Community survey – your feedback
Earlier this year, we conducted a community-wide survey about the communications you received from PANS PANDAS UK. The survey also included questions about our training, events and our social media presence.
We are so grateful to share that more than one hundred members of our community responded, and we have been busy addressing your comments and feedback. You can find examples of your comments, and our actions, below.
Soon, a much larger survey will be sent out to collect your experiences of healthcare and education. We hope that these answers will inform our efforts to advocate for policy change and improved services across the UK.
Nothing we do would be possible without you, and your support means everything to us. We are determined to ensure the charity works for you, and all members of our community, in the way you need it to.
“I want to say a huge thank you to our wonderful PANS PANDAS UK community. Your feedback is incredibly valuable and helps us make sure our work truly reflects what our supporters need.
If you missed out on this opportunity, don’t worry – there are lots of ways to share your insights, like joining our Community Reference Group or completing our next survey. We hope you’ll take part, as your input will help us continue campaigning for better services and support.”
– Vicky Burford, CEO, PANS PANDAS UK.
Your feedback:
Click to read about the actions we’ve taken to address your feedback.
You told us you were concerned about misinformation and unmoderated peer-to-peer advice on social media.
We have strengthened the rules in our Facebook support group and ensured our moderators are well-trained to respond appropriately. We’ve also published a position statement addressing the sharing of non-evidence-based information online.
You wanted support on complex topics like Fabricated or Induced Illness (FII)
As well as co-producing a FII information guide, we hosted an expert-led webinar which provides clear guidance on how to manage challenging accusations.
Our young community members told us they wanted to be part of the conversation and have their voices heard.
We have appointed an experienced Youth Worker to better understand and support their needs, and we encouraged our Youth Board to host their own webinar, where they discussed their experiences and answered audience questions.
You asked for more consistent communication across social media.
We now post regularly across all our social media platforms and our news page, keeping you informed about what we’re doing and what’s happening in the PANS community.
You asked for more practical information to help navigate life with PANS and PANDAS.
We’ve scheduled a week-long virtual conference featuring expert-led webinars focused on real-life tools and strategies to support everyone affected by PANS or PANDAS.
Further feedback
If you have feedback about PANS PANDAS UK, our services or support resources, please click here or fill out this form:
