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Patient Voices: Stories from open workshops


Stories from Patient Voices open workshops

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 Pilgrim Projects, and some were created individually. One reason for holding open workshops is to give workshop sponsors an understanding of the Patient Voices storytelling process and experience in order that they might better understand what they will be asking storytellers to do.
Information on our open workshops, and the latest schedule of workshop dates can be found here.

Stories from the Patient Voices virtual workshop in October 2020

Imagine if this was your Mother…

Stories from the Patient Voices open workshop on the 1st February 2019

Onwards and upwards
Claudia has been riding a bike since she was a little girl. Mostly, it’s been enjoyable. There’ve been a few painful crashes but Claudia has picked herself up, dusted herself off and got back in the saddle – – a bit like life. When she was diagnosed with ovarian cancer, she picked herself up, dusted herself off, and got back to work (and cycling), with the support of friends and family. A second bout of cancer left Claudia and her loved ones a bit more shaken, but more determined than ever to get back in the saddle and enjoy the ride.

Hurting each other
This is Lindsay’s story.

This is Claudia’s story. It could be that of many of her friends and colleagues who give care – and who have received care. Claudia is no stranger to challenges and train journeys… she has walked, cycled, driven and taken the train – many times, many tracks. This story follows on from her first story ‘Stickers’.

Are you sure about that?
This is Anda’s story.

The storyteller shared this story with the local Matron and senior ward sister, which led to concrete improvement in practice. These changes have since become Trust-wide recommendations and have the potential to drive improvements to policy and practice more widely, if given support and resource for implementation.

Stories from the Patient Voices open workshop on the 9th September 2018

Time for a peace process?
The 1970s. Belfast. A message in a bottle. Literally. Personally.
Outsider. Time to move.
The 2000s. Medicine. A message in a bottle. Figuratively. Professionally.
Outsider, again. Time to move again? But this time, where to?

A life imagined, a life strived for, a life denied. This is Bianca’s story of the hope, joy and pain, the complex interplay of emotions, personal and professional relationships, that face someone trying to conceive through non-conventional means.

The gift of hopelessness
When Rita’s lively, energetic son unexpectedly falls asleep on the back of her bicycle, it marks the beginning of a long – and often surreal – journey, as the malignant tumour growing in Brandon’s brain changes everything for the whole family.

MAST CELL ACTION is a new UK charity for people suffering from Mast Cell Activation Disorders (MCAD), newly recognised disorders arising from the inappropriate release of mast cell mediators, for which there is limited knowledge or treatment. It provides support for patients and their doctors, work to raise awareness of MCAD and fund research. If you have been affected by MCAD or would like more information, visit the MAST cell action site. You can support their work here.

Stories from the Patient Voices open workshop on the 13th April 2018

Autumn leaves
This is Grete’s story.

How much more?
This is Susan’s story.

The Sharon Underwood effect
This is Tracy’s story.

On being at sea
This is Robin’s story.

By the book
This is Rachel’s story.

Academic writing
This is Grethe’s story.

This is Cat’s story.

Høstlige blader
This is the Norwegian version of Grete’s story.

Barren or bountiful? Time for Plan B…
Creating life is something you just expect to be able to do. This is a story about what happens when these expectations are not fulfilled.

A love story: for Ken
When Elizabeth’s husband Ken is diagnosed with bone cancer they plan one last dream – theend of life care at home they hope will be best for all the family. The challenges of mobility, beds and the growing need for pain relief are exacerbated by issues of weekend and bank holiday working. A committed and dedicated Community Matron solves that problem but, although their final dream cannot come true and Ken has to go into hospice care, those last hours are still spend as a family and a couple in love.

Finding my niche
When she finally becomes the nurse she always wanted to be, Kate finds dissapointment and disillusion in the limitations, constraints and compromises of day to day life on the ward. Then a change to nursing stroke patients and the opportunity to research into, and suggest improvements to, stroke care means that she has at last found her niche – as a nurse *and* a change agent. Through the School for Change Agents she can now share and spread her skills and experiences so that the many, not just the few, can begin changing care for the better.

