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.
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?
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.
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?
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.
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.
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.
I thank the hon. Member for North East Fife (Wendy Chamberlain) for introducing the debate so well. It is always a pleasure in this place when I discover that I have something in common with Members from across the House. In recent months, the hon. Lady and I have discovered that we share an interest and passion for Jane Austen and hard agree that the BBC 1995 production of “Persuasion” is by far the superior, but more importantly, that we share an interest and desire to improve the diagnosis, understanding and clinical treatment of people of all ages who are living with PANS/PANDAS.
I first became aware of PANS/PANDAS when my constituent Joanne came to see me about her son Jake shortly after my election. Jake has lived with PANS/PANDAS for more than six years. For a period of time, treatment was effective, and NHS continuing healthcare funding enabled Jake to access the care of a specialist immunologist. However, despite the progress that had been made, the family have since faced repeated challenges in securing the treatment and funding, resulting in uncertainty, stress and significant personal expense. I therefore appeal to North East and North Cumbria integrated care board to please help urgently resolve these issues, and I have an outstanding query with the ICB on exactly this point. Joanne has worked tirelessly to advocate for her son, yet she continues to encounter delays, poor communication, a lack of clarity, and uncertainty about funding—a story all too typical of families trying to support a family member living with PANS/PANDAS.
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.
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.
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.
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.
I call the shadow Minister and welcome him to the Dispatch Box.
3:31 pm
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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.
While this case is deeply personal, it also highlights the wider challenges faced by these families. Too often, parents like Joanne find themselves navigating complex systems, spending years seeking access to appropriate care and treatment, all while battling for recognition of their child’s condition. It was thanks to Joanne that I had the privilege of meeting members of the PANS PANDAS youth board when they visited Parliament in April. As has been said, they shared their personal stories with me and other parliamentarians. I welcome them again in Parliament today.
I welcome the Government’s work with the royal colleges, specialist clinical bodies and PANS PANDAS UK on the development of clinical guidelines. In her remarks, will the Minister indicate when the Government expect to publish the first UK clinical guidelines for PANS and PANDAS? The guidelines should, I hope, result in a clearer and more consistent framework and recording of these conditions. Without an official diagnostic pathway and reliable data collection, it is difficult to understand how many children and young people are affected, the scale of the unmet need, or to ensure that appropriate services are available. Better recognition and data would therefore not only support future research and service planning, but help ensure that families like Jake’s receive timely, co-ordinated and compassionate care.
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.
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.
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.