Anna Millington, Polly Radcliffe, and Emma Smith discuss involving people with lived and living experience in research, and how the moral discourse around ‘recovery’ can have an impact on mothers who may be using drugs and/or have had children taken into care.
The only way you can go into services as a mother is by having one persona: ‘I was a victim. Poor me. I took drugs because of A, B, C, and D and desperately wanna get off them. Help me.’
The Stepping Stones study is a longitudinal qualitative study funded by the National Institute of Health Research (NIHR), which has evaluated different care models and pathways for pregnant women who use or are in treatment for using drugs – from early pregnancy to one year after the birth of their baby. This study brought to light some of the complexities in patient and public involvement (PPI) and co-production when working with people (and more particularly with mothers) who use drugs or have a history of drug use.
Polly Radcliffe (Principal Investigator of Stepping Stones) and Emma Smith (researcher with Stepping Stones) spoke with Anna Millington (lead of Harm Reduction Mother 2 Mother) about language and stigma in the context of drug use and motherhood.
Polly: Can you describe the work you do?
Anna: I give out harm reduction equipment to mothers I’m in touch with. They’re all using, most of them not for that long. Most of them don’t take it themselves and are injected by their partner. So, I give it out to them and sometimes I help them with other stuff. But it’s not a service, it’s about building a bridge. Previously I would pass them on to a provider but at the moment there is no one to pass them on to. The only way you can go into services as a mother is by having one persona: ‘I was a victim. Poor me. I took drugs because of A, B, C, and D and desperately wanna get off them. Help me.’ There’s a hierarchy between women. It’s a vicious world.
Emma: Can you describe that hierarchy?
Anna: There’s a massive hierarchy depending on what drug you took. You know, it’s very different if you’re injecting heroin or crack, compared to somebody who snorted cocaine, or who is taking benzos. Did you keep your child, or did you have your child taken? Do you know what I mean? Like that is massive. There’s hierarchy of like – are you getting hit by your partner? Are you involved with sex work? I think, when you’ve got no power, you try and grab it anyway you can and this impacts how you behave amongst your peers.
Polly: Researchers are encouraged to consult and involve people with lived experience throughout our studies but there isn’t very much discussion of the complexities of who we involve or the impact on them of being involved. Do you think that people with lived and living experience judge each other?
Anna: Definitely. If people are not using anymore – or they say they’re not using anymore, because even if they say they’re not using anymore doesn’t mean they’re not using anymore – there’s a massive moral superiority there.
I’ll never understand why we’re asking people who don’t take drugs what they needed when they were taking them.
Polly: So, in terms of co-production work and involving mothers with lived and living experience of using drugs in research, should we be aware of that distinction between lived (past) and the living (current) experience, and not combining people with lived with people with living experience?
Anna: In co-production groups, it doesn’t work to combine people with lived and living experience. When you’ve stopped using, you look at things in hindsight very differently. You don’t know. So, when people are trying to tell you, ‘This is what I need’. You know, nobody who is now not taking drugs can tell you that what people who use drugs need because you’re not thinking with the same mindset. Do you know what I mean? I’ll never understand why we’re asking people who don’t take drugs what they needed when they were taking them.
Polly: And as someone with lived/living experience yourself, have you felt that your voice has been heard? I know you worked on the Hidden Harm report with the Advisory Council on the Misuse of Drugs (ACMD) in 2022/2023.
Anna: I managed to get things changed in the Hidden Harm report. Like before, we were called ‘drug using mothers’. You are not calling me that – one is something I do, and the other is something I am. So, we got it changed to ‘mothers who use drugs’. And you can’t talk about harm to children if you can’t talk about the harm that happens to them when they go into social care. So, that’s when they put ‘family-friendly treatment’ into the drugs strategy.
Polly: So, in that case your experience helped to turn something from being stigmatising into something more sensitive and more accurate. How have you found working in groups where you might be one of the only people with lived experience?
