The Patient Voices digital stories
Now, more than ever before, we need stories. We need stories from all the ordinary and the extraordinary people waiting patiently to be heard. We need stories of courage and compassion, love and loss, triumph and tragedy, hope and resilience; stories of agonising uncertainty and the delightfully unexpected. We need funny stories and sad stories; stories of how we get through each day, stories of patience and impatience, stories of how we stay connected to family, friends and colleagues. We need stories from children and their parents and grandparents; from healthcare workers; from educators, from people who have lost their jobs and people who are valiantly carrying on, especially those teaching our children and young people; those who are conducting research, caring for our elderly, looking after our animals, emptying our dustbins, transporting our food, maintaining our water and electricity supplies and burying our dead.
We at Patient Voices have been listening to your stories and helping you transform them into digital stories since 2003. We have seen how stories can transform individuals, families, teams and organisations. Now is the time when we need stories to transform the world – stories to create a better future for everyone. We are all in this together.
How can we share and learn from stories during a pandemic?
In response to the current coronavirus pandemic, we have brought our BMJ Award-winning digital storytelling workshops online. Over the course of six two-hour sessions, plus online support time, you’ll learn how to create your own 2-4 minute video – a digital story.
Who should participate?
Anyone and everyone! You may be a patient or a carer or someone working in health or social care, hoping that others can learn from your story; you may work in education and want to learn new ways to engage and inspire students or illustrate challenging concepts; you may work in other public sector jobs, in administration or the armed services – or you may be just an ‘ordinary’ person with a story that needs to be told.
The reflective digital storytelling process which underpins the creation of the Patient Voices digital stories uses video, audio, still images and music to convey patients’, carers’, practitioners’ and managers’ own stories in a unique way. They are intended to touch the hearts of managers, clinicians and others striving to improve the quality of health and social care and to provide ways in which patients, relatives and carers can understand the experiences of staff.
Face to face workshops
Until now, most of the stories on the site were gathered during small-group workshop sessions with storytellers, who may be patients, carers, managers and/or healthcare professionals. These workshops typically last between two and four days, with pacing and level of technical content adjusted to suit each group of storytellers. These workshops wil be available again as soon as condiotions allow.
If you would like to make a story, or set up a storytelling project, there’s more information about workshop dates and prices on our workshop page.
The stories
The Patient Voices workshops are run using a methodology developed and enhanced by Pip Hardy and Tony Sumner over several years for use in health and social care and educational settings. The aim of a workshop is to facilitate storytellers in a journey through a process which will result in them producing a Patient Voices digital story which is ‘Effective, Affective and Reflective’ (Sumner, 2008).
Our workshops being are increasingly used to engage with, and evidence outputs from, the Patient and Public Involvement (PPI) and patient engagement agendas, together with being used to provide qualitative evidence of the patient experience.
Distribution of these stories is funded solely by Pilgrim Projects Limited as a social enterprise. Please let us know how and when you use the stories, so that we can use your experiences to persuade sponsors to support the development of more stories for everyone to use.
The released stories are all listed in the catalogue of stories. The links below connect to groups of stories on a project by project basis.
The World Health Organisation state that Clinical depression is the leading cause of disability worldwide and a major contributor to the overall global burden of disease. Yet, little is known about what makes people vulnerable or resilient to depression. This project has been funded by the Wellcome Trust via Scotpen/SWEA, is run by the University of Edinburgh, and aims to raise depression up the political and social agenda in Scotland.
With the support of NHS Employers and Health Education England, in September 2020, members of staff from Cambridge University Hospitals NHS Foundation Trust took part in an online Patient Voices reflective digital storytelling workshop so that they could share, in their own words, their own experiences of working in the NHS.
The Coronavirus pandemic has affected all of us. We have shifted to helping people create their stories through online groups. One benefit of this is that some of the everyday stories of live in a time of lockdown can be told safely. These are some of the stories of COVID, that their tellers have kindly chosen to share.
When the 2020 Digital Storytelling Conference was postponed due to the global effects of the Coronavirus, the organising commitee felt that an appropriate response would be to respond by telling, sharing and curating stories of resolve and strength. This page contains ten such stories, curated by the Patient Voices Programme.
These stories were created by voice-hearers as part of the Understanding Voices project.
- Doctors, change, challenge and diversity
- Faith, sexuality and identity
- #TwitterDisco does Patient Voices
- Stories of Interprofessional Education
- Reflection on practice and in practice
- Three days in Cambridge: the Patient Voices documentary
- Complex pain, complex teams
- Terrific Teens!
- Compassion in EoLC
- DNA of Care
- Dementia Insights
- Champions
- Living with Dementia
- Power of Story
- Positively Different
- New Lives
- Saving Brains
- Physician, know thyself
- Healthy teams
- Building Healthy Rural Communities
- It’s not the cough…
- Talk, tell, transform
- Coming together
- Working together
- Learning together
- Easy breathing
- Speaking Up
- Dignity and respect
- Getting involved in research
- Working smarter
- Why teach English?
- After the fires
- Dangling conversations
- Sheffield Carers’ Voices 2
- NHS Lothian telehealth stories
- In the lead
- Stories from the National Patient Safety Agency
- Telehealth stories
- Stories of recovery from La Trobe University
- Motor Neurone Disease (MND) stories
- NHS Leeds PPI stories
- Sheffield Carers’ Voices
- End of Life Care
- Stories from the University of Liverpool
- Stories from the Isle of Wight Stroke Club
- Nottingham interprofessional stories
- The shock of reality
- Stories from the University of Huddersfield
- Communities of health
- Stories from the NHS Institute for Innovation and Improvement
- Stories from junior doctors in training
- Stories from the Saskatoon Health Region
- Arthur & Co.: Stories about living with Arthritis
- Society of the Holy Child Jesus
- Healing journeys
- Work in Progress
- Caring for vulnerable babies: the reorganisation of neonatal services in England
- Interpreting Tales
- Having a stroke: being a parent
- Stories from Connecting for Health
- Stories from the RCN quality improvement programme
- Carers’ Resource, Harrogate, Craven and Airedale
- Stories from the RCN
- Reconnecting with life: stories of life after stroke
- Stories from Patient Voices open workshops
- Stories from the Working in Partnership Programme (WiPP)
- Stories from NHS Tayside
- Stories from NEYNL
- Stories from the Heart Improvement Programme
- Charles Bruce’s stories
- Grace and Joe Desa’s stories
- Alison Ryan’s stories
- David Clark’s stories
- Emma Allen’s stories
- Monica Clarke’s stories
- Ian Kramer’s stories
Using the stories
The stories are accessible from the links above, each of which leads to a particular project. If you would like to be notified of developments to the programme or website, or when we release new stories, please follow us on Twitter or Facebook using the links at the top of the page.
Contact us if you would like to use stories in presentations or other projects. We would ask all users of the stories to be mindful of the license conditions for their use, particularly that they may not be modified. It is important that they remain as they are released by us, in order to retain the integrity of the story shared by the storyteller with us, to keep in place any acknowledgements that may be necessary to comply with the conditions we agree to when we licence music or images for use in a story, and to maintain the visibility of the Patient Voices Programme and Pilgrim Projects so that viewers of stories understand their provenance and where they may find out more. So, for example, you cannot put the stories on YouTube, because of their conditions of service.
Please let us know how and when you use the stories, so that we can use your experiences to persuade sponsors to support the development of more stories for everyone to use. Please join the discussion group so that we can let you know when new stories, workshops or publications are available.
The patients, carers and professionals who contributed their stories to the Patient Voices programme have consented to their use as an educational and learning resource as part of the international drive to improve the quality and responsiveness of services for patients and carers. Any other use or modification or editing of the stories without prior written agreement is not acceptable.
In order to make this possible, the Patient Voices digital stories on this website are licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 2.5 License.
Linking to the stories
If you would like to link to the stories from your website, that would be fine.
To link to one story in a group of stories, please provide a link to the page on which the stories sit on our website, with an instruction along the lines of:
“View the digital stories from Pilgrim Projects at: www.patientvoices.org.uk/pilgrim.htm”.
To link to a particular story, please provide a link to the page on which the story sits on our website, with an instruction along the lines of:
“View the digital story entitled ‘Surviving’ on the following web page: www.patientvoices.org.uk/flv/0168pv384.htm”.
This is for several reasons:
- We have no funding for the hosting or developing the website, and so it’s all done at our cost and in our spare time.
- The pages are currently all static.
- If a story is ever updated (as we had to do when our postcode was changed by the Royal Mail for example…) then the file name changes to identify it as different. So, linking direct to movie files may break.
- We would also like to encourage users to see the site, rather than just one or two stories, so linking to the page a story is on allows viewer to see what we do, and what else is available, so that they can explore and learn independently, as well as in a directed manner.
Please let us know which pages you are linking to, then we can make a note and try our best not to move or break them, but we can make no guarantees that a page will remain present.