The catalogue of stories
This page contains a list of all the released stories, their descriptions, and some related keywords. Use your browser’s search facility (usually ctrl-f or cmd-f) to search this page for words of interest, or just browse down the stories and their descriptions. The links in the left hand column will take you to a page where you can access that story. The newest stories are at the top of the table. If you wish to search the whole site for ‘dementia’, for example, you can try the search option at the top of each page. Please bear with us as we fill in the gaps! If anyone has suggestions for useful keywords for a story, then please contact us.
The number of Patient Voices stories available has grown since we began in 2003, meaning that curating and searching for the stories is an ever-growing and more complex process. The main story pages group the stories according to the project for which they were created, which is usually – but not always – the fastest way to find a story with a particular theme or relevant to a particular condition.
| Title | Description | Keywords |
| Now or never? | This is Ariel’s story. | |
| Self belief | This is Opeyemi’s story. | |
| Milk or Manila? | This is Susie’s story. | |
| How do you value a smile? | This is Victor’s story. | |
| A bright future | This is Phoebe’s story. | |
| Yusef | This is Katie’s story. | |
| Coming back to life | The pandemic spreads. Amna’s world closes down and closes in on her. All is different, all is chaos. In a world of inconsistent rules and messaging, nothing is certain and there is no path forward. Then she finds a way. A way to relax, a way of gratitude, a way of relaxing. She learns new values, to process change. And, through a wellbeing course run by Glasgow Clyde College for the Princes’ Trust, she learns that she has a future. | |
| A moving story | For Aleesha, the pandemic means stresses and pressures in school and at home overlaid on a move from Scotland to England. Her sense of space, place and belonging recover when she starts a wellbeing course run by Glasgow Clyde College for the Princes’ Trust. | |
| Coming out the other side | For Jordan, the pandemic brings, not a few weeks off work, but the loss of employment, lack of family contact and isolation from friends. His planned 21st birthday celebrations in Las Vegas are another victim of the pandemic and lockdown, All of this exascerbates his eating disorder and depression, but his attempts to exercise and eat well are affirmed and supported by a wellbeing course run by Glasgow Cyde College for the Princes’ Trust which has helped his communication skills, confidence, CV writing and reflective skills. He is now looking forward to beginning an IT course at the college. | |
| Crazy lady? | In the midst of the pandemic, social norms shift, our fears change, our responses to the behaviours of others become unbalanced, shifted from what we and others expect. A light-hearted 5k run challenge with his brother is changed by misunderstandings and misinterpretations.. | |
| Never give in… | When David’s parents came to the UK, their sense of duty and fairness was not matched by the reception they received. Their determination and hopes for a better future were blocked. But they never gave up. They kept their sense of family values, even when their son was suffering from the entrenched bias and bigotry in society, systems and institutions that saw only his colour. But he never gave up. He went on a journey, finding in the Army achievement, success and recognition. That journey continued across the globe until it settled in the South-West. David never gave up on making things better – in schools, with challenged young people, and then in the NHS, with diverse staff and patients. This is his story. |
|
| Who am I and why am I here? | Who is Emma? Is she the professional cake designer? Is she the mixed-race wife and mother? Is she the mother who cared for her child for 211 days? Is she the “Equality, Diversity & Inclusion Lead”? Or is she here, in the NHS in the South-West, planning, writing and developing programmes and events to change nurses’ lives, doctors’ days, physios’ routines and health care assistant’s training because on the darkest of those 211 days, those staff around her were her light? |
|
| Little nurse me grows | When Sun first comes to Somerset as a nurse, the weather seems cold and the people distant. But the countryside is beautiful, and the sky so blue. She grows into her role and learns how to help the community understand her, but it is only when she can encourage and support another nurse from the next generation of diverse NHS staff in the South-West that she truly feels she has grown and is at home. | |
| Imagine… | Imagine if this was your Mum…. | |
| A freak accident | A young boy, kicked in the head by a horse. A mother desperate to ensure he receives the best care for his PTSD, anxiety and agarophobia and support from services and professionals that will help him to resume his previous life and education. Systems and professionals whose attitude is characterised by the comment that: ‘He’s too good at maths to have a brain injury’. |
|
| This is our child | A child. A child who is talented, clever and kind. A child who is battered and bruised and now hides behind a mask. New parents who have seen that child with her mask on, and their mask off and hope that, one day, she will be able to abandon the mask and show her true beauty to everyone. | |
| Brave | Bravery comes in many forms. Bravery in the relationship between a mother and a child with mental health issues is something that both must learn, both must use, and both will learn from the other. | |
| And so, we drive… | Sometimes the safest of spaces a mother can make for a troubled child can be surprising – a small space, in a small, personal piece of the day, where they can be together, travelling through the dark, hoping one day to arrive in the light. | |
| How does a Mum? | How does a Mum calm fears, break bad news, support and nurture? How does a Mum cope, care, strategise and plan ways to move from condition red to condition green? How does a Mum find the energy, the resources, the stamina, the support she must have? She does it with her own love and with the support of others who feel the same challenges and pain. | |
| No beginning, no end, and trying not to drown in the middle | An emotional and mental maelstrom. A child lost in it, barely keeping her head above water, and becoming exhausted by the struggle. A mother, desperate to save, not knowing how best to rescue, and trying herself to stay afloat through the storm. | |
| Twenty-eight | Stella chooses to fly higher into a new life of study in a new city, in a new country. But emotional and personal loss eventually weigh her down, more and more, until she is pulled down to earth again. Help from friends, services, and a crisis team help her to begin to rise again as she begins to move forward once more in her journey. | |
| Emptiness | Robin fills the emptiness of depression with the emptiness of cans. He battls the heaviness, chilling cold and pointlessness with more. An attempt to talk to his GP about depression provides no relief. That has to come from within, when he changes his life, pushes forward in his education and becomes a father. |
|
| Mind the gap | Depression brings gaps into Karen’s life. The gaps fracture her life and separate her from meaning and purpose. But they have other effects – changes to her career, training as a therapist – and now building something of beauty from those gaps, not papering over them. | |
| Blue skies | Depression darkens the skies over our lives. When a young mother to be is taken into hospital before the birth of her child, little attention is given to her mental health. Depresssion becomes a lockdoen for her, and it is years before she sees blue skies again, this time in the middle of another lockdown. | |
| The whirlwind of adolescent depression | Adolescence – a whirlwind of change, a time of chaotic experiences and response for many. Making sense of a single teenage life can be challenging, but through data science and a larger data set, Niamh seeks to understand the nature of the developmental, social or environmental factors that affect the teenage experience. That way, she may be able to help map a safer course through the storms for them. | |
| Understanding ageing | Matthew knows that his research into dementia and ageing is unlikely to be able to offer changes to treatment and prediction that will directly benefit the many elderly people that take part in his research programme. They know it too – and still they work, like him, towards improving the health of future generations. |
|
| Help me help you | Carys has always seen patterns – in numbers, in Lego bricks, everywhere. Her work as an epidemiologist and data scientist looks for patterns in numbers, statistics, the data that describes our population. In a pandemic, whether of COVID or depression, the more complete that data set is, then the more accurate she can see the patterns in the data. There is so much data out there, but it may not have been collected expresslly for this purpose, but it could really help. Your data could really help. Would you share it to help her see those patterns more clearly? | |
| 24,039 | In his professional life, Anders seeks to bring forth meaning from data – data contributed by over 24,000 generous volunteers in his study. In his personal life, he sows, nurtures and grows vegetables on his allotment. The true worth of those vegetables is in sharing them with others as part of a delicious and nourishing meal – just as the true worth of the work of the data contributed to his study lies in the information and meaning that he can make from them and give back to the community to inform and educate. |
|
| Understanding, diagnosing, recognising | The unique and individual nature of depression may require a unique and individual therapeutic intervention. Too often one size does not fit all – responses to drugs may vary, requiring repeated cycles to identify the correct approach. What if research into a holistic approach to the patients’ profiles could offer a basis for predicting the optimal therapeutic approach? | |
| A person, not a problem | Rachel felt written off as a child because of her Dyspraxia, but she took up that challenge got a degree and a masters’ and then a job and a home of her own. But then she faced another challenge to overcome – a lack of understanding and adjustments at work. Working with a new and supportive team of colleagues and managers, she has risen above that challenge as well. | |
| Do you see me? | Nneka’s life is complex, as ours all are. She is committed, determined and capable. She knows who she is, and what she is going through, as she stands in the x-ray room, delivering care to us and our loved ones – but do we really see her, her challenges and her achievements behind the weighty lead apron of professionalism? | |
| Do you love working in the NHS? | Just because you cannot see what someone is going through doesn’t mean it isn’t there. Just because you cannot see a disability doesn’t mean it’s not there. Invisible disabilities challenge people, they challenge the preconceptions of others, and they are a challenge for managers, systems and cultures. This story also challenges. It challenges everyone to consider what part they have to play in another person’s experience, to think about how negative behaviours can affect the success of teams, and to acknowledge that ignorance is not an excuse but, instead, an opportunity to learn about each other, adapt accordingly – and make the NHS a better place in which to work! |
|
| A story of death and birth | Throughout the years, mountains have formed a backdrop to the narrative of Kate’s life. That narrative has paused several times – on the death of her father, on the death of her husband, and in the stillness of the Coronavirus lockdown. But her narrative has also resumed from those pauses – with a pregnancy and the birth of a son, with the realisation that the universe is neither malevolent or benevolent, and with musing, against the backdrop of the Colorado mountains, about how the story will continue… | covid-19 coronavirus loss death birth mountains |
| Bucket list | Cancer regularly throws potholes, barriers and hairpin bends into Emma’s road through life – a road she has chosen to punctuate with ticking things off her bucket list. And then? And then Covid comes out of the verge and throws an even bigger roadblock in her way – a pandemic. That was definitely not on her bucket list. | covid-19 coronavirus cancer |
| Storm Covid | A woman caught in a global storm no one foresaw. A woman with a career, a life and a small child. A woman determined to reach safe harbour on the other side of the storm. | covid-19 coronavirus |
| A spring in my step | Jo grew up in a generation of women fortunate to bebeginning to be able to make choices for their own bodies – about birth and conception. After her mother dies in a care home without a living will or a DNR in place, Jo determines that, in the face of the 2020 Covid-19 pandemic, she will once more take control – this time over her death. | DNR LPA living will covid-19 coronavirus mother |
| Lockdown | Even in a country where people trust in the system, the long hard slog through the marsh of lockdown takes a toll on physical and emotional energy, leaving citizens debilitated and isolated. Partners and friends provide physical support, comfort and nourishment that helps us meet the physical challenges of life – how and who will we be supported by through the emotional and psychological exhaustion of the Covid-19 lockdown? | covid-19 coronavirus |
| Two-letter person | Claudia is a a doctor. A consultant. And she is also a person who has to shield from the novel Coronavirus, because of pre-existing conditions and treatments. Not only does she have to change and adapt her working style and processes, learning new technologies and approaches to the care she is committed to giving, but her husband is also a clinician, one who must also keep working for his patients. So they must shield from each other, giving up human contact and intimacy in order to survive. | covid-19 coronavirus cancer doctor consultant lockdown husband wife shielding relationship |
| Hearing voices isn’t all bad | Wenda has heard voices for twenty years. Initially, medication worked well and she didn’t hear too many voices for around 17 years. In the last four years the voices have increased dramatically, and she has been using DBT, Tai Chi and Kung Fu to manage them. But those voices can also bring something else – they can be supportive, positive and guiding, and they reaffirm her faith. Her psychologist says that he does not see any signs of EUPD, and that she has an unspecified psychosis. | |
| Finding meaning after psychosis | Jason loves travel, music, dancing and initially disregards two episodes as the ‘Brazil thing’ or the Czech ‘thing’. He didn’t talk about it – the global conspiracy, the robbery, the arrest, the paranoia. Maybe it was just the travelling? Unfortunately it wasn’t, but fortunately he received great care after being sectioned on a 136 order – care that enabled him to become a lived experience advisor, a life coach, and to help increase understanding and awareness. | |
