A Django site.
November 5, 2012

Genomics News
gennews
is about »
» Telling Stories Understanding Real Life Genetics journal article published

The Glamorgan-based Telling Stories Understanding Real Life Genetics project team, led by Prof Maggie Kirk of the Genomics Policy Unit, were delighted to receive confirmation that our journal article An objective approach to evaluating an internet-delivered genetics education resource developed … Continue reading

February 7, 2011

Genomics News
gennews
is about »
» Just what the doctor ordered – Telling Stories continues to grow!

Telling Stories Understanding Real Life Genetics has expanded to incorporate educational content for doctors. Initially developed for nurses, midwives and health visitors, the stories on the website – which are from individuals with, or at risk of a genetic condition, healthcare professionals, family members or carers – have now been mapped to learning outcomes in genetics for General Practitioners and Medical Undergraduate Students with support from the Wales Postgraduate Deanery for Medical and Dental Education at Cardiff University.

In addition to this new content, the recently revised nursing competences in genetics (Fit for Practice in the Genetics/Genomics Era: A revised competence based framework for nurse education; Kirk et al Preliminary Report, April 2010), which were reviewed and updated last year by a team of experts led by Professor Maggie Kirk (Leader Genomics Policy Unit, HeSAS, and Lead Professional Specialist for Nursing Professions at the NHS National Genetics Education & Development Centre), are now available on the Telling Stories website.

Three new stories have also been published this month; the first is from a nurse, Ruth, specialising in the genetic condition Niemann-Pick disease, the second from a storyteller, Amelia, who describes her expereinces of living with the genetic condition Neurofibromatosis, and the third from Jenny, who describes what it is like to live with two different inherited conditions, facioscapulohumeral (FSH) muscular dystrophy and maturity-onset diabetes in the young (MODY).

New video clips are also available to accompany David’s story about living with the rare genetic condition Von Hippel Lindau.

For enquiries or more information on Telling Stories, please email tellingstories@glam.ac.uk

October 6, 2010

Genomics News
gennews
is about »
» Telling Stories tees off at The Belfry!

With Ryder Cup fever sweeping Wales and the UK this week, the Telling Stories team kept up with the golfing theme (minus the dodgy golfing knitwear!) as they visited the famous Belfry Golf Club in the West Midlands to give a ‘masterclass’ on the Telling Stories Understanding Real Life Genetics website to the Association for Healthcare Communications and Marketing conference yesterday. The invite to give the presentation came as a result of the ‘Best Use of New Media’ award that the Telling Stories website won at last year’s AHC conference.

The session, which was attended by delegates from a wide range of backgrounds within healthcare communication and marketing, used Telling Stories as a case study to illustrate how online storytelling can be used as a powerful and effective means of engaging and educating healthcare professionals. As well as giving the audience an overview of the project from its inception to the present, attendees were invited to participate in some group work on both storytelling in general, and using some of the stories featured on the website. From the feedback received on the day, it seemed the session was well received by those attending, who commented that they found it enjoyable and engaging and felt that it provided some good ideas for others wishing to use the storytelling as an educational or training tool. Whilst the masterclass might not have quite reached the frenzied excitement of the final afternoon of the Ryder Cup, like Graeme McDowell’s final putt on the 17th on Monday, it went down well! :)

August 3, 2010

Genomics News
gennews
is about »
» Experts comment on Telling Stories

Telling Stories, Understanding Real Life Genetics draws on real life stories from people with or at risk of a genetic condition, or those caring for them. Told in the storytellers’ own words, the stories are mapped to genetic education frameworks for healthcare professionals and are supplemented with teaching and learning activities and links to further information. Two news stories were added to the site last month: Patrick’s account, of living with sickle-cell disease and Caroline’s story of her son’s Tuberous sclerosis.

The Telling Stories team also invites comment on aspects of the stories from professionals with expertise across healthcare practice. Commentaries provide additional perspectives to supplement the stories for teaching and learning. Those recently added include: Inherited bowel cancer – Kathy Calzone provides a US perspective to Paul’s Familial Adenomatous Polyposis (FAP) story, Sandra Hall a CF specialist nurse comments on Rachel’s cystic fibrosis story, Merlyn Glass ,a Genetic Nurse Counsellor from Johannesburg, offers comment on Down syndrome from a South African perspective, Dr Sue Clark ,a consultant colorectal surgeon, comments on Diane’s FAP storyfrom a surgical perspective, Dr Andrea Edwards Lead Genetic Counsellor (All Wales Medical Genetics Service), reflects on Karen’s tuberous sclerosis story and discusses the different perspectives of reproductive decision making and the choices available during a pregnancy when a genetic condition is suspected in a family, and Dr Stephen Hailey offers a GP’s perspective on several of the stories.

