‘CAMHS around the campfire’ – Voice-hearing in adolesence

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Slides from the session

About the session

Discussion on Open Access CAMH paper by Dr. Sarah Parry and Dr. Filippo Varese ‘Whispers, echoes, friends and fears: forms and functions of voice‐hearing in adolescence’. doi.org/10.1111/camh.12403 First published: 11 July 2020

A panel, comprising Dr. Sarah Parry, an independent expert Dr. Emmanuelle Peters, Reader of Clinical Psychology, KCL, young person with experience Rebecca Burns, and Douglas Badenoch, Information Scientist, discussed the research and its implications. This discussion was be facilitated by Andre Tomlin (@Mental_Elf).

Resources

• Dr. Sarah Parry & Dr. Filippo Varese 10 minute video abstract
• The Bridge research digest
• 30 min podcast with Dr. Sarah Parry
• The Mental Elf blog on the paper

The following are further reading and event suggestions from Dr. Sarah Parry

1. Corstens D, Longden E. The origins of voices: links between life history and voice hearing in a survey of 100 cases. Psychosis. 2013 Oct 1;5(3):270–85.
2. Longden E, Madill A, Waterman MG. Dissociation, trauma, and the role of lived experience: Toward a new conceptualization of voice hearing. Psychol Bull. 2012;138(1):28–76.
3. Maijer K, Hayward M, Fernyhough C, Calkins ME, Debbané M, Jardri R, et al. Hallucinations in Children and Adolescents: An Updated Review and Practical Recommendations for Clinicians. Schizophr Bull. 2019 Feb 1;45(Supplement_1):S5–23.
4. 8. Parry S, Loren E, Varese F. Young people’s narratives of hearing voices: Systemic influences and conceptual challenges. Clin Psychol Psychother. 2020 Dec 15;cpp.2532.
5. Gin K, Banerjea P, Abbott C, Browning S, Bracegirdle K, Corrigall R, et al. Childhood unusual experiences in community Child and Adolescent Mental Health Services in South East London: Prevalence and impact. Schizophr Res. 2018 May;195:93–6.
6. Jolley S, Kuipers E, Stewart C, Browning S, Bracegirdle K, Basit N, et al. The Coping with Unusual Experiences for Children Study (CUES): A pilot randomized controlled evaluation of the acceptability and potential clinical utility of a cognitive behavioural intervention package for young people aged 8-14 years with unusual exper. Br J Clin Psychol. 2018 Sep;57(3):328–50.
7. Kelleher I, Cannon M. Psychotic-like experiences in the general population: characterizing a high-risk group for psychosis. Psychol Med. 2011;41(1):1–6.

Transcript

Andre Tomlin – Hi, everyone. A real pleasure to be here again for a CAMHS Campfire session. Welcome, everyone. Come up to the campfire. Warm your cockles. It’s a cold night here in Bristol. I hope you have fun for the next hour or so. We’ve got a great panel and we’ve got a really great topic. We’re talking about hearing voices in young people. While Matt gets the slides ready I’ve just got a little bit of an introduction to give.

I’m Andre from the Mental Elf. I’m an information scientist. I’ve worked in mental health research for the last 20 years. I’m not a clinician, so I’ve got a very broad knowledge, and hearing voices is something that personally really interests me. It’s something that I think is really poorly understood and there’s very little research on it. And I guess the experience is very different for different people. So we’ve got a woman with lived experience, Rebecca Burns, who here this evening. She’s a member of the Mc Pin Foundation Young People’s Network. Really looking forward to hearing her experiences and her views and her perspective on this issue. We’ve got a clinician here today, Dr. Emmanuelle Peters. She’s a clinical academic psychologist at the Institute of Psychiatry. Hi Emmanuelle she’s also the clinical director of PICuP, which is a brilliant acronym, the Psychological Interventions Clinic for Outpatients with Psychosis at the Maudsley. We’ve got a research perspective. We’ve got Doctor Sarah Parry here this evening… Hi, Sarah… who is the lead author on the paper that we’re going to talk about. She’s a clinical psychologist and a researcher. She works in the northwest and was the principal research lead for the Young Voices study, co-authored this paper that we’re going to look at this evening, with Filippo Varese. And we’ve also got an Elf perspective, my colleague Douglas, Douglas Badenoch, who’s here this evening. Hi, Douglas. He’s an information scientist like me and he co-founded the National Elf Service with me.

So we’re going to spend the next hour or so… Do you want to put up the slides, Matt, and give us the agenda… really, I guess, talking through this paper that was published a few weeks ago, Voice Hearing in Adolescents, looking at the question that Sarah tried to answer with this research, thinking about this evidence; is it valid? What are the findings? And is it important? Is there anything we can do with it? Can we actually use it in some way in our practise, for other research, in our policy? So we’re going to have a chat, but we’re also going to do some critical appraisal, so a combination of looking at the research and thinking about the methodology and then talking about the relevance of this.

So just a bit of background, we don’t know much about hearing voices. We know a little bit about the lifetime prevalence. A relatively recent review published in Holland shows us that children and adolescents have a prevalence of around about 12 percent lifetime prevalence of voice hearing, and that’s a lot more than in adults. So they differ quite significantly from adults and older people. The prevalence is about five percent. So the experience of hearing voices is really common in young people. It’s as common as having asthma. But we know remarkably little about it, so we’re going to try and change that this evening a little. We’re going to make a start. So I wanted to start, Rebecca, by asking you… It’s always great to have a lived experience perspective… first of all, to just briefly introduce yourself, tell us a bit about your perspective and, yes, why are you interested in coming to this session tonight?

