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Anti-Vaxx Parents Exist in the UK Too – Here’s What It’s Like to Grow Up with One

Britain’s anti-vaxx movement is not as prolific as the US, but recent stats show that rates of coverage for childhood vaccinations may be falling.
23 January 2020, 9:30am
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Hayley*, 29, was not vaccinated as a child. As a teenager, she had to work out for herself what to do about it. She recalls: “I hadn't really grown up with a clear idea of what vaccines were and why I didn't have them.”

But conversations about vaccines never seemed to lead anywhere: “When I was 19, some friends told me it was bad that I wasn't vaccinated but didn't really tell me why. When I was 20, I stepped on a nail at work and my boss told me to check when my last tetanus shot was. I was like, ‘Never’, and she looked awkward and told me I really should do that.”

Hayley had had a tough upbringing, running away from home and eventually becoming homeless by the age of 20. During this period, she caught whooping cough (also known as pertussis), which lasted for three months because accessing diagnosis and treatment was difficult while she had nowhere to live.

Even once she got better and found somewhere to live, her unvaccinated status left her feeling like an outsider: “The vaccination ‘debate’ was raging and I felt like I was the odd one out. No one really considered there were adults like me around. I was angry at the anti-vaxxers but also felt super alienated by those who were pro-vaccine but had grown up vaccinated, and had never known anyone unvaccinated.”

Among friends who didn’t know about Hayley’s upbringing, banter would hit a nerve: “[They were] making jokes like, ‘What do jokes about anti-vaxx kids and actual anti-vaxx kids have in common? Neither of them get old’.”

Luckily, parents like Hayley’s are rare in the UK: only 2 percent report refusing vaccination. But last September, stats showed that rates of coverage for all childhood vaccinations in England fell for the fifth year running. Although it’s hard to say what lies behind falling coverage, it coincides with a new wave of interest in “natural” health – like “eating yourself better”, natural contraception and giving birth without medical interventions. The “natural immunity” parenting group Arnica has 37,998 members on Facebook.

Professor Heidi Larson, director of the Vaccine Confidence Project and author of Stuck: How Vaccine Rumors Start – and Why They Don't Go Away, says that the anti-vaccination trend has resonated in both the UK and US.

“There is a generation of young mothers who want more choices, opting for more holistic, natural health,” she says, but adds that positive intention can have harmful consequences: “There's a lot of great things about holistic and natural health, and I'm not an anti-natural health person, but there's a limit.”

Hayley’s mum works in holistic medicine, which Hayley thinks may explain why she took against vaccination. “I was born before the Wakefield papers so my mum wasn't influenced by them,” she says, “although I think she might have been drawn into believing some of it once it happened and became a popular theory.”

She continues: “I tried to ask her why I wasn't vaccinated once but the answer was vague and didn't make sense. She told me I was protected by something called ‘herd immunity’, which isn't how it works. We all need to be vaccinated to protect those with immune system issues who literally cannot be vaccinated via herd immunity. By not vaccinating me and my sister, she actually made holes in herd immunity and made people less protected. I didn't even bother explaining that to her, it just felt overwhelming and stupid. I told myself it wasn't worth bringing it up again. She clearly doesn't know what she's talking about.”

Commentators have pointed fingers at social media for the falling rates of childhood vaccination coverage – perhaps rightly so. A report by the Royal Society for Public Health (RSPH), “Moving The Needle”, last year found two in five parents with children under 18 were exposed to negative messages about vaccinations online “often or sometimes” (rising to one in two parents with under-fives).

Although vaccine confidence is relatively high in the UK, RSPH authors pointed out that exposure to negative messages “may influence attitudes over time”, regardless of your stance. Repetition can be mistaken for accuracy (the “iIllusory truth” effect) so even when people know a message is untrue, “if it is repeated enough times they will begin to believe it”.

In the UK, decisions over vaccines lie with parents. In the US, vaccinations are mandated, a ruling over adults’ civil rights as much as children’s wellbeing.

Dr Helen Bedford, professor of children’s health at University College London, says mandates have galvanised a movement in the US. “It is a very different situation: they have a well-organised, well-financed anti-vaccine movement headed by some very notable almost-‘celebrities’.”

She questions whether there is even an anti-vaxx movement in the UK: “You talk about an anti-vaccine ‘community’ – I don't believe there really is one because people that are opposed to vaccination come from various positions and have different reasons for not having their children vaccinated.”

Parents have fewer and fewer chances to discuss vaccines with NHS professionals. For example, numbers of health visitors in England (who don’t do immunisations, but are usually new parents’ main contact with the NHS) fell by about a third in the last four years. If your health visitor’s nowhere to be found, you can forget having a cosy chat with your GP about your child's vaccinations: last summer, the average wait for appointments hit the two week-mark for the first time ever. The future looks bleaker, with a third of practice nurses, who lead most immunisation programmes at GP surgeries, being over 55 – i.e., poised to retire.

Last September Matt Hancock, Secretary for Health, suggested the UK could introduce mandates: “There’s a very strong argument for having compulsory vaccinations for children,” he told a media outlet, “and I think the public would back us.” Earlier this month, a spokesperson from the Department for Health said they were still “considering a wide range of options”.

Dr David Elliman, a consultant at Great Ormond Street Hospital, points out that recent measles cases have often been in older children, adolescents or adults, “To be effective, mandation would have to cover this older age group, which is not feasible,” he tells me.

Besides, he explains, there’s scant evidence that poor measles coverage is down to parents of young children refusing to vaccinate. Hancock’s “kneejerk” comments ignore systemic problems in the NHS such as understaffed clinics and vaccine shortages: “Until issues of access are addressed, it is not appropriate to even think about mandation.”

In six reported cases in UK family courts over whether a child should have a vaccine, judges have always found in favour of vaccinating. In a 2018 case “Re: B”, the judge noted: “In the absence of new peer-reviewed research evidence indicating significant concern for the efficacy and/or safety of one of those vaccines, it is difficult to see how a challenge based on efficacy or safety would be likely to succeed.”

Muctar Johal, solicitor for the child in Re: B, recalls: “The judge made the point, and left it hanging for legislators and policymakers, that... there was not a single authority that had found in favour of not vaccinating.”

There have been no reported cases of unvaccinated children suing parents (a three-year time limit for medical negligence cases poses a major challenge) but if someone did find a way, it would almost certainly change the way anti-vaxxers were dealt with in the courts – and it might change the Department for Health’s approach too.

Hayley says it took time for her to “deprogramme” herself from some of her mum's beliefs. But she eventually got her jabs aged 21 after an ex-partner asked her to before meeting their younger siblings. "I was fresh off running away from home and being homeless for a year,” she says. “I had only just stopped heavy drinking, drug use and self-harm. I didn't give a shit about myself. But knowing I could hurt little babies made me want to die. So I did it. Got them all. It was the first time someone really explained to me what vaccines do and why they're important. It was most impactful to hear how it could harm others.”

Once she’d decided to get the vaccines, she says, the rest was a piece of cake: “The nurse was really sweet and didn't treat me like I was a leper or an idiot. I was starting to realise there was stuff really wrong with my upbringing anyway, so it kinda felt like an opportunity to be rebellious.”

Hayley now runs a support group on Facebook for other adults who experienced childhood neglect. She jokes: “I used to say that the only way I could have rebelled growing up was to become a conservative Christian, but I ended up doing it by becoming scientifically informed.”

*Name has been changed.