Roundtable review
Last week, we told you about our Youth Board’s adventure to Parliament, where twelve brave young people shared their stories with Members of Parliament (MPs) and parliamentary staff at a roundtable.
After sharing some early MP feedback and reflections, we want to tell you more about the impactful trip, and the significant events that followed!
Scroll down to see some of our highlights from the full roundtable review, including photos and quotes from MPs, young people and the PANS PANDAS UK team.
Wise words
These quotes are taken from the stories and testimonies the young people shared, about topics that are important to them.
Awareness
Symptoms
Treatment
Family impact
Photo gallery
These photos show just a few of the MPs who attended the roundtable, pictured alongside some members of the youth board, PANS PANDAS UK representatives and, of course, Glitch.
For more photos and information about the experience, check out our fun photo album!
MP reflections
MPs and parliamentary staff were visibly moved to hear from the young people, leading many to make promises about representation, improving their knowledge, and pledging to stand up for young people at the forthcoming backbench debate.
“The testimonies were really difficult to hear, but very powerful. [It is] shameful that all of the children and young people we heard said they needed to seek treatment and support privately.” – Freddie van Mierlo, MP
The youth board are incredible. I promise to carry their voice forward and push for change! – Lee Pitcher, MP
More MP testimonies can be found in our full roundtable review.
Team reflections
For some Youth Board members, this was their first time in London, first time speaking in public, and first time they had met other people affected by PANS and PANDAS. Battling with long train journeys, ongoing symptoms and an unfamiliar environment, it is all the more impressive how the young people came together and represented the UK PANS PANDAS community with poise and conviction. All the charity team and accompanying parents and carers are so incredibly proud of what these young people achieved:
“They made such an impact. No adult could have conveyed what they did.”
“It was a huge achievement for her to speak so openly and clearly to the MPs. She said she felt ‘seen’.”
“[It was] very cathartic to finally have her voice heard after all these years of being dismissed and disbelieved!”
“Being given a huge opportunity and responsibility has definitely boosted her confidence and passion.”
“They spoke with such honesty and courage about their experiences. Their unity, collaboration and determination to make MPs listen, raise awareness and drive change for other young people and families really shone through. I hope the youth board members are able to recognise just how much courage they showed and how much they achieved today.”
“To witness the power of youth advocacy in action was an experience I will never forget, and to watch the room fall silent as the Youth Board shared their stories was something very special indeed. They should all be incredibly proud of what they have achieved.”
Big numbers
It took such determination and courage to stand up and represent young people affected by PANS and PANDAS.
Please don’t let their actions be in vain.
Use these templates to write to your MP and ask them to join others at the forthcoming backbench debate:
Final thoughts…
Our Youth Board deserve the final say, with these powerful messages to MPs:
