This blog started at the end of 2013, with me making public notes about representations of mental health in online media. 6 years or so later, there has been an explosion in the amount of high quality information available. Spurred on somewhat by the struggles of some of my clients during the covid-19 pandemic, I’m doing some more research on what’s out there. I’m updating the blog again with what I come across. I’ll start with four videos about psychosis, two new to me, and two classics.
A brilliant punky, sweary, funny short film by John Oewinne about an experience of grandiose psychosis. Opening warning from the film: comes with flashing imagery, blasphemy, irreverence, humour, music and other misdoings. The video talks about a common grandiose religious delusion. The protagonist (it’s not clear if the person in the video is an actor or not) thought that he was Jesus, and also felt that he was able to talk to his recently deceased father. He talks us through the chronology of his delusion, from beginning to think he was Jesus, to being sure, to getting into conflict with his family about his beliefs, being hospitalised, being released from hospital and then experiencing a depressive fall that came after realising he was not Jesus.
John Oewinne is involved in a number of interesting mental health projects and I’ll be checking out his Coffee and Psychosis podcast ASAP.
Compassion for Voices.
I’ve posted this one before, but it continues to be incredibly well received by the people I and others work with.
Being compassionate towards one’s voices, especially when the experience of voices can be deeply unpleasant, can see counter intuitive and even insulting. However, from what many of my clients have told me, learning to be compassionate towards one’s auditory hallucinations / voices, can be much easier than fighting against them or studiously ignoring them, both of which can be exhausting. Compassion for voices can also fit together with being more compassionate with oneself and with other people.
For those that consider their voices to be a part of them, it can make sense to be compassionate to their voices, as in the end, being angry at the voices means being angry at oneself – a stance that rarely takes one to a better place. At a deeper level, many have come to the conclusion that their voices also carry another message, about their own unprocessed emotions – whether that be able difficult childhood experiences or more recent difficult experiences such as bereavement or workplace bullying. There is no one explanation-fits-all solution or explanation, but this one certainly resonates with many people.
Compassion is often seen as a sign of weakness (a view that is often propagated by the society around us), but instead we can see it as a sign of strength. Likewise, for some, the idea of being compassionate can be scary, as they feel it might put them at risk. However, a true, mindful compassion can help put us in a strong, wise position, where we are able to take control back over our lives.
The Voices in My Head
Compassion for Voices links really nicely with another classic talk, this one by Eleanor Longden talking for TED.
Eleanor talks eloquently and with humour about how stigma, a poor response from health services and fear of her voice hearing experiences led to a huge worsening of her experiences while making sense of them and developing compassion led to recovery and reclaiming her life. Now a successful academic and campaigner, she promotes solitary among voice hearers and is a strong proponent of voice hearer groups such as the Hearing Voices Network. and the International Hearing Voices Network, Intervoice.
You might recognise Dr Longden’s own voice as she also narrated the Compassion for Voices video.
People Call Me Crazy – A Film by Juno Jakob
This one’s actually from back in 2014, but I’d not seen it. It’s Juno Jakob, recounting in his own words his experiences with ongoing psychotic symptoms, sigma and hospitalisation among other things. It’s open, honest and straightforward. A great description of what it’s like for some people to struggle with psychosis. Inline playback is disabled, so click on the link to watch.
There is a more recent shorter companion video produced with Mind, also from Juno, which is worth a watch.
That’s all for today
I’ll be asking around for more resources, and will try to update as I come across them.
This is a follow–up from the previous post on psychosis related media. I’ll be adding any new media and recommendations here. Starting with this one suggested by Rob and made by the Greater Manchester Mental Health Trust, as collaboration between service users and MH professionals.
It covers similar topics to the media I’ve published recently, but adds a specific regional identity, which may be important in helping to engage people. As the makers say: “The aim of the film is to raise awareness, reduce stigma and encourage people to seek help early”.
I’m back in media research mode now, and I’m teaching undergraduates about psychosis this week, hence the topic. There are some exceptionally brave people who have posted on YouTube about their experiences of psychosis. I’ve picked some of the most interesting material I could find and have summarised it below. I’ve gone a bit further than normal and added quite a lot of my own reflections on the videos (I hope this is a good thing). The list of videos below is far from exhaustive and as always I welcome any other suggestions and feedback from readers.
Schizophrenia: My Story. In this video Maya briefly recounts her experience of developing voices and her diagnosis of schizophrenia at 17. She tells of how her problems started with sexual abuse that began at age 10 and lasted for a decade. In her early teens, she lost interest in the things she used to like (such as sports), and this led to her father taking her to a doctor. Having told the doctor that she was thinking of suicide as he was admitted to hospital, at which point she told the doctors about the voices she was hearing. She says that she now has 7 voices and discusses briefly how the voices evolved over time and how they relate to her experiences of abuse. This story is one I have heard all too many times from clients over the years (and I only began my clinical training in 2009). However, the familiarity of this story may mean that it will be particularly useful for all those who have similar stories.
This is just one of quite a few videos by Maya about her experience. I’ve not watched them all, but those that I have all are excellent. They are well paced, concise and compelling, which is not always the case on YouTube.
One of the more difficult things about these videos however is that they are done in ‘real-time’. This is a real person, providing regular updates about their progress. Thus, when she tells us that she is coming off medicine without her doctor’s knowledge or help, I cannot help but feel concerned for her. And when we see her a month or so later (just two weeks before this post), struggling more with her voices (but still very coherent), this concern does not abate.
It seems that Maya is using YouTube to process her own experiences, and perhaps as a kind of therapy. Beyond this, she is reaching out to her audience to form some social connection, as she notes that she has ‘no friends’ in the physical world. We know that supportive social networks in the physical world are important in staying well, but in the absence of a strong physical network, perhaps online networks can provide some of this support.
Finally I notice that Maya has subscribed to rawsammi’s channel, which I covered some time ago in another blog post. Rawsammi is another youtube poster, who talks about her diagnosis of bipolar disorder. There’s definitely a good story to be told about how people are using youtube to connect with and support each other.
Autumn Likes Elephants.
Autumn is another YouTuber with a diagnosis of schizophrenia. Like Maya above, she has a channel of videos all about her experience of schizophrenia. In the video above, she tries to make sense of what caused her schizophrenia. Her struggle in working this out mirrors the struggle of all clients, psychiatric professionals and researchers. After many decades of research, we know there is no single clear cause of psychosis, but in most cases it is likely that a complex set of genetic and environmental causes are involved. This is not just a case of genes or environment, but gene-environment and environment-environment interactions (which I think I may write about in a future post).
Unlike Maya, she describes herself as having a “great childhood”, but that she remembers being paranoid and that she has been told by her parents that she was delusional as a child. From a familial perspective, Autumn talks about how her great-aunt (and other relatives in her maternal line) experienced similar difficulties and thus may have carried genes for psychosis.
Interestingly, Autumn talks about how she was a quiet child and suggests that this may have made her symptoms less obvious than they might be in more outgoing people. She says that this meant that her family did not notice anything being seriously wrong until she became very unwell. Like many people I’ve met, stress at school and in her first year of college seems to have exacerbated Autumn’s problems (for many of my clients, the first year of University or exams seem to have been a trigger for manic or psychotic episodes).
“I’m not a professional… but I can say I’m a professional on the schizophrenia illness because I’m a schizophrenic*”.
It’s a standard trope in psychology to say that while the psychologist is (hopefully) an expert in how the mind works, the person is an expert in themselves. Trope or not, it’s very true, and the person’s own expertise is central to therapy working. Thats also why I’m interested in these videos; it’s my firm opinion that the people who experience these difficulties are the best people to explain the experience, both to other patients and to healthcare professionals. Indeed I first started looking for such videos around 6 years ago in an attempt to open up conversations in group work on the psychiatric ward I was working on (LEO, which at least at the time, was a relatively enlightened and forward thinking place for helping young adults with psychosis).
(*I’m generally not keen on people calling other people ‘schizophrenics’ because it can be stigmatising and the label might overshadow the person’s essential humanity. However, a person with a diagnosis has every right to describe themselves however they wish!)
Something else that Autumn mentions is vitamin B12 deficiency as a potential cause of psychosis symptoms, which is not something I’ve come across before. However a (non-comprehensive) literature search, brings up a number of results, including this case study of a 16 year old boy. For me, this is an important reminder to thoroughly check a person’s physical health when they present with psychological difficulties.
