The Glamorgan-based Telling Stories Understanding Real Life Genetics project is delighted to report that the 100th story is being published on its website today! Launched in 2007, the project, led by Professor Maggie Kirk (of the Genomics Policy Unit, University of Glamorgan and lead Professional Specialist, Nursing Professions, at the NHS National Genetics Education & Development Centre), was developed to help health professionals understand the impact genetics has on people’s lives by using real-life stories from individuals with, or at risk of, a genetic condition, their family members, carers and healthcare professionals.
The freely-available stories cover a range of genetic conditions from cystic fibrosis and Down syndrome to diabetes and breast cancer and are linked to educational frameworks for nurses, midwives, GPs and medical students and include a toolkit of learning activities.
The 100th story describes Siobhan’s experiences of living with two complex genetic conditions, type 2-diabetes and the inflammatory condition ankylosing spondylitis, which are caused by a combination of genetic and environmental factors. On her experience of being a storyteller, Siobhan says:
“I was really pleased to be able to tell my story; it’s a good way to raise awareness of people like me trying to live a full life while dealing with complex problems (in my case ankylosing spondylitis and type-two diabetes). Too often I find that health professionals only see/deal with the part of you that interests them and not a whole person. The Telling Stories resource is a good way for us ordinary people to be ourselves and hopefully that is what the health professionals will see as well as understanding more about genetics”
The storytellers, who represent a variety of ages and backgrounds, are at the heart of Telling Stories, and the project team is passionate about working in partnership with them to ensure that their voices are heard. Paula, whose son has a rare chromosomal condition, says “I am glad I have told my story and I really hope people will understand how hard it can be when faced with the news your child has a disability.”
Geraint died suddenly at the age of 24 from an inherited heart condition (Brugada syndrome). On telling their family’s story, Geraint’s mother said “I feel the more people that read about experiences such as mine, the more understanding and help is likely to become available… this is what I set out to do, tell the people who are able to help people such as myself.”
Since January 2009, the website has received almost 41,000 visits and more than 193,000 page views from users in over 150 countries and was ‘Best Use of New Media’ winner at the 2009 Association of Healthcare Communicators awards. Dr Rhian Morgan, Telling Stories Project Officer, said “I am very pleased that we are now publishing the 100th story. Working with the storytellers is inspiring and their stories are powerful, engaging and memorable. Hearing their experiences is key in helping to improve our understanding of the relevance of genetics to healthcare practice and the impact genetic conditions can have on those affected. The feedback we receive from the storytellers who participate in the project, and from those using the website, is overwhelmingly positive. That the 100th story is about to be published is a testimony to the commitment of the storytellers and all those involved with the project”.
The Telling Stories project team represents a collaborative effort between the Genomics Policy Unit at the University of Glamorgan, Genetic Alliance UK, Plymouth University and the NHS National Genetics Education and Development Centre, which hosts the website.
Professor Kirk said “I’m delighted that Telling Stories is now celebrating its 100th story. As a health professional educator, I find the site to be an enormously valuable resource and the stories never fail to stimulate discussion amongst students. This is so important when we are trying to get health professionals to understand how genetics impacts on the lives of individuals and families.
The resource has been developed by working in partnership with storytellers. Siobhan has worked closely with Project Officer Dr Rhian Morgan to help promote the resource for our 100th story celebration. Of course, all of our storytellers are important to us and we do regard them very much as the ‘senior partners’ – we certainly couldn’t do it without them!”
If you are interested in finding our more about the project or participating as a storyteller, you can contact the team by email: tellingstories@glam.ac.uk or go to the Telling Stories website.