Our Youth Board went to Parliament
Our Youth Board members travelled to Westminster to call for change at a Parliament roundtable!
On Wednesday 15th April, twelve members of our incredible Youth Board delivered an amazing presentation to a room full of Members of Parliament (MPs), before hosting a drop-in session and answering questions about their experiences of PANS and PANDAS.
“We all united as a family” – A Youth Board member
This unique opportunity gave MPs the chance to hear about PANS and PANDAS from the real experts; young people who live with, or are closely affected by, the conditions.
Supported by parents and PANS PANDAS UK team members, these brave young people, aged between 9 and 22, led the show.
“They shared their powerful stories with poignant honesty, driving home the reality of living with under-recognised and under-supported conditions.” – Katy Hindson, our Health Lead
The room was completely silent as the young people spoke candidly about the impacts and barriers to receiving care and support, with many MPs visibly moved by what they heard.
“It is our hope that hearing such impactful stories will make the MPs in the audience really consider how they could improve the lives of young people affected by PANS, PANDAS and other poorly recognised conditions. These MPs have real power to improve support and awareness, particularly by influencing legislation and policy. We anticipate that hearing from our incredible Youth Board has provided the motivation for these MPs to stand up and speak up for PANS and PANDAS at the next debate.”
Vicky Burford, our CEO
What did the MPs think?
Early feedback from the event demonstrates the powerful impact that the Youth Board’s words had, with many MPs pledging to join the PANS PANDAS APPG and speak at the forthcoming back bench debate:
“The testimonies were really difficult to hear, but very powerful. Shameful that all of the children and young people we heard said they needed to seek treatment and support privately.”
Freddie van Mierlo, MP for Henley
“Hearing [the young people’s] experiences first hand was incredibly powerful. Each of them spoke with such clarity and courage about deeply personal challenges, and their willingness to do so was truly admirable.”
Wendy Chamberlain, MP for North East Fife
Who attended the roundtable?
Thank you to our community members for inviting your MPs to take the time to listen to our Youth Board. Because of your amazing efforts, 13 MPs took part in this important day and many more who were unable to attend sent members of their teams. We are told that this is more than double the number usually joining such events in Parliament!
If your MP wasn’t able to make it today, or you haven’t reached out to them yet, it’s not too late. Please help us to continue the incredible work of our Youth Board by making your MP aware of the next powerful opportunity for change; speaking up for all young people affected by PANS and PANDAS at the backbench debate.
What was talked about?
After sharing their powerful stories, the Youth Board held a Q&A and answered questions from the MPs. Unfortunately, recording is not permitted in Parliamentary committee rooms, but we are busy putting together a full report which will be shared with everyone who attended, and the wider community, soon. To keep the momentum going and inspire more MPs to attend the upcoming backbench debate, we will also share this report with MPs who were unable to attend the roundtable.
This report will include extracts from the powerful stories of lived experience that our youth board members shared, as well as feedback from the MPs in attendance. We are also asking all the young people to share their experiences of the day, and what the event meant to them. Keep an eye on our latest news, our social media, or our newsletter, to learn more.
Who else went to Parliament?
The youth board were joined by Professor Rajat Gupta, MP Wendy Chamberlain, Clinical Psychologist and PANS PANDAS UK trustee Vicky Queralt and, of course, their very own mascot: Glitch!
all the way from Warwick!
What else did the Youth Board get up to?
Wendy Chamberlain, Scottish Liberal Democrat MP for North East Fife, supporter of PANS PANDAS UK and our host for the day, organised for the group to have an exclusive tour of Parliament, watching the Speaker’s Procession and learning about how everything in Parliament works.
The PANS PANDAS UK Youth Board comprises young people from all around the country. They usually work together virtually, so this was also the first time many members had met each other in person:
“I really enjoyed the experience and meeting people with similar experiences”. – A Youth Board member
What’s next?
Details about the backbench debate will be shared as soon as we have confirmation from Westminster. We are confident that this will take place shortly after Parliament sits again on the 13th of May. Check back on this page, or keep an eye on our social media, for this information.
