Professor Maggie Kirk is leader of the Genomics Policy Unit (GPU) at the University of South Wales. Maggie has long experience of nursing in higher education as a teacher and researcher. She was lead author of the Fit for Practice in the Genetics/Genomics Era reports, and was responsible for the development of the competency frameworks set out in those documents.
“I have long been aware of the power of story-telling and its ability to engage nurses and other professionals with what genetics and genomics is really about – its impact on individuals and their families. Although I created a lot of scenarios for education purposes, based on real-life examples, they never hadthe same power that stories do in the words of the people who are recounting their experiences. Some of the phrases stay with you, years later.
What has struck me so far is that although many of the stories concern people with conditions that are relatively rare on an individual basis, collectively, they are numerous, and the common themes that are emerging highlight the need for health professionals to be aware of the impact of these conditions on the lives of people.
The stories present a range of perspectives on life, and what it is to 'live with' a genetic condition, and show a mix of emotions - warmth, courage, anger, despair and humour. What our storytellers all seem to have in common is a desire to share their stories so that we can learn from their experiences, to help improve the care delivered to others in a similar situation. I am so grateful to them all for doing so.”
Professor Heather Skirton is Professor of Applied Health Genetics at Plymouth University.
She has extensive experience of clinical genetics and genetic counselling practice and research. She was the first UK Consultant Nurse in Genetics to be appointed, and was the first non-US President of the International Society of Nurses in Genetics. Her research background is mainly in qualitative methods and she is co-author of three text books on genetics for healthcare professionals. She is an experienced educator, offering face to face and web-based courses in genetics for health professionals. Heather has worked to develop core professional competences in genetics for use across Europe and is the inaugural Chair of the European Board of Medical Genetics.
“As a genetic nurse, I was constantly aware of the way in which families told ‘the story’ of the way the condition had affected them, as a way of helping me to understand their situation. Hearing these stories reminds me very much of those I heard in clinical practice. My research in genetics has shown me that good health care is built upon empathic relationships and these real-life stories are a good basis for development of empathy and understanding between those who use and those who provide health services.”
Dr Rhian Morgan: with the collaborative input from the Wales Postgraduate Deanery (Cardiff University), Dr Rhian Morgan was able to join the Telling Stories, Understanding Real Life Genetics team as Project Officer to help develop the site as an education resource for medical doctors, initially based with other GPU members at the University of South Wales. Rhian has a background in scientific research and has worked on several research projects investigating the molecular genetics of various genetic conditions. She is now based at the Wales Gene Park as Education and Engagement Officer, but continues to work with Maggie Kirk and Emma Tonkin on the webiste.
“Working with the storytellers is inspiring. Without their willingness to share their personal experiences so that others can benefit, this project would not be possible. They, or those they care for, live with genetic conditions every single day and are often the real experts. There is so much that we can all learn from them.”
Buddug Cope is Development Director at Genetic Alliance UK <www.geneticalliance.org.uk>, a national charity working on behalf of all people affected by genetic conditions. Buddug has a thorough understanding of genetic issues as they impact on individuals and families, support groups, charities and voluntary organisations. She is facilitating access to a wide network of patient/user groups.
“The Stories here remind me how important it is to see patients, their carers and relatives as people and families who deserve support, respect and consideration. They are not merely their conditions or their symptoms, but they are individuals, families and loved ones. The nurse, midwife and health visitor who remembers and cares for them accordingly can make a big difference.”
Dr Emma Tonkin is a Senior Research Fellow at the Genomics Policy Unit, University of South Wales. Emma works closely with Maggie Kirk to help improve the genetics and genomics awareness and knowledge of nursing professional groups.
“The willingness of individuals to share their stories so publicly, and their frankness about how they feel and how situations have affected them, have had a big impact personally. Every story illustrates the importance of raising awareness and providing support for better education in genetics and genomics. They describe vividly the negative impact that a lack of knowledge and understanding in genetics can have on an individual, family or professional. But some also show us that when the health care professionals get it right, everyone can benefit. [More examples, please!] Our storytellers’ contributions make me evermore determined that we build this site well, and make it somewhere that you’ll want to revisit and learn from. “
Kevin McDonald is a member of the GPU. Kevin has a background in quantitative research methods and manages the GPU web pages, preparing material for publication, editing and updating.
“The stories contain some powerful messages. For the carers particularly, there is the endless repetition of caring tasks, accompanied by the knowledge that in some cases there is no cure, things will never get better, and indeed might get worse. Yet those carers have found the strength to write or talk about their experiences, so that others may benefit from what they have lived through.”
Dr Juping Yu is a Post-doctoral Research Fellow at the Genomics Policy Unit. Juping has a research background in qualitative methods and has a particular interest in cultural aspects in healthcare services and education.
“Each story is unique. The stories have touched me in various ways and greatly enhanced my understanding of the impact that genetics can have on people’s everyday lives. They also remind me how important it is for healthcare professionals to be empathetic when caring for people with genetic concerns, especially for young people and those from minority ethnic groups.”
We would also like to acknowledge the input from previous Telling Stories team members, Rajesh Summan, from the former NHS National Genetics and Genomics Education Centre, and Kalbir Kaur-Mann.