Below are links to the WebPages of organisations, publications, resources and projects that relate to narratives of illness in one way or another.
Digital Stories from people with Mental Illness – Mind Cymru
Mind Cymru is Mind’s force for change in Wales. Informed in everything theydo by people with direct experience of emotional distress, theycampaign vigorously to create a society that promotes good mental heath and that challenges mental health stigma. The stories presented here, created by people who live with mental illness, are part of that work.
The George Ewart Evans Centre for Storytelling
The George Ewart Evans Centre for Storytelling at the University of Glamorgan is dedicated to promoting, teaching, developing and researching storytelling in all its forms. The centre consolidates and builds upon the University of Glamorgan’s existing strengths in storytelling and is named after the socialist and oral history pioneer who was born and raised in the former mining community of Abercynon, a stone’s throw from the University.
‘Telling Stories’ has been developed to promote understanding among all health professionals of the impact genetics has on real life, and its relevance to healthcare practice. The website draws on stories that cover a range of genetic conditions including single-gene disorders (with autosomal dominant, autosomal recessive and X-linked inheritance patterns), chromosomal abnormalities and multifactorial conditions such as cancer and heart disease.
The GAMY Project
Standing for Genetics And Merthyr Youth, the GAMY project worked with a group of young people aged 16 to 19 years old from Merthyr Tydfil in South Wales and learned about their ideas and attitudes towards genetics.
Health Talk Online
Healthtalkonline is the award-winning website of the DIPEx charity (standing for Directory of Patient Experience) and replaces the website formerly at dipex.org. Healthtalkonline lets you share in more than 2,000 people’s experiences of health and illness. You can watch or listen to videos of the interviews, read about people’s experiences and find reliable information about conditions, treatment choices and support.
A Dignified Revolution
‘A Dignified Revolution’ seeks to improve the care of older people in hospitals by highlighting their experiences and stories. The organisation was founded in January 2008 and was born of the distress felt by relatives of elder people who had negative experiences with institutionalised medicine.
The Storybank Project
The Cancer Genetics Service for Wales (CGSW) offers a range of services, such as risk assessment, genetic counselling and genetic testing, for people with a family history of cancer. The StoryBank is simply a bank of stories from people in Wales living with cancer, at risk of cancer, or who have been on a journey through CGSW. Hearing real stories about people’s experiences can help those affected by cancer and raises awareness of cancer genetics amongst the public and health professionals
Storytelling can be a powerful tool to communicate what people have really experienced, rather than what others imagine they have experienced. StoryWorks offers expertise in the field of gathering and sharing stories based on real-life experience and is working with a range of organisations looking to learn from the stories of the people they work with and for.
Global Health Narratives
Global Health Narratives for change is a network of educators, researchers, health practitioners and activists committed to reducing global health inequity through education. Their mission is to use narratives to educate youth about the health problems that occur everyday in order to promote a more global perspective and inspire a desire for change.
Patient UK Experience
Whether it’s experience of a medical condition, a medicine, a treatment, or a service, it is very likely that someone has been in a similar situation. This health forum lets you read about and share experiences, and post medical images.
Radcliffe Publishing Patient Narrative Series
The books in the Patient Narratives series provide first-hand accounts of experiences of illness. Sometimes gruelling, sometimes uplifting, each personal description vividly illustrates the highs and lows of being a patient, where treatment can be good or bad, unsuccessful or successful, and the insights are invaluable.
The British Society for Literature and Science: www.bsls.ac.uk
The Wellcome Trust: www.wellcome.ac.uk
Cardiff University: www.cardiff.ac.uk
University of Westminster: www.westminster.ac.uk
University of Glamorgan: www.glam.ac.uk
Collaborative Interdisciplinary Study of Science, Medicine and the Imagination Research Group (CISSMI): http://literatureandscience.research.glam.ac.uk/cissmi/
Journal of Literature and Science: www.literatureandscience.org
Literature Wales: www.literaturewales.org/