Invest in our future
A truly groundbreaking achievement
The new treatment guideline, due to be published later this year, has come about because of groundbreaking work to support children, young people and families affected by PANS and PANDAS.
On the recommendation of NHS England we built the PANS PANDAS Steering Group (PPSG) with the aim of finding a consensus on the management and care of patients with PANS and PANDAS.
We worked with stakeholders, including those with opposing positions, and ensured each organisation and participant had equal voice. Our work with parliamentarians to complement the work being undertaken by the PPSG led to backbench debates in parliament, roundtable events with our Youth Board, and drop in events with parents and carers. We also made sure the voice of our community sits at the heart of everything we do through surveys and our community reference group. This collaborative way of working has been recognised by DHSC as an example to other organisations wishing to influence policy.
Developing the PANS treatment guideline represents a truly remarkable achievement because it has been built in circumstances where progress on this scale would normally be considered impossible. Given the obscurity of these conditions and the current difficulty accessing adequate care and support, it is a powerful step forward that we now have regular engagement with three Clinical Directors at NHS England, active conversations with the Department of Health and Social Care, an established All Party Parliamentary Group and meaningful involvement from multiple medical royal colleges and other key stakeholders.
An opportunity not to be missed
The development of the PANS treatment guideline has moved a once marginalised issue into the centre of national attention and created a foundation for clinical and policy progress that would previously have been unimaginable. The dissemination and awareness raising work that will follow the publication of this guideline, is an opportunity for our supporters to be part of something that will have a lasting impact for those affected by PANS and PANDAS.
Your contribution will be directly shaping the future of clinical practice and improving outcomes for the many thousands of children and young people who have not previously been able to access effective diagnosis and treatment within the NHS. Your engagement will help ensure that these new standards of care are understood, implemented and sustained, and that the families most affected feel the benefit of this long overdue progress.
Our landmark, in-person Perspective on PANS conference, is just the beginning…
What is Perspectives on PANS?
Perspectives on PANS is our landmark three-day, in-person conference dedicated to advancing understanding, research, clinical practice, and family support around PANS and PANDAS. We will host three distinct days as part of this event: a Research Symposium, a Clinical Professionals Conference and a Community Conference.
We hope this event will be the launchpad for the newly published UK guideline, due later this year.
Day 1: Research Symposium
Our Research Symposium is a one day event for medical professionals and researchers to connect, share insights and discuss key clinical and scientific issues. We hope this will deepen professional networks and facilitate collaborative working practices and research efforts across the globe and professional disciplines.
Day 2: Clinical Professionals Conference
This day will bring together clinicians, consultants, paediatricians, GPs and allied health professionals to support the wider understanding of PANS and PANDAS, as well as the clinical application of the new treatment guideline that we hope will be launched at this conference.
Day 3: Community Conference
This event will be a fantastic opportunity to share information about the new treatment guideline currently being developed, for community members to connect with one another, and for the charity to provide valuable updates and support information. We are thrilled that we will be able to include a panel Q&A with leading UK and international clinicians.
“This conference will be an excellent opportunity for improving awareness, empowering families, driving clinical understanding and excellence, and fostering collaboration between researchers and clinicians both across the UK and internationally.”
Vicky Burford, PANS PANDAS UK CEO
Please contact our Conference Manager, Claire Baggott, for more information on how to financially support our conferences, or donate via our JustGiving page.
