About PANS and PANDAS
PANS and PANDAS are believed to be the result of a misdirected immune response to a pathogenic trigger, leading to the abrupt onset of a range of challenging symptoms, including OCD, tics and restricted food intake, alongside cognitive, behavioural, and neurological symptoms.
The conditions primarily impact Children and Young People, however adults can develop PANS, and if untreated or not fully responsive to treatment, the conditions can also be taken into adulthood.
Accessing treatment through the NHS in Scotland can be difficult, as there are no UK clinical guidelines for PANS or PANDAS, however these are under development through the work of our friends and colleagues at PANS PANDAS UK, and the PANS PANDAS Steering Group, and there is an interim statement in place to guide clinicians when faced with a patient presenting with symptoms of the conditions.
Families in Scotland not only face challenges in accessing treatment, but due to the lack of knowledge and understanding of the conditions across health, education and social care, there is little support for them in managing symptoms.
PANS PANDAS Scotland has been formed to help children, young people and adults gain the support they need across health, education and social care in Scotland. It goes without saying that the priority in supporting those affected by PANS or PANDAS is clear clinical guidelines, and that is going through a formal and robust process which takes time. In the mean-time. but what we can do is work towards those affected being supported in the best possible way, and pave the way for action within the relevant organisations and authorities for when the guidelines are published.
The Situation in Scotland
Our Work
PANS PANDAS Toolkit
Designed around the national Getting It Right For Every Child (GIRFEC) Framework, we are developing a toolkit to support families and professionals to understand and support children, young people and adults with PANS or PANDAS.
Awareness
Sharing information and engaging with public services across Scotland, seeking local and national political support, and engaging with parents networks.
Community
Building the PANS PANDAS Scotland Community, so that no-one affected by this condition feels alone.