Anna: Yeah. Often, you’re the only person there with a group of professionals. I would probably find that difficult now, let alone 20 years ago when I wasn’t as confident.
Emma: For people organising co-production activities, it sounds like it’s important beforehand to have an idea of what people’s experiences are. Is there anything else that we could do to help people feel safe in those environments and in those meetings?
Anna: I would say maybe like set the rules out in the beginning or before while you’re inviting them. And sometimes it’s better if they don’t disclose their experiences.
Emma: And in terms of language, is there anything that it’s important to avoid or that that we should try and use when doing co-production?
Anna: I don’t like ‘clean’ or ‘addict’. Like the word ‘clean’ – we need to think about how someone who is using drugs might feel hearing it. And the reason I don’t like ‘addict’, it’s just because of that whole persona attached to it.
Polly: So, it’s important to consider whether or not you should be combining mothers with lived and living experience and maybe it’s also worth saying something like, ‘Everyone here has been a mum, everyone has, you know, various sorts of experiences of using drugs. And we’re gonna try not to use stigmatising language’.
Anna: Also, I don’t really think group environments are always the best way to talk about this kind of thing. There’s no way to keep our information confidential.
Stigma is not what you think it is – what the professional thinks it is – you know what I mean? Stigma is what I hear it as.
Polly: That’s a really interesting point – that group environments might make it difficult to talk about certain topics. So maybe we should move away from group scenarios with people who don’t already know each other and maybe just do one-to-ones, or with existing groups of women that all know each other? And we also need to think about the impact on you of being consulted and providing support, because it does bring things up, doesn’t it?
Anna: It does, yeah. This is the thing I find bizarre. We tell people in recovery to stay away from users because it’s a trigger. But then we’re forcing everybody in, as if the only skills they’ve got is to be a keyworker or a peer mentor and that can be really triggering. I mean it’s hard for me.
Emma: Yes, I agree. Is there anything else to keep in mind when doing co-production work that we haven’t discussed?
Anna: If I correct people on language, a professional will always come back and still use that language. I feel like sometimes saying, ‘It’s not about what you think is stigma’. Because stigma is not what you think it is – what the professional thinks it is – you know what I mean? Stigma is what I hear it as. Like sometimes professionals insist that they’re gonna tell me or tell other people what stigma is and what stigma isn’t and what words we should feel stigma about. And I keep saying, ‘It’s not about what you say, but about what I hear’. And this whole thing about ‘trauma-informed care’. How can you have trauma-informed care if you’re not listening to what I’m telling you is traumatic? And I think this sector in particular just likes to throw around words.
Polly: And I guess the takeaway for me about consulting groups of people with lived and living experience for research studies is that we need to give people choices about whether they get involved individually or in groups and the sorts of groups they take part in.
Emma: Absolutely. And it’s important that people don’t feel pressured to disclose anything. And that’s one of my main takeaways as well, that PPI and co-production can be done in a tokenistic way and this isn’t just bad practice, but unsafe.
Anna: Unless we make it safe. Like how can you say these women are vulnerable and then put them in an unsafe place?
Polly: Thank you for talking to us, Anna.
Anna Millington is a self-described user, mother, and criminal. She founded Harm Reduction Mother 2 Mother, which provides anti-stigma material, training, and harm reduction gift kits to mothers who are not accessing services, and has designed women-specific harm reduction supplies in partnership with Exchange Supplies.
Polly Radcliffe is a Senior Research Fellow in the Addictions department, IoPPN, King’s College London. She is co-investigator on the NIHR-funded ADVANCE-D in probation trial, is currently co-leading the ESRC-funded evaluation of Simon Community Scotland harm reduction services, and is a co-investigator on two NIHR-funded Invention for Innovation studies.
Emma Smith is a Research Associate at King’s College London in the Addictions department. She recently finished working as a researcher on the Stepping Stones study and is currently working as a researcher on the ADVANCE-D trial.
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