Neuropsychiatric Conditions: PANS and PANDAS

Julian Lewis Excerpts

Thursday 25th June 2026 Commons Chamber

[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.

--- Later in debate ---

[Freddie van Mierlo (Henley and Thame) (LD)]

I thank my hon. Friend the Member for North East Fife (Wendy Chamberlain) for securing the debate and for her advocacy in raising the profile of PANS/PANDAS. I also thank the hon. Member for Carlisle (Ms Minns) for the comments she made. I hope that she gets a response from her ICB very soon—I am waiting for one from mine.

Last month, I attended a meeting organised by the all-party parliamentary group on PANS PANDAS, which my hon. Friend the Member for North East Fife leads, to hear from young people directly on their experiences of the condition and the impact on their lives. What stuck with me from that meeting was a powerful comment by one of the young people there, who said, “We don’t want your sympathy. We want your action.” Let that comment last with the Minister, too—action, not sympathy.

One young advocate at the meeting was my constituent, 10-year-old Albie and his mother, who are watching the debate today from the Gallery and braved the heat to come here from Oxfordshire. Albie’s brother is diagnosed with PANS/PANDAS, and Albie has become a tireless and devoted campaigner on his brother’s behalf. Albie has launched a letter-writing campaign. He is already 19 months deep into his campaign and has become pen pals with the most powerful and influential people in the country, including His Majesty the King, the high sheriff of Oxfordshire, the Prime Minister, various Ministers, NHS leaders and leading clinicians and, of course, the Speaker’s Office.

Albie proudly showed me in a constituency surgery and again this afternoon his beautiful handwritten letters and the responses, all stored safely in a binder. I am proud to have on my wall in my office here in Westminster a thank you card from Albie, with his trademark drawing of a panda. His next campaign is to write to all 26 main children’s hospitals, asking them to send a doctor or member of staff to the PANS PANDAS UK clinical professionals conference in October in Royal Leamington Spa. His hope is that if more clinicians learn about recognising and treating PANS/PANDAS, children like his brother will receive help more quickly. Albie is an inspiration to all of us and is driven by love for his brother. I wish him continued success, and he has assured me today that he is already dusting off his pencils to write to the right hon. Member for Makerfield (Andy Burnham).

However, at just 10 years old, Albie should not be having to do this. He feels compelled to do it because the NHS and successive Governments have failed families like his. His family have had a difficult time getting the diagnosis and treatment needed, and that is not unusual. When surveyed, only 2% of patients and families said that GPs recognised that their child could have PANS/PANDAS. The path to diagnosis can take months or years, with persistence from parents required to advocate for children. Many are forced to spend thousands of pounds on private assessments and treatment because NHS support is inadequate. When asked by a show of hands at the all-party group meeting, every single young person said their family had paid for private treatment. It is unacceptable that an entire condition requires, by default, private care. It bakes in inequality and places extreme stress and strain on parents. I know as a parent that I would do anything for my child, and Albie’s mum is no different, but the financial pressure placed on ordinary, hard-working families like hers is devastating.

The lack of specialist clinicians and knowledge within the NHS appears to be a major cause of this, with too many clinicians misidentifying the condition and refusing treatments being deployed in the private sector. We urgently need better guidance for the NHS to close this gap. Families are fighting to be heard by professionals who all too often dismiss or do not recognise PANS and PANDAS. I therefore welcome the announcement that NICE will review independently produced guidelines from the PANS clinical guideline development group and PANS PANDAS UK through the guideline collaboration programme. However, I am concerned by my most recent correspondence on this topic with the Minister for Women’s Health and Mental Health, who sits in the other place, in which she said:

“Should the evidence continue to increase, organisations such as the NICE will consider updating clinical policy”.

My reading of this is that there is no clear commitment that clinical guidance will be adopted by NICE, and I would be grateful if the Minister here today could comment specifically on that point.

[Sir Julian Lewis]

At the risk of labouring the same single point I want to make again and again, there really does seem to be no downside to telling all GPs that if there is any question at all that a child might have PANS or PANDAS, the GP should prescribe them one of the basic antibiotics, because they could benefit from it tremendously, and there is no risk of harm.

[Freddie van Mierlo]

I wholeheartedly agree with the right hon. Gentleman. There are very few downsides of prescribing an antibiotic, especially in this instance, given the seriousness of the condition. As he says, there is really no good reason to withhold this medication.

A second challenge facing families is the impact on a child’s ability to participate in education, as they miss months of school because they are too unwell to attend. That not only affects their learning but limits opportunities to socialise, make friends and have a community beyond home. Every child has a right to an education. PANS/PANDAS does not limit ambition or ability, but our education system is placing limits on children with the condition. Section 19 of the Education Act 1996 is in place to stop that happening, and it requires local authorities to arrange suitable education for children who cannot attend school due to illness. However, the provision is not always effective for children living with PANS/PANDAS, and parents still need to be advocates for their own rights, rather than being proactively told them and guided through the process.

There is a wider point. Families are often left fighting for support from multiple systems at the same time, including healthcare, education and local authorities, while trying to take care of a very unwell child. It is the last thing they need. There are steps that the Government can take to limit the challenges. First, PANS/PANDAS must be researched in greater depth. It is currently unknown how many people are affected by PANS/PANDAS in the UK, and there is no official guidance on the diagnosis and treatment of those conditions in the NHS. Secondly, we need training of health professionals to recognise and treat the condition. PANS and PANDAS are conditions with a high risk of long-term disability, exclusion from society and failed education. Families express that if only their children’s condition had been recognised sooner by health professionals, it could have had a significant impact on their child’s wellbeing and outcomes.

