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PANS PANDAS UK's response to the BPNA Consensus Statement on PANS and PANDAS

As the PANS PANDAS UK charity (PPUK), we represent and assist families managing these conditions throughout the UK. The British Paediatric Neurological Association (BPNA) released a consensus statement on 23 April 2021 regarding PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections).


Since April 2021, PPUK has become increasingly aware of the detrimental impact the BPNA statement has had on UK families managing PANS/PANDAS. The statement has resulted in many patients being refused initial, or continued, appropriate treatment and an increase in the number of Fabricated or Induced Illness (FII) accusations being made against families.


The BPNA statement contains multiple errors and fails to adequately discuss or accurately represent the vast body of medically published literature regarding the likely infectious, autoimmune, and inflammatory triggers of PANS/PANDAS. It states that antibiotic, anti-inflammatory or immunomodulatory treatments are not recommended without evidence for their use. Instead, the BPNA urge medical professionals to only refer patients to psychiatric services to manage their individual symptoms, rather than investigating and treating an underlying cause of the dramatic and acute changes in the neuro-behavioural presentation of these children and young adults.


In fact, internationally recognised peer-reviewed recommendations for the evaluation of suspected PANS/PANDAS children and relevant treatment guidelines already exist (1-5). Multiple domains for assessment and investigation are recommended by these international guidelines, focusing on autoimmune/autoinflammatory diseases, infections, immunodeficiency syndromes, and neurological/psychiatric disorders.


The BPNA is a charity and one of their constitutional objectives is to train and educate professionals working in the field of paediatric neurosciences. The BPNA is not a Royal Chartered Faculty, Royal College or Public Body. Therefore, no medical professional is obliged to accept BPNA educational material as authoritative. The fact that the BPNA have sought and obtained endorsement from the Royal College of Psychiatrists also does not give any educational material equivalent status to that which could be conferred by a public body.


In our opinion, the “consensus statement” represents an educational pamphlet produced by the BPNA. The statement is not peer reviewed or medically published. Most concerning, in our opinion, is that the BPNA statement contains a number of errors, inaccuracies and omissions. It alarmingly mis-quotes and mis-represents cited research papers and contains basic flaws such as spelling mistakes. The statement also omits a vast body of published peer-reviewed medical literature on PANS and PANDAS. All of the above demonstrate a significant lack of knowledge, professionalism, due care and attention by the unidentified authors of this statement. As such, it is of our opinion, that the “consensus statement” does not provide trustworthy or accurate information regarding the treatment of patients with PANS or PANDAS and should not be referred to in any decision-making process by UK clinicians.


Despite offers made by the charity to participate in the development of the BPNA consensus statement, the BPNA declined to facilitate this or to consider our representations on behalf of the parents of patients with PANS or PANDAS prior to the release of their “consensus statement”. Since the statement release the BPNA have failed to respond to PPUK correspondence. Due to this lack of engagement from the BPNA, PPUK have produced a rebuttal document addressing specific errors, omissions and mis-quotations in the consensus statement and providing details of the body of published work on PANS and PANDAS which was omitted by the BPNA. This rebuttal document can be downloaded from the link at the bottom of this page.


The BPNA statement is disappointing and fails to help children who present with neuropsychiatric symptoms. Clinicians treating any child who meets PANS/PANDAS diagnostic criteria should remain open minded and explore all investigative and treatment options.


PANS PANDAS UK seek to work proactively and positively with all organisations and academic institutions in the interests of patients with, or suspected of having, PANS or PANDAS and their families. We welcome feedback, collaboration and opportunities to advance the identification and treatments of the conditions.


We would like to take this opportunity to express our gratitude and thanks to the families and patients we represent, the APPG for PANS and PANDAS, the PANS Physician’s Network and universal institutions and family representative groups for continuing the vital work necessary to improve lives.

PANS PANDAS UK Response to BPNA CS - Final PDF
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References


1. Chang, K., J. Frankovich, M. Cooperstock, M. W. Cunningham, M. E. Latimer, T. K. Murphy, M. Pasternack, M. Thienemann, K. Williams, J. Walter, and S. E. Swedo. 2015. "Clinical Evaluation of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome (Pans): Recommendations from the 2013 Pans Consensus Conference." Journal of child and adolescent psychopharmacology 25, no. 1 (Feb): 3-13. https://dx.doi.org/10.1089/cap.2014.0084.

2. Thienemann, M., T. Murphy, J. Leckman, R. Shaw, K. Williams, C. Kapphahn, J. Frankovich, D. Geller, G. Bernstein, K. Chang, J. Elia, and S. Swedo. 2017. "Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part I-Psychiatric and Behavioral Interventions." J Child Adolesc Psychopharmacol 27, no. 7 (Sep): 566-573. https://dx.doi.org/10.1089/cap.2016.0145.

3. Frankovich, J., S. Swedo, T. Murphy, R.C. Dale, D. Agalliu, K. Williams, M. Daines, M. Hornig, H. Chugani, T. Sanger, E. Muscal, M. Pasternack, M. Cooperstock, H. Gans, Y. Zhang, M. Cunningham, G.Bernstein, R.Bromberg, T. Willett, K.Brown, B. Farhadian, K.Chang, D.Geller, J. Hernandez, J. Sherr, R. Shaw, E. Latimer, J. Leckman, M. Thienemann, and Pans Pandas Consortium. 2017. "Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part II—Use of Immunomodulatory Therapies." Journal of Child and Adolescent Psychopharmacology 27, no. 7 (2017/09/01): 574-593. Accessed 2021/04/30. https://dx.doi.org/10.1089/cap.2016.0148.

4. Cooperstock, M.S., S.E. Swedo, M.S. Pasternack, T.K. Murphy, and Pans Pandas Consortium for the. 2017. "Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part III—Treatment and Prevention of Infections." Journal of Child and Adolescent Psychopharmacology 27, no. 7 (2017/09/01): 594-606. Accessed 2021/04/29. https://dx.doi.org/10.1089/cap.2016.0151.

5. Swedo, S.E., J.Frankovich, and T.K. Murphy. 2017. "Overview of Treatment of Pediatric Acute-Onset Neuropsychiatric Syndrome." Journal of child and adolescent psychopharmacology 27, no. 7: 562-565. https://dx.doi.org/10.1089/cap.2017.0042.


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