| My name is Stephen | Stephen hears voices. How does that make you feel? Scared? Nervous? Do you remember something you read in a newspaper? It wasn’t always like this for Stephen. He was an army reserve, a landscape gardener, a runner. Then someone spiked his drink, and the voices began, Alcohol didn’t help, but music did. It helps him express all those feelings and experiences of voice hearing that are so difficult to tell people. His name is Stephen. Will you listen to his voice? | |
| Am I dangerous? | For Nikki, Schizophrenia takes away so many things – friends, childhood, music, fashion. In their place it brings voices, stigma, misunderstanding, loneliness and a desire to make it all stop. But then she is introduced to the Voice Collective. Her experiences are validated by those of others and she bcomes less alone, more empowered and able to make a difference. | |
| My Granny’s pictures | When Christakis and his brother were children, their parents were killed a car crash. Their grandmother took care of them, telling her own stories through her art and sharing pencils and paper with others so they might do the same. When she develops dementia and begins to hear voices, Christakis realises that now is the time for him to share paper and pencil with her so that she too may create art that tells her story before it is lost. | |
| And miles to go… | As a child, one doctor’s academic approach is unusual, unpredictable, perhaps even misunderstood. She works, she struggles, she studies, she succeeds. She shifts the meaning of a diagnosis of Dyslexia from being a learning disability to a learning difficulty. She learns to see and understand the ability within her and then when she sees one of her own students in difficulty, she can recognise the ability in him. | |
| How can I explain? | How can a press photographer remain detached from the suffering around them in a refugee area? How can a doctor volunteering to help refugees understand the refusal of photographers to help? How can that doctor triage and select the few of the many that they can best help? Then she realises that the press have a role in this just as she does. When she is asked why she does humanitarian work, how is she to explain? What is she to say? |
|
| First and foremost, human | One junior doctor faces several massive life changes at the same time. Malaysia to the North-East of England. Medical student to Junior Doctor. Studying to her first on-call. As a perfectionist she tries, day after day, to complete everything on her growing list until, one day, she can’t. Her registrar gives her permission to be human, to leave her shift, to go home, to take time to recover, recharge and return, two months later, as a better, healthier doctor. | |
| The hands we’re dealt | After five years in Orthopaedics in the UK, a change of geography gives Rob a different understanding of the spectrum of ordinary peoples’ experiences of physical injury when he travels to Tanzania to teach. | |
| Uncertainty | Uncertainty and fluidity are something Paul has become used to. Teaching medical students in Tanzania, it’s the unpredictability of the curriculum and teaching needs that demand his intellectual and professional agility. Returning home to work in the UK, he realises that, in his clinical practice, the uncertainty, unpredictability and fluidity of his patients also demand an agile professional response. | |
| Exactly who I needed | A successful, engaged relationship between doctor and patient is just as important for the doctor as for the patient. After seven shifts in a row, a junior doctor finally gets the patient he needs and, despite him having to wear many masks during their brief interaction, she gets just the doctor she needs. | |
| Falling asleep | At the end of a junior doctor’s busy week on call, she clerks in an elderly patient in the Emergency Assessment Unit. Examinations are done, bloods taken and oxygen adjusted. The family go off for lunch – in good spirits under the circumstances. But later the conversation on the ward turns to questions about DNACPR, as the patient grows tired and increasingly breathless. | |
| Collecting stories | As one young doctor navigates the many stories of the constant stream of patients she treats, she realises that her own story is a work in progress, being shaped by all of their experiences as much as by hers. | |
| Just ask | Rotas, patients, consultations, paperwork, rashes – and the pressure. The pressure of training to be a doctor, the pressure of a first on-call weekend comes to a head and one young doctor learns that there is peer support out there, and that staff at all levels are prepared to support and help her. She just has to ask. | |
| Words | In the middle of his training, a young doctor hears the words he speaks to patient and carers spoken to him by another doctor, from far away, in another country where his father is ill. | |
| The best…and the worst | Since she developed Ulcerative Colitis, every day of Lily’s life has been different. Hospital visits, cannulas, needles, infusions, medication, weight loss, exhaustion replace time with friends, trips and even making her own way to school. But friends try to understand, schools try to be supportive, and she develops traits she never really knew she had – determination and perseverance that stand her in good stead until another different day. The one when her doctor says the word “remission”. | |
| In control? | After she was diagnosed with Type 1 Diabetes at 16 months old, the condition took over Demi’s life – her food, her schooling, her social life, her holidays, her independence. But now she’s taking control back… | |
| Hard to deal with | This is Austin’s story. | |
| Up to your neck | This is Karen’s story. | |
| Remission? | This is Csilla’s story. | |
| A busman’s life | This is Carla’s story. | |
| The duality of scars | Growing up in a Jewish community, Talia was expected to conform. The path she would follow was clear: a good education, marriage and children. When she began questioning her sexuality and her faith in God, this path disappeared; disapproval, ostracism and bullying appeared in its place. Years of despair and destructive behaviour eventually gave way to acceptance and the discovery of a new path, embracing both her faith and her sexuality. | |
| Listen | It was hard for his counsellor to believe that Khakan was really a gay Muslim man. Her response was indicative of the lack of support available, so Khakan decided to set up a support network for people identifying as gay and Muslim. Finding A Voice was just the beginning of Khakan’s quest to live out the values of his parents, celebrating the fact that we are all human and everyone deserves love and respect, regardless of their sexuality or their religion. | |
| Seeing the whole picture | As a committed Christian, it was hard for Jayne to accept that she was gay. She decided it would be easier to change her sexuality than to change her religion and others supported this path. Years of loneliness and anguish followed until she discovered that in the eyes of a loving God she could, in fact, be both gay and Christian. | |
| 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. | |
| Diagnosis | 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? | |
| 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. | |
| 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. | |
| Betrayed | Amanda is a commited, 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’. | |
| Choice | 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. | |
| Hurting each other | This is Lindsay’s story. | |
| Tracks | 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. | |
| Discharged | 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. | |
| 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. | |
| 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. | |
| 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. | |
| Why? | 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. | |
| 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. | |
| Winifred’s journey | In the 70th anniversary year of both Windrush and the NHS, June speaks of the echoes of her mother’s journey in her own. | |
| Life…imagined | 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. | |
| Unashamedly me | When life turns inwards, the walls close in, it gets darker and your menu of life options is reduced to a choice of one, what is the way out and back to moving forward? #Twitterdisco and the support of others help Ruth through the complexity of the being a socially and clinically committed GP – and other challenges – to become able to finally be “Unashamedly me”. | |
| Dance with the music | Music is a thread that runs through our lives. Sometimes it sleeps, unheard, while the noise of life drowns it out. Then, when we need it, it comes back through unexpected places like #TwitterDisco to lift us when we most need to dance with it. | |
| The mood for dancing | When you spend your working life holding space for others, sometimes you just want to go home and curl up in your own space, and leave the world outside. Even on those nights, John finds that the virtual space of #TwitterDisco can provide a real place of comfort, support – and fun! | |
| Starfish | In a digital storytelling workshop, there can be so many, many stories for facilitators to nurture, to respond to and, if need be, to fix. So, how to hold them all? Maybe we don’t need to – maybe one story is enough. | |
| Finding my voice | The life of a GP is becoming ever more complex, demands ever more time and ever more knowledge. Meeting those challenges needs the confidence to be heard – a confidence that may not come to all of us easily and a voice that we may only find through surprising routes. | |
| The spaces between | This is a reflective piece about the experience of facilitating a Patient Voices digital storytelling workshop. Do we help storytellers inhabit, bridge, explore or avoid the spaces between? Where do we sit in that storyscape? Where should we sit in that storyscape? | |
| Man in the street | Mike’s journey from man in the street to man on #TwitterDisco began with his cancer diagnosis and moved forwards and upwards as he explored the patient experience, patient involvement, patient engagement and, finally, the mutually supportive and safe #socialmedia space of #TwitterDisco. | |
| The boy who raised hope | How do we acknowledge a full and creative life? How do we come to terms with loss? How do we honour a life lost? Zoë does this with honesty, dignity, and a plea that healthcare staff are empowered so that they can provide the best care for patients and families. |
|
| Edges | Angela’s story explores the value of supportive real and virtual communities. | |
| 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. | |
| Fractured | 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. | |
| 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. | |
| How much more? | This is Susan’s story. | |
| Autumn leaves | This is Grete’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. | |
| Høstlige blader | This is the Norwegian version of Grete’s story. | |
| Masks | This is Cat’s story. | |
| Academic writing | This is Grethe’s story. | |
| And on the fifth day… | Emily is called to an acutely unwell patient and finds herself in a position of leadership for the first time as an FY1 doctor. She looks to the ward team for support and advice, together they work to stabilise the patient. Emily reflects on her passion for team working and experiences that have helped her to develop her team-working skills. Emily’s story focuses on the transition period from pre- to post-qualifying and the importance of collaborative working. | CAIPE inter professional centre for interprofessional education teamwork Leadership Communication Support Clinical care |
| The rhythm | Susanne’s story illustrates the rhythm of learning and working together. In order to survive and thrive you need to engage with this rhythm. Care for your team members and together you can achieve so much! When the tune changes, listen to it, be open-minded and try to learn from it. | CAIPE inter professional centre for interprofessional education |
| From discord to harmony | Richard’s digital story explores the parallels of learning and experience within two stories. The first focuses on a challenging interprofessional teaching experience involving social work and medical students. The second focuses on Richard’s experience of singing in a choir. The skills and power of keeping quiet and listening emerge from each and their importance is emphasized. | CAIPE inter professional centre for interprofessional education |
| Collective wisdom | Liz reflects on the start of her journey to become a champion for interprofessional education (IPE). She describes how she was able to observe a medical, nursing and social work student bringing different perspectives to help address the needs of an older patient with comorbidities. The moment shines a light on learning “with from and about each other”. Liz shared these early appreciations with the UK Centre for the Advancement of Interprofessional Education (CAIPE) who supported her early work and with whom she still works as a CAIPE Fellow. | CAIPE inter professional centre for interprofessional education |
| Me and the ocean | In her story Laura traces the challenging swim she is having in the ocean, the ocean of recovery with Schizophrenia, and the strong currents of an interprofessional education (IPE) initiative in mental health recovery for healthcare students at King’s College London to which it has given rise. | CAIPE inter professional centre for interprofessional education |
| Crying is not enough | This personal and professional story links Elizabeth’s roles as carer and interprofessional teacher in her struggle to find help for her dying husband. She describes the challenges of introducing an interprofessional education (IPE) programme with its failures and successes; her discovery of the UK Centre for the Advancement Interprofessional Education (CAIPE) and their guiding principles of IPE enabled her to produce a successful programme. Learning from the experience, Elizabeth went on to research and publish work on IPE before giving back to CAIPE by becoming CAIPE chair. | CAIPE inter professional centre for interprofessional education Interprofessional learning programmes, Teaching /facilitating IPE . Leadership. Curriculum planning. Resilience . Team work. Principles of Interprofessional education |
| Taking time | Chris’ story broaches the issue of stress and burnout in the workplace. The example highlighted here is brought from experience of working in general practice in the United Kingdom. The story includes reflections from delivering clinical interprofessional (IPE) teaching and how principles can be applied to improving teamwork in the primary care workforce. The story also references mindfulness-based approaches to improving wellbeing. | CAIPE inter professional centre for interprofessional education |
