Speaking to European Parliament

Our CEO, Vicky Burford, and our Health and Policy Lead, Katy Hindson, travelled to the European Parliament in Brussels last week to speak at an event organised by Associazione Genitori PANS PANDAS BGE, the Italian equivalent of PANS PANDAS UK.

Attended by the President of the European Parliament, Roberta Metsola and Olivér Várhelyi, European Commissioner for Health, the event brought together professional and lived experience from across Europe and beyond, to raise awareness of PANS and PANDAS and to evidence the need for a coordinated and joined up approach to improving care and furthering research. You can access a recording of the full event here. PANS PANDAS UK speaks at 4:59:00, PANS PANDAS unveiled is introduced at 3.41:00.

What did PANS PANDAS UK speak about?

Event organisers asked us to focus our speech on the efforts underway in the UK to ensure that everyone with PANS and PANDAS has access to prompt, appropriate healthcare on the NHS. This work is firmly rooted in and driven by the experiences and needs of our UK community of patients and families and so our presentation began with the words of affected young people before presenting the early findings of our 2026 Speak Up survey.

The ten-minute speaking slot was not nearly enough to begin to describe the impacts of the conditions on families, nor to explain the way this is compounded by a lack of professional understanding and support. Nonetheless, it was clear from the audience that the quotes and statistics we shared resonated deeply.

From this foundation of lived experience, Vicky and Katy went on to share a timeline of the conditions in the UK, including both the challenges families have faced for too many years and the hopeful signs that a shift towards better care is underway.

We closed our presentation with a call to action to the policymakers present, recalling the words of youth board member Alice, 14, who recently told UK MPs:

“Don’t just think … ‘That’s really sad, those poor children’. 
Think … ‘What action can I take to help?’.” 

Why was PANS PANDAS UK involved?

“It was our honour to represent the UK PANS and PANDAS community at the European Parliament yesterday. In the auditorium, the determination to work together, across professions, disciplines and borders, to improve healthcare and understanding of the conditions was palpable.

Bringing together parliamentarians, clinicians, scientists, patient organisations and families, this important event clearly demonstrated the depth of need for increased awareness and support, and the importance of working collaboratively to meet this need.

We look forward to continuing to build on the relationships forged at this important event at our conference this October.” – Katy Hindson, our Health and Policy Lead.

Who else represented the UK PANS and PANDAS community?

The UK was well represented at the event, with our partners from the Isca Evidence team presenting the NIHR-funded PANS PANDAS Unveiled project and ultra-marathon swimmer and PANDAS parent Neil Gilson sharing his son Jack’s story and how it has driven him to undertake the Legend of the Lakes challenge.

Dr Tim Ubhi and Katy Gordon-Smith from the London PANS Clinic and also Gillian Mathewson from PANS+ Scotland all gave presentations bringing their own experience and expertise to the discussion.