, young people and families who want to know that their voices are being heard.

PANS, which stands for paediatric acute-onset neuropsychiatric syndrome, and PANDAS, which stands for paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections—you can understand why we say PANS and PANDAS—are post-infectious conditions that affect the brain. They are recognised by NHS England as clinical syndromes.

PANS is a condition in children and young people that can result from an initial mild infection, such as chickenpox or even covid. PANDAS is a specific sort of PANS that stems from a strep infection. While the initial infections might be mild, in some cases they trigger a misdirected immune response and/or a brain inflammation that causes the rapid onset of severe symptoms. I want to emphasise that rapidness; children can go from being healthy and thriving to experiencing obsessive compulsive behaviours, tics, extreme anxiety, eating restrictions and profound neurological symptoms almost overnight.

PANS PANDAS UK currently supports around 8,000 families, but we know that that number is likely to be just the tip of the iceberg. In reality, there are likely to be children and families affected in every one of our constituencies. Looking at Members in the Chamber today, I am sure that many have been contacted by a constituent who is struggling to get support for their children. Constituents get in touch with their Member of Parliament, and that is often why we become engaged in these issues. That was the case for me. I first became aware of PANS and PANDAS when constituents reached out to me for support for their daughter, who was struggling to get a diagnosis and the medication that she needed.

I want to emphasise the key point that early diagnosis and treatment are crucial. When the conditions are identified early, outcomes are significantly better, and in some cases a simple course of antibiotics can alleviate symptoms. However, people are very much experiencing the opposite to that. They are experiencing delay, confusion and inconsistency. Research from PANS PANDAS UK suggests that over 53% of affected families wait more than a year for diagnosis, and 37% wait for more than two years.

[Chris Vince (Harlow) (Lab/Co-op)]

I thank the hon. Lady for bringing this important issue to the House. The Government are introducing guidelines on this in the autumn. Does she welcome the publication of those guidelines, and does she hope that they will get rid of the inconsistencies and postcode lottery that she is describing?

[Wendy Chamberlain]

As always, the hon. Gentleman is ahead of the game; I was going to mention this. I am very much looking forward to the guidance, but we need to ensure that it is understood and shared.

[Sir Julian Lewis (New Forest East) (Con)]

The hon. Lady mentioned the all-important fact that early diagnosis, coupled with the prescribing of a quite common antibiotic —I believe amoxicillin is one of them—can make a crucial difference. In May last year, I asked in a written question whether the Secretary of State for Health and Social Care would take steps to facilitate the circulation of material to general practitioners, advising them on how to recognise PANS and PANDAS, and treat them with antibiotics and anti-inflammatory medications. The response that I got from the Minister for Care was that this is all a matter for the National Institute for Health and Care Excellence, which is an independent body. The Minister said that NICE has

“no plans to issue guidance on paediatric acute-onset neuropsychiatric syndrome (PANS) and paediatric autoimmune neuropsychiatric disorder associated with streptococcus (PANDAS)”.

He also said,

“should the evidence base develop further, we would look to the NICE to update clinical policy.”

It seems that the early use of antibiotics is not yet accepted by the medical establishment. Does the hon. Lady know whether there is hard evidence to show that the medical establishment needs to get its act together on the matter?

[Wendy Chamberlain]

The right hon. Member may recall the debate we had in a previous Parliament on this subject. The Minister at the time gave the commitment that she would ensure that GPs and other medical practitioners were aware of the guidance that PANS PANDAS UK was producing. I hope we will hear today that the Minister is looking at that. There is clearly a challenge, and although the condition is recognised by the World Health Organisation and by NHS England, there is more to do to minimise the postcode lottery and ensure that we can get support for young people.

[Sir Julian Lewis]

I am sorry if I did not express myself clearly enough. It is not so much a question of the non-recognition of PANS and PANDAS, but whether it has been recognised that early treatment with antibiotics can make all the difference.

[Wendy Chamberlain]

I am sure the Minister can address that in her closing remarks. We absolutely need to ensure that. As the right hon. Member has said, amoxicillin might be one of the antibiotics that could be used. It is straightforward to use, and in the vast majority of cases it works, but if it does not, potentially PANS and PANDAS could be ruled out.

Too many families face rejected referrals, long waits and, in some cases, misdiagnosis. Only a small proportion of cases are diagnosed within the NHS, and many people are forced to travel long distances or turn to private care. That is not possible for all families; getting the private care needed for their child can bring families to their knees. To give an example from my constituency, in the same GP practice, one GP will provide support and the other does not recognise the condition. That makes things very difficult.

