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Patient Voices: Staff stories – the DNA of Care

Staff Stories – the DNA of Care

When long-established healthcare systems change in such a ground-breaking manner as they are doing, the role, place and sense of identity of professionals within that system can and must change. With those changes to role come questions about professional identity. How do we provide new and appropriate places and spaces where professionals can explore and reflect on their changing and changed identities?
Just as care in the NHS is free at the point of need, NHS staff carry within them a vast reservoir of expertise and experience that is free at the point of telling: their unspoken, unheard stories of care and caring.
The intertwined relationship between patient care and staff well-being has been likened to the double helix. And so the stories we tell each other are like the DNA of care, transmitting information and shaping cultures, offering learning opportunities and, sometimes, healing.
There is often a cost to gathering these stories, but…
In the first half of 2016, 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.
Staff spent three days reflecting on their experiences, developing and refining a script, recording a voiceover, selecting images and editing their own short videos.

The stories were launched on the 2nd November 2016. Over the next twelve months, the use of the stories and the effects of the project were monitored and evaluated.

Sharing stories and resilience

On the 16th November 2017 the Royal College of Nursing brought together experts on resilience in health care, including Dr Pip Hardy and Dr Karen Deeny, to discuss the topic of resilience in the workplace. Their presentation can be seen on the Presentations page, and the short interview below puts forward their ideas on resilience in the workplace, arguing for a more critical, psychosocial perspective in the light of their experiences of the learning from the DNA of Care project.

Sharing the learning

One year on a learning event was held on the 7th December 2017 to reflect upon and disseminate the experiences of those that had taken part in the project.

Exploring other topics: Equality and Diversity, Workforce Race Equality and Bullying and Harassment

In 2018, further workshops explored some of the stories of equality and diversity and race equality within the NHS staff experience. In 2019, a workshop provided the opportunity for staff to explore their experiences of bullying and harassment.

Using the stories: facilitation packs

In response to requests from NHS staff for materials to support facilitators in using the stories in staff development and quality improvement programmes, we have developed a series of facilitator packs based around a set of six key topics. The packs and supporting presentations, can be found here.

Stories of staff experience

In the initial phase of the project, recruitment targetted storytellers who had stories to tell about:
• critical incidents and never-events
• clinicians in distress (wounded healers)
• staff who are also carers
• leading change across boundaries
• compassion.
These are their stories.

Meetings or action? A business or healthcare? A business plan or a care plan? Many years ago, Becky learnt that the truth, even when hard, is the only thing that makes sense – and what matters – in palliative care. If she is to speak truth to power now, what will she say?

What do you see?
A junior doctor’s early career can be a sequence of highly-pressured rotations, moving from clinical area to clinical area, always the one responsible for picking up the loose ends, carrying the extra load. But when the need to fix, the commitment to cope, takes a young doctor beyond the normal structures of the system, who will support them?

Floristry, perhaps?
Speech and language therapy is not all children with lisps or stutters. For some speech and language therapists it means working with people who have suffered major surgery, who have ongoing facial tumours, limited life expectancies. These peoples live’s have changed beyond all recognition, and a young speech and language therapist feels she is their only chance of some semblance of normality, communication, relationships. But that struggle has been a long, hard and debilitating one. The seeds of change she hoped to sow when newly qualified have not germinated, let alone flourished and bloomed. Exhausted, she may have to look for blossoms elsewhere…

One of the key tasks of a Supervisor of Midwives is to support other midwives in their professional actions and duties. Sometimes, unfathomable tragedies strike and, when one does, Rachel learns that the hardest and most import thing to do can be to stay, to be with colleagues, with the team through the crisis – just as the vocation of a midwife is to stay, to be with, the mothers they support.

Sheena’s family life with an autistic son has always been demanding, but rewarding. Her professional life as a psychologist has also always been demanding, but was once rewarding. Now, ironically, as her son’s achievements bring her more sense of reward, her experience of the NHS is of an organisation becoming less rewarding, less fulfilling for commited staff. How can she steer a path between these two massive forces in her life that will take her on her own journey?

