CHIVA CEO Amanda Ely Explains How Fraser Guidelines Can Help Children With HIV

The Fraser guidelines can indicate if a child is fully competent to make their own decisions, including consenting to HIV tests if they may be at risk, explained Amanda Ely, CEO of the Children’s HIV Association (CHIVA) of the United Kingdom and Ireland.


Can you tell us about Gillick competency and Fraser guidelines, and how they play into a young child being tested for HIV?

It’s about competency. It’s about assessing whether a child is competent to make their own decisions in relation to anything to do with their life, actually, not just their health care. It originally came from a case that was around access to contraception, but now it’s been applied very broadly as a way in which we decide when the children can make their own decisions about important things in their life. So even things like in situations like divorce, who they want to live with, those sorts of scenarios, it would be applied to.

In relation to HIV, it would be critical with testing, but that would only come up if you were testing an older child. So that would only come up where, for example, say a parent got diagnosed and they had an 8, 9, 10-year-old, something like that, which you would say we need to test the child now to check if they have HIV themselves. And a decision would need to be made about what you tell that child because they’ll reach an age where you say this child is fully competent. Fraser guidelines indicate that they’re fully competent to make their own decisions and therefore, if they are, they need to be told why they’re being tested. We can’t simply take blood from a child without their consent, and if they’re providing their consent, they need the full information as to why they’re providing it. So it can be quite tricky because, again, you might have a situation where, if the mother’s just been told that she’s got HIV, that’s enough of a big piece of information to have to digest and process, and then in the next conversation, we also need to test your child. And then the other conversation is, we need to tell your child why they’re testing them. It’s very difficult, but you can’t take blood from a child that is competent to make their own decisions without giving them that information because they have to consent, they have to agree. So you have to explain why you’re doing it. That’s something to navigate.

I think the other area where it comes up—and it’s very relevant—is this issue of a child being told about their own HIV status. Because if a parent, for their own reasons and experiences, is still saying by the [child’s] age of 13, “I don’t want my child to know,” then the health care professionals are going to have a duty towards that child as their patient in line with their levels of competency to tell them what their health condition is, regardless of whether the mother consents or not. That’s where Fraser guidelines would come in because they would say, if we’ve assessed that this child is competent and they can understand this information, they have sufficient maturity to understand it, then they have the right to that information. If that were going to go against the parental wishes in that situation, then they would go to court to get the authority to do that, without the parent’s permission. Obviously, people would be avoiding that at all costs; nobody would want to put a family through that sort of process, but it has happened. It has happened when families have refused to give their permission and, unfortunately, they have had to go to court to get an order to enforce it based around that principle of the child’s right to know.

Do they prevent clinicians from being punished if they go against parents’ wishes?

Yeah, they wouldn’t just make that decision without the support of a court order, because a parent could rightly say that you’ve gone against my wishes. But the issue the courts have to then agree on is, “Whose wishes are we attending to here?” And clearly, when you’ve got a competent child who has the capacity to understand this information, the court—because of our legislation around how we work with children—we’ve got an act called the Children’s Act, which basically requires us to make the child’s needs our paramount concern.

That’s where the Fraser guidelines come in. So we’re saying, if the child’s needs are our paramount concern, regardless of what everyone else thinks, we have to focus on the child needs. I wish it was as smooth as that. I wish it was like, we assess their competence and once they’re competent, they have a right to know and they’re told. I wish that’s how it worked. Unfortunately, it doesn’t always work like that. We used to very frequently come across 15-year-olds, 16-year-olds who didn’t know about their HIV and it was so utterly flabbergasting, really. Now it’s much less. Occasionally—very, very occasionally—that would happen, but you could still very, very often find a 12-year-old who doesn’t know. I mean, these are 12-year-olds who are able to go on Google and Google the name of their medicine in 10 seconds, find out what they’ve got. It’s very problematic, because it means they’ve just probably worked out—I will say a lot of the time—that they’ve not had that permission to be in a space where they can ask questions and talk about it. It must be very frightening to have worked this out and no one’s actually talking to you about it.

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