Rebecca – Hey, I’m hoping everyone can hear me. Zoom is not normally my friend [laughter]. So I’m Rebecca, as said. I’m from the McPin Young People’s Network and I have heard voices for I think it’s coming up for nine years now, and I’ve been under clinical services for six years and engaged with various peer support groups. I’ve helped mentor some younger people younger than me, and that comes across with a wide range of voices. And what particularly interested me… I think the topic in general is brilliant because as you said it’s highly under researched in under 18s, but obviously young people’s perceptions of themselves and how they relate to voices doesn’t start forming at 18. It’s not a blank void and then you hit 18. Cultural forces can have a huge impact on how people view themselves. So to give you some examples from other people’s lived experience that have given me permission to share, I’ve had people often underestimate how common it is, as you said with the statistics. I don’t think I’ve had a single group or a single person I’ve interacted with who hasn’t at some point gone, I thought it was just me. That doesn’t necessarily have to be a negative thing or a loneliness thing, as we’ll see with some of the research, but it is that, and also it does affect how voices are viewed positively or negatively.

I think an interesting example would come from my experience. I developed them at 15. I did not seek treatment until I was 18 and asked for mental health support based on the belief that I was dangerous. Now, if anybody’s met me, I apologise to ants for standing on them and teddy bears for sitting on them and walls for talking into them. I am not threatening. That didn’t come from my realistic appraisal of myself or my abilities; that came from cultural factors. And I think more data in voices in young people would help with stigma, how people view themselves and how they relate to the world around them. And there are some really brilliant things about this particular study that we were going to talk about later, but that was what interested me about the topic generally and why I really wanted to be involved.

Andre Tomlin – Fantastic, thank you. That’s a really great introduction. So, Emmanuelle, over to you. I wanted to give you a space just to very briefly introduce people to voices. What does it mean to hear a voice that isn’t there? And give us a bit of a picture of the kind of variety of experiences that people have and what we know about that.

Dr. Emmanuelle Peters – Thank you, Andre. I guess I think the variety is the key point, really. The diversity of experiences of people who hear voices is massive. And to me, that is the most important thing to always… Sorry, I’ve got things coming up on my screen… to always look at the person’s perspective before making any assumptions about what the experience is all about. And the experience ranges from one off voice in particular circumstances of stress or things like bereavement, where it’s very common, to extremely positive voices, which gives peoples’ lives meaning and which are enriching, to extremely distressing voices that basically go on all day long, are relentless and tell you to do terrible things and talk about you in terrible ways and make you feel terrible.

So there is such a spectrum of experience that that is the most important thing, to not assume that it’s an abnormal experience in the sense that everybody… it means it is an indicator of pathology when at the same time not invalidating people’s experiences that are very distressing, by saying well, it’s a common thing, it’s a normal thing, and you just need to learn to live with it. So I think that’s the… for me, the diversity of experience and understanding the experience in a multidimensional way, so not just the fact that you’re having a voice, but the meaning you attach to it, the relationship you have with it, beliefs you have about it, how it impacts on your life, whether you feel you can control the experience or it controls you, how much you believe in the power of the voices or what interpretation you have. Is it a spirit?  Is it a past person come to protect you or come to haunt you? All of these multidimensionality are the crucial aspect of voices, rather than just do you hear voices and that is a sign of pathology.  And it’s cross diagnosis and cross human experience as well, so I think for me, these are the crucial things about understanding voices.

Andre Tomlin – That’s great. Sarah, over to you. Tell us why you did this research and the question that you tried to answer.

Dr. Sarah Parry – Well, I suppose the original idea for the research actually came from work with adults who had started hearing voices when they were very young and essentially hadn’t really felt as though they’d ever had that experience validated and really heard. Some didn’t even feel as if though they’d really been believed when they told people. So that was, I suppose, what led me to start reading up and trying to learn more about the experience, and I was just surprised at how little research had actually been done with children and young people given their experience. So I just wanted to really try and start a piece of work that had a go at least at asking the right questions. And as I’m very happy to discuss at some point this evening we realised that actually we hadn’t asked all the questions that we should have done and lots of our young participants helped us out by telling us the information that we should have asked about. So it was really just a start to hear directly from their experience what it was like for them and what sense they’d made of this.

Andre Tomlin – Great, thank you. And finally, Douglas, I want you to give us the Elf perspective now, just briefly, because you looked at this and maybe we can bring up the question for poll two Matt. We’ve already asked you guys on the webinar what your primary roles are here this evening. For those of you who have read the paper or the blog we wondered what your thoughts were on it, whether it had changed your perspective in any way. So tell us whether you strongly disagree or strongly agree. Ten means you strongly agree that it changed your perspective on voice hearing, reading about this paper or reading the blog. We’re going to ask that question again at the end, so if you haven’t read it, don’t feel like you have to answer that now. And Douglas, you’ve read it; you’ve blogged about it. Yes, first of all, first impressions from you.

Douglas Badenoch – Yes, well, the first impression for me was something trepidatious because qualitative research is something I find a bit scary. I’m an information scientist like you, who will read a lot of different types of research. And it’s something that I feel is a little bit my comfort zone, if you like, in terms of an approach, the broad approach. That’s not to say I don’t value it at all, quite the reverse. I’ve seen plenty of qualitative studies and worked with qualitative researchers around capturing the diversity of experience. We’ve already heard that the checklists of this is why we need qualitative research is to understand not just about the typical outcome or experience but to understand the diversity, and that gives us a lot more richness, potentially richness in the research that we read because it’s, as you say, it’s not just like a quantitative study saying, here’s your answer with a confidence interval. It’s allowing you to understand the landscape a lot better. And if done well, it gives us an insight into, in this case, the subjective experiences and how people manage them.

So as I worked my way into it, it unfolded quite nicely I felt, and I did do a bit of digging about the methods, but we can talk about that in a bit more detail. But as far as the research question goes, I felt that this was really quite an important and urgent topic where there’s probably a lot of people out there who are just under the radar not telling anyone about it, trying to deal with this on their own, and that obviously has a lot of impacts when they eventually come in contact with professionals and how they manage it going forward. So it’ll be very interesting to come back, Sarah, to your comment about all the other questions because that’s the other great thing about qualitative research is broadly it helps us to understand in more detail what questions we should be asking.

