Introduction
I am currently working on the development of an animation titled In Spate, with animator Jeremy Richard. The project is funded via the Tilly Hale award and the motivation behind the project is to depict elements of my own lived experience of having had Hepatitis C.
Initially I contemplated writing a journal article, which would mainly have reached an academic audience, but this did not seem enough, I wanted to tell my story as a patient and an individual in a way that would reach other people who are, or have struggled with illness or similar adversity. I also wanted to reach people who might benefit from hearing about a patient’s experience from this perspective, people such as policy makers, clinicians and the general public; my hope is that this animation will be relevant to a broad audience. So, what I will do today is talk you through some of the relevant points in the process of creating this piece of work, which may then help you if you are thinking of doing some patient and public involvement activity.
I must add that the animation is not yet completed, this has partly been due to the impact of Covid-19, and partly because animation is a very time intensive medium and we have taken on an ambitious project; this has involved editing and re-writing parts of the story and hopefully improving the film. Although your own ideas for a piece of patient and public involvement activity may be quite different, the big step is moving from having an idea, to actually starting to plan and create something tangible from that.
My motivation
My motivation started from wanting to convey the lived experience of liver disease, one that is not revealed in blood tests and hospital appointments, an experience that is shaped by doubts, fears, uncertainty and, due to the associated stigma, one that is hard to talk about. I’m guessing many of you will know something about Hepatitis C, but for those of you who don’t, it’s a viral infection that is passed on through blood-to-blood contact such as an unscreened blood transfusion, sharing needles, or unsterilized tattooing or medical equipment. It causes liver disease and has been called a silent epidemic because for some people it can be many years before they get a diagnosis due to diffuse and varied symptoms, and because it is not regularly tested for. This latter point is borne out in a new report based on findings from a survey of liver patients by the British Liver Trust. In this project I want to overcome the silence around this condition whilst also demonstrating the social and financial as well as physical challenges that frequently accompany illness and disease.
– 50% were diagnosed when they already had symptoms and one out of five of these were diagnosed in A&E
– 25% of people felt that they were diagnosed very late at a point where there were very few or no treatment options.
Patient Survey February 2020, British Liver Trust
The title of the animation ‘In Spate’ has a layered meaning, in the animation the title refers to how Jane’s blood is flooded with the virus, and also how her life is then flooded by ongoing change. We came up with the title after talking about how, in Jane’s life, and my own, illness brings with it a flood of issues and challenges.
Spate: a flood, an inundation, turbulent water characteristic of a river in flood. A sudden or violent outburst of some quality, feeling; a large series or sudden excessive amount of words, events.
At around the time when we were thinking of a suitable title, a local river was flowing very rapidly after heavy rain, and the sight and sound of it had been really impressive. Somehow, during discussion of some possible titles, I recalled how the river was flowing at high speed, and together we came up with the title, one that I would never have thought of on my own. The point I want to make is that the creative process, whatever topic you are working on, can be enriched by chance occurrences, by seemingly inconsequential observations, which in our case stemmed from me walking by a flooded river.
The Project
We began with the idea of a protagonist, a character who goes through some of the experiences I had, but who is sufficiently different to me that there is no direct comparison – this fictionalised character is called Jane.
Jane starts to feel unwell, with extreme fatigue, joint pain, and various other symptoms, but these are not sufficiently checked out by her GP and it is suggested that she has depression. Jane struggles on, but it is increasingly difficult for her to cope and she feels very alone and increasingly worried by what is happening to her.
The day time feelings of illness and dis-ease are followed by night times of bad dreams and fears over how she will be able to endure this when there is clearly something very wrong, but which is not recognised by the medical establishment. For me, this is an important point, patients’ experiences of pain and discomfort are very real, whether they get a clear diagnosis or not, and compassion is a type of medicine, it occurs when someone tries to see things from your perspective, or imagines themselves in your place. As Shapiro notes:
To see all humanity as… struggling enjoins humility, and cultivates common bonds… the gap that separates self and other is not as large as we might think.
Shapiro, 2008, p23
This type of understanding for another person does not make the pain go away, nor does it pay the household bills or cure disease, but the ongoing struggle is alleviated a little when someone demonstrates support. The clinician James Freeman is an advocate for patients with Hepatitis C, and he has stated that ‘Hep C has no funding because it has no voice, getting patients to speak to (and for) it is vital’. And to paraphrase from a podcast by the London School of Economics,
In order for marginalised people to be recognised and validated, their voices and experiences need to be heard, seen and represented by them and those advocating for them.
LSE podcast, Being disabled, 28/11/2018
It is probable that for some patients, generating the extra energy to advocate for themselves is not viable, and just getting through the day is a sufficient burden. As the quote from Audrey Lorde states:
‘… silence and invisibility go hand in hand with powerlessness’
(Audrey Lorde in Waples, 2014, p162).
These factors are what now press me to speak up on behalf of myself and others like me. When we take up a piece of patient and public involement (PPI) activity, we are, ideally, acting to make things a little better, through advocating, through sharing some insightful information, through giving a voice to, or acting from the viewpoint of those who may not have been fully supported or engaged with. In the animation we depict Jane’s friend Moona as someone who shows kindness, she comes alongside Jane and tries to help her in her darkest moments. Jane finally gets diagnosed with Hepatitis C, and she becomes too ill to work anymore, she loses her house, and struggles financially as well as physically and emotionally. I know personally the demoralising experience of applying for benefits, how much energy it takes to put in an application, and how crushing it is to be turned down for support.