Thirdly, we must improve the support offered to children in education. The publication of local authority guidance is anticipated this summer, and it is important that it ensures that schools and services meet their statutory duties for children with PANS/ PANDAS. Thousands of families are fighting for support from multiple systems while taking care of unwell children. It is time for the Government to do their part, and eliminate the barriers to diagnosis and treatment for those living with PANS/PANDAS.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)]

I thank the hon. Member for North East Fife (Wendy Chamberlain) and the Backbench Business Committee for bringing forward today’s debate. I think we can all agree that, although the number of attendees has been small, it has been mighty in terms of the quality of contributions we have heard from hon. Members. I am also grateful for the opportunity to speak today on the subject of PANS/PANDAS.

As hon. Members have highlighted, these conditions cause significant distress to many children and young people and their families. It is therefore vital that we approach this issue with both scientific care and genuine compassion, recognising and responding to the lived experiences of those affected. We have heard from hon. Members today about some of those experiences, and I thank them all for their contributions.

As we have heard, PANS and PANDAS are closely related, but distinct, clinical syndromes in which an infection can trigger acute and often dramatic changes in both physical and mental health—often as quickly as overnight, as we heard from the hon. Member for North East Fife. They are areas of evolving clinical understanding, with diagnosis based on observed signs and symptoms rather than definitive tests. That means that it is typically a diagnosis of exclusion, requiring clinicians to rule out other causes. While this can make diagnosis complex, it underlines the importance of a holistic, joined-up, child-centred approach.

Treatment is similarly tailored and delivered through multidisciplinary teams, with psychological therapies such as cognitive behavioural therapy commonly used to manage symptoms, along with pharmacological interventions where appropriate. Alongside clinical interventions, supportive care is essential. This includes helping families to understand the condition, supporting school attendance where possible, and ensuring access to appropriate mental health services. Effective care requires co-ordination across services to provide consistent and holistic support.

We recognise the challenges that families face—I welcome the families who are in the Gallery today—particularly as these conditions can sit at the intersection of physical and mental health services. Good clinical practice emphasises the importance of a holistic and multidisciplinary approach, including close collaboration with parents, schools and other agencies. However, the absence of definitive biomarkers and fully understood mechanisms has contributed to a variation in how care is delivered. In response, NHS England began working in 2020 with the charity PANS PANDAS UK, which I commend on its work in this area to improve awareness, understanding and care. This led to the establishment of the PANS/PANDAS steering group, which brings together representatives from key royal colleges, specialist clinical bodies and the charity sector.

The steering group has since progressed several important initiatives. First, work is under way to develop the first UK clinical guidelines for PANS and PANDAS, led by a multidisciplinary group and supported by the Royal College of Paediatrics and Child Health. My hon. Friend the Member for Carlisle (Ms Minns) asked me about timelines for that guidance. I am happy to tell her today that those guidelines are expected to be published in autumn this year, and they will support more consistent care across the system. Until then, clinicians are advised to draw on existing international guidance, including the Nordic clinical guidelines, which were published in 2021.

Secondly, a dedicated research group is advancing efforts to strengthen the evidence base, including through a nationwide surveillance study. Thirdly, a cross-sector group is developing practical guidance for local authorities to improve support for children and young people living with PANS and PANDAS. That guidance is due to be published later this year, and it will ensure more consistent access to appropriate educational and social care services. As we have heard today, clear and consistent frameworks are essential to improving co-ordination across services and strengthening recognition of PANS and PANDAS.

NHS England’s forthcoming children and young people’s modern service framework will address health system challenges that affect all children and young people, improve access to specialist advice, promote more integrated working across physical and mental health services, and strengthen the strategic commissioning role of integrated care boards. More widely, NHS England is also supporting local systems to implement neighbourhood multidisciplinary teams, bringing together professionals across health and social care and wider services to deliver joined-up, community-based care, ensuring that all children and young people can access co-ordinated support and paediatric expertise closer to home.

The Lib Dem spokesperson, the hon. Member for Mid Dunbartonshire (Susan Murray), asked me about discussions with the Scottish Government and devolved Administrations. I understand that there have been no direct discussions so far, so I commit that, following this debate, my officials will engage and raise this issue with devolved Government counterparts at the next opportunity.

Alongside these developments, there remains a clear need for high-quality research, and this includes improving understanding of the underlying causes of PANS and PANDAS, refining diagnostic criteria and building stronger evidence on the effectiveness of different treatments. The Department supports research through the National Institute for Health and Care Research, and we welcome applications across all areas of health, including for these conditions. Recent collaborations include the “PANS PANDAS Unveiled” project, which completed an evidence and gap map on the epidemiology, prevalence, treatment and experiences of PANS/PANDAS. In the meantime, integrated care systems are responsible for planning services for their populations and should continue to draw on emerging evidence and guidance to improve care and outcomes.

[Sir Julian Lewis]

I detected that the Minister was moving towards her conclusion, so I thought I would intervene before she did. She has a fine record, before she became a Minister, of campaigning on mesh-damaged women. That was an occasion where something simple was done that led to very complicated problems. Here, we have a complicated condition, but it is thought that something simple could be done—namely, guidance should be given to all GPs that if this condition is even suspected, a simple course of antibiotics should be given. I have not yet heard anything in what she has said as to whether the research backs that up. If the research has not been done, will she undertake to make sure it gets done and that general practitioners are advised accordingly?

[Mrs Hodgson]

I thank the right hon. Gentleman, who I have worked closely with on a number of health matters over a number of years, and he mentions the work that we did together on mesh. I studied my speech after listening to your earlier intervention and the conversation about antibiotics—