We know that supporting someone affected by PANS or PANDAS can feel overwhelming, frightening and isolating. It is important that the group remains a warm, welcoming and safe space for everyone, wherever they are in their PANS or PANDAS journey.

Many people using this group will be coping with worry, grief, fear or overwhelm, and sensitive and emotionally charged topics may be discussed. For this reason, we have a safeguarding protocol in place which includes an age restriction. Whilst these topics are allowed, particularly as we recognise that this may be the only safe space to share these thoughts, moderators will raise a concern if a post or comment puts your or another members’ wellbeing at risk.

It is also important to consider that members may take different approaches to managing their child’s condition and symptoms; no-one should be made to feel that they are taking the wrong approach.

To ensure that everyone feels supported and able to share, we ask that group members always:

• Communicate with care
• Assume positive intent
• Avoid blame, hostility or judgement of other people’s choices
• Treat everybody with respect; including moderators, volunteers and charity staff

Bullying, hostility, shaming, targeting or aggressive behaviour will not be tolerated.

To protect the privacy and confidentiality of all group members, we ask that you do not share information that has been disclosed within this group. This includes screenshots or photos of content, sharing member names, or duplicating written content from posts.

We have put this rule in place because we believe that open and honest discussion can support members’ wellbeing, and we want to ensure all group members feel safe to share their thoughts and feelings. To do this, group members need to feel secure in sharing sensitive stories or personal details without fear of misrepresentation or that their disclosures could be shared elsewhere. Breaching confidentiality would also severely undermine the supportive nature of the group, whilst causing distress and potentially harm to its members; therefore, any confidentiality breaches will result in immediate removal from the group.

If you do choose to share personal health information within this group, be aware that it is at your own risk. This platform is operated by Meta, and we do not control how your data is processed or stored by Meta. for details see Meta’s Privacy Policy.

To further protect the safety and wellbeing of our community, our moderators will act promptly if any behaviour or disclosure threatens the welfare of group members. Please note, PANS PANDAS UK may document posts privately to ascertain rule violations or other similar reasons; these will never be shared externally.

The PANS PANDAS UK support Facebook Group is not intended as a substitute for professional medical advice. PANS and PANDAS affect every individual differently, and each child’s response to treatments can vary significantly. To protect the safety of all group members, we will prevent the sharing of unqualified medical, diagnostic or treatment advice that could cause harm. Even well‑meant suggestions such as recommending over‑the‑counter medicines can unintentionally cause harm, as these may trigger unexpected or adverse effects in some children. Promoting or suggesting one method of treatment over another may unintentionally create expectations around specific treatment plans. It can also cause confusion or distress if a medical professional recommends an alternative treatment strategy. For these reasons, decisions about medication or treatment should only be made with a qualified health professional who understands the child’s unique medical history and needs.

It is important to respect other members’ treatment choices, to ensure that no one feels judged or criticised for decisions they have made with medical professionals. To maintain a supportive, non‑clinical community, we ask that members focus on shared experiences, rather than directing any individual’s healthcare.

To ensure the safety and wellbeing of all members, we ask that group members always:

• • Refrain from giving medical, diagnostic or treatment advice
  • Avoid suggesting specific treatments, protocols, dosages, medications or clinicians
  • Avoid sharing your own treatment protocols, dosages or medications within the group
  • Respect other people’s treatment and healthcare choices
  • Speak to a qualified clinician before considering any recommendations given within this group.

We want to ensure this group space remains safe and respectful. Focusing on personal experience, rather than specific services, ensures the environment remains informative and supportive for everyone, in a safe way.

We understand there may be situations when you are unhappy with the way you, or your child, have been treated by a professional, whether that be a medical professional, a social worker, teacher, charity or other professional or service. However, these professionals are unable to join the group and sharing defamatory information without providing the right to reply could unfairly damage their reputation. Information and testimony can be taken out of context or misunderstood, potentially influencing other members to dismiss treatment from certain providers.

This rule is also in place to protect all members of the group, and the charity, from legal risk. Accusations, naming professional individuals or organisations, or sharing unverified claims can have serious consequences. Damaging the reputation of a named health care professional could potentially damage the delicate relationships the charity is forming to improve life for people with PANS and PANDAS.

Therefore, to protect the whole PANS and PANDAS community, we ask that when sharing personal information, you must:

• Not use the full name of professionals. Please use their initials (i.e: Dr E).
• Not accuse professionals of malpractice
• Not make unverified claims about them or their services
• Not make defamatory statements or attribute motives or intentions to any individual or organisation.

Defamation of any kind towards any individual or organisation will result in immediate removal from the group.

As indicated in the rules above, this group is provided by the charity as a safe space for peer-to-peer support. Many members of the group are going through a truly devastating, challenging and anxiety-provoking time and it is so important that everyone experiences a calm and supportive environment within the group space. Our moderators will raise a concern if content shared appears to be disruptive, inflammatory or contains unverified information which could put members of the group at risk.