| Offering | The story is about Charles and Sue’s work to support an interprofessional team to learn and teach others about the hitherto unfamiliar concept of palliative care and the practical aspects of its delivery in a low-resource African country (Tanzania). Charles’ story illustrates the underlying values of interprofessional education i.e. the underlying philosophy of IPE rather than the implementation of the IPE framework. Charles was able to use his knowledge of the principles of interprofessional education to cross cultural and geographical boundaries by respecting individuality, difference and diversity of the Tanzanian community. | CAIPE inter professional centre for interprofessional education |
| New shoes | A story of transitional change, an insight into personal growth and professional development. As a medical scientist, Amira has the knowledge and understanding of many clinical professionals; having worked in other industries, she also has knowledge and understanding of professions that are not directly related to health and social care. Her story raises questions and challenges about the importance of learning to work with, from and about people from all walks of life in order to promote interprofessional learning beyond the boundaries of social care. | CAIPE inter professional centre for interprofessional education |
| 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. | OCD Obsessive Compulsive Disorder mental health equality diversity physiotherapist NHS England |
| 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. | Carer disability wheelchair NHS England equality diversity |
| 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. | NHS England consultant psychiatrist doctor equality diversity prejudice values India Christian family BAME |
| Assumptions | 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. | NHS England equality diversity prejudice assumptions BAME |
| 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. | NHS England equality diversity disability wheelchair Arthrogryposis barriers BAME |
| 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.. | Autism Aspergers Syndrome learning disability adviser NHS England equality diversity |
| Medicine with a smile | Natalia is a doctor, a doctor who questions the nature of medicine: is it art or science? When her husband is diagnosed with cancer, she ponders the nature of care and caring, living and loving, body and soul… and then she brings her own experiences to bear on the care of her patients. | |
| The 15-year challenge | Timeyin was only three years old when she had her first stroke. Monthly blood transfusions followed in an attempt to minimise damage to her liver and other organs. A severe crisis 11 years later resulted in a serious chest infection and admission to intensive care, where the care was less than caring. Since then, Timeyin has cared really well for herself and is proud to be a stroke survivor and a strong, independent young woman living well with Sickle Cell Anaemia. | sickle cell anaemia anemia teenager |
| My life with Sickle Cell | 14 year-old Malachi is a keen dancer. He also has Sickle Cell Anaemia. His first crisis began with excruciating pain in his stomach at 3.45 one morning when he was only six. His first blood transfusion quickly followed. Regular transfusions, drinking plenty of water and staying warm enable him to manage the condition and mean that he can still keep up with his friends and enjoy dancing. | sickle cell anaemia anemia teenager |
| A Crescent Moon | When Caroline was 13, she found herself in excruciating pain and ended up in hospital with her first Sickle Cell crisis. Unfortunately, the risk of a crisis means that she will not be able to join her friends undertaking the Duke of Edinburgh award. So she has found other activities that are a bit less challenging, and is determined to meet – and overcome the challenge of Sickle Cell Anaemia. | sickle cell anaemia anemia teenager |
| Princess | Joyce is one of the lucky ones with Sickle Cell Anaemia – when she goes to A&E, she is treated like a princess and goes to the head of the queue. Since her first Sickle Cell crisis when she was five, Joyce has, for the most part, managed her pain at home. Some years later, what seemed like a ‘regular crisis’ became so bad that hospital was the only option. Surgery, dehydration and extreme pain have given way to hope and optimism and Joyce is becoming stronger every day. | sickle cell anaemia anemia teenager |
| Saturday soup | Sickle Cell Anaemia makes it hard for young people like Temitayo to run and play sports because they get tired easily. But his mother takes good care of him, feeding him nourishing food and making sure he stays warm. So, although he is still affected by joint pain, he has fewer transfusions and fewer hospital stays and he’s able to enjoy YouTube and playing games virtually and online. | sickle cell anaemia anemia teenager |
| How God works miracles | Although Omari has Sickle Cell Anaemia, he’s never let it keep him away from his passion: basketball. Even a silent stroke, a painful crisis and monthly transfusions haven’t dampened his enthusiasm for the sport. Faith, determination and great care from his mum led him to win a basketball scholarship and the future looks bright. | sickle cell anaemia anemia teenager |
| Precious’ life full of praises | Precious had her first Sickle Cell crisis when she was two. At one point, the pain was so bad that she asked her parents to buy her a new arm and leg…. And even high doses of morphine did little to relieve the pain during her worst crisis. Stress is one of the things that can trigger a crisis so Precious has worked closely with her college to negotiate manageable schedules. Hopefully her dream of becoming a paediatrician and helping other children with Sickle Cell Anaemia will come true. | sickle cell anaemia anemia teenager |
| A way to change | Having Sickle Cell Anaemia is not great. But Joshua has met the challenge head on, persuading others that he is capable of doing many of the things that other young people without a blood condition can do. Despite experiencing the extreme pain of a Sickle Cell crisis, Joshua leads a mostly-normal life and looks forward to a cure for this agonising disease. | sickle cell anaemia anemia teenager |
| Twins but different | Bemigho and her twin sister, Timeyin, are different in lots of ways, not least because Timeyin has Sickle Cell Anaemia. Bemigho tries to protect her sister in lots of ways, including not talking about her condition to their friends. But, as they grow older, she realises that maybe one way of protecting her sister is by telling others about the disease, so that they can understand it better. | sickle cell anaemia anemia sibling |
| My sister with a challenge | Emiko’s older sister has Sickle Cell Anaemia. Emiko describes how worried he feels when she has a crisis, how he hates to see her in pain, and to know that she is having a blood transfusion and how hard it can be to concentrate on school work when she is in hospital. But the bond between them remains unbroken and he has learned that facing difficulties can also result in beauty. | sickle cell anaemia anemia sibling |
| Fear | Even at the age of 10, Jesse has learned how to solve problems and cope with difficulties: being alone, having to postpone holidays, watching his sister in pain, fearful of what might happen to her. Jesse’s sister, Joyce, has Sickle Cell Disease, so Jesse has to be positive and try not to worry, and remain determined not to let fear win. | sickle cell anaemia anemia sibling |
| What I see… | 11 year old Joshua has learned a lot about Sickle Cell Anaemia: his brother Tayo, who has the disease, has to take medication, drink lots of water and get up in the night to use the toilet, which disturbs Joshua’s sleep and can make it hard for him to concentrate at school – it’s also hard to concentrate when Tayo is having a crisis or in hospital. Although he doesn’t always know what to do, he can help by comforting Tayo when he’s in pain and by staying positive about doing things together as a family. | sickle cell anaemia anemia sibling |
| How? | Grace is 8 and her 12 year-old cousin, Omari, has Sickle Cell Anaemia. Although they are close, and she has been to hospital with him, she doesn’t know much about the the disease and imagines that others also don’t. She encourages anyone and everyone to ask questions and find out more so that they will understand the condition and know how to help. | sickle cell anaemia anemia sibling cousin |
| Not alone | Caroline knew nothing about Sickle Cell Anaemia when her new baby daughter was diagnosed with the condition. When she had her first crisis, aged two, she learned too much about pain and about the helplessness and frustration of being able to do nothing to alleviate Precious’ suffering. Caroline’s ceaseless research, together with her experience of caring for her daughter have given her the knowledge – and the confidence to ask for the support they need. | sickle cell anaemia anemia parent |
| My joy, my strength | Emily’s life fell apart when she learned that one of her tiny twin daughters had Sickle Cell Anaemia. Her fears of how she would manage to care for her were compounded by fear of judgement from others in her community and despair at the lack of understanding and support from health professionals. Now, having found support and fought for improvements in the care of her daughter, Emily is able to stand back and see her daughter as a strong, responsible, courageous young woman. | sickle cell anaemia anemia parent |
| It’s okay to be tired | Cheryl knows she is a good mother to her three children, but she is tired – weary from many losses, a diagnosis of lupus, two children with Sickle Cell Anaemia and, now, the menopause. Honesty and love have helped Cheryl and her children cope with the unpredictably of Sickle Cell and of life and appreciate what they have. | sickle cell anaemia anemia parent |
| Men! Stop running away! | When Rita’s baby daughter, Caroline, was born with Sickle Cell disease, her husband stepped out for a breath of fresh air…. And never came back. The disease is considered by some to be a curse and it’s true that Rita’s life has not been easy, caring for Caroline as well as her other children. But she has watched Caroline overcome the pain and grow into a bright, vibrant, confident young woman – someone of whom her father could be very proud. | sickle cell anaemia anemia parent |
| A Precious life… | Ade’s ponders how to answer his daughter’s plea for a new arm and leg to replace her existing painful ones; how to respond when she is in hospital, along with her brother, in excruciating pain. Ade’s daughter has Sickle Cell Anaemia. In search of a better life outside London, the family faces uncertain care and Ade has had to fight for knowledge, research, empathy and care, but he knows it is worth it for the life of his precious daughter and for all those affected by Sickle Cell disease. | sickle cell anaemia anemia parent |
| Let me be great! | Benny’s son, Joshua, is a blessing: a much wanted child – and a challenge: he has Sickle Cell Anaemia. Benny faces the challenge of restricting his activities in the hope of preventing crises and saving his life, but Joshua is bright and determined and has his own ideas about what he wants to do. Together they find ways that enable Joshua to soar, just like the Origami birds he loves to make… | sickle cell anaemia anemia parent |
| Stargazing | This is Wayne’s story. | |
| Senti-mental health | This is Stephen’s story. | |
| Birthday present | This is Shaw’s story. | |
| Parity of esteem | This is Lynda’s story. | |
| Night terrors | James has been ill and in hospital but finally, after several attempts, gets to go home. The house is checked, fire alarms are fitted, and he’s given new medication. For a while, social workers check up on him – and then that stops. Then, a couple of months later, the night terrors start. James tries to do the right thing, checks for side effects and puts it down to his medication. But, with no catch-up visits from doctors or social workers, he struggles on, trying to cope on his own. It would have been so much easier with pro-active support. | |
| Life – what is life? | This is Gaynor’s story. | |
| How to save a life | This is Gary’s story. | |
| My greatest privilege | Told at school that she will achieve nothing, Emma’s path through life comes to a turning point when she realises she wants to become a mental health nurse. Her new path is not easy, but it is rewarding. | |
| In the club? | This is Yvonne’s story. | |
| Blooming | This is Lizz’s story. | |
| Two things | This is a mother’s story. | |
| &*%” happens! | Kim’s research into academic dropout caused by nursing students’ fears around death is interrupted by her own diagnosis of Grade 3 bowel cancer. Her journey through surgery, chemotherapy and radiotherapy leaves her with a stoma and a bag. Returning to work, but then faces the challe nge of one student telling here that a stoma bag is “the most disgusting thing in the world” and the delight at being better able to support a student whose own mother has been diagnosed with bowel cancer. She learns that, when she’s brave enough to share her story, deep connections are made that help her support others, and that death, for her, is not something to be frightened of. |
|
| What’s just happened? | This is Debra’s story. | |
| Fragments | This is Angela’s story. | |
| Good enough | This is Victoria’s story. | |
| Into the light | This is Julia’s story. | |
| Tears of…? | This is Sheena’s story. | |
| 743 | This is Sue’s story. | |
| They helped me… | Rachel is healthy, happy and active, until she has surgery to alleviate excessive monthly bleeding. There are complications, pain, more surgery, more complications, helplessness, humiliation and loss of confidence, of livelihood, of identity…. The Complex Pain Team offer knowledge, understanding, tools and techniques to help Rachel manage the pain, the incontinence and her expectations, allowing her to find her way back to herself and some of the things that give her joy. | |
| A mother’s story | Jilly’s daughter, Emily, has everything going for her: she’s kind, clever and multi-talented. When she becomes ill with a range of unusual, complex, painful symptoms, life changes for the whole family, from care-free and fun-loving to worry and fear. Four years later, the Complex Pain Team at UCLH offers hope and understanding, tools and strategies, not just for Emily but for her whole family, enabling them all to live with her conditions and look ahead to the future. | |
| An invisible illness | One mother’s daughter has everything going for her: she’s kind, clever and multi-talented. When she becomes ill with a range of unusual, complex, painful symptoms, life changes for the whole family, from care-free and fun-loving to worry and fear. Four years later, the Complex Pain Team at UCLH offers hope and understanding, tools and strategies, not just for her daughter but for her whole family, enabling them all to live with her conditions and look ahead to the future. | |
| Enough | In her private life, Jackie loves to sing and dance but it’s not always easy to know the right words or the correct steps in her professional life. How much is too much? How little is not enough? How can she truly be herself and also represent her colleagues, her gender, her race in order to ensure the best care for her patients? | |