When we are devising a piece of PPI, we should keep in mind that the patient is not just an atomised individual, and they do not only have physical symptoms, they are also embedded in, and must deal with a complex web of interconnections. For example, some people may have a support network to help them, while others may not have any safety net. Indeed, as we are seeing at the moment with the pandemic, a virus does not just impact upon peoples’ physical health, it has financial, sociocultural and existential outcomes, it touches on the very nature of our survival and the contingency of life.
Developing an idea
If you are wondering how to share an idea that you have been developing, or how to build your project, consider how you or someone you know quite well likes to receive information. Would it work to use a text-based approach or, as we are doing, would a visual style work, maybe it is a mix of the two. Speaking from personal experience, working on an animation has been a move into something very different for me. I had no references to draw on and it has only been through working with the animator that I have shifted from devising and presenting my work mostly using words, to merging imagery, dialogue and sound. This has entailed learning a new style of communication and I now recognise how animation and storytelling can create a space in which concepts and feelings are portrayed through words and images. Using animation creates a juxtaposition, a pause between words, imagery and our expectations, offering new ways of thinking about issues:
Animation… is increasingly being used as a tool to evoke the experiential in the form of ideas, feelings and sensibilities. By visualizing these invisible aspects of life, often in an abstract or symbolic style, animation that functions in this evocative way allows us to imagine the world from someone else’s perspective.
(Honess Roe 2011, p227)
We have had the freedom to develop the story and plan the visual elements without any specific parameters, and this can feel like a risk, as I’m usually accustomed to being given a reasonably tight structure in my role as a qualitative researcher. This freedom has raised points of concern for us such as about refining the storyline and deciding what to include and what to leave out. Nevertheless, I have found that collaborating with someone from a different discipline is a highly engaging, creative process, that has generated new ideas which would not otherwise have emerged. Bearing this point in mind, I would encourage you to test your ideas out with other people, or try planning in a different way than usual. With reference to our animation, not everyone is going to want to watch it, but there may be some individuals who would never read a written piece of work, but who might be interested in watching a short-animated film. Therefore, think not just about the similarities but also the possible diversities among your potential audience, maybe they all have the same condition, but their preferences and life experiences will be varied. Due to advances in technology it is now much easier to use a range of digital methods to create a piece of work, and there has also been a move toward drawing from and collaboration between differing disciples, which means that we can try new approaches. As Jenny Tarr observes:
‘New technologies are making images, sound and video far more accessible, potentially further blurring the boundaries between the arts and social sciences’.
(Methods news, Autumn 2014)
Whether you are producing a patient information leaflet, a video, a talk, or a workshop; whatever it is, think of it as a conversation, a dynamic interactive process with those you wish to engage with. For example, I’ve drawn inspiration from the work of DV8 who are a Physical Theatre company since I watched their production titled ‘John’, which was based on interviews conducted by DV8’s Artistic Director, Lloyd Newson. It combines spoken word with movement to create a dynamic piece which follows the life story of one man. (DV8 Physical Theatre, Education pack for students and teachers).
For you, maybe there is a piece of music you like, the lyrics of a song, a novel, a game you’re playing, a documentary or film you like, any of these things may inspire you even though they are nothing to do with the PPI you have in mind. Personally, I think that we need to be reminded of the resourcefulness of our inner-self, that subconscious world that only we know. As an example, when I was doing my PhD I would get to a point where I was tired or just stuck for ideas and, rather than thinking, ‘oh I can’t think about this anymore today’, I would stop working, go and do something else, but somehow keep the window on the problem open in my mind. Sometimes when we get frustrated with ourselves, with our lack of ideas or our low productivity, we shut our mind off, but I do believe that when we engage in other activities, from gaming to taking a walk, playing with our children, our pets, or doing sports, our inner mind will keep working if we allow it to. Perhaps the words of a specific patient have stayed with you, or you may recall an event from your own life or from someone close to you, maybe that will give you a spark, a starting point. To return to our current animation, in it, we see our protagonist Jane dealing with the news from her consultant that she is not eligible for the new generation of anti-virals that came out of clinical trials in 2013. Due to their cost, only patients with cirrhosis were eligible for these life-changing drugs, a rule that has since been changed, and Jane has to find a way to gain access to the drugs. Just as I did, she joins a Buyer’s Club, which is a way to legally import the drugs for personal use from India where they are sold much more cheaply. Once she takes the drugs, Jane rapidly begins to feel better, and starts to engage with life once more, although it will take time to deal with the physical, mental and emotional recovery from serious illness. At this point in Jane’s story we leave her, the key points from her experiences have been illustrated, points that may resonate with others around issues such as struggling with unexplained symptoms, being taken seriously by the medical profession, getting a diagnosis, dealing with the stigma that accompanies some conditions, and the associated financial challenges that patients go through when they are ill.
Conclusion
We hope that, upon completion, these points will make the animation meaningful to a broad audience, and that different elements of the story will resonate with different people. Due to the circumstances we are currently facing because of Covid-19, it is possible that there is now broader insight on the way illnesses such as viral infections can shift and reshape normality. Our aim is that this work will connect with those who are encountering issues with their health or other areas of their life, and that the outcomes generate compassion, insight and support.
Updates on the progress of the animation can be seen on my website and please feel free to contact me if you have any questions.