Neuropsychiatric Conditions: PANS and PANDAS

Freddie van Mierlo Excerpts

Thursday 25th June 2026 Commons Chamber

[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.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

Albie is a superstar, as is his mum!

I call the Liberal Democrat spokesperson.