| Rate and rhythm | ‘Helping people’ is not the reason you are supposed to give for wanting to become a doctor. As an anaesthetist, Vicky gradually learns that there may be better ways to help people than saving their lives. But the management of complex pain requires a very different skill set from that of putting people to sleep….Once l earned, however, these ‘soft’ skills are a firm foundation for clinical practice. | |
| Biology and being | Anna has always loved both art and biology, so when it came to choosing a career, she sought a way to bring the two together. Clinical psychology seemed to offer the possibility of aligning feelings, emotions and humanity with medicine… It’s been a long struggle but the Complex Pain Team has provided the right conditions to treat patients as people with hearts and minds as well as bodies. | |
| I am a nurse. I am a patient. | As a child, Angie wanted to a nurse – someone who could flounce around talking to people. As a nurse, working with patients suffering from severe, debilitating pain, the reality is a bit different. When she becomes a patient, she gains valuable insights into what it’s like for some of her patients…. And recognises the value of listening. | |
| Do superheroes exist? | As a psychologist, Katie sometimes feels ineffectual when working with patients suffering from severe, complex pain; in fact, it often feels as though she needs super powers to make a difference. A chance glimpse of a colleague exercising her own superpower of dancing helps Katie realise that perhaps everyone has a superpower, if they can just figure out what it is. | |
| How does your garden grow? | Growing up in Zambia, Natasha had plenty of opportunities to experiment with growing and making things. So when faced with the challenge of working with patients with complex pain, she had the courage and confidence to find and mix the right ingredients – people, skills, protocols and funding – to result in a successful approach to treating patients with long-term, complex pain. | |
| Time to give | Coming from Columbia, Isis works as a Health Care Assistant before training to be a nurse, working with the Complex Pain Team at UCLH. Describing several experiences with patients, she illuminates her compassionate, kind approach to caring. | |
| One, two, three | Death can leave those left behind, however competent, feeling overwhelmed, unable to cope. Extreme pain can leave doctors, even those who specialise in the relief of pain, feeling useless. Brigitta reflects on the work of her multi-disciplinary team and their attempts to relieve the suffering of their patients. | |
| Sunshine | The list of things to which Seema is allergic has grown and grown since she was a tiny baby first diagnosed with a milk allergy. She is no stranger to anaphylactic shock but it has taken its toll on her confidence and self-esteem. A caring doctor, gentle nurses, wet wraps, regular injections, playing the piano and regular visits to warmer climes have helped her to cope with her condition. | eczema severe allergies chronic condition anaphylactic shock terrific teens resilience family allergy climate parent child teenager |
| Held at cheesepoint | Kyle’s allergies are so severe that exposure to milk, peanuts, nuts or eggs could kill him. Bullying and name-calling can also cause serious damage but Kyle has learned to deal with both his medical and his social challenges, coming to recognise his own strengths. | eczema asthma vernal conjunctivitis chronic condition severe allergies bullying terrific teens resilience allergy school parent child teenager |
| Elisha’s battle | Elisha was always different from her friends – but was it her eczema or her quietness that led her classmates to bully her? Gradually she realises that her eczema and her quietness are both important parts of who she is. | eczema severe allergies chronic conditions bullying depression self-harm counselling identity terrific teens allergy parent child teenager |
| Tiger balm | Sarah had learned to manage the range of allergies from which she has suffered since early childhood, but a severe allergic reaction in her teens was the beginning of a year during which she lost her confidence – and sense of identity. A hospital admission and a doctor who listened were the start of the road back to health and herself. | asthma eczema hay fever allergies allergic reaction identity pain terrific teens counselling allergy parent child teenager |
| Small | Josh suffers from a number of allergies, as well as ADHD and hypermobile joints. Itchy, painful skin and bullying at school make life difficult, and having to give up Tai Kwan Do for fear of breaking something leaves Josh with few outlets. When he is also diagnosed with Eosinophilic Gastrointestinal Disease, life becomes really tough. Gradually, he’s learned to keep his physical symptoms under control – mostly – and he’s learned to cope emotionally by trying not to care…. | asthma eczema itching bullying adhd depression hypermobility naso-gastric tube terrific teens eosinophilic gastrointestinal disease egid pain allergy parent child teenager |
| Eczema girl | When Priya is bullied at school because of her severe eczema she eventually retaliates … it takes time for her to learn to cope with her severe allergies in more constructive ways. Along the way, she has help from a special doctor who manages to control her flare-ups and gives Priya the knowledge and confidence to understand what works for her. | asthma eczema hayfever allergies chronic conditions infection hospital wet wraps bullying depression anger coping confidence allergy parent child teenager |
| Letting go | Letting go of their children is one of the hardest things most parents have to do. Sonya’s daughter, Seema, has suffered from severe allergies since she was born and Sonya has tried to protect her from the wide range of things that could make her ill – or even kill her. When Seema goes into Anaphylactic shock, it is difficult for both mother and daughter to overcome the fear and the worry…. But, in time, Sonya realises that Seema has to make her own decisions. | anaphylaxis epipen eczema asthma allergies chronic condition parent anxieties terrific teens letting go independence allergy parent child teenager |
| Invisibility | Steve’s son, Kyle, suffers from a range of severe allergies, which often make it difficult for him to attend school and participate in ‘normal’ childhood activities. Steve contemplates the lack of understanding and support, until they meet a doctor who understands… but what will happen when Kyle reaches 18 and is no longer under the care of a physician who knows him and understands his condition? | anaphylaxis epipen eczema asthma allergies disability wellbeing education parent terrific teens children’s services allergy parent child teenager |
| We’ll be fine! | Elisha’s short life has been plagued by itching, scratching, breathlessness, creams and a wide range of treatments. Marilyn’s baby daughter, born at only 25 weeks, has suffered from severe allergies all her life. Caring for her daughter and other family members has resulted in the loss of Marilyn’s identity but perhaps, with the right care and treatment, Marilyn can find herself again. | allergies eczema asthma carer caring premature identity terrific teens allergy parent child teenager |
| Finding the right person | Mary has suffered a number of losses and has had cancer. Sarah’s birth is the beginning of another set of challenges, with repeated infections and criticisms of Mary’s parenting. When Sara’s eczema worsens, Mary doubts whether she is the right person to care for her daughter – but is anyone? But then Dr Super Problem Solver comes along and everything changes. | loss cancer allergies terrific teens doubt uncertainty allergy parent child teenager |
| Our normal | Jacqueline reflects on her son’s wide variety of chronic-but-invisible conditions – rare and strange for many but normal for Jacqueline and her family. She makes a plea to health professionals to listen to what is normal and what is not and to see Josh as a person and not just a collection of conditions. | asthma eczema allergies chronic conditions eosinophilic esophagitis terrific teens allergy parent child teenager |
| The everlasting gift | As a medical student, the first dissection can be a difficult rite of passage but it can also be an opportunity to see ‘just a body’ as a precious gift of humanity. | |
| My Dragon | Living with eczema can be uncomfortable, debilitating, even embarrassing. Beth skilfully describes the discomfort, the shame and the daily battle against her ‘dragon skin’. | |
| One Wednesday afternoon | How do we make decisions about how we spend our lives? In Nielsen’s case, despite his dad’s urging to study medicine, it is law that attracts him, until…. he comes face to face with his dad’s mortality, and the skill of the surgeon who may be able to save his life. | |
| Metamorphosis | This is Versil’s story | |
| The good the bad and the ugly | This is Sue’s story | |
| A funny thing happened on the way to the asylum | This is Roy’s story | |
| Broken heart, new start… | This is Philip’s story | |
| From the woods to chemical bloods | This is Paul’s story | |
| Imagine… | This is Derrick’s story | |
| Staying afloat | Staying afloat is Caitlin’s second story | |
| C- must try harder | This is Sharon’s story | |
| Her birth plan | This is Rachel’s story | |
| Death | This is Emily’s story | |
| Antony | This is Elizabeth’s second story | |
| Pieces | 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. | |
| The Junior Doctor | ||
| The DNA of Care | The DNA of Care project brought five groups of NHS staff together to share, reflect upon and distill their experiences into a set of Patient Voices reflective digital stories. These stories will be used to evaluate, enhance and explore understandings of past and present NHS staff experience, and to plan, prepare and deliver better future staff experience. | |
| Impermanence | 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. | |
| Kirsty’s tale | 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. | |
| 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? | |
| 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. | |
| 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. | |
| 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? | |
| 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? | |
| Toil | 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? | |
| Stay | 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. | |
| 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… | |
| 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? | |
| Dis-integration | 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? | |
| 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! | difference ingrown hair depression devastation community nurse humanity conversation compassion value |
| 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. | infection control nurse prevention isolation education teamwork education values care |
| 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. | |
| 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. | cost benefit analysis reflection business management physiotherapist brain damage family support |
| 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. | critical care nurse reflection death resuscitation husband unsuccessful gratitude emotion appreciation celebration |
| 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. | measurement counting testing targets quantity quality training audiology career transformation change solutions |
| Tears | 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. | depression anxiety mental health breakdown stress healthcare assistant hospital NVQ Associated Practitioner professional personal support |
| 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? | |
| Touch | 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. | |
| 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. | |
| 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. | pain limits vulnerability identity pulmonary embolism hospital morphine resilience |
| Stickers | 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! | paediatrics children families fun cancer consultant |
| Fixer | 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. | nurse sister urology hospital appointments system change improvement complaint challenge compassion |
| 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. | out-of-hours safety interprofessional collaboration challenge |
| Growing… | 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. | birth midwife birth attendant maternity support worker confidence education collaboration team work |
| 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. | stroke helplessness elderly rehabilitation young person victim survivor resilience |
| 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 matters to patients, but rather the small acts of kindness and compassion that take just a little more time… | cancer tracheostomy emergency compassion nurse kindness family |
| 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. | health visitor families children challenge supervision support compassion creativity health visitor child protection vulnerability supervision compassion partnership creativity |
| 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. | midwife childbirth pain vulnerability support encouragement home birth community |
| 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. | change challenge nurse improvement diversity isolation inspiration School-for-Health-and-Care-Radicals collaboration |
| Between a rock and a hard place | ||
| Ann’s recovery | ||
| Every morning I’m happy! | ||
| Opportunities | ||
| Wedding dress | ||
| Let me make this clear… | ||
| I’m making a difference | ||
| Coming out | Depression mental health resilience alcohol survival | |
| The madness in my head | This is Rizwan’s story | |
| Mistakes do pay! | This is Perry’s story | |
| I’m sad, mad, bad…and now a good lad | ||
| This too shall pass | This is Heidi’s story | |
| Maybe I can too! | This is Caitlin’s story | |
| The formation of information | This is Amgad’s story | |
| Forever young | ||
| All hope is gone | ||
| A chaplain’s tale | ||
| Don’t wait | ||
| After the end | ||
| Last mountain | ||
| My Dad | ||
| No time to talk | ||
| Everyone’s someone’s family | ||
| Fancy dress, of course! | ||
| Just a care worker? | ||
| The crack down on pull up pants | ||
| Not coming home | ||
| Legal care at end of life | ||
| Unsung hero | Lloyd’s teachers never expected him to read or write. But he was lucky to have parents who looked out for him. With their support, he went on to collect three GCSEs as well as certificates in gardening and health and safety. Lloyd is unstoppable now, and loves his job as a Health Access Champion, delivering training to health and social care professionals and supporting other people with learning disabilities. And he’s hoping to pay his mum back one day… | |
| This I know | This is Sue’s story, created at a Patient Voices workshop at Roffey Park in June 2015. | |
| More than 90 minutes… | This is Nigel’s story, created at a Patient Voices workshop at Roffey Park in June 2015. | |