A number of families whom I have engaged with have had to seek private support, and that makes me ask—I hope the Minister is sympathetic to this—what about the children from families who are reliant on NHS support, and do not get the diagnosis? They may be absent from school for long periods. Their family may be written off as problematic, and the children as having problematic behaviours, when ultimately the condition could be at the root of the problem. From the point of view of our ongoing economic wellbeing, we need to support children’s being in education as much as we can. That is why the research is so important—because we need to ensure that families can get the support that they need, no matter their financial situation.

A National Institute for Health and Care Research-funded evidence synthesis is under way; that has changed since the last time this topic was debated. It is already highlighting significant gaps in our understanding, particularly around effective treatments. Also, with other members of the all-party parliamentary group on PANS PANDAS, which I chair, we met doctors some time ago who are researching how the brain functions. Their work suggests that there may be biomarkers that indicate a higher likelihood of developing the conditions, and they have produced fascinating research that I encourage colleagues to read. We need to understand how severe the impact of PANS and PANDAS can be on a child. It is clear that further research is urgently needed to aid both diagnosis and treatment, which often needs to be ongoing.

Awareness and training are fundamental. Without them, as has been mentioned, healthcare professionals miss the signs, and teachers misinterpret symptoms. Children who experience sudden neurological decline are too often viewed through the lens of behaviour, anxiety or neurodivergence, rather than as having a medical emergency. From the children that I have engaged with through the youth board, I have learned that it is a terrifying experience for a young person to deal with those symptoms.

I am pleased to say, however, that we are at an important turning point. The UK clinical guidance, which the hon. Member for Harlow (Chris Vince) mentioned, is expected later this year, and there has been significant work since the last debate, which I held in September 2023, to bring PANS and PANDAS further into the policy landscape. I pay tribute to PANS PANDAS UK for that, because the charity has been the key driver in making that happen. Guidance alone will not be enough, however; it must be consistently embedded across the NHS, so that we end the postcode lottery in diagnosis and care. I suspect that we will hear about some of that from other Members. The consequences are profound; the human cost of delay and misdiagnosis is devastating. Children lose the ability to attend school, lose previously secure skills, and experience severe psychiatric and physical symptoms.

Just a few months ago, I hosted a roundtable in Parliament, at which the PANS PANDAS UK youth board members were able to speak directly to MPs about their experiences. As MPs, we engage with parents in the first instance, but it was very powerful to hear directly from children who are experiencing the condition. They might not be in the Gallery, but many of them will be voting; as we were informed, they are the voters of the future and are paying attention to what we do right now. It was an eye-opening session, particularly for those who had not heard of the condition. The children spoke about wanting to be believed and understood, and wanting to get help more quickly. Their message was clear: earlier recognition could change everything. They explained how PANS and PANDAS have impacted their lives; they described watching their peers progress, while they feel stuck behind, and being too unwell to attend school and so having to repeat years. That adds to a feeling of isolation. We can all remember when we were younger and times when childhood was quite cruel.

Families have described watching their child disappear in front of them. Parents leave work to provide care: 36% report having to stop working entirely, and many families face financial losses as a result, as well as from seeking private care. At the youth board roundtable, we also heard from the siblings of children diagnosed with PANS and PANDAS—I believe that my hon. Friend the Member for Henley and Thame (Freddie van Mierlo) has a constituent in Parliament this afternoon who is part of the sibling community. It was a stark reminder of how these conditions impact entire family units; there is the financial impact of having to seek healthcare, and of a parent leaving their job, and the impact of home becoming an unstable and unpredictable environment.

The conditions also have a devastating effect on learning. Nearly half of affected children miss more than six months of school, and over a third miss more than a year. They often experience the sudden loss of core learning skills. Under the current system in England, which is designed to support gradual, stable learning needs, rather than acute onset, as well as under aspects of the proposed special educational needs and disabilities reforms, there is a real risk that those children are misunderstood. Without clear guidance, education professionals default to familiar frameworks. A sudden loss of skills can be misinterpreted as a behavioural issue or neurodivergence, leading to inappropriate support and a delay in the medical intervention required. That is why the alignment between health, education and local authorities is so critical.

I obviously speak as a Scottish MP. We must ensure alignment across the UK, so that there is no postcode lottery in the level of support available. My Scottish Liberal Democrat colleague Adam Harley, the new MSP for Strathkelvin and Bearsden, recently raised a constituent’s case in the Scottish Parliament; I was particularly disappointed in the response of First Minister John Swinney, who referred to PANS/PANDAS as a “rare disease”. It was clear that he knew nothing about it. Despite my own correspondence with his Government, we have seen limited progress in Scotland. I must emphasise that it is not a potentially rare disease; it is an undiagnosed one. I genuinely believe many children with PANS/ PANDAS have not been diagnosed and are therefore not getting the support they need. That underlines the need for close engagement with devolved Governments to ensure a truly joined-up approach to improving support.