Andre Tomlin – So do please ask some questions if you’re in the webinar and you have questions for any of the panellists or broader questions. Stick them in the chat; we’ll try and come to those later on. And let’s put the slides back up, Matt, and let’s go to slide five and let’s get into the detail of this. Douglas is going to start off by presenting his appraisal of this paper and talking you through the methods and the results. And then we’re going to get into some detail and ask Sarah to respond and Rebecca and Emmanuelle to comment. So, first of all, methods Douglas.

Douglas Badenoch – Yes, so on the slide, I’ve just done a very brief summary taken out of the blog, and obviously there’s a lot more too about that and would be good to hear from Sarah when we reflect on this section. But the key thing here for me was that the sample was recruited via social media, so people were volunteering, but then we were using health trust and support groups to reach out and try to contact the people that needed to take part. So I guess that means that we’re not quite 100 percent sure exactly who the folk were who took part or how they came to engage with it. But the second thing I want to make… I think was particularly important about this study was the platform that the team developed to do the actual research to engage online and I think… and Sarah will fill in for us… but I think the idea here is that because this is a group that are hard to contact, almost by definition… These are people who are uncomfortable talking to professionals or to their friends or family or perhaps anyone about their experiences, and so using the online platform, I think, is quite a nice, innovative way of doing that.

The population that we were looking for was aged 13 to 18, but they didn’t have to have a particular… an existing diagnosis or any contact with mental health services, although some of them did. So that was about the group of people and then in terms of the data we got from filling in the questionnaire about their experiences, the other thing that really triggered me off was looking at how you analyse that data. And in this case, I think the approach that was used was what… Again, this was one that I hadn’t come across… and it was called foucauldian informed narrative analysis, which is… Again that’s one of the… these are the words that frighten me. But once you look under the surface, you start to realise where we’re going here, that this is a way of analysing people’s reports of their experiences that focuses on these sorts of power and control issues that we’ve already heard are some of the key concerns for people who hear voices.

And that approach was then followed up with a phenomenological approach where the researchers were looking to understand how people make sense of their own experiences specifically. So it seems that this is almost a two pronged approach that is able to deal with not just the experience of the experiences, the phenomenological aspect, but also how that relates to people’s feelings of power and control. A final point, I think, was also very good was that throughout the process, the team involved folk with lived experience and that included in the evaluation of the outcomes and of the data at the end, which, for me, that was a big strength of the study. Could we skip on… Unless you want to stop there to reflect on… or we could skip onto the next slide, Matt.

Andre Tomlin – Just quickly to say, yes, I’m sure people are thinking of questions as we go along, so we’re starting to see some of those in the chat. Do please post your questions in the chat and we can we can look at those in a second. And also, Matt, maybe we could share the poll, poll three, which is asking people what they think of this method, whether they think this is valid as a way of doing research to answer this question. So tell us what you think. Is this a valid approach? These qualitative methods.

Douglas Badenoch – Yes, the checklist we’ve got up there just shows the framework that I used for appraising qualitative studies developed by CASP, the Critical Appraisal Skills Programme. CASP summarise… breaks down the process into a checklist, and it’s well worth looking up the CASP qualitative tool. So go to your Google search terms if you want to find it online because it gives quite a detailed breakdown under each question of the sorts of things that you’re looking for. And you can see it was mostly greens for me. I had a couple of questions around… indicated by the amber areas… around the recruitment strategy and the reflexivity aspects of the narrative analysis approach, the foucauldian approach. I think on reflection and having discussed this a little bit in more detail and learned a bit more about the foucauldian approach, the reflexivity, i.e. how do the researchers’ biases affect how they interpret the data that they’re seeing, these aspects are baked in to the foucauldian narrative approach. And I’m sure Sarah can and will give me a much better answer explanation than that.

Andre Tomlin – So let’s open up the floor a little bit to Rebecca and to Emmanuelle first of all. I must admit, when I look at qualitative research and I read the paper, I don’t read the methods in too much detail. I kind of skip over them and I look at the results and the conclusions. And then if I think, oh,  these are good results, I’ll go back to the methods and think, right is this valid then? Is this a good way of answering the question? And it’s interesting that the poll results show that over a quarter of the people in the webinar are unsure whether this is a valid approach or not. So hopefully towards the end, we can get a bit more certainty around that. But, Rebecca, what did you think of this approach? Did you do the same thing that I do and just skip over the difficult sciencey bit?

Rebecca – So I am a little bit of a glutton for punishment, and went I don’t understand that part. I’m going to keep Googling it and eventually send Sarah many emails about aspects of it. But I was actually particularly interested in the… and I’m only saying this the once… foucauldian informed narrative analysis aspect because we were looking at some of the language they were using and how the question statements were formulating things and, yes, I thought it was brilliant because as the study says, the medicalised language aspect is a really big part of lived experience. It was something I’d said to her earlier in that I’d gone, that is something I’ve wanted to articulate for a very long time, but I did not have the psychological terminology for it. So I thought that was really brilliant. It was a really brilliant method as far as I understand it, and I’m not pretending to particularly understand it.

But it was also really cool in terms of the link between power and language applies to the general things, but there’s also the power dynamic between the individual and their voices. And that was something that I think that particular approach really did some interesting things with because in terms of if the voice is based on past language experience, in terms of based on someone, your relationship to voices has changed, your relationship to that language might have changed. I hope that makes sense. But yes, and I think that was one of the few methodologies I could see in some of the other things that captured that really complicated aspect of how everything interferes in how your brain functions and how you think you’re thinking, and when you get to a point where you’re thinking about thinking about thinking, and then you just give up [laughter], so yes.

