The charity are due to meet Health Minister Mike Nesbitt later this year
For many people who say they were injured or bereaved as a result of the Covid-19 vaccine, the end of lockdowns did not mark a return to normal life. Instead, it ushered in years of ongoing health problems, financial uncertainty and what they describe as a profound sense of isolation, often compounded by scepticism from both the public and parts of the medical system.
UKCV Family, a UK-wide charity, was formed to support people who believe they have suffered serious adverse reactions to the Covid-19 vaccines, as well as families who say they have lost loved ones. The group operates as both a peer support network and an advocacy organisation, campaigning for changes to medical pathways and financial compensation schemes.
While much of the public conversation around Covid vaccination has been polarised, UKCV Family positions itself firmly as a support organisation rather than a campaigning group against vaccines. Its trustees and members say their focus is on care, recognition and reform, particularly for those who feel they have fallen through the cracks of existing systems. The charity now has close to 3,000 members across the UK, including Northern Ireland.
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Brian Howard, a trustee of UKCV Family, said the organisation was formed by people who shared similar experiences and found each other online during the pandemic.
“Everyone involved in UKCV Family has been injured or bereaved as a result of the Covid-19 vaccine. We are the same as the community that we support. We represent them because we’ve been through the same experiences they have been through,” he said.
“We initially found each other on international support forums, mainly based in America, and then we realised there were quite a few of us in the UK who needed something separate, particularly to deal with our own issues with the NHS and other UK systems.
“In November 2021, our founder, Charlotte Crichton, formed UKCV Family. It started with around 70 or 80 people and was meant to be a support forum where we could talk about injuries, symptoms, doctors, and even which clinicians recognised what we were going through.”
Brian said it quickly became clear that informal support alone was not enough, prompting the group to expand into advocacy and political engagement.
“By March 2022, we realised we needed to step this up and push for change,” he said. “We started writing to media outlets, contacting doctors and scientists, and launching an MP campaign.
“We reached out to Members of Parliament to ask them to support our members with things like PIP claims, chasing referrals or any direct help they could provide. About a third of MPs initially responded and tried to help, which made a real difference for people.
“Since then, we’ve had several meetings in Westminster and our community has grown to nearly 3,000 members across England, Scotland, Wales and Northern Ireland. We want to make sure people who are suffering alone know there is a network out there.”
Howard said the emotional toll on members has been severe, describing vaccine injury as an experience that can leave people isolated from friends, family and support services.
“It can be incredibly isolating. You’re dealing with the injury itself, but also struggles with medical support, financial support and emotional support,” he said.
“Some people find that even family and friends don’t acknowledge what they’re going through. That’s why community is so important. We’ve kept each other going over the last few years.
“We run regular Zoom socials because some of our members are housebound or bedridden. We have qualified medical professionals giving talks, alternative practitioners offering meditation and sound baths, and in-person meet-ups for those who can attend. There’s a real community spirit, and honestly, we’ve kept each other alive.”
He pointed to internal polling, which suggested the mental health impact has been acute.
“A poll of our members showed that around 78 per cent had considered suicide at some stage as a result of their injury,” he said. “Knowing you’re not dealing with this alone is absolutely essential.”
Alongside emotional support, the charity is pushing for reform in medical recognition, mental health provision and financial compensation.
“On the medical side, one of the biggest problems is that GPs don’t have a pathway. There are no NICE guidelines for vaccine injury, so even when a GP recognises something is wrong, they don’t know where to send the patient,” Brian added.
“We want to see dedicated clinics, investment in research and clear guidance. On the emotional side, we want funding for helplines, better awareness in mental health services and a national campaign so people don’t feel alone.
“Financially, the Vaccine Damage Payment Scheme has been incredibly harsh. About 98 per cent of our members have been rejected, even when their medical records acknowledge an adverse reaction.”
He described cases where people were accepted as having suffered vaccine injury but still failed to qualify for compensation.
“Even if causation is accepted, you have to reach a 60 per cent disability threshold,” he said. “We had a member who was accepted on causation but assessed at 58 per cent and therefore received nothing. Sadly, it became too much for him and he took his own life.
“His daughter is now part of our bereaved group and is running the London Marathon for us in his memory. There’s a huge amount for families to deal with.”
Brian said the charity has also faced hostility from both ends of the vaccination debate.
“We had pushback from both sides. Some very pro-vaccination people accused members of spreading misinformation or lying about their lived experience. At the same time, others told people they deserved it for taking the vaccine.
“Vaccine-injured people are stuck in the middle, craving empathy and support, and instead getting attacked from every angle. Our focus has always been making sure our members get the support they deserve.”
UKCV Family is now planning to meet the Health Minister in Northern Ireland later this year and is encouraging anyone locally who believes they have been affected to come forward.
“You can find us at ukcvfamily.org, or through our Facebook support groups. We have separate groups for injured and bereaved members, and a team who can respond via email,” he added.
“Wherever you are, there will be someone who’s been through a similar experience. You don’t have to feel alone anymore.”
The charity also recently secured National Lottery funding to support mental health projects, alongside its ongoing advocacy work.
“We know this is long-term,” Brian added. “We’re not naïve about that. But the most important thing is making sure people know they’re not alone and that someone is fighting their corner.”
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