The latest UKCVFamily news, updates, guest articles and more!
Our second advert is launched today, featuring younger members of the UKCVFamily support forum. You can read more about Megan (aged 27), Faith (aged 23), Bryn (aged 28) and Chloe (aged 31), on our campaign page HERE
Help UKCVFamily raise awareness, and find others affected by sharing our ads!
UKCVFamily's public charity page 'Friend's of UK CV Family' has also had the petition removed several times.
Members of the public have sent screenshots, and messages to us, showing that the petition has been classed as spam and removed. Alison appealed the decision made by Meta in September, but Meta have failed to respond to her appeal, and have continued to censor posts containing it.
Th petition, set up on the official Senedd Cymru Welsh Parliament platform is calling on the Welsh government to consider an NHS care pathway for those adversely affected by Covid-19 vaccination. Anyone can sign, whether a Welsh resident or not, so please help UKCVFamily, and Alison overcome this censorship.
Alison's notice of removal of the official petition
The official Senedd petition website states that "Petitioning is one of the most direct ways to suggest change"
Petitions can lead to; a change in policy or a different way of delivering services, propose or influence a new law, prompt a select committee to hold an inquiry, lead to a debate.
Petitioning is an important tool and freedom of speech is an important individual liberty.
UKCVFamily, and those we support have been censored continually since 2021.
Please help us by sharing this petition!
A little while back a post came up on the UKCVFamily support group - the Trustees were starting an advertising campaign and needed volunteers.
While my inner critic loves to tell me, I have a great face for radio, I knew in my heart that I wanted to do this. I felt so strongly about it that I’d even say I needed to do this.
As many know, life with any chronic illness is unpredictable and being vaccine injured is no different. Over the spring and summer, I saw a rapid decline in my health that meant I was too weak (physically and mentally) to be certain I could manage my physical and mental wellbeing through this process. But then came the up, as it always does eventually, and the chance to take part was there again. Could my stars really align so fluidly?
My experience from volunteering for UKCVFamily, along with my own therapy, meant that I knew the tools I needed should I stumble a little during the process of filming and releasing the ads. As yet, I have not needed them, and I believe it that’s because the process was handled with such care and compassion that it wasn’t at all triggering.
On September 18th I had two very special guests arrive at my house with bags and cases galore. My first impression, aside from marvelling at Claire’s height, was that in front of me stood a fellow vaccine injured person, here, in the flesh, to see and interview me! Along with Finn, the videographer and all-round wonderful human. Naturally meeting another injured person made me well up a little, then I remembered that I was still to invite them through the door.
I’d prepared a little lunch (thank you Tracy for the inspiration here) and Claire ran through what to expect over the next hour or so. Naturally this led to general discussions about our health and experiences over the last few years, but Claire asked, what I felt was, a very compassionate question.
“Is there anything that you aren’t happy discussing, or anything you don’t want mentioned during this interview?”
How thoughtful is that?!
Once Finn had set up all his equipment, and a very impressive set up it was, we were ready to roll. Unfortunately, this wasn’t quite so simple.
Those that know me will know about my darling dog, Bella. She has dementia and as a result is keen to have everyone hear her impressive falsetto. A marvel to behold, except for when filming with professional equipment and very sensitive microphones.
Nevertheless, we soldiered on and did our best to get through the first part of the interview without Bella’s input. The interview covered the state of my health, my life prior to vaccine injury and the experiences from the last 3 years, including finding UKCVFamily.
These discussions are a lot and can be extremely triggering. Claire asked so many insightful and important questions, but she did so in such a gentle manner, that made reliving my trauma with her so comfortable. Because that’s what it is, it’s trauma. Not just our injuries, but everything that I and the rest of the community have been through is traumatic.
But in that moment, with two people I had just met, telling my story felt no more triggering than reading a kids bedtime story. Of course, there was nothing soothing about this story and I wouldn’t recommend reading it to a child should I ever write a book on it.
Disappointingly we’d reached the end of the interview. We did have to do many retakes without the barking, but we’d done it. I say disappointingly because I really didn’t want them to leave. Other injured will understand that when you meet others like you it’s so good for the soul, you really do feel at home immediately with someone you may have never met before. I once wrote a blog on this and the only title I could see for it was ‘Home among strangers’.
In the interview Claire asked me about UKCVFamily and why it was important to me, but I think if you’ve read this then you’ll understand why it’s important. I want people to really read this and know that the care and compassion I was handled with here is exactly how all injured and bereaved are looked after at UKCVfamily.
Claire and her team went away with the footage from all the interviews they’d held and put together two amazing adverts. ‘Amazing’ doesn’t do them justice at all; they’re impactful, empathetic, nurturing, informative and more.
Claire has been in contact throughout to seek consent for any writing and content she’s put together based on my interview. Not to mention Charlet, who has been working incredibly hard to promote and share the adverts and all the additional content she’s created. I’ve felt in control during every step of this process and aside from the smallest amount of anxiety (which has since turned to excitement) ahead of the ad release there has been no ‘negative’ emotions or energy.
Again, this is entirely down to how this process was handled and how I was handled. I sincerely hope that my radio face can help show this to those still suffering alone, to show them just what healing powers this community at UKCVFamily has.
I’ll never be alone again and that is one of the greatest feelings I have ever experienced (now I’m crying again!).
If you are interested, below I will put the links to my two favourite blog posts, each of which are about my finding UKCVFamily. These are on my personal blog, Letters From My Bed. If this didn’t show you why it is so important to talk about vaccine injury and bereavement, then I hope these do.