Andre Tomlin – Thank you, thank you. Great response. Sarah, do you want to come back on that and also answer for us one of the questions that’s come up a few times already in the chat about consent. So how did you get around this issue of consent with teenagers in your research?

Dr. Sarah Parry – Yes, so I’ll just go back one more step if that’s all right around consent in terms of why it was such an issue for this study. So, as Rebecca’s already mentioned, we know that actually most young people, for all sorts of reasons, may well not tell their parents, their siblings, their friends or anybody about their experiences of voice hearing and other sensory experiences, sometimes for a very long time. And if we had a different approach, say if we were asking people only to come forward for interview and to provide their parent there as well, so that their parent could consent, that would mean that that young person would have already had to have had that initial conversation with that parent about what their experiences were. So, again, we would have silenced essentially that massive group of young people that don’t feel comfortable talking about their experiences. And part of that is because of the stigma that surrounds experiences, because of all of the social myths and so on that surround it. So, again, by not including them in the research, in a way we were perhaps just contributing to that kind of silencing, stigmatising, very problematic approach.

So we really felt it was absolutely essential that we tackle this head on. So we liaised with the ethics chair at the NSPCC. We spoke with our local NHS REC. Sorry, that’s Research Ethics Committee. We requested to have our NHS ethics application reviewed by a research ethics committee that specialised in research with children and young people. And initially, because we were so worried that we needed to show that we were demonstrating that we were obtaining fully informed consent from everybody aged 13 to 18 who would have been able to complete the survey by themselves, assenting to take part, we put together actually initially a quite complicated comprehension task. We’d done lots of reaching around linguistic abilities and cognitive abilities at different ages and had put together this multiple-choice, comprehensive task that came in the form of a consent form after the information sheet. And the very sensible Research Ethics Committee said that we’d probably made it far too complicated and to make it simpler, so we did, and so we had a simple comprehension task following the information sheet that acted as the consent form that then facilitated people getting through to the online survey.

So essentially 13 to 18 year olds could take part without parental consent. We had the safety net of the amazing Voice Collective on hand so that if any of the participants at any point needed to call or email Voice Collective, they could. We also had a number of crisis lines available on every page of the survey to make sure that that information was available. We had the information sheets available to read online, to download as PDF, and we also had a verbal audio as well to try and make sure that we had different ways of getting the information across. So I’m not saying what we did was the best it could have been. We’ve learnt lots of lessons through this research. But we did feel it was safe and inclusive and that we had sought advice and support from experts in that field.

Andre Tomlin – Great, thank you. I’m conscious of time. I’m going to move on because otherwise we’re not going to get to talk about the results and the implications and all that interesting stuff. So Emmanuelle, I’ll ask you to come in next, if that’s okay, in response to the findings. Thank you. So, yes, Douglas, back to you. Let’s get the slide up and tell us what we found with this research and what you thought about it.

Douglas Badenoch – Slide eight please Matt. This talks to one of the questions about how many participants had told people.  One of the key findings for me was that half of the participants had not sought health care or community based support. So that suggests quite clearly to me there could be quite a lot of folks who just aren’t telling anyone. And I think that really chimes with what Rebecca was saying earlier about her experiences. And I guess people that you work with may have similar experiences. So I guess that’s quite an important thing to bear in mind, that a lot of people will be carrying a lot of these concerns without voicing them. Another striking thing for me was the balance between negative or upsetting and distressing experiences of voices but also positive, and both mixed emotions. So there was quite a substantial number who got a lot of positive support and comfort from their voices.

If we could jump to the next slide, please, Matt, I’ve just got a quick summary of those. And really encourage people to go into the paper to get a little bit more detail here, but it was very interesting that, A, not only that there were some people regarded their voices as helpful and they gave them support, they gave them advice, companionship, all these sorts of things, but there was also important differences between positive and negative experiences in terms of how people understood them. And I think that was quite an important thing, that it would be more difficult to unpack some of the issues with the negative voices than it would be with positive voices. So there’s not a kind of one size fits all thing here. So for me, those were the key take homes. I think it would probably be helpful at this point to give Sarah the opportunity to expand on that and what she felt were the… expand on that in a bit more detail and then go round the other members.

Andre Tomlin – Yes, please do Sarah and maybe highlight what surprised you about this or did this just confirm what you already knew?

Dr. Sarah Parry – No, we had loads of surprises, which is, I think, one of the reasons why it’s so important to sometimes do research that can perhaps be perceived as a little woolly, perhaps a little too flexible, all the usual things that go along with qualitative research. But if you don’t ask the open questions, you don’t get the open answers, and then you don’t find out the surprises. You’re just trying to confirm your own hypotheses, which may be way off or just exclude loads of different people. So we did have lots of surprises. We were really surprised how many of our participants were reporting these positive experiences. One of the biggest surprises for me was this sense of a reciprocal relationship between a child and a voice, especially when the voice had become quite personified, seemed to have a listening function, provided lots of things in terms of social functions that we’d normally be hearing about with younger children with imaginary companions. So that was a real surprise. We weren’t expecting to hear so many accounts of that. And it was also… Well, probably best word is massively impressive how many young people, like really young, like 14, 15, had essentially found ways to formulate their own experiences and tie lots and lots of different experiences together to develop really detailed, sophisticated meaning-making processes around their experiences. And by the sounds of it, a lot of them had done it without any help. We all know young people are amazingly resilient, but it was really, really amazing how many young people had made progress down that path. So, yes, lots of surprises.

Andre Tomlin – And any differences across gender?

Dr. Sarah Parry – Yes, so it was difficult to extrapolate lots of differences from this first analysis. We kept the survey open a bit longer just because we suddenly… We kept getting surges of participants now and again. So with the larger complete sample, when we eventually closed it, we found that girls were much more likely to report more distressing experiences and also more distress from those experiences. Many more young girls talking about very critical, very undermining voice content. Boys told us they had perhaps more multi-sensory experiences, so visions, felt presences. So there were gender differences. Girls, perhaps because they were having more distressing experiences on the whole, reported they were more likely to try and seek help from services, from family, from friends. So, yes, there were definitely some gender differences there that we’d like to learn more about.