Finally I thought I’d point you towards Autumn’s art video, which I’ve not watched properly, but which perhaps reflects a common, but not universal, flip side of psychosis, creativity.
Schizophrenic On a Bad Day
In this video, IhaveSchizophrenia is currently experiencing auditory and visual hallucinations and he posted it in order to try and show what it’s like to function while having such symptoms. He has a voice that tells him do do things and not to do things (known as a command hallucination), and is seeing animals and letters on the wall. His thoughts are somewhat disorganised and he says he is paranoid – as one might expect when having hallucinations.
Like the two vLoggers above, IhaveSchizophrenia, has a variety of different videos about his experiences of schizophrenia – indeed, he’s truly prolific, with dozens of videos. In the video “What Caused My Schizophrenia“, he talks about how his hallucinations started around age 5, and how they were not associated with any stress that he was aware of. However, he then talks about how he was very severely bullied for many years and how the death of his grandfather had a serious impact and how he felt that this ‘pushed me over the edge’. Again, well worth a watch.
This is a bit of an odd video. It’s mostly a collection of older videos about people with catatonia. Often these old videos can be rather uncomfortable viewing due to their low production values and questions about consent. Nevertheless, I think the video provides a useful teaching tool on a symptom that is seen much less that it used to be.
What’s really odd about the video is that it comes with the disclaimer, yet..the people who made the video chose to add spooky music with rather undermines the idea of respecting the patients. In any case I include it as it could be useful as a teaching aid.
Auditory Hallucination Simulations
These two videos (here and here) attempt to simulate the experience of hearing voices and other auditory hallucinations (they are generally designed to be used with headphones to simulate the stereo nature of some hallucinations). I usually try to check the comments before recommending any video, and in this case both videos were positively recommended by people who hear voices. Again, these videos should be useful as teaching aids.
Four Patients with Schizophrenia
This is more of a classic teaching video. It features four different people with a schizophrenia diagnosis who are all currently experiencing symptoms such as paranoia, delusions, problems with attention and cognitive function. These videos always beg the question of informed consent, however as they are already available on YouTube, I guess we might as well make respectful use of them?
The video is actually compiled from the following sources (1,2,4) and one which I can’t find.
Living With Schizophrenia
A short US based documentary on schizophrenia focussing on recovery. This one is a classic educational doc, with various talking heads, a patient advocate, a psychiatrist, a clinical psychologist, and various patients talking about their experiences. It covers a variety of issues including how people can be helped by their family, the different types of symptoms a person might have, the behaviours associated with this, the use of medication.
I have a bit of an issue with this documentary however, stemming from an opening statement that:
Schizophrenia is a disorder of the brain.
My disagreement is nuanced, schizophrenia (accepting the diagnostic term for the moment) is indeed a disorder of the brain, just like depression and anxiety are disorders of the brain. Just as one’s thoughts are clearly a function of the brain, problems with one’s thoughts will always be a function of the brain. But schizophrenia is very clearly also a disorder of society, something that this documentary appears to totally miss. As something of a response to this overly ‘medical model’ approach, which I’ve witnessed time and again, I’ve invented another diagnosis (somewhat tongue in cheek):
IED. Inappropriate Environment Disorder.
Schizophrenia, like pretty much all the other psychiatric disorders might commonly fall under the category of IED. Society often triggers psychosis, and then makes it worse by stigmatising the people it has hurt. The fact that the documentary singularly fails to give real consideration to this is a real shame. Nevertheless, it’s worth a watch, especially as an introduction to the topic.
I Am Not A Monster: Schizophrenia | Cecilia McGough
Another first person account of schizophrenia, this time a TED talk by Cecilia McGough, an astronomer diagnosed with schizophrenia.
In this talk, she briefly uses one of my favourite ways of demystifying auditory and visual hallucinations: dreams. Dreams (and daydreams) show that we all have an inbuilt capacity to conjure up realistic sounding conversations with other people who are not in the room with us and realistic seeming visions of people and objects that are not in the room with us… and when we are dreaming, we don’t realise that we are dreaming.
Strangely, mental health professionals often seemingly fall into the trap of thinking that voices are something bizarre and beyond the understanding of people who don’t experience them in waking life. We almost start believing that these voices are indeed something supernatural. They are not. One possible explanation (which I generally subscribe to) of voices are that they are simply our normal inner world (albeit generally the negative side of it), but that the part of the brain that recognises this fact is somehow offline (like in dreaming) and thus the brain (which always tries to make sense of what it is experiencing), simply comes up with it’s best explanation of what’s happening. Something like:
Subconscious Brain: I notice that there are voices, but as far as I’m aware, I’m not currently generating these voices. Also, I can’t see those people right now. Therefore these voices must be from real entities that I can’t see. That could mean: I’m hearing devils, someone has put speakers in the room, or that thoughts are being inserted into my head. Conscious Owner of Brain: That’s really really scary.
A key part of the talk is about coming out as a person with schizophrenia. And interestingly, after McGough came out, she found unbeknown to her, some of her friends also had the same diagnosis. Her mission is to be a patient representative and to confront the stigma associated with the diagnosis. As part of this she has started a non-profit organisation to help students with schizophrenia.
The voices in my head | Eleanor Longden
Sometimes it snows as late as May, but summer always comes eventually.
A tale of resilience, survival, empowerment and recovery. Probably one of the world’s most watched talks on schizophrenia, for good reason. Again the video is from TED, and has 1.4 million views on YouTube alone.
As so often, the ‘psychotic break’ happened in the first year of university. In her case Eleanor experienced a voice constantly commenting on her activities in the third person, ‘neither sinister nor disturbing’ that seemed to be trying to communicating something about her inaccessible emotions. In fact the voices only took on a negative connotation once she’d told a friend and observed the negative reaction.
Eleanor talks about how once a person has a diagnosis, often normal behaviours are misinterpreted as aspects of schizophrenia, as the are viewed though the aperture of the diagnosis. She very clearly describes many of the negative consequences of receiving the diagnosis, from stupid throwaway comments from psychiatrists to physical and sexual assault. At the same time she pays tribute to those that helped her recover and thrive.
Eleanor proposes that mental health professionals stop asking: ‘what’s wrong with you’, and start asking ‘when happened to you’. I could not agree more. She also argues (along with organisations such as inter voice) that voices are a “sane reaction to insane circumstances”, a functional coping mechanism.
A tale of mental illness | Elyn Saks.
To Work and To Love. My last video for the post (for the moment), and the third TED talk. I’m too tired now to provide a good description, but be sure it’s worth a watch. Elyn Saks has a diagnosis of schizophrenia and is a professor of law, psychology and psychiatry – and author of the book The Centre Cannot Hold, which shamefully I’ve not read. Yet.
Oh before I go, just one more quote… from Saks:
There are no schizophrenics, there are people with schizophrenia, and these people may be your spouse, they may be your child, they may be your neighbour, they may be your friend, they may be your co-worker.
I’ve decided to add new discoveries and suggestions to a separate part 2 post. Click here to see!
In today’s Guardian there is a lovely short article by ‘Anonymous’ about what it is like to hear voices. Well worth a read for those struggling with the same issues, or those trying to understand the experience of voice hearing.
The author’s story is very familiar to me, the stress of going university seemingly bringing on a severe depression while later, with the added stress of exams, the voices appear. I’ve been told this story many times, often by people who I interviewed for the Maudsley Bipolar Twin Study, and then more recently by my clients. My recollection is that the majority of those who’ve related this particular sequence of events were women, but perhaps this was random or recall bias.
The author, via some combination of medication and therapy reports that she no longer hears voices, and that she has found a way to cultivate a supportive inner voice in their place. No point in me saying more, read what she has to say!
(I assumed the author was a woman from the photo, but it’s just a stock image, so who knows).
Today, a colleague sent me a press release for an exciting new treatment for psychotic symptoms based on a compound extracted from cannabis (CBD – Cannabidiol). This work by GWPharm follows up on some work I was vaguely involved in at the IoPPN, King’s College London. Encouragingly it suggests that CBD might be a much more tolerable and effective treatment for psychotic symptoms than the medications we already have.
But that’s not really the point of this article. The point is that in the press release we see the following:
… in 88 patients with schizophrenia who had previously failed to respond adequately to first line anti-psychotic medications.
This is one of my big bugbears. Glossing over the fact I’m not keen on the diagnosis ‘schizophrenia’, what’s the problem? This language is normal, this is how medical professionals really talk about their patients and their drugs. I’ve heard it hundreds of times in ward rounds, read it hundreds of times in papers.
The problem is that the patient did not:
FAIL to RESPOND.
FAILED to WORK
The patient was not inappropriate for the drug, the drug was inappropriate for the patient. Drugs are supposed to be designed to target specific difficulties faced by a patient, whether that be insulin to replace what is missing in diabetes or aspirin to prevent pain transmission or blood clotting. In ‘schizophrenia’ we face the problem that we still don’t know the aetiology of the person’s problems, and each person is different, probably because ‘schizophrenia’ simply does not exist in the same way as type I diabetes. The simple fact is, that if the drug does not work, it’s because it is targeting the wrong mechanism.
A random story by way of analogy: I once went on a camping trip with my brother. When we put the borrowed tent in the car, I remarked to my brother that the tent, which came in two bags, was remarkably light and small. For the next six hours, I thought nothing more of it; not until we turned up at the campsite, and started to set up camp next to our relatives’ warm cosy camper van. Exited to be out camping, I pulled the first part of the tent from its bag – it looked remarkably like a folding chair. Somewhat desperate, I hoped the the tent was even smaller and more lightweight than I’d imagined, and tried the second bag. A second chair popped out. We were left out in the Devon cold, with two chairs to shelter us from the elements.
Did I blame the chairs for not being tents? Of course not! When we were left cold and demoralised, did I blame my body for not responding to the ‘tents’? Of course not, I blamed the provider (me, my brother or the friend who lent the ‘tent’, depending on my mood) for not providing the right solution for the problem at hand.
What are we doing when we say the patient did not respond? We are clearly placing the blame on the patient. Yet we should be placing the blame on the state of the science, or on our poor understanding of the patient’s condition.
If the drug does not work, it’s not actually the drug’s fault (drugs are not sentient as far as I know), but I’d much rather say that the drug did not work, than the patient did not respond. This places the onus on us to improve our treatment
Before I finish, therapy does not get a free pass. We can also find papers that say: “the patient did not respond to therapy”. Rubbish! The therapy did not help the patient. It was the wrong therapy, the therapy was delivered incorrectly, or it was some other of the many factors that can affect the outcome of therapy.
If you are a medical professional who uses such phrases, I implore you to think about the implications of this stultified, automatic way of speaking and writing. Further I encourage you to suggest your colleagues do the same. Language is important, it shapes our beliefs and our actions, it shapes the way we see ourselves, and it shapes the way we see patients.
(PS. As we are talking about language. When I wrote this blog, I used the word patients, because that’s what we see in the literature. Re-reading, that word somewhat stood out to me. Health professionals often use ‘clients’ or ‘service users’, or when it makes more sense, just ‘people’. They do this for a variety of reasons, including to try and break down unhelpful power dynamics, feelings of ‘them’ and ‘us’ and the sometimes dehumanising effect of the words we use. Language is always changing, and it’s an ongoing struggle to make sure our use of language is as helpful as possible.)
Over the last few years some of you will have seen a viral video of a man singing along to Rhianna on the tube. If you’ve not seen it, all the better, have a watch (below) and as you do just have a little think about what’s going on. What are your first impressions of the singer and his audience?
The video was first recorded surreptitiously and posted on youtube in 2012, becoming a viral hit with over 2 million views. What was his audience thinking? For his fellow tube travellers we’ll have to entertain ourselves by interpreting their expressions. Youtube however, gives us a little more to go on…. some people found the video amusing:
Trying so hard not to bust out in uncontrollable laughter
…others admired his confidence.
Lol. Kudos to him, as funny as it is, I do love how ppl have such cofidence in themselves to do such things. As its nit in the norm to sing aloud on the subway/rail, whether you have a good voice or not.
….some gave their support:
Awesome! Keep on singing Alika. Let the stiff upper-lipped boring people jeer all they like. You are London.
….and sadly many others were just nasty or racist. Youtube’s comments section can be a dark place.
Yet, few if any of the comments really indicate any attempt to question what was going on in the man’s head (beyond those who accused him of showing off).
So what was going on? Well we don’t know exactly, but that man on the tube, Alika, has got together with Rethink (in a video) and the Independent (in an article) to tell us a little bit about what he was experiencing (Have a read and a watch, and perhaps compare your reaction to when you saw the first video). As he tells us in the Independent.
That year  a number of events in my personal life had taken their toll on my mental health. In just twelve months, my auntie died, my five year relationship crumbled, my savings were stolen, and two friends of mine were killed in violent attacks. It all started to overwhelm me, and I began to feel and behave differently.
I was going through depression, anxiety, manic episodes, self-harm, and voices and illusions in my head. But I kept it all to myself, and over time I became more withdrawn and erratic. Singing on the tube was a way to drown out my problems and escape. When you’re in the middle of a manic episode, you don’t think about what you look like or how you come across.
….A story very familiar to clinical psychologists working with bipolar disorder and psychosis. While some of my clients become ill without any clear stressors, they are in the minority. Most of the people I’ve seen have worked with have entered a manic phase following difficult life experiences. Alika’s story may seem extreme, yet it’s not at all uncommon among clients with mania and psychosis. We all have different breaking points, and these may depend on a mixture of our past experiences and our genetics. Cities like London do not help, feelings of alienation, racism, insecurity and violence are not uncommon, and are a particular problem for those from less privileged backgrounds (black Londoners are at particular risk of experiencing psychosis, for possible reasons that need another article).
But back to the comments…. the comments for Alika’s Rethink video are in stark contrast to those in the original video. There are not so many yet, but to give a flavour, here’s just one:
Brother am soo sorry when world star posted it people thought it was funny me being one of them if knew what you were going through i would have not even dare to laugh at that video.respect you for what you have done i too have anxiety when i am in public but its only getting better and better i will let my friends know about this soo they can apologize as well.:)
For me, this is a reminder that empathy is rarely automatic. We are generally quick to judge by what we see on the surface, but rarely take the time to imagine what lies under the surface, to ask ourselves what might be going on for that person opposite us on the bus or tube, or even over the breakfast table. We often jump to one conclusion and stick with it, that singing man is what? Selfish? Annoying? Super laid back and open? Cool? Attention seeking?
As Alika puts it (kindly).
I don’t want to make people feel bad if they laughed at the video of me singing on the Tube. I can see the funny side too, but I’d like to move on now. Viral videos have a life of their own and capturing someone’s behaviour for a few seconds in a day doesn’t ever show you the full picture.
Jumping to Conclusions (JTC) is something that is supposed to be particularly common in people with psychosis, yet in reality, we all do it, all the time. And just as it can be helpful for my clients to think of other explanations for their experiences, it can be useful for the rest of us too. On a bad day, we may tend to jump to negative conclusions, which just make that day worse. A classic example used in therapy is to imagine someone we know ignoring us when they walk past us on the street. What’s going on? On a bad day, well that person is clearly a total ass; on a good day, clearly they were preoccupied and did not see us.
Alika’s second video and article give us context, they give us a way of connecting to Alika. Suddenly, Alika is no longer a cartoon but a deeper, three-dimensional character. It’s no longer so easy to apply just one adjective. Now we are forced to consider Alika as a person with a past, present and future. It’s harder to be unkind, and easier to be kind. We have understanding , we have empathy.
Alika was kind and brave enough to give us that connection. The challenge is to make that connection more often and with less help.
In researching for a lecture on bipolar disorder, I came across this video. It’s simply text, set to Samuel Barber’s Adiago For Strings (perhaps the ultimate emotional induction music).
It’s been posted by Brian Miller (Parhamscan, bminternet43), on his youtube channel . It’s a relatively short film which covers a little of Miller’s early life and then details a manic episode, which led to his sectioning and hospitalisation. Miller’s is a story that is perhaps familiar to many others with a bipolar diagnosis, although his first major manic episode was probably later than average.
For the mental health professionals, the video would probably make a great resource for bipolar support groups, teaching, ward groups and perhaps in individual therapy. The comments below, as so many times when people share their experiences, reveal how valuable it has been for other people.
An interesting short film about Sue Morgan’s artistic way expressing and processing her experiences, as well as some of the science helping us to understand these experiences from a neuroscience perspective (in terms of changes in levels of oxygen in the brain, BOLD, the thing we think we measure with functional MRI).
As someone with a fair bit of experience in brain imaging, two things thing struck me straight away about this film. The first is the power of imagery, the second is how, it seems to me, imagery is working in very different ways for Sue Morgan and for the clinical researcher and the film maker.
For Sue Morgan, getting her thoughts out of her brain and down on to paper is a perhaps a means by which she can reduce the power of her experiences and make sense of them. For the film maker, images of brain scans and MRI machines perhaps help to convey a sense that the research is important, that it is ‘real’ and ‘scientific’. For psychiatrist and researcher Sukhi Shergill, seeing the activation on a brain scan, helps him to say that he believes that these experiences are real, and do so genuinely.
The film also makes me wonder about the strange tricks that filmmakers like to play. What we see here is not an image of a real MRI scanner, but a fake scanner. Putting a laptop into a real scanner would result in nothing less than a very unhappy laptop, and possibly, carnage. When Sukhi Shergill points at his bank of computer screens, he is presumably supposed to be in the middle of some serious hardcore scientific thought, while he’s probably mostly feeling a bit uncomfortable about having to make gestures at a touch screen whilst being filmed (conjecture of course). The visual language here is presumably supposed to make us take the message more seriously, to engage more with the film. Personally, if there’s no pictures of the scientist walking moodily down a long corridor, I don’t buy it. Or with less sarcasm, please filmmakers, more content, less nonsense.
There is however, a very important message in this short film, the experiences of people with psychoses are real. They are not made up, the person is genuinely hearing voices, seeing things, or experiencing the feeling that people are out to get them. This is why, when these experiences are appraised as negative, they can be genuinely terrifying. Out clients, have of course, been telling us this forever. All too often, professionals fail to grasp this, and this leads to a collapse in the relationship. In a sense, we should not need MRI scans to tell us this, they are simply correlates of our ‘lived experience’, they help us understand at another level, but they are no more valid that what the person is telling us about their experience. Yet, if brain scans can help professionals develop more empathy and understanding, great.
This house believes that CBT for psychosis has been oversold.
I’m glad to say that it was a well mannered and reasonable debate, with those on both sides presenting interesting cases. Although the actual question is perhaps not that interesting, the myriad of underlying issues are. Things like:
Does CBT for psychosis actually work?
If so, for what does it work best?
Which version of CBT for psychosis is most effective?
Which outcomes should we be measuring?
How do we match clients to therapies?
Does CBT for psychosis have to change the topology of positive or negative symptoms of psychosis to be useful? Or might it be enough to change a person’s relationship with their experience?
Are there other interventions that we would be better focussing on instead?
In the end, the motion was defeated resoundingly, with a large shift from the first vote at the beginning of the debate. Those for the motion, put this down to a triumph of anecdote over statistics. Of course, as psychologists and philosophers may say, it’s not events that matter, but what we believe about them and how we respond. An alternative belief is that perhaps the audience actually don’t think CBT for psychosis has been sold very strongly at all, regardless of its effectiveness. Or, perhaps people thought that the issues of CBT for psychosis are too complex to be encapsulated in the particular meta-analyses that were the primary focus of the speakers for the motion. There are many reasons why the vote could have gone this way, and without doing a survey, I could not tell you!
Response to Keith Laws.
One reason I’m writing this, is that I rashly described (over twitter) one of Keith Laws’s assertions as intellectually dishonest, when perhaps I should have said he was loose with his wording. He understandably challenged me to defend this claim. So I will do so here on my blog (as I’m not a very familiar with twitter, and don’t think 140 characters is useful for discussion). Before I go any further, I should declare a conflict of interest, I’m a clinical psychologist and much of my workload involves CBT for psychosis.
Unfortunately I don’t have a recording of the debate yet, so I don’t have his exact words, thus I’m going to address what I thought his point was! I remember Laws saying that the evidence says that CBT for psychosis only helps 5% of people treated. For the moment, you can find a reference to this on Alex Langford’s live take on what was said here at storify, and the tweet of the claim in question here.
Cognitive-behavioural therapy has a therapeutic effect on schizophrenic symptoms in the ‘small’ range. This reduces further when sources of bias, particularly masking, are controlled for.
And finds that (for example), the effect size on overall symptoms falls from -0.62 to -0.15 (95% CI –0.27 to –0.03), when studies with insufficient and sufficient masking are compared. (Always note the confidence interval. Even here, at this significance level, the true effect size might be as low as -0.03 or as high as -0.27).
My claim is that even if we take no issue with the way in which the meta-analysis has been carried out (and of course we might), and even if we temporarily accept the figure of 5% (I’ll confess I’m not sure exactly where this came from, some NNT calculation?), Law’s conclusion that CBT only helps 5% of people seems flawed.
One key reason for this, is that the meta analysis includes both treatment as usual and control interventions as comparators. Thus a more valid conclusion would be that CBTp helps only 5% more people than a mixture of treatment as usual (TAU) and control interventions such as befriending. To me, this is a quite different thing. For instance, it is possible that the control interventions were also very effective and thus CBT had a hard job getting significantly better results. As an example, let’s say in a study, befriending had a 40% impact on symptoms and CBT had a 45% impact. This would not mean that CBT helped only 5%, but 5% more, although the difference between interventions was only 5%.
A second reason not to accept this interpretation is that our clients’ wellbeing can be quite independent of the number and frequency of their positive symptoms. A person can for instance, continue having auditory hallucinations, but completely change their relationship to them, and thus reduce depression and anxiety, and increase quality of life. Thus CBT may help clients in the absence of a change in positive symptoms (the meta analysis that Laws was an author on, did not consider other outcomes such as depression and anxiety – key issues for our clients). Equally, if a client asks us first to help them with their panic attacks, that is generally what we do, yet progress here will not necessarily show in a measure of psychosis symptoms.
I’m in agreement with Laws in some senses. The literature can certainly be improved upon. Clinically, we often seem to see remarkable change, yet the literature at large, does not necessarily reflect this. This may be because CBT is not adding much to treatment as usual, or other interventions, but that we wrongly interpret change as related to CBT. Or, it may be because there are many different types of CBT, some better than others. Or it may be because we are measuring the wrong things. Or it may be that we are looking at the evidence too simplistically.
Incidentally, it was argued in the debate that it would take a huge number of extra significant trials to improve the effect size of CBTp in meta-analyses. This to me, shows a misunderstanding of CBTp. CBTp is not quetiapine, which is always the same. CBT is evolving over time and comes in many forms (from individual to group, from classic CBT to taste the difference Mindfulness Based CBT, from CBT for general psychosis to CBT for command hallucinations). Lumping all studies together as if it were the same, is thus not necessarily a good idea.
Whatever the explanation, it behoves us to rethink the way we have run our trials to date, in order to capture those outcomes that are most useful to service users. (I suspect Laws may not appreciate how difficult it is to get funding to run sufficiently powered studies, which may also explain how many studies are at the right side of his forest plot, yet non-significant). We also clearly need to continue to refine our treatment protocols. We are beginning to do this, with targeted interventions such as the COMMAND trial (among others). It’s a hard slog, but I for one, think the future is bright.
The badger of the animation is pretty menacing, with a definite streak of dark humour, and definitely not a badger who’d give up easily. But Henry is clear:
psychosis is nothing like a badger… and tends to let go after a while.
Henry says made this animation……
to raise awareness concerning the signs and symptoms of Psychosis, in the hope that sufferers (and those around them) can seek help without fear, judgment, or hesitation.
Having walked away from two episodes of psychosis myself, I felt that the beginning stages of the illness brought me the most fear and confusion. It was a hazy, in many ways unhelpful diagnosis, that was difficult to talk about – both for its stigma and lack of clarity. I’m hoping that this video might help bridge that gap, giving sufferers, as well as their friends and relatives, a simple insight into how and why Psychosis affects people the way it does.
I know little more about Henry Gale, other than the fact that he’s a clearly talented filmmaker, has a few other videos on Vimeo, and has a tumblr page henrysgale.tumblr.com, which has among other things, info about the making of the film. Anyway, I’ve little insightful to say tonight… so, if you’re still reading, go watch the film.