Posts and comments may be removed if they contain:

• Extreme or alarming claims
• Unverified rumours
• Misinformation or inflammatory content
• Content that may cause unnecessary fear
• Defamation of charities, organisations or professionals

We will usually message you to explain why a post is removed. However, repeat offences or instances of significantly damaging or distressing content will result in immediate removal from the group.

Talking openly about your experiences is encouraged, but it is important to recognise that due to the nature of the conditions this content can sometimes be distressing or disturbing for other members of the group.

If this content represents your own personal experience, is written in a sensitive manner without graphic detail, and begins with clear trigger warnings, then it will be permitted. This way, we can protect member safety while also ensuring the group remains a supportive space to be honest and vulnerable.

If your posts or comments discuss any of the below subjects, please start with the words ‘Trigger warning’ and a list of what the content contains. For example: ‘Trigger warning – violence, self-harm’. This will enable others to protect their emotional wellbeing by scrolling past this content if they wish.

Please use trigger warnings if your post mentions:

• Suicide
• Suicidal thoughts
• Violence
• Self‑harm

The purpose of this group is for parents and carers to provide shared experiences and offer support regarding PANS and PANDAS. The group has a wonderfully large and eclectic community, and it is natural that other subjects may come into conversation. While we encourage open, considerate discussion, there are certain subjects and topics that have, historically, caused significant conflict within the group. To protect group members, and ensure the safe and supportive nature of the group, posts and comments regarding the following subjects will be removed:

• Vaccines
• Politics
• Religion
• Content referring to “Curing autism”

Please use other spaces if you wish to discuss these topics.

We have recently taken the decision to no longer allow images in posts. this includes photos, screenshots, diagrams and medical information including clinic letters or test results. We understand this may be upsetting for some members; however, one of our key priorities is promoting the safeguarding of the PANS and PANDAS community, including children and young people. As technology evolves, and in the advent of Artificial Intelligence, the internet has undoubtedly become a riskier place to share personal images, even privately (BBC, 2025 and NSPCC, 2025).   

In the context of this group, there have been historical examples of videos and patients shared of young children in significant distress. While the charity does not believe that these images are shared with any intent other than to gain help and support, there is a significant chance that the young person was not well enough to give permission for their images to be shared in this way. We are also conscious that young children may wish for the images to be removed when they are older, and it is incredibly difficult to ever fully remove anything that has been shared on the internet; even if it has been shared in a private space.

Please note, we may be contacting members and asking them to edit historic posts to remove sensitive images. We would rather give members the chance to edit the posts themselves, so that they can keep the written content and preserve the comments. However, if photos are not removed upon request, or the post holder cannot be contacted, we may decide to remove the entire post in order to protect our community.

It can be helpful to share books, articles, tools or resources with each other especially as many of you will have faced significant challenges in accessing appropriate information and support for these conditions. However, it is important to recognise that this situation can create a vulnerability towards trusting misleading, profiteering or false information. In this context, it is important that we work together to ensure that any resources shared are trustworthy and grounded in clinical expertise. Recommendations must not be shared anonymously and may be queried if we feel they are not expert-led or medically substantiated.

We always urge caution when engaging with content shared via informal social media networks. You can read more about this in our ‘evidence over influence‘ position statement. If you are unsure about something you have read or heard, please reach out to us or a qualified professional for guidance.

Please do not use this group to advertise or promote your own business, services, courses, products or events; whether free or paid. If you wish to share information about other free-to-use support groups or paid for support services, please reach out to the charity for approval first so we can ensure the groups align with our principles and maintain the safety of the PANS and PANDAS community.

Safeguarding

As explored in the rules above, we have put restrictions in place to try to ensure the privacy and safety of group members; this includes the removal of photos from the group – see rule 8. To further safeguard all members and their families, we encourage caution when sharing sensitive personal details, sensitive or identifiable information. Although the group’s status is set to ‘private’, it is important to remember that data (information) shared can still potentially be accessed, even if it has been deleted; you can read more about this here.

Private Messaging

We know that living with PANS or PANDAS can be isolating, and we understand it can be helpful and reassuring to form friendships with other parents or carers experiencing similar situations to yours. We ask that you do not send private messages to members of the group unless invited to do so. Even the most well intended message could appear intrusive or unsafe, particularly in an environment where emotions are heightened and vulnerability increased. To further protect our community, anyone found to be sending unsolicited private messages will be removed from the group.

At times, PANS PANDAS UK may contact members privately to discuss rule violations or other necessary matters. This helps us address concerns discreetly and maintain the safety and integrity of the group.

Anonymous posting

Anonymous posts can allow parents or carers to seek advice without fear of accidentally identifying their children. For this reason, we do allow anonymous posting, but we encourage members where possible to use nicknames instead, as this helps maintain a sense of community and humanity within the group. You can find out how to set a nickname here.