Why would they even say that?
As an NHS manager, Yvonne has to be the consummate professional, to support her staff through their career and life choices. She has to be accommodating and supportive when people make and come to terms with, their life choices. But sometimes the life choices open to others are choices that are not open to Yvonne. Where then, is she to find support and understanding of the type that she chooses and she needs, that respects her choices and her rights to grieve if, as, how and when she chooses?

An ordinary surgeon
There is more that connects us than divides us. Graham had always viewed his career path and contributions as a public health consultant to be on a very different path to that of his grandfather, a surgeon – an ordinary surgeon. But then comes the realisation that his grandfather’s path and career goals actually have more points of connection with Graham’s own. His grandfather lived, and worked, with special people through special times but always towards the same goals that have driven Graham’s own career.

How does that make you feel?
What’s it like to work as a Patient Voices digital storytelling facilitator, part of a team helping dozens of NHS staff to tell their own stories? What’s it like to be there at the telling of stories of loss and growth, achievement and innovation, doubt and commitment? How would that make you feel?

Kirsty’s story
A couple of days planned to be spent as quality father and daughter time together visiting concerts and restaurants takes a marked turn. For a father, who is a consultant, and his daughter, a medical student, a rare and unusual condition – surgical emphysema – brings shared understanding and new experiences of what it means to be father, daughter, patient or clinician.

One day, Natasha, a fit, capable pain consultant has to enter A and E through the “customers’ entrance” for the first time. The effect of crippling migraines for months plus the effect on her sense of self lead to a greater understanding of what it is to be a patient, and how impermanence permeates through all aspects of our lives. That, in turn, leads to growth in her understanding of compassion and resilience.

No one should have to walk home in their pyjamas
Chris’ grandfather escaped a Japanese POW camp in World War II and walked to liberty. He escaped from the mental hospital in Hull where he was confined when he returned to the UK and walked across the city in his pyjamas to get back to his family. They supported and protected him, and he became a paint salesman. His granddaughter now uses paint, amongst many other media, as an art therapist – providing support and an escape route from social isolation and mental illness for service users and refugees. She has a dream of creating city studios in a similar way to Maggie’s Centres which provide support for people with cancer. But those sorts of escape routes are under attack from budget cuts and austerity – will she be able to continue to help people escape to freedom?

The boundary between professional and personal can sometimes become blurred. When patients are given bad news and devastating diagnoses, is it really unprofessional to cry with them? David’s job as an Associate Practitioner requires him to be professional but, as a caring human being, he shares his patients’ grief. One woman teaches him that patients can care for professionals too and finally, after a time of darkness and despair, David has learned how to care better for himself so that he can continue to provide the kind of care he wants to give his patients.

The Moonlight World
What we think, what we write, what we do are shaped by our experiences – of our own lives and of the lives of others. Those experiences underpin our skills and motivations and so who is better qualified to lead, speak of or work towards, service improvement, patient engagement and patient leadership than those who have experience as service users?

Measuring what counts
It is a dark day when Richard realises that he is not cut out for a career as a quantity surveyor. No job, no prospects, no idea of what he wants to do, years of investment in training wasted. When an opportunity to train as audiologist presents itself, Richard realises that what he wants is to help people. That is the beginning of the shift from quantity to quality, from counting what can be easily measured to measuring what really counts.

Forgotten to remember
When we have concerns about our lives, family, children or health we take them to our GP. Each GP practice in England listens to and carries the concerns of thousands of people. But the GPs in those practices have lives, families, children and health concerns of their own. One GP tells a personal story of how vocation, dedication and career can be crushed between those pressures.

I’m sorry
Sharon’s nan was a stroke victim. Perhaps that’s why Sharon works in a job that requires her to listen to patients, find out what matters, what works well and then use what she has learned to identify and support best practice. At a listening event, Sharon meets Amber, who had a stroke at 19. Amber has her life ahead of her; she is courageous, resilient, resourceful and determined to lead a fulfilling life, despite instances of poor care – and Sharon learns from her what it means to be a stroke survivor and live life to the full after stroke.

Paediatrics was the obvious choice for Claudia: she was curious and caring, fun-loving and full of energy – which was just as well as she found herself running faster and faster to keep pace with clinical work, research and leading a team. Only when life deals her some challenges, does she understand the true meaning of resilience, become able to stop and find a slower pace, learn important lessons about caring and being cared for….and discover the value of stickers!

