The Project Team represents a collaborative effort between the Genomics Policy Unit (GPU), University of South Wales, Genetic Alliance UK (www.geneticalliance.org.uk), Plymouth University and the NHS National Genetics and Genomics Education Centre.
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 Era reports, and was responsible for the development of the genetics competency framework 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 is really about – its impact on individuals and their families. Although I create a lot of scenarios for education purposes, based on real-life examples, they never have the 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) we have been able to appoint a new Project Officer to help develop the site as an education resource for medical doctors. Dr Rhian Morgan joins the Telling Stories, Understanding Real Life Genetics team as Project Officer and is based with other GPU members at the University of Glamorgan. Rhian has a background in scientific research and has worked on several research projects investigating the molecular genetics of various genetic conditions. She will work closely with Maggie Kirk and Emma Tonkin to expand the site to support teaching and learning across the continuum of medical education.
“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 the Education Development Officer (Nursing Programme) at the NHS National Genetics Education and Development Centre. Based with other GPU members at Glamorgan, Emma works closely with Maggie Kirk to help improve the genetics awareness and knowledge of nursing professional groups. Developing educational resources is an important part of Emma’s role and she has joined the project team for this purpose.
“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. 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 and was Project Manager for the Fit for Practice in the Genetics Era work. 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. Currently she is conducting a Beacon for Wales funded project looking at young people’s views on sharing health related stories online.
“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.”
Rajesh Summan is the Information Specialist at NHS National Genetics Education and Development Centre based in Birmingham . Rajesh’s background in genetics has enabled him to develop the Centre ’s new website and play a key role in developing and delivering the new "Telling Stories" website for the end user. His work reflects the integration of genetics and new technologies. Rajesh has considerable experience of working in the IT industry. His background of working in the education sector, combined with good sound educational knowledge and E Learning experience has allowed Rajesh to play an important role.
"All patient clips are available through the “Telling stories” website. The stories are a powerful medium for promoting and capturing often complex information and delivering them to the end user in an effective and relevant format. The user has the option of downloading and saving the patient stories. These stories can be used as part of their own teaching resources for instance become part of a PowerPoint presentation. As reusable learning objects (RLO) each clip is stand-alone which means that teaching can be customised for specific groups or individuals. This will increase the potential use of a clip and how we empower learners.”
Kalbir Kaur-Mann was a Research Fellow at the GPU and was Project Officer for Telling Stories, Understanding Real-Life Genetics until 2006. With a background in sociology and medical anthropology, Kalbir also has counselling training and extensive experience of interviewing, particularly with vulnerable groups, such as black and ethnic minority users of mental health services. She also has experience of teaching qualitative research methods and issues regarding equality and diversity in healthcare.
“ Each storyteller has contributed a great deal to my understanding of what it is like to deal with and live with a genetic condition. Each story has a powerful and inspiring message. The healthcare professionals have helped me to understand the challenges of their work and the significance of educating professionals and members of the public. I thank the storytellers for privileging us with their stories and allowing us to better understand their experiences. You have helped me to understand the significance of telling stories and the importance of being heard at all levels”.