Our response to new safeguarding guidance
We are making sure children with PANS or PANDAS are not overlooked in new government safeguarding guidance.
The government’s safeguarding guidance, Keeping Children Safe in Education (KCSIE), has recently been updated after a national consultation. This guidance explains how schools and colleges in England should spot when a child or young person may be at risk, how to respond, and how to work with other services to keep them safe.
PANS PANDAS UK took part in this consultation to help ensure that children and young people whose needs are driven by medical symptoms, and their families, are not misunderstood.
Our response was informed by evidence from our community surveys and the experiences that families have shared with us.
Although the consultation has now closed, this page provides context on the proposed updates to Keeping Children Safe in Education (KCSIE).
Why does this matter?
Safeguarding guidance shapes how schools understand attendance difficulties, changes in behaviour and emotional distress in children and young people in the classroom. It also informs how educators and school teams interpret the role of parents, carers and family circumstances when considering the safety and wellbeing of a child or young person. Safeguarding is always essential, but it is most effective when decisions are focused on the young person and are informed by a clear understanding of their health needs.
What did PANS PANDAS UK say?
In our response, we shared a concern that our community often raise with us: that children and young people with complex and changing medical conditions like PANS or PANDAS are more likely to be referred into safeguarding processes when their medical needs are not fully understood.
We explained that some symptoms of PANS and PANDAS can look similar to signs that professionals are trained to watch for. These can include:
- Having difficulty attending school
- Showing strong emotional distress
- Masking (hiding how unwell they are)
- Parents and carers speaking up strongly to get support
Understandably, these symptoms could appear concerning, and safeguarding is vital to protect children and young people. At the same time, we indicated that understanding the medical context of PANS and PANDAS would decrease the amount of disproportionate referral risks and ensure the right support is in place. We also shared the importance of decisions being informed by a child or young person’s health needs, carefully considered, and focused on what will best support them.
What did our community say?
Safeguarding guidance is important to get right for children with PANS or PANDAS because the conditions can cause sudden, severe changes in behaviour. These changes, and other symptoms of the conditions, can look similar to safeguarding concerns.
Families have told us that this overlap can sometimes lead to concerns being escalated before a medical cause, such as PANS, has been investigated or is fully understood.
Our community has shared that a misunderstanding of PANS and PANDAS symptoms can lead to sudden and distressing safeguarding referrals, causing significant trauma for the whole family. Parents and carers have shared they have felt ‘blamed’, ‘judged’ or ‘not believed’, and many report that a referral has delayed or prevented access to appropriate medical and educational support.
Clear guidance will help schools and professionals to consider medical explanations for changes in behaviour and to respond in a supportive, proportionate manner. We were pleased to see the following aspects of the new guidance:
- Clearer recognition that a medical condition on its own is not a safeguarding concern
- More focus on professional judgement and understanding the full picture
- Stronger expectations for services to work together
- Better consistency across safeguarding guidance
We also welcomed stronger guidance about supporting children and young people with medical conditions. This highlights the need for education, health, and social care to work closely together.
What happens next?
We look forward to the publication of this revised guidance later this year. Getting this right helps protect children and young people in the fullest sense not only from harm, but also from unnecessary distress and trauma. PANS PANDAS UK will continue to support parents and carers and work to improve understanding across education, health, and safeguarding.
What support is available?
If you or your family are affected by safeguarding concerns or referrals, you may find these resources helpful:
For caregivers
Kelly Jarvis from Sunshine Support explores ways to advocate for your child, how to communicate clearly and safely with professionals, and how to navigate FII investigations. Kelly also trains school leaders and advocates in representing their educational establishments at SENDIST tribunals.
For professionals
In collaboration with Cathleen Long (independent social worker and co-author of the recent British Association of Social Work’s practice guidance on FII and Perplexing Presentations), PANS PANDAS UK have written a guide for social work, healthcare and education professionals.
For everyone
Our Education Lead, Tina, speaks to Education Magazine podcast about the difficulties that children with PANS or PANDAS can experience in schools, including some of the vulnerability factors that are leading to families being accused of safeguarding or fabricated illness accusations.
