Doctor, it hurts… all the time: The London Pain Consortium
The London Pain Consortium:
- organised an A-level workshop based on experiments on the biology of touch and pain
- organised two art workshops for patients and researchers
- mounted an exhibition, Pain INSights, at Guy's Hospital in London
- reached an estimated audience of over 100, including 20 staff members, four teachers, 45 local schoolchildren and 55 members of the public (not counting visitors to the exhibition, which was in a walk-through space in the hospital).
Chronic pain, which persists day after day, is as hard to put out of your thoughts as it is to convey to those who do not have it. Blending personal testimony with artwork can help. The London Pain Consortium (LPC) found new ways to do this, intending to increase the understanding of what patients experience, generate interest in research into the mechanisms of pain and enhance researchers' awareness of the effects of the condition.
Chronic pain is a surprisingly common affliction: as many as one in five people have chronic pain. It has a range of causes, although arthritis is probably its most common cause. It is hard for people who have chronic pain to make other people understand how it feels, and it is difficult for doctors to control. The LPC brings together geneticists, neurobiologists, physiologists and clinicians, working at King's College London and 11 other institutions in the UK and Europe, to find better ways of tackling this demoralising condition.
The approach
The King’s College group took their work outside the lab in two ways. A series of art workshops blended the perceptions of people with chronic pain and researchers' less intimate experiences to create poetry, dance and visuals. These formed the core of an exhibition at Guy's Hospital from November 2011 to January 2012.
The LPC also developed an A-level workshop for local sixth-formers, testing a series of experiments on the biology of touch and pain that gave the students a taste of the scientific approach to sensation.
The aims of the art workshops were two-fold. They allowed patients and scientists to share experience and to gain insights into pain from each other's perspectives. Combining these would lead to new artworks, which could represent the aspects of pain to a wider audience.
Originally, the LPC planned to create an exhibition displaying work from experienced artists who had collaborated with scientists from the Consortium. The idea of workshops involving patients grew out of discussions about ways to produce relevant artworks for display, and the researchers worked with Lucinda Jarrett, artistic director of Rosetta Life and a Wellcome Trust Clore Leadership Fellow, to devise ways for researchers and patients to come together.
In Jarrett's vision, the workshops would lead to shared insights into chronic pain, "from the scientific to the artistic, experimental to the experiential, visible to the invisible". With her help, says researcher and organiser Philippa Moss, "we were able to allow scientists and pain patients to interact with each other in such a way that both groups could understand the language and perspectives of the other."
The project brought in LPC scientists from a range of experience and disciplines, from PhD students to principal investigators and from bioinformaticists to neuroanatomists. Patients joined in from a local pain management programme based at St Thomas's Hospital in London. A wider call for participants also went out through the website Pain Exhibit, which features artwork by people with chronic pain.
The first session saw scientists and patients working with words. The people running the workshops developed their own methods for helping researchers – mostly neuroscientists - communicate with patients. They first used laboratory images provided by the scientists to initiate discussion. As Lucinda Jarrett put it: "The poetry workshop acted as a good introduction to working with imagery through the comfortable medium of words and language. I encouraged people to write without thinking of metre, as if they were speaking to a friend."
The second session posed more of a challenge, certainly for the researchers. It was built around touch and movement - not scientists' normal ways of communicating.The lab workers did not know quite what to expect, and Philippa Moss thought that best: "I tried not to tell them too much!"
A specialist facilitator, Chris Thompson, helped to set up the interaction. He sees "a deep relationship between movement and language...Giving shape to thought seems to help us make sense of the world, and movement is also intimately connected to feelings." He intended that participants should "embody, physically, the journey from the pain receptor to the expression of pain; started by pain scientists, finished by pain patients, walked by both".
To achieve that, both patients and scientists needed new ways of expressing themselves. The scientists worked in pairs with patients they had met in the previous session, so a certain level of trust had already been established. To begin, each patient told a pain story by 'drawing' on a researcher's back with their finger, while their partner tried to visualise what they were relating.
The participants then adopted body shapes that expressed different kinds and levels of pain. Patients moved between the positions depicting the most pain and the least, and back again. For some, this movement was painful in itself, so the workshop experience tapped into pain directly.
A photographer captured the results, some of which found their way into the exhibition. The exhibition, 'Pain INSights', which was displayed in the atrium of Guy's Hospital, contained a selection of scientific images alongside poetry and photos from the workshops.
They were complemented by a selection of images by the artist Deborah Padfield, who also works with pain patients and researchers. Padfield was involved in the early project discussions, and the researchers invited her to curate a selection of her work to incorporate her expertise in translating perceptions of pain into the exhibition.
The school workshops, by contrast, were firmly on the scientific side of sci-art. They featured some hands-on work in basic biology and gave students a chance to work with scientists and hear how they tackle problems. The aim of these workshops was to share the fascination of doing experiments. According to LPC director Professor
Stephen McMahon: "Our work is very practical, and I feel much science teaching is losing touch with that. There's something very memorable about doing experiments. Doing things practically is where science comes from."
The LPC researchers built on their experience running a summer school for postgraduate students and brought groups of schoolchildren and their teachers into the teaching labs at UCL. Their tour began with a short talk on sensory neurobiology, which was followed by several experiments related to some vital questions: How sensitive is our skin? How can we test this, and does it vary from place to place? How do we sense the position of our limbs in space (proprioception)? What is first and second pain? What causes muscle pain and cramp? And why do some people feel more pain than others?
The tour concluded with a review of quantitative evidence and statistics (a topic requested by teachers) and a question-and-answer session.
The afternoon called for strong attendance from the scientists, to oversee the experiments and help explain what was going on. "Fifteen of us did it in the teaching labs at UCL," says McMahon. "We took a lot of our equipment with us, set up half-a-dozen experiments, and the students and teachers moved round the lab."
As with the art workshops, there were benefits on both sides. The experiments were designed to complement the school curriculum, and "the schools were happy to have a day out…it gave them a taste of scientists at work and university life". For the researchers, there was the stimulus of thinking how to explain the biology involved, and mixing junior researchers with professors proved enjoyable.
"It was great, actually," says McMahon. "We found the experience of working together as a group really rewarding." He also sees the experience gained by graduate students and postdoctoral students standing them in good stead if they get involved in university teaching.
The art workshops were revealing for the researchers in a different way. "A lot of the chronic pain patients were very pleased and enthusiastic," says Philippa Moss, "and researchers were all very surprised by what they gained." Some found it quite emotional to get so close to a problem they normally view from the bench. As a researcher in the lab, says Moss, "you can lose sight of why you're doing it". Everyone has some perception of pain - we can all say we have had a headache or a toothache. But chronic pain is there constantly, and it prompts fear and anxiety about the future. Moss was writing up her thesis at the time, and came away convinced of one thing: "To hear first-hand what it is like to deal with chronic pain renews your motivation."
Next steps
Both sides of the project look set to lead to follow-up work. Some of the experiments used in the school workshops can be repeated in school labs, if enterprising teachers set them up, and the LPC wants to repeat the university-based sessions. They hoped to arrange a series of workshops at the outset but decided to begin with one: now they are sure it was successful, McMahon says, "we are committed to trying to make this a regular event".
On the artistic side, Moss has kept in touch with one of the chronic pain patients who is also an artist, and they are hoping to do some more work together. In addition, an online forum or a website could be created to develop the interaction between patients and scientists. Her final word? "I hope we can do more!"
Further information
Visit the London Pain Consortium website.
