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26 January 2021

From feeling to knowing – putting imagination and lived experience at the heart of understanding illness

The symposium set out to explore the lived experience of patients, examining an alternative way of thinking about illness

Scene from an arts intervention with Stroke survivors
Stroke Odysseys, image credit: Pari Naderi

An expert panel, composed of Professor Havi Carel (University of Bristol), philosopher of medicine, who has developed a phenomenological approach to the study of the experience of illness; Lucinda Jarrett, Rosetta Life & Stroke Odysseys Artistic Director; Dr Isaac Sorinola, Senior Lecturer in Physiotherapy Education in the Department of Population Health Sciences at King’s College London examined questions such as

  • why experience of illness is poorly understood
  • why giving existential meaning to patients has a therapeutic effect and allows them to regain control
  • how to capture the experience of living with chronic illness given that a patient’s experience is ever changing
  • how the arts play a role in imagining and transforming our lived experience
  • how we can develop phenomenology as a way of thinking about life after/during chronic illness and enabling people to live a fuller life through the arts
  • how we can help patients communicate their lived experience through the arts and how artists, scientists and clinicians can better understand its meaning.

Central to the presentations were contributions from two stroke ambassadors from the Stroke Odysseys programme, Pauline Boye and Dr Jawad Mohammed, who spoke about their experience of illness, how the arts have helped them transform that experience and their role as stroke ambassadors.

Other contributors presented different perspectives on the key themes of the symposium and represented a range of disciplines, including the arts, clinical health, education and research.

  • Professor Carmine Pariante – Professor of Biological Psychiatry at the Institute of Psychiatry, Psychology & Neuroscience and PI for the SHAPER programme
  • Dr Phil Clatworthy – consultant stroke neurologist at Southmead Hospital in Bristol, UK
  • Elizabeth Mansfield – Performer and Singer who has been involved in the Stroke Odysseys programme for over 3 years
  • Clare Gordon – joint post as Research Fellow at University of Central Lancashire and Nurse Consultant in Stroke Care at Lancashire Teaching Hospitals NHS Trust
  • Dr Caroline Ellis-Hill – Senior Lecturer from Bournemouth University who is interested in Humanising practice by using a lifeworld approach. She is currently working with Stroke Odysseys group in a Participatory Action Research Study exploring how to develop the work of the Stroke Ambassadors in the stroke clinical pathway.
  • Dr Veronica Rodriguez – Teaching Fellow in Theatre and Performance, University of Reading

Among the attendees were UK-based and international clinicians, researchers, education specialists, therapists from different disciplines, artists and creative practitioners, the wider voluntary and community sector and importantly those who were willing to share reflections on their own lived experience of illness in relation to the arts and phenomenology.

Chairing the symposium, Baroness Deborah Bull, Vice President & Vice-Principal (London) and Senior Advisory Fellow for Culture, led the audience through a highly stimulating Q&A session which drew out further topics, including

  • a call for a wider conversation about multi-disciplinary arts-in-health research methods
  • how best to build the evidence base for the innovative arts approaches featured in the symposium
  • acceptability of the research methodologies being developed and how to embed the learning from these projects as part of curriculum development for students.

Challenging questions were put to the panel which went to the core of the debate around examining an alternative way of thinking about illness and seeing adversity as opportunity.

When serious illness results in serious debilitation or death, how do you still apply the framework that illness is an opportunity?

Question from the audience

In summing up the symposium, Professor Havi Carel reiterated the importance of ‘honouring the self’ and celebrating the achievements of those who face severe adversity as a central aspect of shaping the healthcare journey.

Further reading

Illness as transformative experience 

Carel, H., Kidd, I., & Pettigrew, R., The Lancet vol. 388 (2016)

Phenomenology of Illness – Chapter 5: Bodily Doubt

Carel, H. Bodily Doubt. Phenomenology Of Illness,(2016)

Illness: The Cry of the Flesh 

Carel, H. Illness: The Cry of the Flesh (2019)

Embodied Enquiry: Phenomenological Touchstones for Research, Psychotherapy and Spirituality

Todres L. Embodied Enquiry: Phenomenological Touchstones for Research, Psychotherapy and Spirituality (2007)

The Organism-Person-Environment Process

Eugene T.Gendlin “Arakawa and Gins: The Organism-Person-Environment Process.” Inflexions 6 (2013)


Severe stroke

Professor Catherine Sackley presents her research on rehabilitation for stroke survivors.