Critical care
It can be difficult, when caring for critically ill patients, to remember that they are people too, with lives, families and feelings. Louise was a critical care nurse – in every sense of the term. When a patient dies unexpectedly, she questions whether she did the right thing by the patient – and the patient’s husband. But his gratitude taught her an important lesson about what care really means so that she can now focus on the positive and help her colleagues to celebrate their achievements.

Making a difference?
What is it that really matters to patients? What makes the most impact? Is it the business continuity plans, reports and cost benefit analyses that management requires? Or is it the human, caring and compassionate care that lets people know that they matter? Once a physiotherapist and now a manager, Denise reflects on one particular patient and the difference she made to that family.

Take my hand and we will grow
As a child, Emma loved playing in her grandparents’ garden and considered a career in art. But caring for her grandma allows her to realise that a more caring role is what she really wants. Now she loves her challenging and exciting job as an infection prevention and control nurse: but it can also be isolating and difficult – especially when she has to challenge others. A particularly resistant strain of bacteria presents an opportunity to do things a little differently and, as it turns out, education and teamwork work really well to overcome the challenge and to care in a way that reconnects her to her grandma.

The wooden soldier
Small things can make a huge difference. Take an ingrown hair, for example… a tiny thing which can cause pain, embarrassment, isolation, debilitation, depression. On the other hand, small acts of kindness and humanity can also make a huge difference; like taking the time to share conversations about common interests – even when – or perhaps especially when – those interests are a little unusual!

You can do this!
Supporting women when they are vulnerable and in pain is the role of a midwife. Elaine learned the hard way that that courage, confidence, care, reassurance and gentle encouragement are essential to women in labour. As part of her commitment to enabling every woman to have the kind of birth she wants, Elaine is always ready to say those four words that every woman in labour needs to hear.

The light on the water
The DNA of Care project is underpinned by the philosophy that staff and patient stories are intertwined. In a similar way, our personal and professional life experiences and learning are inter-connected and can shape our career choices and approaches to our work. Exploring, better understanding and sharing these connections may be one way of positively influencing cultures, and enabling and sustaining both our own and others resilience, compassion and focus on the art of the possible.

The choices we make in our personal and professional lives may be made despite, or because of, our own experiences, but they are always affected by them. A consultant anaesthetist tells of how the discovery of his own physical and emotional vulnerabilities when he became a patient has informed his care for his patients, his colleagues and himself.

Just five minutes more
Working in a mortuary was not an obvious career path for Michelle – she’d been a red coat at Butlins. It’s a hard, challenging role for staff, that places demands on their humanity and their ability to care for patients beyond the end of life that are personally affecting for staff, and personally important for relatives and loved ones of the deceased. Beyond the doors of ‘Rose Cottage’ or ‘Ward 13′, Michelle is welcomed into a supportive community of practice and network of peers by a caring mentor. She, in turn, works to give back into that community through her professional practice and teaching.

Time to care…
Jacqueline has been a nurse for the last thirty years and her personal opinion of what makes a good nurse has not changed in all of that time. A diagnosis of cancer, going through treatment and having a temporary tracheostomy reinforced for her what is important for patients. It is not necessarily the clinical skills, the documentation or the care planning that always matter s to patients, but rather the small acts of kindness and compassion that take just a little more time.

Red shoes
Working in out-of-hours care is always varied, usually challenging, sometimes thankless, often difficult, frequently frenzied: busy people picking up the pieces when other services are not available. For the service to be effective, there must be commitment, determination and excellent interprofessional collaboration.

A little bit awkward
As a nurse, Rebecca wants the best possible care for her elderly patients. But taking on the challenge of bringing about transformation in healthcare can be discouraging, isolating and exhausting. Joining the School for Health and Care Radicals offered support, inspiration, skills and tools for leading change, and the important realisation that change works better when people work together.

Stephanie loves her job as a maternity support worker and the privilege of supporting women when they give birth. The transition from clerical to clinical work hasn’t always been easy but, with support from colleagues, she has grown in skills and confidence. Now, as a second birth attendant in the home birth team, her growing skills and abilities contribute to her ability to make a difference to women and their families.

Even when she was young, when Fay saw something that needed fixing, she fixed it. As a nursing sister on a busy urology ward, she has plenty of opportunity for fixing. When she becomes a patient, not only does she continue to try to fix things but she also has the opportunity to see things from a different perspective. So, when a frustrated patient makes it clear that there is a problem with the appointments system, Fay rolls up her sleeves and gets on with fixing it.

Baby steps
It can be difficult for a health visitor to know where to start when supporting vulnerable, complex families. The fear that a baby may die and the needs of the family can be overwhelming. Sometimes the baby can be forgotten as professionals focus on the needs of the parents. Effective restorative supervision enables the health visitor to explore the emotional impact of working with complex families, be compassionate and keep the baby in mind. Small steps which build on the strengths in a family, working in partnership and walking in the baby’s shoes can improve outcomes.

Now I know health?
As a physiotherapist and researcher, Nick knows a lot about health and pain. As a person, he has always been healthy, capable, fearless, limitless resilient. A pulmonary embolism offers opportunities to learn about vulnerability, limits, loss of control and identity and, of course, pain – as well as a deeper understanding of his patients and himself.

Stories of equality and diversity within the NHS staff experience

These stories explore some of the different dimensions of equality and diversity as explored, experienced and expressed by NHS staff.

Good enough?
Vikki loved working as a children’s physiotherapist. So when she develops mental health problems and obsessive compulsive disorder (OCD), she loses not only her job but a part of herself. The road to recovery has not been easy but has enabled her to discover new talents and strengths, to support others with lived experience of mental health problems, to return to her beloved job and realise that she is, indeed, good enough.

Not just pushing a wheelchair
Any one of us could become a carer at any time, without warning. Being a carer is, as Tony discovers, about more than just pushing a wheelchair. He cares for his wife, Lydia, who is disabled, 24 hours a day, seven days a week, 52 weeks a year. It’s a job with no pay and no holidays but Tony does it willingly and lovingly and, after 30 years, it’s just who he is.

Dare to dream
Assumptions can be misleading, whether in response to racial diversity, disability or profession. Sujaa reflects on the challenges and prejudices she has faced – and overcome – to become a consultant psychiatrist. Sujaa is living proof that, with strong values and determination it’s possible not only to dare – but also to realise – your dreams.

As a black woman, Sam is accustomed to people making assumptions about her, but even she is shocked when the prejudices of hospital staff mean that her son’s diversity is equated with criminality and his treatment is delayed as a result. A gifted poet, Sam responds with a plea for greater understanding, open-mindedness and compassion.

Believe in me
Lydia was born with Arthrogryposis, but it was a fall from a swing when she was 10 that resulted in her needing to use a wheelchair. She has overcome many of the barriers that face people with a physical disability and has earned the respect of friends and colleagues, but there is still one more barrier to overcome: belief in herself.

A future with Autism?
When David’s parents were told that he didn’t have a future, they responded by encouraging David to push himself. A diagnosis of Asperger’s Syndrome enabled him to go to a special school where he did well and learned to be independent – but he always wanted a job. An opening at NHS England for people with lived experience of Autism meant that David could achieve his goal and also inspire others that there is, after all, a future with Autism.

Stories exploring what the NHS Workforce Race Equality Standard (WRES) means to staff

Studies show that a motivated, included and valued workforce helps deliver high quality patient care, increased patient satisfaction and better patient safety. Implementing the Workforce Race Equality Standard (WRES) is a requirement for NHS commissioners and NHS healthcare providers including independent organisations, through the NHS standard contract. The NHS Equality and Diversity Council announced on 31 July 2014 that it had agreed action to ensure employees from black and minority ethnic (BME) backgrounds have equal access to career opportunities and receive fair treatment in the workplace. This workshop gave staff opportunities to explore the resonances between their own personal stories and the aims of the standard.

Winifred’s journey
In the 70th anniversary year of both Windrush and the NHS, June speaks of the echoes of her grandmother’s journey in her own.

Label love
Lesbian, Woman, Nurse, Socialist, Feminist, Pakeha, BME, Diverse learner, Leader, Half-caste. A spiral of labels marks out an expanding path of personal growth.

It takes courage and strength to keep going in the face of adversity. Throughout her life, Virginia has been treated differently, like her mother before her and her children after her. But she has overcome these challenges, and others that life has thrown at her, to become a champion for equality, diversity and inclusion in the NHS.

Where are you from?
Owen is used to being asked where he is from. Although his usual response is brief before changing the subject, he decides to indulge David with a more detailed answer. As the story unfolds, it transpires that, although they have walked similar, parallel paths towards their chosen profession of occupational therapy, the perils and pitfalls they have faced are very different.

Miss Opportunity
As a child of the Windrush generation, Lorna’s future looked bleak until Miss Opportunity came to call. Throughout her career, she has had to take advantage of the opportunities that did present themselves in order to develop. As she looks forward at the future of a younger generation, she wonders when and whether Miss Opportunity will appear for them.

Litter or legacy?
After 30 years career in nursing, Vanessa is considering the legacy she will leave when she retires. Coming from a close and happy family where everyone was treated as equals and open discussion was encouraged, Vanessa learned early on that ‘if you know better, do better.’ This important lesson has stood her in good stead as she continues to challenge inequality and injustice.

Entertain and educate, persuade and inspire
Taff works with finances, numbers and graphs. But when he hears the stories of staff and service users, whether it is the security guard with a back injury, or the wife who is assumed to be a carer because she is black, and her husband white, Taff is reminded of how his own father taught him the power of stories to entertain and educate, to persuade and inspire.

Stories exploring the staff experience of Bullying and Harassment

Bullying and harassment is a feature of many large organisational cultures. These stories were created in a Patient Voices workshop held in February 2019.

Just maybe…
A new job and a new colleague leave Chris shaking and fearful of going in to work. A continuous regime of belittling, sniping, shouting, and laying traps eventually drive Chris to fury and, eventually, to taking his frustration out on the cat. Now, as a Union rep, he is able to offer support to others facing unfair behaviour.

When Elsie, a member of staff, behaves oddly, is bullied and eventually faces disciplinary action Martin, the union representative, realises all is not as it seems. His previous experiences lead him to ask for an assessment, and Elsie is discovered to have Autism, Dyslexia and Asperger’s. Attitudes towards her and her behaviours change, support is put in place for her – and the bullying stops. Union support, and the Equality Act 2010 may have helped Elsie – but what of all the other Elsies out there?

Amanda is a committed, caring midwife, dedicated to improving outcomes for mothers and babies in her care. Eventually, her experiences lead her to leave the profession she loves.

Rise above it
Throughout her life, Deborah has tried to ‘rise above it’ when she’s been treated unkindly. But when unfair treatment at work makes her life a misery, Deborah loses confidence, dreads going in to work and becomes ill. Gradually, with time, professional support and medication, she is able to recover her sense of self, return to work and ‘rise above it’.

Jo was used to hierarchy and a command and control approach, but when she speaks up, raising concerns about patient safety, she is silenced by management; her words unheard, policies ignored. After a 30 year career in the NHS, her self-esteem and confidence disappear and she becomes seriously ill.

Rescue remedy
Once a culture of bullying and harassment takes root in a team or organisation, whether through cultural change or new management approaches, it can become insidious and difficult to uproot. Naomi was one of several colleagues in her team bullied by one line manager. The behaviour was long-term and eventually caused a grievance to be raised. The bullying not only affected Naomi’s mental health, but also had a knock-on effect on her family. Recovery is possible, but it takes support, understanding and time.

Stories created as part of the evaluation of the first phase of the DNA of Care project

As part of the evaluation of the first phase of the project and the gathering of learning, several storytellers returned to make stories ‘one year on’.

This is Lizz’ story.

Her birth plan
This is Rachel’s story.

In the club?
This is Yvonne’s story.

Staff stories from other Patient Voices projects

The Patient Voices Programme has, from its inception in 2003, facilitated the telling of stories by staff as well as patients and carers. Here are some examples.

Claudia has worked and lived in different countries, and different parts of one country. Medicine, healthcare, cannot save everyone and when death, severe illness or harm happen unexpectedly, a serious untoward incident (SUI) has to be reported. This is one story of one incident and one team in a hospital somewhere.

Want to make your own stories?

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