| Freedom | This is Michael’s story, created at a Patient Voices workshop at Roffey Park in June 2015. | |
| Where is Daddy’s pool at work? | This is Jo’s story, created at a Patient Voices workshop at Roffey Park in June 2015. | |
| Finding me | This is Janice’s story, created at a Patient Voices workshop at Roffey Park in June 2015. | |
| That call, and that office | This is Laura’s story, created at a Patient Voices workshop at Roffey Park in June 2015. | |
| Barnaby’s great achievements | This is Barnaby’s story, created at a Patient Voices workshop at Roffey Park in June 2015. | |
| Six am | This is Tony’s story, created at a Patient Voices workshop at Roffey Park in June 2015. | |
| 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? | |
| A love story: for Ken | When Elizabeth’s husband Ken is diagnosed with bone cancer they plan one last dream – the end 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. |
Bone cancer end of life care husband wife love virtual ward community nurse pain relief |
| We aim to give a bit back | ||
| Listen to me – I’m a champion! | ||
| Mens’ health – it’s no laughing matter | ||
| Helping people | ||
| LEEP forward | ||
| Don’t tell me what I can’t do… Watch what I can do! | ||
| From cloudy thinking to clear thought | This is Chris’ second story. | |
| Not that man | This is Helen’s story. | |
| Take a deep breath | This is Chris’ first story. | |
| A picture of health | This is David’s story. | |
| Stripped of dignity | While it’s exhausting to care for someone with dementia, that doesn’t take away the motivation to do more for our loved ones…. And someone needs to listen. | |
| I’m still me | ||
| Complex lives | Zakyeya plays many roles in her complex life. Being a doctor doesn’t diminish the demands of the other roles at work and at home. Finding a way to integrate all the roles has been the first step in improving the health and wellbeing of the entire family. | |
| I do the best I can | Tom loves his wife Pat – he always has and he always will. They’ve always worked as a team. Now that Tom is affected by dementia, it’s more important than ever to work together… | dementia carer Lancashire council alzheimers memory |
| Learning to navigate | Pat talks about how the roles in her relationship with her husband have changed after his diagnosis and as his condition changes – and how she has had to learn new skills along the way. | dementia carer Lancashire council alzheimers memory |
| Tower of strength | Barry had always been the tower of strength in the relationship. The shock of a diagnosis of dementia is not helped by the denial of family and friends and now Linda must learn to find her own strength. | dementia carer Lancashire council alzheimers memory |
| The expert guide | Making decisions was always something Barry was good at. With the diagnosis of dementia, there is a whole host of decisions to be made and Barry must learn new approaches and new ways of negotiating. How could service providers help make the decision-making process easier? |
dementia carer Lancashire council alzheimers memory |
| 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 Health and Care Radicals 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. | |
| No shrinking violet | John is an incredibly fit, competitivecyclist. He has developed skills of self-preservation and determination that come into play in life-saving ways, when he feels that a diagnosis of IBS in masking symptoms of camcer. Eventually his persistenceand ownership of his own health pays off – and a colonoscopy reveals a large, but operable tumour. But he’s not able to lower his guard, even at that point, as no appointment letter turns up. With the assistance of his PALs service, his own assertiveness and stamina, his operation is scheduled, successful, and allows him to return to the cycling he loves. | John goodrum bicycle cyclic cyclist milk race cancer bowel barium ray x consultant tumour |
| The book of Stephan | Susan’s loving, intelligent partner develops early onset Alzheimer’s at 58. The whole family comes together to care for him, and to learn how he likes to be cared for. They develop and document their experiences and expertise in the ‘Book of Stephan’ and, when Stephan needs to go into residential care, they pass on their learning to those who will be caring for him. But, time and time again, their expertise is ignored and Stephan’s future looks bleak. Then they find a care home where everyone, from Consultant to Cleaner, is prepared to read the book of Stephan… | Susan scarsbrook Stephan family love care careless book Alzheimer dementia security guard greenvale care costs |
| A debt repaid | People travel the world for many reasons – to work, to grow. A poor trader in Ghana, Sam’s mother supported his studies so that he could become a successful man in the UK. He always wanted to repay her kindness and, while he did send money to support her, he could never get home to pay her back in other ways. When she dies, he decides to change careers, become a carer, and repay her by caring for elderly people in the UK. | Sam koomson banker carer Ghana mother school trader success care dementia vocation change repay honour memory |
| I remember… | Always a carer, Roy has grown in stature and experience over the years, but remembers so many experiences. Amongst the things he remembers are all teh people with dementia, families and care staff he has worked with over the years. One special set of memories is of the stories of a Polish couple who survived the camps, staying together until Jan developed dementia and became one of the people who have changed Roy’s life, and made him who he is today. | Roy Bhojraz dementia polish camps apple cake growth learning relationships care |
| Everybody has a story | When a client comes in with dementia and hardly any life story left, it’s up to the staff of Greenvale to help her to rebuild that story, and to recapture the woman they can see beyond the dementia. | Ronia lamptey elderly dementia life story care general hospital eyes |
| My second family | Priscilla comes from a family where careers in the caring professions are common – a family where the old care for the young and, in turn, the young care for the old. She chooses to work with older people, and is able to bring together her experiences of caring for her grandmother and her clents. Now she has two families. | Priscilla lamptey care grandmother nurse granddaughter child |
| My mother, my patient | It’s a long way from the Philipines to the UK, but a journey many care staff make. They come with many motivations, but central to them is the desire to care.
Nelia comes to the UK to provide care for the elderly, and to provide a better life for her family in the Philipinnes. That journey brings her commitment, devotion and skills to her elderly clients in the UK, but when her mother develops dementia back in the Phillipines, her experiences of caring in the UK also feed back into her awareness of her mother’s health back home. |
Nelia aban mother phillipines nurse journey care mental health dementia vocative devotion family support immigrant vascular schitzophrenia |
| Long road home | People travel a long way in the journeys through life. They may physically move away from home, culture and family. They may, in crisis, be cut off from their memories, their past, their identities. All of these things are challenges that staff who support anfd work with the elderly or people with dementia face every day. Attending to the patient, and their physical needs is often paralleled with attending to their whole being, their culture, their story. | Mary brophy irish immigrant elderly lady care hime dementia colostomy husband life culture story family |
| Back from the bottle | Alcohol and homelessness entwine around Satpal’s life, dragging him onto a downward spiral where a night in a police cell is actually a welcome chance to get warm, clean up and eat a decent meal.
Unfortunately it also leads to longer periods in jail, until he manages to get onto a ladder out of damaging behaviours provided by NHS Manchester Mental Health and Social Care Trust. |
Manchester mental health social care nhs trust anson park house satpal singh alcohol drink homeless homelessness street violence jail police cell family wife |
| Tears of joy | From a happy childhood, Gary moved into a period in his life dominated by the tragedies and traumatic events associated with psychosis and schizophrenia. Only now, after many years of support and hard, painful work, has he come to a place where he can be grateful to the universe again. |
|
| Depression | Tom’s life was one of creativity, activity and music. The, in his 30s, the tragedies of the outside world began to seep further into him, aand he began to withdraw from it in an attempt at self-protection.
His depression took away so many parts of his life, basic things he had to learn again with the help and support of services. But now, he’s back in the world again, back with dreams for the future once more. |
|
| Stains | This is Terry’s story | |
| Happy again | Kathy’s childhood happiness is shattered by an incident of abuse by someone outside her family, and her journey takes a different path through a difficult marriage, bullying, divorce, depression and overdose. In and out of hospital, she is eventually sectioned, but fortunate to have good legal representation, a loving family and effective mental health service support. Her journey has taken a different turn now, with an apartment of her own which she has made home, and reached a place where she is, at last, happy again. | Kathy Williams abuse divorce overdose stigma pain section bullying care independence depression happy mental health services insecurity |
| So what’s the alternative, then? | After a lifetime scarred and damaged by mental health issues, repeated section orders, and situations where he had no control, no alternatives, the care in the community approach has put Malcolm back in control of his life. | Malcolm batey alternative social services care order bullying army cancer unemployment breakdown mental health section act three manic depression schitzoaffective cell police control |
| My journey to myself | The journey that many trans people embark upon is a long, challenging and arduous one. Along that journey lie social and cultural obstacles, procedural and legal hurdles, and personal and professional dragons. For one traveller, the road has been particulary rocky and painful – and recent progress is being threatened by resourcing and staffing cuts, and the physical and mental effects of that long and debilitating journey. | |
| Adagio | One piece of music has been the soundtrack to Sian’s life. Expressing herself through her violin, she was somehow never quite able to unpick the strands in the fuque – the self-harm, the drinking, the depression, the panic, the anxiety. After many years, an assault at work signals the start of a series of bitter losses and the beginnings of a therapeutic pathway that is orchestrated for her, not by her. Suddenly, a flashback to childhood trauma opens up memories and she picks up her violin once more, still searching for a recognised diagnosis and a clear therapeutic pathway. | sian child abuse sexual music violin music panic memory depression plath school teacher trauma flashback barbers adagio diagnosis rheumatoid arthritis loss overdose alcohol self harm medication label anxiety personality disorder borderline disassociation dissasociative fugue |
| My journey | Sarah’s life journey started off on the wrong track when she was sent to a special school, rather than being diagnosed with Dyslexia and given appropriate support. After years of not wanting to leave the house, self-harming and self-doubt, she was able to work with her Counsellor and Occupational Therapist to take those first crucial steps on a new journey. Leaving the house, and travelling on the bus opened up new horizons and successes. Sarah in now a service user representative and a peer mentor for others. She has travelled all over Staffordshire exploring bus services for an assessment of the suitability of public transport provision for service users, has her own flat and is making plans for future journeys – this time on trains. | sarah dyslexia special needs school breakdown suicide self harm agarophobia panic attack bus train OT occupational therapy therapist counsellor service user presentative mind transport |
| Hidden journey | Tom’s life, and physical and mental health have been shaped by several traumatic events and the care, or lack of it, that he has received. Now, after many years of hard work, he reflects on what how his life might have been different if he had received the sort of care that is available to him now. | tom manchester mental health rape male trauma ptsd post traumatic shock syndrome bombing attack nurse harrods epilepsy seizure blood pressure TIA PTSD |
| Happier than ever | Alcohol becomes a support for Marie through difficult times and relationships. But then it betrays her, leaving her with dependencies and mental health issues that persist until she gets proper, personalised, integrated care. | manchester marie alcohol overdose smithfield withenshaw laureate house liver ireland support manchester mental health |
| Trust | Any relationship, whether personal, professional or caring, must be based on trust if it is to be effective. Loris has journeyed from Italy to England, and yet is still searching for mutual belief and trust that can underpin an effective relationship with psychiatric and psychological services. | paranoid schizophrenic italy england loris microchip head trust loris manchester mental health |
| May you live in interesting times | Our lives have many components – our home, our job, our neighbours. All of them can affect our physical and mental health. If the many agencies, the police, local councils, care organisations, that are tasked with supporting us through life fail to act promptly and effectively when problems start, then the result can be traumatic, life-changing and, ultimately, most costly for everyone concerned. | noise neighbours home police council harassment james community unemployment complaints injunction redundancy vandalism james crisis team section loss manchester mental health |
| Recovering | Anne was not unfamiliar with challenges in her life, but when her son was diagnosed with schizophrenia and she became his carer, the inconsistency and lack of connectedness of support services took their toll on both them. However, better support, effective medication and more connected support services mean that now both she and her son are better able to move forward into the future. | mental health manchester son mother carer recovery scream silent schizophrenia hospital nurse depression inconsistent loneliness community team carers forum clozapine clinic consistency continuity anne |
| Journey to myself | Kausar’s journey through life has been a long and winding one, but one that has led to personal development. | |
| The wrong chair | This is Jane’s story. | |
| A change of name | Zubeda’s husband left her after their 18 month old daughter contracted malaria. Since then, she has looked after her five children on her own.
The convulsions continued even after treatment in hospital and, eventually, Zubeda consulted a traditional healer who advised changing her daughter’s name in the hope of deterring evil spirits. She is 12 now. As she has some understanding of what is going on around her, she would really benefit from attending a special school but the cost is prohibitive for Zubeda. |
malaria braindamage disability traditionalhealer poverty special education Tanzania |
| A hope for help | With 11 children, including two sets of twins, life was already challenging for Rehema. But when her young daughter began having convulsions, her life became even more difficult. Ten years on, the child still has fits, is doubly incontinent and is completely dependent on Rehema for every aspect of her care, leaving her with little time to work on her farm and barely enough money to survive. | malaria convulsions braindamage disability poverty special education Tanzania |
| Life is hard | Habiba’s 12 year old son cannot walk or talk. He is doubly incontinent. He has fits and moans a lot. He needs full-time care. There is no time for family activities, no time to work. There is no bed and so they cannot use mosquito nets.
How is Habiba to endure her almost unendurable situation? |
malaria convulsions braindamage disability poverty despair Tanzania |
| A chance for school | Having lost three children Fatuma is no stranger to tragedy.
When her 18-month-old daughter started having convulsions, neither a blood transfusion nor traditional herbs could present paralysis of one arm and one leg. Without physiotherapy, even ten years later, the girl is only able to move around on her knees. In order to care for her daughter and tend her farm, Fatuma has had to move far from her village – and there is certainly no money for a special school. |
malaria convulsions braindamage disability paralysis poverty special education Tanzania |
| Help me help myself | Amina carries the responsibility for her entire family on her shoulders. She sells fried fish to bring in a bit of money but life is a struggle, especially since her daughter is unable to help, having suffered brain damage as a result of contracting malaria as a child. | malaria disability braindamage poverty special education Tanzania |
| The future is a long walk | Ally finds it difficult to scrape a living for his eight children, especially since one of them is disabled and take most of Ally’s time.
This child had malaria as a baby. Despite spending a great deal of money on a variety of treatments over many years, he still has one hand that is useless. Ally dreams of his son attending a special school but it seems like an impossible dream. |
malaria brain damage traditional healer disability poverty education Tanzania |
| Engaging Carers Conference 2004 | This is a record of the discussions, contributions and passions that delegates contributed to the ‘Engaging Carers’ conference held on the 27th September 2004. ‘Unless we remember where our journey began, how can we measure the distance we have travelled?’ Michael J. Smalroch | |
| Bells and whistles | Young medical students, young patients. They are all human beings with feelings, fears and aspirations. That’s brought home to Mark one day by his reflection on one of the most universal of modern possessions. | |
| How are you? | How does a professional engage with a patient? One day, David learns that a few short words can be the catalyst for opening up a crucial dialogue with a patient. | |
| Prescriptive perspectives | The life of a medical student can feel frenetic, pressured, driven, a movie shifting from slow motion to fast forward in the blink of an eye. One day, Chidi’s own personal movie hits pause, and he learns something crucial. | |
| What can I say? | Flow charts, differential diagnosis – these are all essential skills for a medical student to learn and master. But what happens when the flow chart runs out? | |
| I’m sorry, I have to go | The education of medical students within practising hospitals is an essential part of their studies, but can sometimes leave the student with conflicting pressures and motivations. | |
| I know a girl… | Lizzie’s story is a powerful and affecting evocation of the experience of Anorexia, told with the awareness that a medical education brings. | |
| Family ties | As a young medical student, David has a professional interest and expertise in his grandfather’s developing Alzheimer’s. Then, one day, a personal experience brings home to him the delicate balance between personal and professional that all doctors must tread. | |
| The human race | A medical education can feel like a race to fill in your student logbook. Then, one day, in one moment of irreversible change, Chidi comes to understand that there is another, parallel, more personal race being run… | |
| The man in Bed 5 | Pressured with too many tasks and too few staff, Laura realises her jobs are stacking up. Trying to stay positive, she tries to introduce herself to her patients but there’s no time. Laura realises she only refers to her patients by their bed number and feels beaten and defeated. But that was three years ago and now Ward 14 is a different place –today Laura has time to greet her patients and nurse them the way she should. | |
| Such a lovely ward | Rebecca loved her job as a ward clerk from day one but gradually she began to realise that things were not as they seemed. Lack of systems, poor communication, broken equipment and staff members in despair were just some of the issues she noticed. But the arrival of a new manager meant everything began to fall back into place. Today systems work well and everyone is so much happier – now Rebecca cannot imagine doing anything else. | |
| Anger, despair, or time to care? | Even though the oncology ward she works on is now well managed and a happy place to work, Elaine feels continuing anger that things were allowed to deteriorate until the ward was placed in special measures. How the ward is now is how it should always have been, for both patients and staff. Today Elaine has time to care for patients and although the bad memories remain, she finds it a privilege to care for patients at the end of their life. | |
| A time for reflection | As a child, Bev was always described as a born leader. Meeting up with childhood friends after 24 years, Bev was saddened to discover they’d lost their mother to breast cancer, a disease from which her own mother has now been given the all clear. As an oncology nurse, Bev enjoys leading and making things happen as well as watching those around her become leaders. She wonders if whether sometimes she just needs to be a follower and give others around her a chance to lead instead. | |
| Love and life, work and family | Confident and outspoken when necessary, Amy enjoyed her role as a healthcare assistant and had a happy work and home life balance. But this changed as her ward became more disorganised and chaotic, leading to Amy having to provide a reduction in her level of care. The final straw was a patient passing away alone and unnoticed by staff. Amy was left feeling devastated and lost her confidence, her feelings of anger and despondency impacting on her home and work life. The arrival of a new manager led to a new start for the ward, and the improvements put in place helped Amy to once again enjoy both her job and her family. | |
| Can you hear what I say? | Marsha really appreciates being listened to. When Marsha goes into hospital to be treated for her heart condition, staff listen and she receives good treatment. When she goes into hospital for her mental health condition, however, it’s a different story. Marsha reflects on how much difference it makes when staff do take the time to listen – and hear what patients and service users are saying. | listen dignity respect unseen borderline personality disorder mental health Manchester heart physical marsha mcadam |
| Look back in anger | Despite caring for her son, who was born with diabetes, for 45 years, Lynn was not given information about him and was not able, in turn, to convey information that might have been helpful in determining the most appropriate care for him. Years of drug use led to schizophrenia and Hepatitis C which, combined with poor communication and lack of joined up care, had tragic results. | Diabetes drugs death son mother schizophrenia hepatitis C pneumonia homeless mental health physical depression rehab Manchester lynn goldrick |
| Me and my fight | On his journey through substance abuse, homelessness and schizophrenia, Iain has had plenty of opportunity to become familiar with the mental health system. Here he shares the some of the benefits of his experiences as a set of helpful hints and tips to staff as well as service users coming into the system. | homeless drugs mental health voices schizophrenia rehabilitation hope help support recovery iain kennedy |
| Listen! Believe! Act! | Faye doesn’t really remember jumping off the Kingsway Bridge. But she remembers the injuries resulting from her fall… and she remembers the frustration with health professionals who failed to listen to her and disbelieved her suicidal intentions and. Fortunately, Faye is happy to be alive and looks forward to a career as a psychologist! | mental health Manchester child adolescent CAMHS depression suicide attempt section father death listen borderline personality disorder psychiatric ward faye larkin |
| A lick and a promise | Stacey’s relationship with her nan is loving and caring, and forms the basis of her belief in how she should care for the patients on her ward. Staffing issues mean that she is reduced to giving them ‘a lick and a promise’ or grabbing a bag of crisps for lunch, rather than having the time to ensure the care they receive is what she wants to deliver. Only the placing of the ward on special measures and the arrival of a new manager provide a way back to being able to care as she feels she should. | |
| A rewarding ward | Working as an NHS ward clerk, Sarah finds her job stressful but rewarding. But it wasn’t always like this – staff shortages, constant moves between wards and lack of interest by management resulted in low morale and things often going wrong. The escape of a patient led to the ward being placed in special measures for eighteen months. This proved to be a turning point though with the appointment of a new manager who put in place additional support and staff, turning her hand to whatever needed doing. At last Sarah felt valued – she returned to her original ward and is pleased to be working on a rewarding ward again. | |
| Special measures | Caring for patients with cancer and those approaching the end of their lives requires a special kind of person. Kay always knew her team was special. But when her ward was put on special measures and the team told they were dysfunctional, the word took on a whole new meaning. | interprofessional inter professional oncology cancer ward special measures dysfunctional team |
| A kiss on the cheek | Kath loved her job as a healthcare assistant. She always had time to sit and chat with patients and was proud of the care they received on her ward and she felt appreciated by patients and staff. When changes at the hospital made it impossible to provide the kind of care her patients deserved, despite working 12 hour shifts, Kath didn’t give up. Eventually, a new manager took the time to get involved, thanked the staff, appreciated them. Kath loves her job once more and is proud to be part of the team. | Healthcare assistant inter professional interprofessional oncology cancer ward special measures poor performance resilience appreciation team |
| Sabrina | What motivates those who choose to take on the tasks that many of us would walk away from, those who become change agents in the most difficult of environments? For Bev, one key motivation is to help a system that helped her own family through tragic loss. | |
| Reach out – others need you | Gertrude is inspired by her mother, who always helped people in her community. Today Gertrude describes herself as having ‘helping syndrome’ and her work with BME communities has given her great satisfaction, knowing that she is making a difference to people’s lives. | Gertrude Wafula help support BME community HIV mental health behaviour |
| The art of listening | Shabana works in community development, helping refugees, asylum seekers and those who have been abused, raped and trafficked. It is a stressful and demanding job but one which she finds immensely satisfying as she can see the impact she has on people’s lives. | Shabana Baig community development refugees asylum seekers abuse rape trafficking support family mental health |
| Everyone’s mum | Seher works at a women’s mental health and well-being group. One elderly member of the group – Auntie – didn’t speak English and when she was admitted to hospital, Seher supported and visited her as often as she could. Seher finds it difficult to forget the lack of care and support Auntie received and how it could so easily have been her own mother in that situation. | Seher Ahmed mental health hospital communication interpreter support BME |
| Are we alone? | Rawaid describes his father’s decline into isolation and depression, following the death of Rawaid’s mother. He reflects on how we suffer for those that we love. | Rawaid Rehman depression family isolation love support |
| The light of my eyes | Pedram reads a letter to his daughter, telling her of his early life in Iran, his family’s move to the UK and their struggle to adapt to their new life. | Pedram Safari Iran father family struggle war culture depression |
| Butterfly | Before her arranged marriage, Nighat was a confident and feisty woman. After years of abuse, she left her husband, not realising she was exchanging her battle with her husband for one with her culture and community. Eventually she began to believe she really was a bad person and illness and depression followed. Attending her first Patient Voices workshop gave Nighat the courage to seek help and her confidence is finally beginning to return. | Nighat Mahmood marriage abuse culture community depression self-harm stroke psychotherapy |
| My guest house | Mel recalls her experiences of the Iran-Iraq war and how she watched the bombing aged three. Settled in the UK since the age of twelve, Mel reflects that her experiences have made her stronger and more resilient. She wonders what message she can pass on to her own three-year-old daughter and how she can help her to balance British and Iranian culture. | Mel Safari war Iran memories culture heritage childhood experience resilience |
| Ankara keynote | ||
| My little shadow | Erica’s first experience of birth was a frightening and traumatic one, which led to years of post-natal depression. Deciding to turn her negative experiences into something positive, Erica retrained as a midwife and now she strives daily to show sensitivity and compassion to those in her care. | Erica McCowen pregnancy birth trauma isolation midwife care respect compassion empathy empowerment depression anger |
| Life is a gift | Despite undergoing a procedure to avoid future pregnancies, Eva was shocked to find herself pregnant again with baby number six. Her doctor’s caring response and her faith in God enabled her to deal with her situation and she now has a healthy daughter. | Eva Abe pregnancy ultrasound screening maternity amniocentesis faith |
| Listen carefully | Jo enjoys talking and her work as a respiratory nurse enables her to do what she enjoys most – helping people. But when a patient with chronic cough and reflux broke down in her clinic and threatened to take his own life, Jo found it was her listening skills that really made the difference. | Jo Thompson nurse empathy compassion listening cough reflux asthma patient treatment support surgery |
| You can do it! | Even though the battle against her breathing problems seems like an uphill struggle at times, Jane is a fighter and survivor. She will make it! | Jane eaton cough bridge motorbike determination copd asthma |
| From teacher to guinea pig | Annette was always inquisitive and this led her to become a Biology teacher, helping students to perform experiments. Her persistent cough has meant she has tried many different solutions but now she has been referred to take part in a clinical trial and will be the subject of an experiment herself. | Annette persistent cough reflux GP surgery placebo clinical trial theobromine experiment teacher chocolate research |
| Asking the right questions | Elaine’s dad became wheelchair bound shortly after she was born. Determined always to be as independent as possible, he failed to mention increasing health problems. His eventual death led Elaine to regret not taking the time to listen and hear what was being left unsaid and has made her determined to always listen to her patients and their carers. | Elaine McNichol patient care wheelchair carer independence pressure sore diarrhorea hospital GP |
| It’s not the cough… | Over the years, Annette’s persistent cough has become more intrusive and she must avoid certain foods and even certain movements of her head to avoid triggering her cough. Determined not to let it get her down, Annette lives life to the full and new treatments to calm the reflex action offer hope for the future. | Annette whooping cough persistent communication anxiety treatment reflux |
| Normal | Lewis was diagnosed with autoimmune liver disease at the age of seven. Later tests revealed that both he and his father had hereditary Von Willebrand’s disease, but Lewis felt relieved that at least each knew what the other was going through. Today, Lewis is in remission and living a life that is normal – for now. | Autoimmune liver disease Von Willebrand medication biopsy remission blood tablets hospital |
| The sky is the limit | Diagnosed with liver disease as a baby, Reece was not expected to reach the age of ten without a transplant. A keen footballer, his illness forced him to take a break and left him feeling miserable and heartbroken. Today, Reece’s check-ups are less frequent and he is back playing football and he has vowed never to let liver disease get in his way. | Liver disease alpha1 anti trypsin deficiency cirrhosis transplant hospital allergy epipen |
| Thank you | Born with biliary atresia, Katie enjoyed primary school and wanted to become a teacher when she grew up, but bullying in high school damaged her self-esteem. Starting afresh at college, she became ill again and this led to her being given a transplant. Today, Katie views her transplant as a second chance and is determined once again to become a primary school teacher. | Biliary atresia liver kasai bullying friends pain transplant hospital school |
| Don’t take life for granted | Despite being diagnosed with biliary atresia at two weeks old, Graeme had enjoyed success at football and had trials for several clubs. When an injury forced him to give up football, he still felt lucky that he’d managed to keep his liver disease under control. At the age of 15 Graeme’s liver disease made him ill again and he realised the importance of never taking anything for granted. | biliary atresia kasai liver disease medication football oesophagus varicies endoscopy physiotherapy sport |
| Being me… | Elle felt that life was better once she left school, as she no longer had to try to fit in. But at the age of 16 she became seriously ill and was eventually diagnosed with liver disease. Now Elle refuses to let her liver disease rule her life ¬ nothing will stop her from being herself. | Liver disease medication intensive care pain hospital adult services |
| Everybody’s normal is different | A transplant at the age of two has enabled Caragh to appreciate the good things in her life. She knows that although some may see her as different, she is ‘normal’ – it’s just different to someone else’s normal. | Biliary atresia liver transplant scar happy |
| What happened in April | Billy was a normal teenager, but when his eyes turned yellow, it was the beginning of a process that would eventually lead to him receiving an auxiliary liver transplant. Although there are things he cannot do because of his condition, Billy hopes that one day his own liver will regenerate sufficiently to allow him to fulfil his hopes and dreams. | auxiliary liver transplant rejection surgery medication alcohol intensive care |
| Regrets, forgets and changes | Amy’s life crashed at the age of eight, when she was diagnosed with autoimmune liver disease. Struggling with bullying throughout her teenage years, Amy’s life was out of control and she began drinking, smoking and self-harming. Today, Amy is turning her life around with the support of her family and friends. | Autoimmune liver disease steroids hospital bullying self harm alcohol drugs jaundice support |
| Only connect | Working as a clinical psychologist, Susan enjoyed helping people to manage difficult issues. A move to palliative care seemed to be an opportunity to see patients as individuals rather than as a condition or diagnosis, but it also taught her the importance of connection and how difficult it is to simply be with another human being. | Susan Hennessey clinical psychologist psychology sexual health HIV palliative death dying talking uncomfortable helpless goodbye |
| Precious time | Observing the time spent by one elderly and vulnerable patient in Outpatients, Gail wonders why there cannot be more joined up thinking in the NHS and why the policies and budget codes are so restrictive that they hinder rather than help staff to give the best care. | Gail Nanan outpatients hospital vulnerable elderly CT scan transport policies budgets waiting |
| Paraphrasing | Diane believed that we should never judge or assume, but her dealings with the medical profession haven’t worked out that way. Investigations into persistent anaemia meant frequent contact with GPs and hospital doctors, but it was the indifference of a hospital registrar that made Diane feel she was being judged and assumptions made about her. | Diane Campbell assumptions anaemia haematologist HIV |
| Night shift | Working as a security guard at a hospital meant Darius didn’t normally have much contact with patients. But when a suicidal patient began slashing his own throat in A&E Darius stepped in to try to talk to him. Realising they came from the same country meant Darius could speak to him in his own language as he tried to reassure the patient. The hours Darius spent sitting with the patient left a lasting impression on him. | Darius Vaitkunas wound blood self harm psychological support hospital psychiatric security guard suicide |
| Shapes and sizes | Tricia struggled with English and maths at school, but it was not until her daughter was diagnosed with dyslexia that she suspected she too might also be dyslexic. It made her realise that communicating with patients in a standardised way, rather than in ways to suit the individual, might mean important clues could be missed about their condition. | Tricia Penfold physiotherapist reading dyslexia maths self esteem patients communication SEN support |
| People person? | Nick has always felt himself to be different and struggles to fit in. Despite not liking people, he finds his work as a physiotherapist fulfilling because working with patients one-to-one has helped him realise they are all different, just like him. | Nick Harland physiotherapist misfit struggle school remedial autistic university people different |
| Change | As a person in good health who has managed to avoid hospitals for 64 years, Nigel’s experience of A&E is not likely to encourage him to return in a hurry.
