MSP letter template - Request support for PANS PANDAS treatment pathway

Sep 1, 2026

Upload by Kyle

A constituent letter drafted for an MSP requests support to address major barriers to appropriate NHS treatment for PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). It highlights low awareness among medical professionals, limited access to specialists in Scotland, and negative impacts on education and family wellbeing. The letter explains infection-induced immune causes, common misdiagnosis as purely psychiatric or developmental, and evidence that timely anti-microbial/anti-inflammatory/immunological care can significantly reduce or resolve symptoms. It asks MSPs to collaborate on equitable treatment pathways and offer engagement.

LanguageEnglish

CategoryLetters

FormatDOCX

Pages2

Reading Time1 min

AccessFree to download

Request for MSP support

About PANS and PANDAS

Current situation and access barriers

How the MSP can help

*Your Address* *Your Telephone Number* *Your Email Address* *Insert date* Dear *Insert name* I am writing to you as a constituent, who has been personally impacted by a devastating condition called PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) *and/or* PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). As one of my representatives in the Scottish Parliament, I ask for your support in resolving the current, extensive barriers to appropriate treatment in the NHS. These barriers affect access to education and are causing unacceptable additional suffering for my own family and many other families living with PANS or PANDAS. How can you help? The charity HYPERLINK "https://panspandasuk.org/about-pans-pandas/" \h PANS PANDAS UK are seeking to bring together MSPs from across Scotland to work together to ensure that a treatment pathway is developed and that ALL those affected have equitable, effective and excellent treatment for these conditions, as well as support and understanding in education and social care. About PANS and PANDAS PANS and PANDAS are infection-induced immune-mediated conditions, which commonly present with both physical and psychiatric symptoms. They are little-known conditions which are poorly managed in the UK, despite being formally recognised by the World Health Organisation. There is currently no formal data about incidence of PANS or PANDAS in the UK, but a conservative estimate is that approximately 8500 children in the UK have these conditions at present. The charity PANS PANDAS UK currently supports more than 7000 families and that number is growing by the day. PANS and PANDAS are caused by a misdirected immune response to common infections (for example Strep, Covid 19 or Chickenpox). A patient’s normal neurologic functioning is disrupted, resulting in a sudden onset of HYPERLINK "http://www.nimh.nih.gov/health/topics/obsessive-compulsive-disorder-ocd/index.shtml" \h Obsessive HYPERLINK "http://www.nimh.nih.gov/health/topics/obsessive-compulsive-disorder-ocd/index.shtml" \h Compulsive Disorder (OCD) and/or tics and/or eating restrictions. HYPERLINK "https://moleculeralabs.com/thirddev/symptoms-of-pans-pandas/" \h PANS and PANDAS can include a variety of other comorbid symptoms such as anxiety, loss of previously gained skills, psychosis, intrusive thoughts, irritability, hyperactivity, sleep disturbances, mood swings and urinary problems amongst others. Despite having the word ‘paediatric‘ in its name, adults can develop PANS and children who are not treated can take the illness into adulthood. All too often, children and adults with PANS and PANDAS are misdiagnosed as having a purely psychiatric illness, or a developmental condition such as Tourette’s syndrome or ASD. Many sufferers are treated solely with psychotropic drugs to manage their symptoms. It is known amongst PANS-aware clinicians that these patients often respond badly to standard doses of these medications. Furthermore, these drugs fail to address the root cause of the symptoms and can result in long-term damage to the sufferer. There is a growing scientific literature base which demonstrates that, when given appropriate anti-microbial, anti-inflammatory and/or immunological treatment (as recommended in published international peer-reviewed treatment guidelines), PANS and PANDAS patients can experience complete symptom resolution, or dramatic reduction in symptom severity. Current situation Levels of awareness of PANS and PANDAS amongst medical professionals are low and access to appropriate healthcare is currently extremely challenging, for many families, the only route for medical support is through private healthcare. For families in Scotland this brings an additional burden, as specialists in the condition are primarily based in London. For many this will bring the added cost of travel to appointments, often more than doubling the cost, as well as the emotional co

FAQs

What conditions are PANS and PANDAS, and what symptoms can they cause?

PANS and PANDAS are infection-induced immune-mediated conditions that present with both physical and psychiatric symptoms, including sudden onset obsessive-compulsive symptoms, tics, eating restrictions, and various comorbid issues such as anxiety, irritability, and sleep disturbances.

Why does the current NHS pathway create barriers for families in Scotland?

Awareness among medical professionals is low, access to appropriate healthcare is extremely challenging, and specialists are primarily based in London, creating additional travel cost and emotional burden while slowing diagnosis and effective treatment.

What kind of treatment approach does the letter reference as potentially effective?

When patients receive appropriate anti-microbial, anti-inflammatory, and/or immunological treatment aligned with published international peer-reviewed guidelines, patients can experience complete symptom resolution or dramatic reduction in severity.

Sep 1, 2026

Upload by Kyle