Clinical Professionals Conference
Agenda
08:00 – 09:00
Registration with coffee and pastries
09:00 – 09:20
Welcome, housekeeping and objectives
Vicky Burford, CEO
09:20 – 09:30
Icebreaker
Andy Koss, chair of Trustees
09.30 – 10.00
Patient Stories
An opportunity to hear from members of our community, outlining
their experiences of life supporting children, young people and
adults with PANS and PANDAS.
Community members
10.00 – 11.00
History, challenges and what we know now
This session will outline the origins of PANDAS and subsequently
PANS, reflecting on the challenges faced by doctors early on, and
lessons learned. It will outline why professional disagreement has
persisted and provide an overview of key advances in
understanding and treatment.
Dr Sue Swedo
Dr Tim Ubhi
Professor Jennifer Frankovich
Professor Ming Lim
11.00 – 11.30
Coffee break
11.30 – 12.10
Introduction to the UK Guidelines
This session will provide an overview of the approach taken by the
Guideline Development Working Group to standardise and
support recognition, assessment and care, through the ongoing
development of a treatment guideline, produced in collaboration
with the RCPCH, with the support of NHS England and overseen
by the National PANS PANDAS Steering Group.
Dr Su Laurent
Professor Ming Lim
Dr Ashley Liew
12.10 – 13.10
Themed Session 1: Assessment and Diagnosis
This session will explore what clinicians may see in the consulting
room, from early signs and symptoms to the clues hidden in family
history and patient stories, across different stages of the diagnostic
journey. It will cover how to build a clearer picture by asking the
right questions and undertaking the right investigations, while
recognising the complexity of fluctuating symptoms, atypical
presentations, and co-morbidities. The session will also consider
how PANS and PANDAS relate to neurodivergence, and will
conclude with a case study to bring these themes together.
Professor Rajat Gupta
Dr Tim Ubhi
Professor Jennifer Frankovich
Professor Russell Dale (remote)
13.10 – 14.00
Lunch
14.00 – 15.00
Themed Session 2: Management
This session will explore how different professionals can work
together to provide effective, joined-up care, including when and
how to refer on. It will cover approaches to managing both acute
and chronic cases, highlighting key differences in treatment, how
to monitor response, and what to do when progress is limited. The
discussion will also address when and how to safely withdraw
treatments, and how to respond if symptoms return. The session
will conclude with a case study.
Dr Ashley Liew
Professor Rajat Gupta
Professor Russell Dale (remote)
Dr Sue Swedo
15.00 – 15.30
Themed Session 3: Monitoring and Review
This session will focus on supporting patients over the longer term,
including how to monitor symptoms, plan follow-ups, and
determine who should lead ongoing care. It will cover the use of
flare protocols to manage relapses and discuss key considerations
for a successful transition to adult services. The session will
conclude with a case study to illustrate these approaches in
practice.
Dr Ashley Liew
Professor Rajat Gupta
Professor Ming Lim
15.30 – 16.00
Coffee break
16.00 – 16.30
Themed Session 4: Information, Education and Support
This session will explore how to support patients both before and
after diagnosis, highlighting key considerations at each stage of
their journey. It will also focus on the wider impact on families,
including the emotional, social, and financial challenges faced by
parents, carers, and siblings. The importance of working closely
with schools will be addressed, with practical insights into how
education settings can play a vital role in supporting recovery and
day-to-day functioning.
Dr Vicky Queralt
Lucy McDonald
Dr Jennifer Heseltine
16.30 – 17.30
Panel Q&A
Open questions from the audience, facilitated by Dr Su Laurent
All speakers
