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February 27, 2015

Genomics News
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» Raising our hands to support Rare Diseases!

Rare Disease Day 2015 Tomorrow, February 28th, is Rare Disease day. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign primarily … Continue reading

January 6, 2015

Genomics News
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» Expansion to newborn screen tests roles out across England & Wales

The good news for parents and babies about to be born in England and Wales is that the new born screening test has been expanded to included four additional rare metabolic conditions. Also known as the the heel prick test, … Continue reading

January 5, 2015

Genomics News
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» Dr Mary Frances Lyon 1925 – 2014

It is with sadness that I learned today of the death on 25th December 2014 of Dr Mary Lyon FRS. I had only recently written about her, as someone who had been a source of inspiration to me during my … Continue reading

April 15, 2010

Welsh Institue of Health and Social Care Blog
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» 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