Why have our storytellers taken part in helping us to develop this resource?
Paul’s account below of why he told us his story, explains far more eloquently than we could, the motivation to take part. This view was echoed by many of our storytellers.
“Since going through genetic testing in 1999 I have often been asked about various aspects of the procedure by other patients, the media and health professionals alike. Although my experience at the genetic centre saw our family treated in a very sympathetic and caring way not much was said about the gene apart from the percentage risk of carrying the gene and insurance. Nothing about other effects the gene might have on me.
‘Telling Stories’ provided an ideal opportunity for me to help pass on my own experience not only to a consultant or GP but anyone who had an interest. Hopefully quite an audience.
I did feel that only if I felt comfortable and at ease, taking into account my family’s views, could I actually say yes. However once started it was amazing the difference between being asked for a story to sell newspapers or magazines and ‘Telling my Story’ to help educate others.
While my rights were explained and forms signed giving my approval we had our sandwiches before starting.
It was so relaxing even if I was nervous, but I was left to talk and when I paused to collect my thoughts it didn’t matter for what was needed was my own views. When stuck to explain a point there were little questions to help me carry on.
No pressure was put on me to include sensational bits or to include family members who might be concerned. At the end I felt worn out and yet really pleased at being given the opportunity to be part of a new way of training where patients’ stories would really be appreciated and help fill in the gaps that text books are unable to do.
I’m sure it will be a success for while we all learn about our own condition it cannot be expected that the health professionals we see can be so knowledgeable with so many different faulty genes. However by using ‘Telling Stories’ there will be a way for them without ploughing through books and reports for a better understanding.”
Who are our storytellers?
Storytellers come from all backgrounds and all walks of life. One thing they all have in common is the desire to share their stories to help others understand what ‘real-life genetics’ means for ordinary people. So far we have collected over 100 stories from men and women, from 18-75 years of age.
How are storytellers recruited?
We recruit from all areas of the UK and from all ethnic groups. We are keen to receive stories from patients, carers, ‘significant others’, family members and health professionals – in fact, anyone with a story to tell that is related to genetics or genomics. This could be a direct personal account of what it is like to have, or be at risk of developing, a genetic condition, or a condition with a known genetic component. It may be that a storyteller has had an experience as a health professional, in caring for patients and families in these circumstances that has had an impact on how he or she views practice.
Storytellers are recruited through a variety of ways, including local and national support group newsletters, Internet, conferences, and local community meetings.
What steps have been taken to protect storytellers?
On initial contact, all potential storytellers are given an information sheet and consent form and other related copyright release forms, in accordance with a process approved by the Faculty Ethics Committee at the University of South Wales. We do take care to ensure that storytellers understand the aims of the project, and understand that they can withdraw their story at any time.
We take care to anonymise stories as much as possible, by changing names and places that might identify individuals. Of course, with video clips we take extra care to ensure that storytellers are happy for these to be made available on the web pages, and try to minimise clips where names are used.
If you have a story you would like to share please contact us for further information.
Our project information sheet can be found here.