For any enquiries about Telling Stories, please email project officer Rhian Morgan

» How often do you cry at conferences?

My career spans well over 30 years and in that time I’ve been to numerous scientific/health conferences and listened to eminent speakers present leading edge research. I’ve been impressed by facts, figures, charts, and fabulously colourful diagrams (molecular geneticists seem to excel at these). From all of these, probably three stand out. Two because complex material was presented so clearly we were all able to appreciate the implications and value of what was being achieved. The other was because I was so bitterly disappointed that the keynote leading lecture by the very eminent scientist was completely over the heads of most of the audience (even the molecular geneticists struggled) and I learnt nothing (except a reminder of the importance of avoiding jargon and PowerPoint slides that no-one more than a metre away can read…).

Last week I found myself at another conference, on Alzheimer’s disease hosted by the Faculty of Health, Sport and Science and Grwp Gwalia. We had the facts and figures (that there are currently around 38,000 people in Wales with dementia, and this figure is likely to rise to 48,000 by 2021) alongside some interesting presentations on initiatives to provide care for patients and families affected by the condition. But what I think will really have moved the audience to try to ‘do their bit’ for such families was the story told by Peter Oldacre, husband and carer of Ann. Peter showed a brief video of Ann’s life since her diagnosis just a few years ago, narrated by her daughter. The story was told simply, sincerely and with occasional humour. I was not the only person wiping away tears as Peter’s story drew to a close. Good quality evidence is of course crucial in informing policy. But the human face of that, as told through real life stories, is what I think can really make a difference in getting people to engage with the evidence. I shall remember Peter’s story, and his courage in telling it, for a long time.

August 2, 2010

Genomics News
gennews
is about »
» Tell your story about Telling Stories - students wanted to help with genetics film

Are you a healthcare student who has used the Telling Stories, Understanding Real Life Genetics (www.tellingstories.nhs.uk) website to learn more about genetic conditions and how they can impact on everyday life as part of your studies? If so, we’d love to hear form you.

We are looking for one or two healthcare students who would be willing to be interviewed about their experiences of using Telling Stories in their education as part of a film that Public Service Management Wales are making for their Storytelling Centre for Leadership project, in which they would like to highlight Telling Stories as an example of good practice. Filming is likely to commence within the next 2 to 3 months. Anyone who is interested and would be willing to help, please email Rhian Morgan, Telling Stories Project Officer or call 01443 483027

April 21, 2010

Welsh Institue of Health and Social Care Blog
wihsc
is about »
» The Yanks are still coming

Having just returned from a holiday in the USA it was interesting to read David Hands’ blog about President Obama’s health reforms. Those of us brought up with the virtues of the Welfare State running through our veins find it astonishing that such a large body of American opinion should oppose enabling an additional 40 million American people to access health care. One news story I picked up in Florida was of a doctor placing a sign in his surgery saying supporters of Obama were not welcome. He later said that he was merely making a point and would not, of course, have turned any of his patients away!

My immediate reaction to the US health care debate was to conclude that the political ideology which underpinned the thinking of Obama’s opponents was so distant from mainstream thinking in this country that everyone would be as surprised as me that there should even be a debate. A bit naïve and idealistic perhaps but my way of offering my own personal vote of confidence to our National Health Service. Then I watched the first Prime Minister television debate and began to reflect on how much we have been influenced by the American way, or certainly American initiatives, in the last 30 years or so.

Here are some of the examples which came to mind. Out of town retail parks; Macdonalds and other fast food outlets; deregulation of public transport and the growth in car use; 24/7 opening hours; Starbucks and other coffee houses; 24/7 news coverage; 4×4 trucks; the internet; mobile phones; the growth in commercial television; and the acceptance of a whole new way of spelling our language, epitomised by the acceptance that it is ok to spell it ‘epitomized’. We could have a poll on which are good and which are bad, which we like and which we don’t, but the truth is that all these things, and others, are here to stay.

The worry I have is that I think a tacit acceptance that ‘what America does today, we should do tomorrow’, has crept into our culture and if this is allowed to run its ultimate course it would lead to the demise of the NHS, the BBC and any other institutions which were based on the notion that the collective good is more important than the individual. The first TV election debate summed this up perfectly. It was all about which of the 3 party leaders could impress us more, not which policies would produce the best way forward for our country. The fact that they are representatives, albeit leaders, of their parties seemed to be lost. It was described by some journalists as the most public job interview in history. It was an American presidential debate superimposed on a British political system.

Personally, I thought the first debate was a dispiriting event and, again naively perhaps, find it offensive and concerning that voters should be influenced by the colour of a suit and tie, the degree to which you looked down the lens of the camera, and your ability to tell a joke, all of which featured in the post-debate analysis. Interestingly, Karen Lewis’ blog on the 15th April about the richness of storytelling as a means of understanding real issues was in sharp contrast to the universal opinion of the political journalists that the 3 leaders had all been guilty of overdoing the anecdote, typified by ‘a cancer patient in wherever was telling me last week that he couldn’t get the right drug because….’.

We are yet to see, of course, whether the TV debates will actually lead to changes in voting but we should all be concerned that 90 minutes of television, which covered no more than 8 questions, all relating to home policy, can lead to such dramatic movement in opinion polls. We are told that there is now no going back and that the debates will now be a permanent feature in Parliamentary elections. And if you think I’m overstating this Americanisation theory, have a look at the way all the parties seem to be supporting the introduction to Charter schools which many believe represent the potential end of our state schools.

I’m sure if Alistair Cooke was still alive and presenting his ‘Letter from America’ we would all be listening in carefully to find out what we’ll be doing differently in the next few years.

Written by Tony Garthwaite, WIHSC Senior Fellow

April 15, 2010

Welsh Institue of Health and Social Care Blog
wihsc
is about »
» What’s the Story?

The Election Campaign Express is now gathering speed as the competing voices of politicians grow ever louder and – dare I say it? – become almost interchangeable, merging into a relentless cacophony whipped up by the media. There’s blogging and twittering, there’s Dave Cam and live television debates – the electorate now has more access to the views of its political leaders (and would be leaders) than ever before. So why does the hubbub of this election soundtrack often seem so far removed from the reality of our daily lives? Why do so many people simply “switch off” when politicians begin to ramp up their campaign battle cries? Is it perhaps because the talk, debate, argument, questioning, is almost always about policy, not people?

As human beings we make sense of our lives through our own personal narratives, not by studying a policy framework or a set of guidelines. It is through creating and sharing our stories that we connect with each other, with our past and with our future, and the constant reshaping and retelling of our own life story lies at the heart of who we are.

After over a decade of working with “ordinary” people and helping them to share their real-life stories, I continue to be dismayed by the deference with which individuals offer their testimony. They will often describe their story as “not very interesting” or preface their narrative with “who would want to listen to what I have to say?” (Not phrases we would often hear a politician using). In fact their stories are always of interest and value to the listener and, in turn, their experience of being listened to is immensely rewarding and validating for them.

We have been privileged recently at StoryWorks (1) to have gathered a series of rich stories from carers of people with dementia in Wales, and the insight this has afforded into the complexities of the condition and its impact on the individual and their family has been profound. The glimpse into the minutiae of daily living, and the accompanying emotional rollercoaster, say more to me about the need for this condition to be seen as one of the major challenges facing our ever ageing population than any report on dementia care.

Similarly, the powerful stories that cancer patients at Velindre Cancer Centre have shared with us have offered a very human glimpse into the real experiences that lie behind the shocking statistics. When these stories were shared with staff at Velindre, there was a genuine sense of a different type of learning about what it means to live with cancer and a view that the narratives highlighted

“…the importance of remembering that patients are people with their own lives.”

Of course we need our politicians and leaders to create and implement policies and procedures; that’s what we pay them for. But we also need them to be reminded of the human impact of their decisions and the stories of the individuals whose lives that they will affect. In the age of sound bite and spin let us ensure that we – and our decision makers – continue to listen to the real stories of real people, and learn from them.

Written by Karen Lewis, Project Leader, StoryWorks, WIHSC

1. To see more about our work visit Storyworks.

2. Quote from Velindre staff member on feedback form

March 25, 2009

Genomics News
gennews
is about »
» New Project Officer

Hello, I’d like to introduce myself, I’m Rhian, the new project officer for Telling Stories. I’ll be working on the website, uploading more stories, collecting new ones and extending the range of professional groups covered to include medics. Please feel free to contact me if you have any queries regarding the project, or would like to find out more about how Telling Stories is of benefit to health professional education. You can contact me using the details below.

Telling Stories Understanding Real Life Genetics

Rhian Morgan

Telephone: 01443 483027

June 30, 2008

Genomics News
gennews
is about »
» Telling Stories to form part of US nurses' education resource

I’ve just returned from a very positive meeting in Bethesda, US (not North Wales) with leaders in genetics education from across the US. The aim of the meeting was to develop a toolkit of education resources to support the genetics/genomics competences for US nurses. Telling Stories was swiftly adopted as a very useful component of the toolkit, and it seemed that those who knew of it were already using it, and those that didn’t clearly saw its value.

The meeting itself was held at the National Institutes of Health – a very impressive campus of 27 institutes, with a ~$30billion budget. Just think what the GPU could do with that!