Today’s debate will largely focus on children and young people with PANS/PANDAS, but it is equally important to recognise the challenges faced by adults. One adult with PANS/PANDAS shared with me that she has experienced mostly neuropsychiatric symptoms, rather than physical ones. Research shows that PANS and PANDAS can be associated with systemic inflammation and autoimmune responses affecting the whole body, including conditions such as arthritis and other inflammatory diseases. In that person’s case, tests revealed ongoing systemic inflammation that has damaged tissues and organs over time, as the immune system mistakenly attacks healthy cells, rather than protecting them. Too often, the symptoms that PANS/PANDAS can manifest are put in the “too difficult to deal with” basket.

These are the practical steps that we are asking the Government to consider. First, when the UK clinical guidance is published later this year, there must be a clear commitment that steps will be taken to ensure that it is embedded consistently across the NHS, not left to chance, and that appropriate stakeholders are engaged to support its dissemination.

Secondly, we need training for healthcare professionals and those working in education, so that symptoms are recognised early and acted on appropriately. Thirdly, we must have a renewed commitment to research funding, building on the work of the National Institute for Health and Care Research, to address the significant gaps in evidence and improve treatment pathways. I ran the London marathon—my first ever—at the end of April, and one of the charities I was fundraising for was PANS PANDAS UK. It should not take fundraising to deliver the funds that are needed for the research that will provide the right support for these children.

Finally, there must be clear signposting and alignment with the forthcoming local authority guidance to ensure that schools and services are equipped to meet their legal duties. As one clinical psychologist working with a young person with PANS has stated,

“Without training…pupils risk unnecessary and avoidable long-term loss of skills.”

I will be pushing on exactly this matter in Scotland.

This debate is an opportunity to put these issues firmly on the record, to raise awareness across Parliament and to ensure that families living with PANS and PANDAS feel heard. I am grateful to colleagues here today and look forward to hearing their contributions and the Minister’s response.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

I am in awe of the hon. Member for running the marathon and, of course, for raising funds for PANS and PANDAS.

--- Later in debate ---

[Wendy Chamberlain]

Thank you, Madam Deputy Speaker, for your very kind remarks about Albie and others in today’s debate. A number of themes have been discussed by the hon. and right hon. Members, and I have always found that the number of MPs who join the PANS PANDAS all-party parliamentary groups increases over the term of the Parliament, because they get involved through casework. Hearing from the hon. Member for Carlisle (Ms Minns), and from my hon. Friends the Members for Henley and Thame (Freddie van Mierlo) and for Mid Dunbartonshire (Susan Murray), about their constituents’ experiences brought that to light.

I commend the shadow Minister, the hon. Member for Solihull West and Shirley (Dr Shastri-Hurst), for his debut at the Dispatch Box. Both he and the Minister talked about the intersection that PANS/PANDAS, their diagnosis and symptoms represent. What families are finding challenging is that that intersection has not been properly recognised, and children often end up going down a mental health pathway, where they are left in limbo for far too long. We often talk about the pressure on mental health services and young people, but if we could diagnose PANS/PANDAS sooner, we would potentially not set off children down that pathway.

I want to mention young people and their families. The challenge that is presented has been well illustrated, and I hope that those in the Gallery, and those watching online, feel seen and heard following both today’s debate and the recent youth board. In the last Parliament, I passed a private Member’s Bill that gives people the right to carer’s leave. When I was doing that work, we spoke to carers who talked about feeling guilty that the administration involved in being carers prevented them from actually being able to care. In relation to PANS/PANDAS, that comes through very strongly.

We clearly need to do a whole lot more to build awareness. My husband and I were watching the film “I Swear” a few weeks ago—if any Members have not seen it, I highly recommend it. My husband turned to me at the point when John Davidson, who is depicted in the film, attempted to kill himself as a young person who was starting to deal with his Tourette’s. My husband said, “Do you think PANS might have caused his condition, given the way that it came on and was described in the film?” That might just be the case. How many conditions or symptoms that we see could be down to PANS/PANDAS? As the right hon. Member for New Forest East (Sir Julian Lewis) said consistently during the debate, early treatment and testing via the use of antibiotics might just be the way to prevent some of the more serious symptoms.

I have been encouraged by what I have heard from the Minister today, and I look forward to engaging with her and supporting her engagement with the Scottish Government. I thank everybody for being here on such a warm day and for taking the time to contribute.

Question put and agreed to.

Resolved,

That this House has considered the diagnosis and treatment of Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS).