In this blog, Nick Sarson, communications co-lead, speaks to Afra Kelsall and Lucy Gallagher, who are part of the NIHR’s Mental Health Implementation Network, about how the films are relevant for people working in health, social care and education settings, as well as family and friends.
Some years ago, a close relative experienced a period of severe mental illness and psychosis and I visited them on an inpatients ward where they were being cared for. As they tried to explain the realities of their world, its coded messages, imminent threats and watchful eyes, it seemed that they were isolated in a strange and frightening parallel existence.
For anyone who has experienced psychosis or been close to someone who has, this sense of parallel existences and their isolating effects is likely to be familiar. A series of five new short films commissioned by UK arts organisation Artangel seeks to challenge cultural stigma and increase empathy around psychosis.
The Directors is a collaboration between Artangel, artist Marcus Coates and five people in recovery from different lived experiences of psychosis, four men and one woman. Following extensive meetings with Coates, each individual chose a location of personal significance in which Coates was filmed embodying and performing aspects of their own experiences.
Positioned behind the camera, each individual is empowered in the creative process, directing Coates in a restaging of episodes from their lives. During the filming, Coates received instructions from each director through an earpiece and was able to speak to them, leading to a dialogue which forms a key element in each film.
The five short films were first exhibited in Pimlico in 2022 and then screened at Kings’ College London at the Institute of Psychiatry, Psychology & Neuroscience and Science Gallery, London. Together with Afra Kelsall and Lucy Gallagher, who are helping to implement evidence-based mental health interventions in England through the NIHR’s Mental Health Implementation Network (MHIN), we watched one of the films, directed by Lucy Dempster.
Lucy Dempster was 14 years old when she started to experience symptoms of psychosis. The 21 minute-film is set in a small bedroom in a flat, the action contained within this space. It opens with Marcus trying to tune into a hubbub of background voices received through an earpiece. As he does so, more controlling and malevolent voices come into the foreground. At times the bedroom is clearly a real place in a block of flats somewhere in London, at others a film set with flimsy walls and then a scaled-down model. For the viewer, this shifting of perspective adds to the uncertainty of the experience.
The director, Lucy, describes to Marcus some of the figures in her mind that she lives with. They include ‘110’, a male silhouette, who watches and stares constantly, “terrifying because it never leaves, but terror turns into a weird kind of comfort,” says Lucy; and ‘17’ – a clown girl, with sharp fangs, dark eyes, bleeding feet and carrying a balloon, who Lucy instructs Marcus to draw. Within these frightening and claustrophobic conditions, it’s easy to see how Lucy came to question her reality. Lucy even doubts the existence of the clouds, sky and trees outside the window, all part of “the simulation,” she says.
Caption: A still from The Directors: Lucy, Marcus Coates (2022). The Directors is produced by Artangel and commissioned with Art Fund Support.
I asked Afra and Lucy Gallagher what they thought of the film, especially in the context of their work with the MHIN.
Lucy Gallagher: "For me, this particular sentence in the film really underlined the intensity of the experience of a psychotic episode. On a personal level, I found watching the film incredibly insightful, though at times upsetting. A close relative of mine regularly experiences psychosis, and I realised while watching I have never properly understood how it can fully grasp someone’s mind and body."
Afra: "Having very recently cared for my 17-year-old son during a first episode of psychosis, it was uncomfortable watching at times. Marcus was absolutely right – it’s very difficult for most of us to even start to imagine how scary it must feel to lose our grip on reality. When this is happening to someone close to us, they often cannot properly explain what is happening. Seeing and hearing this version of Lucy’s experience made me feel hopeful – she had experienced something similar to my son, but is now in recovery and well enough to produce this film, talking about a very painful experience."
Lucy: "Lucy’s film was the second film in the series I watched. My first thought when the voices in Marcus’ earpiece began was how different it was from the first film I watched directed by Marcus Gordon. I felt the different experiences of each director as if I was in the room.
We cannot fully understand how psychosis must feel without experiencing it ourselves, but these films are certainly one of the most thought-provoking portrayals many people will have seen."
Afra: "All of the films are quite different to each other, reflecting the individuals’ experiences of psychosis. For this reason, the films are very successful in demonstrating the breadth and complexity of these symptoms. What they had in common was the emotional toll on each person, often facing conflicting feelings of fear, euphoria and confusion."
Afra: "I think these films could have a huge impact in clinical education in general. It is not only mental health clinicians who will find themselves caring for people experiencing psychosis. It is crucial that practitioners can identify the signs and have some empathy if someone is psychotic. Unfortunately, my son experienced very poor care as well as some excellent examples. He was almost turned away from A&E when he first presented in crisis. Huge assumptions and associated judgments were made about the cause of his symptoms. "
These films could play a part in educating doctors, nurses and allied health professionals to recognise and respond more appropriately to psychosis.
Lucy: "The series cleverly exemplifies how we cannot generalise or oversimplify what psychosis can do to a person, really showing the value of involving a range of people with lived experience in research studies. A coping mechanism for one person, may not work for another. I would say that this concept is how research studies should be managed: directed by lived experience."
"As Artangel already does, I think the films must come with a trigger warning. We should never make assumptions about someone’s lived experience. If you were to consider sharing these films with colleagues, friends or family, always ensure they are aware of the content and know where to get support if they need it."
It was really inspiring to see this young woman speaking so confidently about her experience. Lucy spoke about what recovery means for her and this reminded me that it will mean different things to different people – support and treatment services should be defining successful outcomes according to individuals’ aspirations.
It was amazing to hear about Lucy’s journey. As a young person, she has contended with so much, but has managed to translate her experience into something that gives hope to people struggling with it themselves.