An education
When ‘Emily’, a doctor in training, finds herself in a situation where she is uncomfortablewith decisions and actions taken around her, what is she to do? What must we do to provide safe, respectful, supportive environments and protocols within which everyone’s voice in the processes and structures of healthcare education and provision can be heard?

Paula recalls memories of her beloved Gran, who died eighteen years ago, but who remains much missed.

Mama Yawa
Why do we become leaders, researchers, carers, midwifes? What makes people see us as mothers or queens? Dawn’s life and career path leads her on a long journey, both personal and professional.

Empty chairs
The unexpected transition from being a mother to her daughter to being a mother to her own mother prompts a poignant reflection on her newly acquired membership of the sandwich generation, caught between caring for the young, and caring for the elderly.

A brave and powerful story, describing a journey from abuse to recovery, via self-harm and indifferent support services.

Hearing Patient Voices: healing and recovery through digital storytelling
This is Pip Hardy’s ‘virtual’ presentation to the Second Summit for Global Mental Health, Capetown, South Africa October 17th 2011 (

Running against genes
One woman finds that the beautiful genes that control her nature and growth have also brought an unwelcome legacy from her family history. She takes medication every day to deal with her high blood pressure, and runs – not to escape her high blood pressure, but against it.

For Issy
Steve’s eldest daughter, Ellie, died of Mucopolysaccharide disease (MPS). When he is diagnosed with a grade 4 Glyoblastoma, Steve knows that one of the things he wants to do is to leave a message for his younger daughter, Issy, about how important she is to him.

The sun also rises
For Eva, the ability to use the right words to express herself has always been important . At 84 years old, the possibility of a diagnosis of Dementia is a dark and frightening one. But the inspiration of a sunrise, and the joy of her garden bring back to her that, as the sun sets in one place, so does it rise somewhere else.

Another bag of syntocin?
A nurse and a first-time mother, Rosie wants to avoid a caesarean section. Her experience on labour wards means that she knows birth is a painful process – so why does she feel so little pain when the contractions start? Should staff just keep giving her more Syntocin?

A carer’s story
How should we regard the support we provide to carers? As a benefit for them, or as a recognition of the work that carers do on behalf of society?

It doesn’t happen here
One family’s story of attempted suicide, seen through the eyes of a consultant psychiatrist, illustrates the gap between the risk-aware culture of the UK and the impossible aspirations of Nigerian mental health policy.

A psychiatric consultant reflects on a busy night shift and wonders whether there is something more that could be done for those who are trying to end their lives in one way or another.

Not our concern now
A university tutor tries to help a student challenged by more than study problems.

Parents lost to alcohol
The tragedy of lives, families and futures lost through alcohol abuse is poignantly described by a friend who witnesses the destruction it can wreak.

A chocolate watch
Weaving together painful memories of Kristallnacht, the kindertransport and a tearful farewell to her mother, Eva finds hope and resolution in a happier memory of a hug … and the treasures her mother valued most.

Alwyn works with people with learning disabilities, mental health problems and behaviours that challenge. For them, recovery may seem a far place down a difficult road, but Alwyn’s own experiences underpin his conviction that it is a journey worth undertaking.

Look both ways
When a client’s life is at risk, Francis acts instinctively and courageously – but would he do it again?

Looking for my mum
When Jenny’s mum becomes seriously ill, she finds herself balanced precariously between her professional role as a nurse and her personal role as a ‘good’ daughter – the kind that doesn’t rock the boat.

From darkness into light: new worlds
For many people, the uncertainty of waiting for a diagnosis can be almost unbearable. As Eva approaches her 82nd year, forgetfulness and confusion force her to confront the almost-unthinkable possibility of Alzheimers. As she awaits tests and results, her reflections lead her to a place of acceptance, and ultimately, peace.

Climbing mountains
When a riding accident leaves Dan with two broken arms, he has plenty of time to reflect on the lack of humanity of care in some of the best-equipped hospitals in the world – in stark contrast with the care offered in some of the poorest hospitals in Africa.

A trip to Ethiopia opens Laura’s eyes to the value of education and the price of a smile.

Bicycle clips!
A bicycle accident results in a broken arm – and an important lesson learned!

Voices from the heart of healthcare
This story provides an introduction to the programme. It is, however, about 17 minutes long (as it includes several stories) and hence may take some time to download.

A tribute to St Nicholas’ Hospice
Marilyn Kramer pays tribute to St Nicholas’ Hospice, where her son Ian died peacefully and with dignity.

The dormouse and the doctor
A. A. Milne’s poem can help illuminate the perceptions that patients and clinicians hold about their relationship and reveal the unintended damage that occurs when patients do not exercise choice, voice and control.

Something for free
A small voluntary organisation that provides free counselling for those who would not otherwise have access to such a service is struggling to survive in the face of funding cuts. If the prevailing attitude does indeed prevail, what future is there for voluntary organisations in the co-production of care? If, after seeing the story, you would like to support Hitchin Counselling Service, please contact The Administrator at Hitchin Counselling Service, on 01462 790806.

Getting it right
Getting it right when learning relies on getting it right when teaching as well.

Who takes responsibility for the dying? Who gives that responsibility, and how can it be handled sensitively by those with only a clinical connection to a case?

Only connect: a life in stories
A life lived in stories, told in stories and shared in stories, is honoured by the caring and compassionate attention of hospice staff.

For a relative or a carer the language of healthcare can be harsh, frightening, guttural and unfeeling – even when interpersonal relationships are strong and care is effective. This story uses a written style that attempts to highlight that contrast.

Mental Health difficulties can have devastating effects on individuals and their families. Julie’s story reveals her courageous and loving attempts to overcome tragedy and offers hope through her recognition that life goes on.

Taking my life back
For years Valerie tried to persuade her doctors that the debilitating and chronic pain she suffered was a result of a blow on the head from an auto accident in her past, the effects of which were compounded by a another neck injury 35 years later that together triggered chronic Fibromyalgia Syndrome. It wasn’t until she believed she was dying that she decided to take matters into her own hands…

Cycling down memory lane
The effects of a cycling accident trigger memories of an earlier incident in Ros’ childhood, and provoke a reflection on the nature of memory.

From the other side of the bed
As a healthcare professional, Rosie is unprepared for a potentially life-threatening diagnosis. The support of loving family, friends and colleagues reminds Rosie of her good fortune in being part of a larger family of healthcare practitioners.

Not just a healthcare assistant
Cleopatra’s early life experiences laid the foundations for her caring and compassionate approach to her work as a healthcare assistant. When she comes to the UK, the RCN provides support and encouragement for further training and career development.

Moving from sunny California to a chilly 1960s boarding school in England would be a shock to any system. Gardening offers some solace but it is many years before healing takes place and the transplant can be considered successful.

Feeling suicidal
Julie Coleman’s second story offers a wry and personal look at depression, the effects of the drugs, and the important role of friends and family.

The forgotten memories
During her childhood, Lara views her father as the person who is always ‘there’ for her. Only later does she realise that it was her mum who was with her through thick and thin, and a series of painful and difficult operations.

A week in the life of…
The journey from one gender to another is never easy. Kate reflects on some of the highs and lows of becoming a woman, highlighting important trans issues.

The boy whose best friend was a hoover
Duncan is both a joy and a tribute to his loving family. But, despite his own growing capacity for affection, there is a lingering concern as to whether, in the future, anyone else can give him the love and care he needs.

A patient meditation
A frozen shoulder can generate agonising pain at all times of the day or night. When painkillers and steroids fail to provide relief, a particularly long night provides an opportunity to meditate on the nature of suffering.

Go around
Cathy loves her job as a flight nurse and knows that excellent communication is critical if she and her team are to save the lives of the patients they rescue – and protect their own lives. Cathy’s story was created at a workshop funded by the University of Colorado College of Nursing and jointly facilitated by the Center for Digital Storytelling and Patient Voices.

Living with depression can be challenging and heart-breaking, affecting the lives of everyone with whom the sufferer comes into contact. As a child growing up with depression, Melanie was able to develop inner resources that have stood her in good stead throughout her life.

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