PANS PANDAS UK were pleased to attend a meeting earlier this week hosted by the North Thames Paediatric Network and attended by the South Thames Paediatric Network, along with multiple other clinicians from across various fields of medicine and areas of the UK. The purpose of this meeting was to begin preliminary discussions about the potential for developing a pathway for children and young people with suspected PANS and PANDAS within the North and South Thames Paediatric Networks. These networks represent over 50 hospitals in North London and into the borders of the East of England, and throughout South London, Kent, Surrey and Sussex.
This meeting was an important step forward for the PANS and PANDAS community. It demonstrated an acknowledgement that these conditions must be better supported at ground-level within the NHS. Equally importantly it showed a willingness to begin identifying practical solutions for how to look after these young people whilst work continues with the PANS PANDAS Steering Group to reach consensus on how the conditions should be managed in the UK.
The significant number of attendees, both private and NHS-based from the fields of Psychiatry, Paediatrics, Neurology and Immunology, is testimony to the growing interest in PANS and PANDAS amongst health professionals. As a charity, we delivered a series of compelling stories from our community which demonstrated the devastating impacts of both the conditions themselves, and of the current variation across the UK in availability of appropriate understanding and treatment. Our presentation was well-received, with attendees unfamiliar with the conditions expressing shock at the lack of informed care on offer to our community.
We look forward to updating you on this work as things progress.