Andre Tomlin – Interesting. So, Emmanuelle, over to you. What’s your clinical perspective on this research? Did these findings surprise you?

Dr. Emmanuelle Peters – Well, interestingly, they didn’t surprise me so much or at least the finding that there was lots of positive views of people’s voices and that voices brought benefits to the kids’ lives. And that’s part of my, I guess, from my research hat on with adults, I do a lot of the work looking at healthy voice-hearers. So I know that, in fact, for most people who hear voices, their voices are positive or at least not problematic. And of course, we know that although the prevalence is high in children, actually over 80 percent of those remit spontaneously anyway, so it’s only a very small proportion that carry on. And I also know from the adults work in healthy voice-hearers that… and that had surprised me when I first found this, as have other groups, which is actually the healthy voice-hearers tend to have an earlier onset of their voices than people who end up in clinical services. And of course, from the clinical standpoint, we always think that an early onset is bad news; it’s going to lead to more and more severe problems later on down the line.

So it was interesting that actually starting hearing your voices young could potentially be one of the protective factors for later on. And the people that I was researching had had voices for 30 years. And I guess one of the things which I think also fits with some of the things that Rebecca was saying was that if you are able somehow to make friends with your voices, so not be… to have your voices before you’re aware of the stigma around voices and the fact that it may be a sign of pathology, or I guess if people around you react to it in a positive way, then you’re able to start to live with them as part of normal human experience, as opposed to something that perhaps happens in later adolescence or early 20s, where it’s a break from previous functioning. If you’ve lived with voices all your life… and I’m talking about an age of onset around about eight in some of the groups that we have seen. So the positive aspect of voices didn’t surprise me.

The gender actually aspect did surprise me because in the psychosis world, of course, on the whole women tend to do better than men and they tend to have more protective factors like relationships and confidants and those sorts of aspects. So… but not to, of course, invalidate the fact that over majority, over half, 56 percent, did experience their voice as a negative. Plus we also know that in terms of those who present to services… There was a really nice study done by Suzanne Jolley recently, and some of her colleagues in SLaM, South London and Maudsley NHS trust, in fact, about half of people presenting to CAMHS hear voices. So we also know that they do come with some distress and they’re people who having interventions would be helpful. And for those who are distressed, starting to help people learning how to integrate them in their lives, cope with them, destigmatise them, learn strategies, find ways to think about them in a way that’s less distressing. And the earlier on you can do that then the better.

Andre Tomlin – I’m really interested in this phrase, healthy voice-hearers that you spoke about, and asking Sarah what the research showed in terms of whether we can categorise people in that way, whether it was just that I’m a healthy voice-hearer or whether people fluctuate over time and sometimes they hear positive and sometimes it’s negative and it’s more of a mixture. Does the research tell us anything about that?

Dr. Sarah Parry – I think our research has shown that people can have very mixed and very nuanced experiences of their voices, so voices can be scary and very unpleasant but also valuable and helpful in some way, in the same way that other human experiences, like anxiety, can be problematic in some ways and very useful and helpful in other ways. So I think the picture is quite complex. We obviously need to hear from many, many, many more young people to try and cast generalisations, but I think the issue for a lot of young people is not necessarily the presence of voices or the nature of voices, it’s how other people make them think about the voices that they have. And really, it would be nice to get to a point where somebody can just hear voices and for them not to have to be in a category, for them not to have to be called a healthy voice-hearer, for them just to be somebody who hears voices.

Andre Tomlin – Yes. Rebecca, you’re nodding there. What’s your… What do you think needs to change for that to be the case in society? For us to just say, oh, you hear voices, yes.

Rebecca – So I think it’s very much partly to do with some of the conclusions the research came to about pathologising them. So there were two particular bits that I said to Sarah I thought were brilliant, and I think both Sarah and Emmanuelle have really explained those. So presenting the array of voices is generally very good in sharing that some can be positive. However, also we know that not all voices go away; a significant proportion of them don’t. And so CBT specifically for psychosis or other therapies that go with it, like ACT, might focus on accepting them. However, there’s a fundamental difference between let’s make this neutral, it doesn’t really add or take anything from your life, but you’ve got to spend six months to a year learning this view, versus this brings something positive to your life in this way, so that is really useful. And it’s also a really useful set of research to have in specifically areas like hospitals and that where they might not have the same types of presentations that we see elsewhere, so they might not be used to potentially healthy voice-hearers.

I have been admitted with other conditions, depression, and yes, it was very much a I walked in there and, ah yes, you hear voices; that’s your issue. And I’m going, no, no, no, they are not great, but they are fine right now; they are behaving themselves. I’m actually here for something else. And there’s something I really liked about what Emmanuelle said was talking about the fact that actually early onset can be a protective factor. A, because I’m sure there are the psychological mechanisms, but yes, you learn to cope, you learn to manage. But in terms of what you said about society from a clinical perspective, something I’m very aware of in adult services, and I’m trying to think how most clearly to phrase this, is that in day to day I would be encouraged to reframe my own reality. I have ownership of that.

However, when I’m in crisis, I’m suggested to let somebody else tell me what is real and what isn’t because it de-escalates it. That is useful, but that can… and I’ve seen it in groups… people have talked about how that bleeds over into other areas. So then you go from voice hearing being a very small negative thing in crisis periods to affecting large periods of your life. And that’s why I was particularly interested in the younger onset because I think on the whole it can be a really protective factor, but if clinicians present from a young age as because of this condition, which of course not all voice-hearers have this condition, I’m talking just clinically here… because of this you need to doubt your judgement more, that could potentially negate some of the positive factors because they are doubting their judgement for longer.

And so that was something I really liked about this research when they specifically focussed on the fact that you need to link development and clinical because you can point out that the developmental stage of learning to take your own responsibility for your narrative… I’ve slightly lost my train of thought. I hope everybody’s following me there. Yes, you need to know how important that stage is in order to ensure that you’re not disrupting it, and I thought that was proven from the research and from what Emmanuelle said, and that just comes across in a lot of lived experience, people I’ve met. Sorry, that was a very long ramble, but I hope it makes sense.

Andre Tomlin – No, crystal clear, thank you. Yes, and everyone’s thumbs are up. Yes, Emmanuelle?

Dr. Emmanuelle Peters – Can I just add, I think that’s so fascinating what you said Rebecca, which is I think for a lot of clinicians the psychotic experiences, such as hearing voices trumps everything else in terms of that’s severe depression and anxiety that’s common. And actually, we find I would say up to 50 percent of the people we see in our clinic… These are adults in the PICuP clinic…  actually it’s not necessarily the psychotic experiences, the voices, the visions or the other so-called unusual experiences that are the core problems that people have. Actually, they can deal with those. It’s the depression and the despair that they have in getting up every morning with no social valid roles or not having a meaningful relationship. And sometimes those issues are a lot more distressing than the voices where, you know, well, I can just handle them and sometimes they’re a pain, but actually, what I want to work on is this. And I think you should always engage with what is distressing for people, not necessarily what you think is normal in terms of what we say is normal human experience. So I thought that was really, really fascinating and interesting to hear that’s also been your experience.

Andre Tomlin – Yes. So I just want to poll everybody again. You’re going to get poll fatigue, I’m sorry, but poll four is interesting because it asks whether this evidence is clinically important, these findings that we’ve discussed, and I wonder what people think of that. So tell us in your experience as clinicians or whatever you guys are, do you think this is important clinically for people? And then we’re going to move on and we’re going to talk about the implications of this evidence and we’re going to ask Douglas just to reflect for a few minutes on that and then open it up again for discussion. We might go on a little bit past six o’clock because I think this is fascinating and we’re all having fun, so I hope you are too. And yes, so feel free to stick around for a few more minutes after six if the kids can hang on for their tea. Ninety percent, there you go Sarah, stick that in your REC feedback. Bang on. Qualitative research, pah.  Douglas, implications. And can we have the slides back, Matt?

Douglas Badenoch – Thank you, yes. There’s only really one slide to show at the end and I think we’ve picked a lot of these up. I wanted to make sure we didn’t lose the chance to pick up a few of the questions that folk have been posting in the chat. Particularly, there was a few questions around things like was there any evidence of change over time in people’s experiences of voice- hearing? I think it would be interesting to get from you around that Sarah in a wee second around other important cultural issues and how people interpret and frame their experiences. So we’ll come to that in a second, but one of the things that… Again, it goes back to how this study was approached… but one of the things that I took out of it was the comments from the participants on the effect of taking part in the study. So there’s a couple of quotes here: ‘This survey helped me get my feelings out.’ ‘Thank you for giving me a place to talk openly about my experiences.’

And I guess that made me think, well, what else can we do with this sort of platform? Does it lead to avenues for new research and new questions? Is the participation in itself a helpful thing for young people? And maybe they are doing this through other platforms that obviously we don’t have access to. And my last thought about the platform is, is there a potential here for generating a body of data that other researchers could consult? So, for example, you could capture people’s experiences and then allow other researchers to look at them. Is there scope for that kind of facility? But I wanted to first pass back to Sarah to comment on the questions around cultural backgrounds, framing people’s experiences, are there any issues around changes over time?

Dr. Sarah Parry – Yes, thank you. So we were really conscious that we wanted to ask questions from different angles. As a clinical psychologist and those of us in health services, we tend to work with people who’ve got difficulties and problems and challenges that they haven’t been able to solve themselves often because they’re very complicated, and you get very used to looking for problems and trying to find solutions. Actually, it seemed really important for this study to include… I love qualitative research. I discovered it during my doctorate and have loved it ever since… But it still seemed important to include some sort of screening and assessment tool as well, which is why we developed the MAVIC that went before the quantitative questions in the survey, so that we did have a few yes or no answers, so mostly likert scales because we expected things not to be particularly binary for most people. But we asked if experiences could be frightening or scary. We also asked if they could be encouraging and supportive. And that was really interesting. And I wonder if asking those questions in that way made some of the qualitative questions maybe a little bit easier to think around in that we were building up knowledge of each young person through the survey.

And just when you were mentioning that there, Douglas, it genuinely made me feel really sad, actually, when I saw those comments that the survey had been a helpful place to talk because I thought, gosh, if a research survey is the place that’s not okay. There’s got to be better places for young people to be able to talk about their experiences. We tried to ask the questions in a narrative way to help that story building process, looking at each individual experience from a different perspective. But I think in terms of building a bank of experiences and different accounts, I think that could be such an important thing to do. Methodologically, I think it would be quite tricky because I still don’t think we’ve got a firm grip of all the questions we need to ask and the ways in which we need to ask them pinned down. And I’m also I’m always very aware with qualitative research that there has to be a huge amount of very, very careful anonymisation before quotes are shared. We were blown away by the depth and detail that so many young people went into on an online written survey and incredibly grateful as well.  I’ve missed the question Douglas.

Andre Tomlin – It’s the one about ethnicity I think that’s key Sarah to tell us what the Black Asian minority ethnic mix of your sample was.

Dr. Sarah Parry – Thank you. And I’m not actually sure I can remember it offhand. I could perhaps just very quickly…

Andre Tomlin – Was it enough to draw any conclusions about how experiences are different in different groups?

Dr. Sarah Parry – No, and I think our sample was too small to perhaps draw those conclusions. And I’m very wary about doing that, particularly for unusual, sensitive experiences and equally around aspects relating to early onset psychosis because there is evidence that there’s over-representation from Black and ethnic minority groups in psychosis services, but actually, there are so many issues with that in terms of conceptualisation, how people can misperceive symptoms. So, yes, I think that’s an area where there’s a lot of very, very critical research that needs doing because I think there are so many structural inequalities and biases in place. I would be very dubious about drawing inferences unless there were very robust, large samples to be looking at.

Andre Tomlin – Yes, fair enough. Of course, it’s not ethnicity that makes people have a higher risk of things like psychosis. It’s all sorts of other things that are going on.

Dr. Sarah Parry – Absolutely.

Andre Tomlin – Yes. Emmanuelle?

Dr. Emmanuelle Peters – I was just going to say very briefly because I’m mindful of the time if people are interested in cultural aspects of hearing voices I really recommend the work of Tanya Luhrmann who’s an anthropologist and has written quite a few very fascinating books about that.

Andre Tomlin – Great. Yes, thank you. Okay, so Rebecca, I wanted to come back to you and ask what you thought of these implications that Douglas has presented and the way that Sarah’s responded there. Any final thoughts?

Rebecca – I was having a moment with the mute button there. So I think what was particularly interesting… I think the… Sorry, stuttering. The implications were brilliant, and I liked, as I said, the range of things, but what was particularly interesting was actually watching the chat in response to that, in that you could watch people re-evaluating certain aspects and they’re going, how does this and this doesn’t work here. And I think that’s particularly important in terms of how it affects clinicians because, again, as I’ve said repeatedly and I’m trying not sound like a broken record, one of the most harmful things, and it’s understandable when you have many patients and a short thing, is to categorise too quickly. And that is also an issue in, I think, we used healthy voice-hearers or just people who view them as positive. They might view themselves as healthy, but that doesn’t mean that they feel they fit that category. And that is… I apologise, I’ve just lost my train of thought. Could we possibly go to somebody else, please?

Douglas Badenoch – Sure. Thank you, Rebecca. I just very quickly wanted to… We’re kind of winding up I think and some people have to head off. I would like to hear Sarah’s thoughts about all the questions that she didn’t want to ask. And as you were saying, Rebecca, there’s a lot of questions flying in the comments field, which would probably need an entire… I hope the NIHR are watching this because we can commission quite a lot of studies on the back of the unanswered questions that come out of this research. But I wondered if you could put the last… Sorry, the poll number five up, please, Matt. So this is asking the same question that we asked at the start, around has this paper changed your perspective on voice-hearing? And this will give us an idea by doing a bit of a before and after, does having the Journal Club, how does it affect… You know, very crude terms…  what people think about it.

Andre Tomlin – And while people are doing that… Thanks Douglas, for stepping in because my wifi flaked away there for a second, so my chairing was impossible. But I wanted to also ask Emmanuelle to give us a couple of minutes at the end here in response to quite a few of the questions that have come through about what do we do in response? If I’m working in a school, how can I best support students? We know from this research that a lot of young people don’t necessarily talk to their parents about this or haven’t disclosed their voice-hearing to their parents. What advice would you give to people who work with young people if they find out that this is an issue?

Dr. Emmanuelle Peters – Well of course, Sarah is also a clinical psychologist, so I’m sure she can also answer that. I think first and foremost is to not panic, not overreact, not catastrophise. The first thing is just to acknowledge and to probe a little bit more, I guess, about whether this is actually a difficulty for them. Sometimes just saying, you know, this happens to us all under stress, perhaps finding out whether this is in the context of bereavement. And so really just not overreacting immediately thinking this is a sign of long-term pathology and potentially a precursor to psychosis. That’s the most important thing. For those who are distressed of course, then you can give them little coping strategies for just having a little bit more control over the voice. So, you could have very simple coping strategies, such as humming to yourself if you just want the voice to go away for a little bit, listen to music with headphones just to distract yourself from the voice if you just wanted to get a bit of peace from them. Sometimes just having a bit of a worry period with the voice, so that rather than the voice coming in at times you don’t want them, you could try… This doesn’t always work, I have to say… but you could try and have a little deal with them saying, you know, I’ll listen to you later. I’m kind of busy right now. Not overreacting to them, not getting into a fight with them and getting really sort of emotionally involved. But when people are really quite distressed, especially if it’s occurring in the context of a lot of other stuff happening, then that’s when perhaps asking mental health professionals might be the answer. Sarah, you also may want to add to that. I know that you work clinically.

Dr. Sarah Parry – I think you’ve covered loads there, but I think the key things are to be the calm one, to keep the calm, to try and soothe the young person, and also just to remember how many skills people have. We’ve just done some research with teachers and social workers because we know that young people are very likely to confide in teachers especially. That’s come up from our research. And there are so many transferable skills: listening, conversations, having existing relationships. Remember your own skills as well, when a young person comes to you and tells you that perhaps they hear voices and they’re frightened by them. So I think there’s lots to do and all of the usual grounding exercises that would you do to help somebody find their calm again will always be helpful.

Dr. Emmanuelle Peters – And I think it’s really important… Rebecca has talked about reality-based explanations… I think sometimes it’s not helpful to try and invalidate people’s realities. So if you go too strong down this isn’t real and you mustn’t… it’s not true… actually, that invalidates people’s realities. Well, for some people, actually, if you’re… what you might need to put across is that these are not dangerous. So actually, the voices might say they’re going to do terrible things. They might tell… They might… They won’t manage. They might tell you that you are a horrible person. It’s not true. They can just be like bullies. That doesn’t mean that what the bullies say about you is true. It’s just it’s the bullies’ problem. It’s not your problem. So I think listening first to what’s happening with the person. For some people just to say it’s just a voice, it’s not actually really happening and it can’t do anything, so don’t worry, might be very good, while other people… But I think going back, going too far down, you know, this is all in your head and that means you might be going mad, would be the implication. It can be very unhelpful.

Dr. Sarah Parry – So I think it’s that the voice is real and the voice is real to the young person, but it’s what they’re saying doesn’t necessarily mean to be true or real.

Andre Tomlin – Rebecca, do you want to come in?

Rebecca – Yes, that just really resonated with me with the point I was thinking about earlier in terms that something that helped with me and with other people is that we’ve gone, okay, you hear your voices. In my case, they are very negative. But the reason I attribute meaning to them, even when I’m well, so even a day like today, I can hear them, I attribute the meaning because I believe what they are saying, not due to their inherent authority, but because I already believe that. I saw a comment about that on the chat. But it’s worth putting it in the context of why are they doing that? And it was what you were just saying; you don’t necessarily need to invalidate the reality. They are there. You don’t have to believe them. They don’t necessarily have to be any accurate.

And I think there’s some brilliant stuff about calming of things, just for… There are a few people on the chat who are talking peer-to-peer relationships. Depending on who you have that relationship with… This sounds very flippant, but one of the best reactions I had was I explained to a friend that I heard voices, very first hospitalisation, had told no one, first friend, and her response was, oh, is that all? And then she went, sorry, that was meant to be really invalidating. She panicked. But it was that unimportant to her friendship with me. And it is very much something that continues with things like, I’m really struggling, voices getting bad, she’s going, do she think they’re hungry? If I get them a KitKat would that work? Now do not take that as a general approach, but it is brilliant sometimes to engage with them but not imbue them with power, I think is my overall point. Even if you’re putting them as a form of reality, it doesn’t mean they are any more of a persuasive or correct form of reality than anything else.

Andre Tomlin – We’ve only done two of these CAMHS around the Campfire, but I’m absolutely loving them and this has been a really interesting discussion. It’s been great because we’ve looked at a research paper, but actually we’ve ended up just talking about the experience, what it’s like for people, what we can do to help people, and there’s loads of uncertainty. When we first started talking to Sarah about this, that was the first thing she said. There’s so much that we don’t know here, but it’s been a really constructive conversation. So I wanted to thank ACAMH for hosting it and to Sarah and Rebecca and Emmanuelle for being on the panel, and for Douglas for writing the blog, to Steph, for keeping us all in order and helping keeping the chat going and answering questions as we’ve gone along. There’s one final poll. Tell us what you think of this. We’re doing these monthly, these CAMHS around the Campfires. And so next month we’re going to have another session at the end of the month. And I’ve completely forgotten what it’s about or who’s going to be in it, but we’ll be tweeting it to CAMHS Campfire very soon. Sarah?

Dr. Sarah Parry – Hi André, I just noticed a few comments in the chat just about raising awareness and resources. We’ve developed some resources from our research with young people and Voice Collective that are freely available to use, download on the Young Voices study web page. So please feel free to use those as helpful.

Andre Tomlin – Thank you. That’s great. Thanks also to the McPin Foundation Young People’s Network. Rebecca’s representing them tonight. They’ve been fantastic in helping us organise these and connect us up with great young people who can share their experiences. So, yes, I’m going to draw it to a close there. Thanks very much for joining us, everyone, and good evening.

 

Dr. Sarah Parry is a Clinical Psychologist and Practice Fellow with experience of working in a range of NHS and private sector organisations. Sarah principally works in the field of trauma and children’s mental health. Research interests include therapeutic uses of formulation and the therapeutic utility of compassion for clients and practitioners alike. Sarah and her colleagues also explore how interpersonal trauma can impact aspects of people’s lives, and how adults and young people develop coping strategies in response to traumatic experiences. Sarah’s research has been published in a range of peer-reviewed journals, including the Journal of Children’s Services, the Journal of Child Sexual Abuse, and the Journal of Trauma and Dissociation. Biog via Manchester Metropolitan University

Emmanuelle has specialised in the area of psychological approaches to psychosis for over 20 years, and published over 100 academic articles in peer-reviewed journals. She has a long history of collaborative research and supervision, training, and implementation of clinical services. She is the Director of the Psychological Interventions Clinic for Outpatients with Psychosis (PICuP) service, an award-winning specialist psychological therapies clinic for psychosis, which she set up in collaboration with Prof Elizabeth Kuipers 20 years ago. Bio and image via KCL

Rebecca is a young voice hearer and part of the McPin’s Young People’s Network. She is part of the lived experience advisory boards of several research projects concerning voice hearing. She strongly believes in the importance of actively seeking out lived experience knowledge for all aspects of formulating research and clinical practice policy. Her hope is that by the time she becomes a clinician lived experience experts will be integrated into psychological principles – and that they will be fully confident to tell her exactly what she is doing wrong!

I am an information scientist with an interest in making knowledge from systematic research more accessible to people who need it. This means you. I’ve been attempting this in the area of Evidence-Based Health Care since 1995. So far the results have been mixed. For some reason we expected busy clinicians to search databases and appraise papers instead of seeing patients. We also expected publishers to make the research freely available to the people who paid for it.. Ha! Hence The National Elf service.

André Tomlin is an Information Scientist with 20 years experience working in evidence-based healthcare. He’s worked in the NHS, for Oxford University and since 2002 as Managing Director of Minervation Ltd, a consultancy company who do clever digital stuff for charities, universities and the public sector. Most recently André has been the driving force behind the Mental Elf and the National Elf Service. *The Mental Elf is a blogging platform that presents expert summaries of the latest reliable research and disseminates this evidence across social media. They have published thousands of blogs over the last 10 years, written by experts and discussed by patients, practitioners and researchers. This innovative digital platform helps professionals keep up to date with simple, clear and engaging summaries of evidence-based research. André is a Trustee at the Centre for Mental Health and an Honorary Research Fellow at University College London Division of Psychiatry. He lives in Bristol, surrounded by dogs, elflings and lots of woodland!

Bio via The Mental Elf