PANS and PANDAS are conditions that can cause inflammation of the brain, leading to symptoms such as OCD and tics. The speaker highlighted the lack of awareness among NHS doctors with only 10% having heard of the condition, resulting in misdiagnosis and mistreatment for many children. She also mentioned that approximately 8,500 children experience these disorders according to charity estimates.

Andrew Selous expressed concern about the lack of a specific NHS service for PANS and PANDAS despite its recognition by the World Health Organisation in ICD-11. He highlighted the importance of early treatment as advised by medical professionals and praised the work of the PANS PANDAS UK charity for providing information leaflets to GPs. Selous shared an email from parents in his constituency detailing their struggles with accessing NHS support, calling for recognition and a dedicated treatment pathway.

A family in his constituency has been living through a difficult situation since their daughter first showed symptoms of PANS/PANDAS in January. He emphasises the importance of raising awareness across the country, including among medical professionals.

Ian Lavery discussed the challenges faced by families dealing with PANS/PANDAS, highlighting a constituent's case where a child showed severe symptoms after contracting chicken pox. The symptoms persisted for seven years and worsened during the pandemic when the child had to deal with anxiety, aggression, loss of speech and writing abilities. Despite clear signs pointing towards PANS/PANDAS, the family struggled to get recognition from clinicians and NHS due to lack of clinical guidelines. This led to the family seeking private medical advice at a significant cost. Lavery also mentioned that 42% of paediatricians had never heard of PANS/PANDAS, 47% received no NHS treatment, and 95% said their GP did not suggest PANS/PANDAS when presented with symptoms.

Mr Shannon thanked the hon. Member for securing the debate, highlighting that between one in 200 children in the UK are affected by PANS and PANDAS. He noted the NHS's lack of uniform recognition or treatment for these conditions despite World Health Organisation guidance recommending antibiotics. Families struggle to access appropriate care and support, with some referrals to CAMHS not being adequate responses. Symptoms such as OCD, tics, restricted food intake, regression, anxiety, depression, irritability, hallucinations, and delusions complicate daily life for affected children. Mr Shannon called for better cooperation between Westminster and devolved nations to share evidence and information, stressing the importance of education departments supporting children with these conditions.

Asked if the Department has a mechanism to alert all GPs about PANS/PANDAS and suggested encouraging early antibiotic prescription as a risk-free option.

He commends the hon. Member for her preparation for the debate and inquires about how symptoms of PANS/PANDAS can sometimes be confused with autism spectrum disorder, ADHD, and other conditions.

Expressed concern over families having to turn to private healthcare for PANS and PANDAS treatment, highlighting the importance of raising awareness through training and distributing informational materials to GPs. Emphasized the need for clinicians to recognize the condition and for Scottish Government guidelines to be challenged to move the issue forward.

He asks whether clinical evidence and lived experience should inform the evidence base that clinicians and NICE use when making decisions about PANS/PANDAS, urging for a more reality-based approach to help constituents suffering from this condition. He briefly mentioned the need to work with colleagues in devolved nations such as Scotland, Wales, and Northern Ireland to make appropriate health policy for each region.

He highlighted the misinterpretation of symptoms, subsequent misdiagnoses, and significant problems caused by these conditions. According to a survey, 95% of GPs are unaware of PANS and PANDAS, leading to multiple diagnoses for children with these conditions. He stressed the need for early diagnosis to prevent chronic neurological conditions and pointed out that families struggle to access NHS treatment, often relying on private healthcare. Emphasised the cross-party consensus and distress among MPs regarding PANS/PANDAS, highlighting that the condition is often mistakenly treated as psychiatric when it can be medically addressed with antibiotics. Discussed the lack of guidance on diagnosis, treatment, and assessment for PANS/PANDAS with the Minister. Emphasised the need to build an evidence base for clinical guidelines.

She questions whether many undiagnosed children could be in inappropriate specialist education programmes for autism or ADHD due to misdiagnosis, which would not be necessary if they had been diagnosed correctly. PANS and PANDAS are life-altering conditions for many children, often causing severe anxiety, OCD, and other symptoms. Ruth Cadbury highlighted that early diagnosis and appropriate treatment can significantly improve recovery outcomes but noted the struggle families face in obtaining timely support from the NHS due to a lack of awareness among medical professionals. Noted that there is no lab test for diagnosing PANS/PANDAS, similar to other neurological conditions like ME and long covid, suggesting the medical profession should think outside the box. Emphasised that antibiotics can often improve symptoms associated with PANS/PANDAS, highlighting the need for rapid diagnosis and treatment. Suggested that a course of antibiotics may provide immediate relief.

Ms Saxby shared the story of her constituent Neil Gilson whose son Jack suffered from PANS and PANDAS after contracting tonsilitis. She highlighted how Jack's condition changed overnight, affecting his mental and physical health severely before a diagnosis was made and treated with antibiotics. Ms Saxby emphasized that due to lack of awareness among GPs, many cases are misdiagnosed or overlooked, leading families through years of anxiety and uncertainty. Cited the example of Jack, illustrating how a diagnosis can significantly impact a child's ability to attend school and manage symptoms. Stressed the importance of multidisciplinary team referrals and early intervention.