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Patient Voices: The Patient Voices digital stories

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.

Up to 15% of children and adolescents worldwide experience neurodevelopmental difficulties that vary widely in scope and impact. Strict diagnostic criteria have constrained our understanding of these difficulties and limited our theories about why these might occur. “Embracing complexity in neurodevelopment” aims to challenge our thinking around diagnostic categories and hopes to make discoveries to benefit the lives of children and young people experiencing barriers to learning.

NHS staff come to the UK from across the globe. They train, they care and they serve – but they also have to sacrifice and struggle.

NHS staff in the South-West of England – and their patients – come from many ethnic, religious, socio-economic and cultural backgrounds, and have varying health, experiences, beliefs, genders and sexualities.
In October 2021, members of NHS staff in the South-West took part in an online Patient Voices reflective digital storytelling workshop so that they could share, in their own words, their own experiences of diversity and working in the NHS. Here are some of their stories.
We hope that these shared stories of achievement, aspiration and dedication will fulfill a similar role for those who work, or are considering working, in the NHS in the South-West.

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 in training undergo a great deal of change, face a wide range of challenges and are both diverse and surrounded by diversity. These stories explore what it feels to be a doctor in training.

These stories were created to explore the interactions and intersections between faith, sexuality and identity, and how those complex influences affect health and well-being.

For most people, #TwitterDisco is just a great way of connecting, sharing, letting off some steam and having fun, but for others it has had a more profound and positive impact upon their health and wellbeing. These digital stories, exploring the value of social media in healthcare staff experience, were created in a Patient Voices workshop supported by the Michael J. Smalroch Foundation.

These digital stories were created in a Patient Voices workshop sponsored by the Centre for the Advancement of Interprofessional Education (CAIPE). Each participant produced a rich and personal story of their journey to IPE and their continuing work in promoting the principles and values of IPE as service user, practitioner, teacher, student or IPE leader.

The stories in this series were created at a workshop in at the University of Hertfordshire. Members of research and teaching staff in the school of nursing came together to explore the potential of digital storytelling as a tool for reflection on their own personal/professional stories.

Ever since we began our work in 2003, describing the experience of a reflective digital storytelling workshop has presented a challenge. Explaining the schedule of the three days is simple, but communicating to potential storytellers or workshop sponsors how it feels is another matter. With this in mind, we decided to commission a documentary film production company to produce a short film on what three days in Cambridge at a Patient Voices reflective digital storytelling workshop feels like.

University College London Hospital’s complex pain team works with patients who have persistent or chronic pain. Their collective stories – staff and patients – demonstrate that whether we are patients, carers, healthcare workers, or a mixture of all three, we are each touched by pain and suffering, we are connected by each other’s willingness to listen, to attend to and to transform this experience.

These Patient Voices Reflective digital stories were created to explore the experiences of teenagers with a variety of long-term conditions, and those of their siblings, their families and their parents.

These Patient Voices Reflective digital stories were created as part of the development of an inter-professional learning resource that would help cultivate compassion in end of life care.

NHS England funded Patient Voices workshops for staff to create their own digital stories about working in healthcare. The stories are being used to help other people understand the reality of working in healthcare so we may all learn from experiences, both good and bad; sharing stories in this way helps contribute to healthcare that is safer, more dignified, more humane and more compassionate for everyone.

These stories were created at a Patient Voices workshop for people with dementia, their carers and partners in Lancashire. Statistics tell us much about populations, but cannot tell us how it feels to be an individual with dementia or caring for someone with dementia. We need to hear the stories told by people affected by dementia if changes in policy and practice are to be effective, meaningful and appropriate.

People with learning disabilities are not only consumers of health and social care services, but have unique perspectives and skills to bring to the delivery and improvement of those health and care services, and the ability to be champions for innovative development programmes and initiatives.

These stories were created at a workshop sponsored by NHS South Stafffordshire and Shropshire Foundation Trust in order to give services users and carers within the Trust the opportunity to reflect on their experiences and share those in order to drive improvement and acknowledge good practice.

‘Continuing to be me’ is an important part of recovery for older adults. This Patient Voices workshop was part of the NHS South London and the Maudsley Foundation Trust’s ‘Power of Story’ project, which aims to gather the unique experiences, life stories and thoughts of service users, relatives, carers and staff. Opening this ‘book of stories’, will help to better understand how mental health affects our lives and help develop future services.

These stories were created at a workshop sponsored by NHS South Stafffordshire and Shropshire Foundation Trust in order to give mental health services users within the Trust the opportunity to reflect on the experiences and share those in order to drive improvement and acknowledge good practice.

These are stories created in a workshop exploring what it means to be a mother, a midwife… or both.

The majority of the rural Tanzanian population live a very hand-to-mouth existence, living in mud huts and subsisting by growing maize, beans and, perhaps, a few vegetables. Malaria is very common. Babies and young children are particularly susceptible to the worst effects of malaria. When it rains, the mud huts collapse… And the mosquitos emerge.

To address the General Medical Council’s avowed aim that “[Tomorrow’s doctors will] continually and systematically reflect on practice” we created and ran an SSC at Kings College London, based on our earlier work at the University of Leicester Medical School to provide a group of third-year medical students with the opportunity, environment, support and skills with which to create reflective digital stories of experiences that have affected them.

What happens when a ward is placed on special measures? How does this affect the team of people working there – the clerks, nurses, managers, health care assistants? What brings about the change necessary to return to effective working? These stories are a testament to the dedication, commitment, openness and honesty of NHS staff, and provide invaluable insights into the motivations for, and processes of, change.

These two workshops were facilitated by the Patient Voices Programme in Healthcote and Warracknabeal, Australia, using iPads to capture images, video and audio, and iMovie to assemble storytellers’ digital stories. The workshops were part of the La Trobe University ‘Building Healthy Rural Communities’ project.

Persistent cough and gastric reflux are debilitating and life-changing conditions that have serious effects on the lives of those who suffer from them and their families.

The Childrens Liver Disease Foundation Talk, Tell, Transform project enabled young people to tell their story and share it with others. In doing so, the project aims to reach out to other young people and support them in their liver disease journey.

The stories in the Coming together series were created at Barts’ Health, London, in January and February 2013 at Patient Voices workshops that formed part of the NHS Patient Feedback Challenge Both Sides NOW! project.

The stories in the Working together series were created at NHS Manchester Mental Health and Social Care Trust in January 2013 at Patient Voices workshops that formed part of the NHS Patient Feedback Challenge Both Sides NOW! project.

The stories in the Learning together series were created at Princes Alexandra Hospital, Harlow, in November 2012 at Patient Voices workshops that formed part of the NHS Patient Feedback Challenge Both Sides NOW! project.

This Patient Voices project aimed to facilitate both innovative professionals and committed patients in telling and sharing the stories of the experiences, motivation and hopes in order that they can shed some light on the path to better services and better practice in COPD care.

The stories in the Speaking Up series are being created as part of a Health Foundation project aimed at assessing new approaches to complaints handling.

The Patient Voices reflective digital stories created are being shown at Board meetings in order to draw those present back to the stories behind the decisions they take, and are being used in the recruitment process of staff up to and including the level of Chief Executive, thereby bringing service users’ experiences into a key area of service provision and development.

This project aimed to facilitate the creation of Patient Voices reflective digital stories that will help to inform potential participants in research, architects of research programmes and the debate on Patient and Public Involvement (PPI) in research.

Reflective digital stories told by young Allied Health Professionals about their experiences of training and employment are valuable learning resources that can be placed at the centre of programmes for the development of mentors and preceptors. They also provide a rich way of gathering and conveying to further cohorts of trainees the experiences and experiential learning of their predecessors. This project follows others at the University of Nottingham with Mental Health Nurses and on inter-professional working.

This project was driven by the inspiration of Richard Pemberton to investigate new ways of enabling trainee language teachers to reflect on their motivation and experiences. The intention is to explore an innovative approach to assessment and to the communication of an organisation’s culture across global sites.

Storytelling can provide an effective way for carers and support workers to share and reflect upon experiences after dramatic and possibly traumatic events. These stories were created in a Patient Voices Reflective digital storytelling workshop in October 2010, sponsored by Bendigo Community Health Services, in Bendigo, New South Wales, Australia.

Digital stories provide a creative way for people to tell their stories using an amalgamation of voice, image and music, and can be used to engage nurses with others’ experiences in the classroom setting. Seven people with early-stage dementia and one carer participated in making their own stories during a Patient Voices Reflective digital storytelling workshop in April, 2011. These participants experienced particular and varied challenges relating to telling a story and engaging with the technical process of digital storytelling.

These stories were created by carers from across the community in Sheffield. They show the range of challenges faced by carers as they deal with systems, conditions, and processes, while always trying to support and care for those they love.

These stories were created in a Pilgrim Projects/Patient Voices reflective digital storytelling workshop in 2011 that gathered stories of Telehealth.

These stories were created in a Pilgrim Projects/Patient Voices reflective digital storytelling workshop in 2010, that explored the nature and role of leadership in the NHS.

These stories were created in a Pilgrim Projects/Patient Voices reflective digital storytelling workshop in 2010.

Telehealth gives people the opportunity to take greater control of their own health. It allows nurses, other healthcare workers and patients to work in partnership, thereby improving health outcomes and people’s experiences of healthcare. These digital stories are at the heart of developing policy, guidance and resources to support the future needs of nurses and health care workers to prepare them for eHealth in nursing and patient care. We would like to thank the storytellers for sharing their experiences and for demonstrating that the best way to predict the future is to invent it.

Shaping a recovery-orientated culture and empowering people to effectively self manage their care, in the face of enduring mental illness, is a complex undertaking. The Pilgrim Projects/Patient Voices reflective digital storytelling workshop in Bendigo, Victoria, Australia in 2010 enabled mental health consumers and health professionals to share their stories of recovery.

The stories on this page have been created by people with MND and their carers. The stories have been used in learning programmes to illuminate the experiences of people with MND for those engaged in MND research.

These stories were told by a group of service users, carers and PPI professionals in Pilgrim Projects Patient Voices workshops in 2009. The stories reflect the personal and professional experiences and aspirations that lead to participation in the PPI process by both patients and staff.

These stories, told by people who use mental health services and those who care for them, are intended to illuminate the experiences of people affected by a range of serious mental health conditions including psychosis, depression, anxiety and autism, highlighting the needs of those who suffer from such conditions, and of those who care for them.

These stories were prepared to accompany the National Audit Office’s End of Life Care Conference held on the 17th June 2009.

These stories are part of the Get Involved 4 the Future project, which is a collaboration between the Forum of Carers and Users of Services, and staff and students of the School of Health Sciences at the University of Liverpool. The project’s aim is to explore and develop successful ways for the health professionals of tomorrow and local people with experience of the health and social services to work together and learn from each other.

These stories were created by members of the Isle of Wight Stroke Club with the aim of sharing their experiences of life with stroke and within the care system.

These stories were created in a Patient Voices reflective digital storytelling workshop in 2010, which was intended to facilitate the sharing of stories between and within groups of service users, carers and professionals.

Even the best education and training cannot prepare newly-qualified nurses for the often shocking experience of working on the ward or in the community. These stories were created by young mental health nurses in an attempt to explain the need for support and reassurance in those early days as they learn to navigate the responsibilities, difficulties and dangers of clinical practice.

These stories were created in a Patient Voices reflective digital storytelling workshop facilitated by Pilgrim Projects in 2008.

A rich mix of people, heritage and communities within communities, containing wisdom and knowledge from many cultures are what make Newham. We can all learn from these communities and how they get along together, through these stories which explore the meaning of life, death and health – and being part of a community.

Going into hospital presents particular challenges to people with diabetes. These stories were developed so that the Think Glucose toolkit would be able to carry within it the experiences and stories of some of those patients.

The stories in this series were created by final year medical students at the University of Leicester Medical School participating in an August 2008 Patient Voices workshop as a student selected component (SSC) of their training. The workshop was a collaboration between the University of Leicester University School and Pilgrim Projects intended to investigate the use of the Patient Voices digital storytelling methodology as a reflective tool in medical education

These stories were created in a CDS workshop (co-facilitated by Pip Hardy) in Saskatoon, Saskatchewan, Canada, as part of the evaluation of the Live Well™ with Chronic Conditions Program for Aboriginal people. The program is based on the Stanford Chronic Disease Self-Management Program, which also forms the basis of the UK’s Expert Patient Programme.

The stories in this series were created with the intention of illuminating and informing the design of technology and services for people with arthritis. All the stories were created in Patient Voices digital storytelling workshops by people with arthritis who are all volunteering and working with Arthritis Care. The project was funded by the White Rose Health Innovation Partnership and organised by the Medical Education Unit at Leeds University Medical School.

These stories of faith, vocation and calling were created by members of the Society of the Holy Child Jesus at digital storytelling workshops run by Pilgrim Projects in 2008. More information about the Society of the Holy Child Jesus can be found on their website.

These stories are part of the ‘Healing journeys’ series, and were created at a Patient Voices workshop at Sheffield Hallam University in March 2008. The workshop was organised by the Occupational Therapy department of the Faculty of Health and Wellbeing. The storytellers are all members of the Service User and Carer Network Forum developed by the Social Work team.

The stories in the ‘Work in Progress’ series have been created by disabled people in order to share the experiences, challenges and successes of their careers.

These stories are a collaborative project between the National Audit Office and Patient Voices, created to accompany the NAO report Caring for vulnerable babies: the reorganisation of neonatal services in England.

Told by interpreters, service users and service providers, the stories are intended to highlight the need for professionally qualified interpreters where English is not the first language, in order to improve access to all public sector services, and especially to reduce health inequalities and improve health outcomes.

These stories are part of the series ‘Having a stroke: being a parent’. They are the result of a collaboration between Patient Voices, Connect, Guy’s and St Thomas’ Charity, and the Stroke Modernisation Initiative.

These stories are the result of a collaboration between Patient Voices, the Royal College of Nursing and Connecting for Health to consider the influence and potential transformative power of new technology on the future of nursing.

These stories were been gathered as part of the Royal College of Nursing ‘Improving continence care in care homes’ and ‘Perioperative fasting’ projects, but they touch on universal issues of dignity, respect, trust and equity.

These are stories told by carers from the Carers’ Resource, Harrogate, Craven and Airedale about their experiences of caring for people with a wide range of conditions and ages.

In its professional development work, the Royal College of Nursing attempts to involve people from across disciplines. These stories are intended to share experiences and celebrate successes.

These stories are about the experience of living with stroke and aphasia and how people move forward with life after stroke. We hope they will inspire service providers to respond creatively to the challenge of improving services, opportunities and lives.

These stories cover a variety of topics and contexts. Most were created in Patient Voices Reflective Digital Storytelling workshops that were open to individual participation, rather than being project-based. Some were created in pro-bono workshops run by Patient Voices, and some were created individually.

These stories from the Working in Partnership Programme reflect the experiences of, and benefits from, an enlightened programme of self-care.

These stories from the Department of Risk Management at NHS Tayside address issues of patient safety and risk management and were born of the desire to make better use of patient stories.

These stories were all gathered during a one day workshop for NEYNL patients and staff involved in improving the quality of services across a diverse range of conditions. Some of the stories highlight the need for better care, while others celebrate the improvements made, particularly as a result of the clinical microsystem approach to quality improvement.

These stories look at the work of the NHS Heart Improvement Programme from the varied perspectives of nurses, patients and the national team, who are working to improve care for people suffering from coronary heart disease.

The relationships between carers and healthcare professionals and how they affect quality of care are covered in Charles’ stories.

Grace and Joe’s stories tell of how a tragic personal loss can lead to a life-saving chance for others.

Alison’s experiences of healthcare systems as a carer are viewed in the light of her professional role as a part of the system. She highlights some common perceptions and mis-perceptions with regard to carers and certain conditions.

David Clark extols the many virtues of the NHS, but recognises that some conditions attract more attention – and better services – than others.

Communication is essential in healthcare. Emma’s stories illustrate how some patients may need specialist help to communicate if they are to participate as fully as possible in decisions about their care.

Monica’s stories illuminate the relationships between carer, patient and healthcare provider, focusing on risk and joined-up thinking and working.

Ian’s stories cover topics including concordance with treatment, working as a team, and developing systems that benefit patients.
Ian Kramer died on the 28th of May 2006 at St Nicholas’ Hospice in Bury St Edmunds. Ian was passionate about making things better for patients and gave generously of his time and 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.

Creative Commons License

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:”.

To link to a particular story, don’t link to the video file, instead 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:”.

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.

Want to make your own stories?

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