Neuropsychiatric Conditions: PANS and PANDAS

Nusrat Ghani Excerpts

Thursday 25th June 2026 Commons Chamber

[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 ---

[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.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

Albie is a superstar, as is his mum!

I call the Liberal Democrat spokesperson.

[Susan Murray (Mid Dunbartonshire) (LD)]

I am grateful to my hon. Friend the Member for North East Fife (Wendy Chamberlain) for securing this debate, and for all her work to raise the profile of these childhood conditions. I also thank the Backbench Business Committee for selecting this topic for debate.

As she said, my hon. Friend first raised PANS/PANDAS in this House more than three years ago and has pushed for change ever since. Indeed, I was pleased to meet the impressive PANS PANDAS UK youth board on their visit to Parliament. For families, the onset of PANS/PANDAS is often sudden and deeply distressing. A child who was well one week can, the next, be gripped by anxiety, tics or obsessive behaviours. What follows is too often not treatment, but a search from GP to specialist and back again for someone who can provide a diagnosis.

Almost three years ago, my hon. Friend asked the Government for a small number of reasonable things. I am sorry to say that families still have not seen the change that they are entitled to expect, but I hope that what we heard earlier means that it will be coming soon. The Department of Health and Social Care has said that it does not hold data on how many children are affected, and NICE has not yet produced guidance, after concluding there was insufficient evidence to produce useful guidance. Clinicians are still left without a clear national pathway to follow, even if they are aware of the conditions.

The result, as we have heard, is a postcode lottery. A survey for PANS PANDAS UK found that just 2% of families said their GP even considered PANS/PANDAS as a possibility for their child’s symptoms. Families who can pay go private to see specialists; children whose families cannot pay, lose their childhood, miss school and fail to thrive. Such delays are not administrative inconveniences; they are a risk to children’s lives. According to PANS PANDAS UK, 43% of parents say that their child has talked about taking their own life, and 61% say that their child has expressed a desire to no longer be here. These are young children, made desperately unwell by a treatable condition, yet they are waiting months or years for someone simply to recognise what is wrong.

There are two mothers in the Gallery today, one from my constituency of Mid Dunbartonshire, and one from just next door. Both have been forced to spend significant sums of their own money on diagnoses and treatment, including travelling down to London to see specialists in private clinics. As we have heard, that is not unusual. Nearly a third of affected families report a financial impact of more than £50,000, and one in eight report an impact of more than £100,000, simply to get their child diagnosed and treated. We have a system in which a recognised diagnosis is reserved for those who can afford to pay for it, and those who cannot are often left behind.

Two weeks ago, my Liberal Democrat colleague Adam Harley MSP, who represents many of the same families that I do, raised one of the cases with the First Minister in the Scottish Parliament and called for properly recognised NHS guidance. Health is a devolved matter, but families across Scotland face the same barriers as families anywhere else in the UK, and they frequently end up in England to access treatment. Has the Minister had any discussions with the Scottish Government on taking a unified approach to tackling the issue? Given that we are expecting clinical guidance to be released in August, I am sure that families in Scotland would greatly appreciate co-operation between the Governments in Holyrood and Westminster to help bring the postcode lottery they currently face to an end.

PANS/PANDAS are treatable conditions, and children can get their childhood back. To make that happen, I urge the Government to help plug the current gaps in evidence and knowledge around these conditions, including the number of children affected, through supporting research. The Liberal Democrats have called for an increase in research and development spending to 3.5% of GDP to help drive British research, to develop a greater understanding of conditions like PANS/PANDAS, and to evidence the efficacy of available treatment.

An effective treatment can change a child’s life—children like Isa and Hugo—for as little as £9. Effective diagnosis and treatment will save the NHS money. Our NHS was founded on the idea that it would treat according to need, not ability to pay. Sadly, in the case of children with PANS/PANDAS, too often that principle is not being upheld. Families simply trying to find treatment for their children are being failed and we must rectify that, wherever in the UK they live.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

I call the shadow Minister and welcome him to the Dispatch Box.

--- Later in debate ---

[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—

[Madam Deputy Speaker (Ms Nusrat Ghani)]

Order. It was not my intervention, but that of the right hon. Member for New Forest East (Sir Julian Lewis).

[Mrs Hodgson]

Thank you, Madam Deputy Speaker. I should know better after 21 years in this House; it just goes to show—you can always teach an old dog new tricks.

Following the right hon. Gentleman’s intervention on antibiotics, I noticed that there was nothing about that in my speech, so I have come to the conclusion that that will come forward in the guidance later this year. I will be looking for that closely, and I am sure that my officials heard the point mentioned in the debate. As the right hon. Gentleman says, if a simple course of antibiotics is going to make all the difference, we would want to ensure that it is provided.

In closing, I want to emphasise that the experiences of children and families affected by PANS/PANDAS are real and significant, and that we are taking action to strengthen the system and deliver meaningful change. Our responsibility is to respond with compassion, to listen carefully, and to ensure that support is accessible, timely and appropriate. By strengthening clinical awareness, improving integration across services and continuing to build the evidence base, we can move towards a system that delivers better recognition, more effective support, and improved outcomes for children and young people, and their families.