Insufficient and inconsistent pain relief, poor communication, unresponsive staff and long delays contributed to the unsatisfactory experience. Not wishing to make a formal complaint, Nigel reflects on what needs to change in order for staff to work more constructively – and compassionately – with patients. |
complaint bureaucracy A&E emergency broken ankle shoulder wait pain relief careless alone change Barts Health Both Sides Now nigel turner |
| Royal London Conundrum | When young Jack’s appendix bursts, the delay before he can be operated on is almost as excruciating as the pain in his abdomen. During the week of waiting, the food is awful, the boredom is dreadful and, to make matters worse, he feels de-humanised by the staff’s insistence on talking to his parents rather than to him. | Appendix burst wait delay surgery dehumanised young involvement food Barts Health Both Sides Now jack gross |
| Morning express | Going into hospital is rarely something to look forward to. For Sue’s mum, an independent and active woman in her 80s, it is the beginning of a decline that has left her unable to pursue any of her old hobbies and interests. Unappetising food, unresponsive staff and lack of attention to her physical, mental and emotional needs contribute to her decline. But care doesn’t have to be like that and, in another hospital, her treatment is careful and caring, restoring her humanity and supporting Sue, her daughter and carer. | frail elderly decline seizure independence careless weakness dependence loss carer Barts Health Both Sides Now sue anderson |
| Up the bum | Stomach pain after a holiday in France and a night out with friends is initially attributed to teenage overindulgence and alcohol poisoning. It is several days before George’s burst appendix is diagnosed, necessitating an unpleasant procedure to insert a tube to drain the poison from his abdomen. Delays in diagnosis, inadequate pain relief and all the indignities that accompany severe infection have left George with an abiding loathing of hospitals. | appendix ruptured dignity disgust morphine alcohol drain pain delay peritonitis A&E Barts Health Both Sides Now george mcfadyen |
| Dignity | It is bad enough to have to spend a night in hospital, even if a fractured ankle and shoulder mean that you are, effectively, immobilised. Matters are not improved when Nigel is placed in a mixed ward where one of the other beds is occupied by an elderly woman, confused as a result of her condition and unable to communicate with staff, resulting in a disturbed night for all. But the most upsetting thing of all is the loss of the woman’s dignity in a ward full of men. | dignity respect elderly Asian BME mixed ward communication interpreting Barts Health Both Sides Now nigel turner |
| Just another day | As an occupational therapist on an acute psychiatric ward, Pete knows that conversation, discussion and debate about current affairs can help patients to make connections – with each other and the outside world. His enthusiasm for this part of his job is sometimes mitigated by disappointment and frustration when other ‘priorities’ seem to get in the way of making these important connections with patients. | Occupational therapy OT mental health therapeutic milieu preparation enthusiasm disappointment frustration acute psychiatric ward mmhsct Manchester mental health social care trust peter pete walton |
| Today is not the day | Stuart is passionate about sport. It is like breathing to him. So when undiagnosed pain forces him to give up one sport after another, it is like a slow death. He tries everything. Finally, after ten years, a new doctor takes an interest, listens to what Stuart has to say. A diagnosis is quickly made and, gradually, with the help of medication, peer support and a clinical trial, Stuart has been able to resume the sports that make his life worth living. | Ankylosing spondylitis pain sport football triathlon clinical trial delay diagnosis rheumatologist complementary therapies both sides now stuart blake |
| To Hull and back | Reflecting on his career, Mike discovers that he has his father to thank – or to blame – for ending up, via a somewhat circuitous route, as a senior manager in mental health, meeting targets, counting beans and speculating on the cause of the problems in the NHS. | Senior manager mental health father NHS police career aspirations targets reflection mike Edmondson mmhsct Manchester mental health social care trust mike edmondson |
| The other side of the coin | When Jenny’s grandmother’s house catches fire, Jenny learns what it’s like to be on the receiving end of care, after being the one delivering care for over 20 years. One of the lessons is discovering what it feels like to wait for calls and conversations, and how important it is to do what you say you are going to do, no matter how busy you are. | Mental health elderly dementia visual impairment carer listening expectations communication integrated care discharge mmhsct Manchester mental health social care trust jenny blackshaw |
| I love my job! | Jackie loves her job as an assistant practitioner. She loves helping people recognise and deal with physical health problems and supporting them through life-style changes that can make a huge difference to their lives. But pressures on her time mean that she is often not able to spend her time in the most productive way or make the difference she knows she could make if she had the chance. | Mental health physical health assistant practitioner lifestyle healthy self-care well-being self-esteem job-satisfaction mmhsct Manchester mental health social care trust Jacqueline Jackie mykoo |
| Take a chance… | One of the best parts of an OT’s job is when a client doesn’t need you any more. But to get to that point often entails evaluating possible risk. When Antonia decides to take a chance on a client, she is more than amply repaid by his blossoming growth and recovery – and his ability to stand on his own two feet. | risk chance challenge dilemma mental health education gardening learning friendship recovery transformation OT occupational therapy job satisfaction mmhsct Manchester mental health social care trust Antonia sojka |
| Uplifting | Paul’s life has gone well until a period of unemployment triggers a series of events that lead to depression and breakdown. After a spell in hospital, Paul begins to rebuild his life with the support of staff in the rehabilitation centre. Learning new skills and balancing independence with responsibilities offers the chance Paul needs to move on and grow even stronger. | Mental health breakdown paranoia schizophrenia hallucinations section rehabilitation recovery independence freedom responsibility redemption Anson House mmhsct Manchester mental health social care trust paul anson |
| Painting the trees | What is it really like to care for someone with dementia – someone who was, once, your mother…. George is nearly at his wit’s end when an Admiral Nurse steps in and relieves the pressure, offering George and his wife the support they needed to care for Mam and, eventually, to find residential care for her. Although they couldn’t save Mam’s life, they saved George’s. | Mental health dementia Admiral nurse carer burden stress pressure support listening mmhsct Manchester mental health social care trust george jarratt |
| Two lives wasted | Caring for a child with a mental health disorder is exhausting, stressful and relentless. When Gaynor eventually acknowledges that she is a carer, she discovers that she is not alone – and she is still a person! But even the support and companionship she has from Manchester Carers’ Forum can’t make up for 27 wasted years. | Mental health Manchester Carers Forum bipolar mother son family hope prison independence support redemption recovery resilience listening community carer mmhsct Manchester mental health social care trust gaynor morgan |
| Just for today | Despite being in a loving relationship, the stress and anguish of caring for and watching many friends die from AIDS led Dave to befriend the likes of Jack, Johnny and Stella. With faith, determination and support, Dave managed to overcome his addiction and continues to care for the love of his life –and support others who care for those they love. | Mental health AIDs alcoholism addiction recovery therapy faith hope love support Manchester Carers Forum dementia mmhsct Manchester mental health social care trust david dave williams |
| The invisible woman | Undiagnosed mental health problems dogged Beryl’s life since she was a teenager and caused her to feel invisible. When she eventually received a diagnosis, she was able to make a fresh start and discover hidden talents that restored her faith in herself. Her cloak of invisibility returns when she reaches the age of 60 and extends to her partner when he is diagnosed with cancer and dementia. Despite many setbacks, and with the help of a supportive psychologist, Beryl sets off on her travels and discovers her own strength, resourcefulness and resilience. Now, nearly 80, she looks forward to a brighter future. | Mental health bipolar elderly travel cancer dementia carer invisible travel recovery self esteem older person services psychologist support resilience courage determination hope future mmhsct Manchester mental health social care trust beryl clark |
| Rites of passage | Like any mother, Lindsey expected her son to follow the normal ‘rites of passage’ – 18th and 21st birthdays, A levels, graduation, driving test and girlfriends. But Tom’s behaviour was becoming increasingly bizarre and eventually Lindsey arranged for Tom to be sectioned. Diagnosed with schizophrenia and with no insight into his condition, Tom remains in hospital and Lindsey has become a fighter for causes in his name, determined never to give up on him. | Manchester MMHSCT Lindsey Cree schizophrenia section son lost life dream future |
| Still standing | After thirty years of living with a mental health condition, Cathy has realised that her recovery isn’t about achieving a ‘perfect life’, but one that enables her to get through the difficult times and treasure the happy times. The Manchester Mental Health and Social Care Trust has supported Cathy in her recovery and becoming a tutor at Recovery Education has given her an insight into other people’s journeys, as well as her own. | Manchester MMHSCT Catherine cathy Skelton mental health recovery education grief self harm stigma medication resilience courage determination |
| Breakthrough | Overcoming obstacles at school was hard for Dee because her dyslexia wasn’t understood. But she has learnt that the key to achieving goals is mental, physical and spiritual preparation. Her determination to overcome the set backs she faced when growing up have helped her to become stronger and given her courage to achieve her goals and pass on her strength to others.
|
Manchester MMHSCT Dee O’Neill dyslexia obstacles struggle motivation determination education alcoholism marathon training mental health |
| Freedom | Learning to be a mum was hard for Brenda. Her cries for help went unnoticed and eventually led to a spiral into drug and alcohol addiction. The support of her own mother enabled her to avoid her children being taken into care, but it wasn’t until her daughter became pregnant that she broke the cycle of addiction and became ‘clean’. Now a loving and involved grandmother, Brenda has learned from her daughter how to be a mum. | Manchester MMHSCT Brenda Cullen pregnancy post natal depression social services heroin alcohol cocaine Valium mental health addiction counselling therapy grandchild mother mum recovery resilience determination |
| Descendants | Diana believes we are all the descendants of survivors and her inability to have children made her feel incomplete and not fully part of humanity. Having tried everything in her power to achieve her dream and with many failures along the way, she eventually got the family she had always wanted. | Diana Guzys infertility IVF children |
| Thanked but not beaten | Danny has faced many challenges during his life, including being made homeless aged 12. Now dealing with Parkinson’s disease, Danny is determined to see this as just another chapter in his life. | Danny Lumby Parkinson’s homeless community support |
| Where do I belong? | Elena questions her sense of sense and belonging, as she feels at home in both Italy and Australia. | Elena Wilson belonging self family roots friends |
| Let me hold that for a while | Arieta’s desire to have a child has at times consumed her, but moving to a small community has given her time to heal and made her realise that getting on with life doesn’t mean giving up her dreams. | Arieta Sidoti infertility grief loss isolation God community |
| A new phase in my life | Retirement brought a sense of loss to Orlando. A friend recommended he go along to the ‘Men’s Shed’ – a community woodworking project. His fears of rejection were soon allayed and his weekly visits have now become one of the highlights of his week. | Orlando Talamo retirement depression loss routine purpose stress community helping woodwork support |
| The wanderer | Mish has spent much of her life travelling and meeting different people. To her family are the people she has collected along the way, not bound by history or religion. | Mish Lindenfox wandering Jewish people community travel family home belonging |
| Follow your heart | A chance remark made Katie determined to return to the nursing job she loved. But it wasn’t until she was sent on a Montessori for dementia patients training course that she realised the direction she now wanted to take. Today she is really making a difference to people’s lives. | Katie Ramsdale nurse hospital dementia Montessori elderly patients |
| Power cut | Peter’s father has overcome many obstacles during his lifetime. Now, following a diagnosis of Alzheimer’s, he struggles to remain involved with his family and Peter wonders how it must feel to lose your sense of power. | Peter Miller father Alzheimer’s family loss sport power football deterioration |
| Friday’s news | Nicole looks back at the life she shared with her younger brother, before he was killed in a road accident at age 21. | Nicole Christian brother family children friends memories accident hospital nurse mourning community |
| Marbles | Norma reflects on the journey that her father has now embarked on following his diagnosis of Alzheimer’s in 2006. | Norma Decker Alzheimer’s struggle memory clinic family determination |
| Letting go isn’t easy | Sharon’s bond with her mother has always been very strong and she has been more like a best friend. Now watching her own daughter grow up, Sharon realises that her mum has grown old and soon she will need to find a new ‘best friend’. | Sharon Murphy mother love cherish old daughter sadness friend old |
| Seeing people for who they are | Many patients can feel invisible, or seem indistinguishable, Working in PALs means that Estelle has to see everyone for who they are and everyone’s needs as what they are, whether they are young or old, and whether they have a physical or learning disability or not. | princess alexandra hospital learning disability disabilities Harlow pals elderly iamge patient couple perception equality death discharge Estelle patterson communication |
| Because he’s my son | Sue is a lawyer. Her son, Matthew has learning disabilities. After 32 years, she still finds herself following ambulances – not because she is a lawyer, but because, as a mother she is only too aware of the poor care that has and still could, be received by her son. | princess alexandra hospital learning disability disabilities Harlow baby cot drip cry ambulance mother loving devoted sue communication |
| Letter to the CEO | As a service user with a learning disability, Matthew knows the hospital thoroughly. He sees it though different eyes that can lend a new perspective and valuable insight. The community has given him much support, and he would like to give something back to the community in return. | princess alexandra hospital learning disability disabilities Harlow job identity work ceo chief exec signs read accessible improvement matthew communication |
| Using stories: making the big picture personal | This video presentation was delivered by Pip Hardy to Alberta Health Services on the 26th November 2012. | Patient voices pip hardy alberta health care presentation November 2012 |
| The gift | When a man with learning disabilities donates his lungs to a man who will die without them, he passes on another, equally valuable gift that is, in turn, valued and appreciated. | princess alexandra hospital learning disability disabilities Harlow organ donation gift transplant lung lungs music piano pianist classical chris hawkins communication |
| Think purple! | The reliable, accurate and timely flow of information is nowhere more important than when dealing with service users with learning disabilities. The purple folders that Caroline looks after can help and protect both patients and staff, but the phone still keeps ringing… | princess alexandra hospital learning disability disabilities Harlow purple folder binder plan record information phone telephone protect process procedure caroline webb communication |
| The cleaner | The interactions between staff and patients can be richly-laden with misunderstanding, misapprehension and fear. When a terrified patient with learning disabilities reacts badly to a clinical situation he doesn’t understand, Carol has to use all her experience, empathy and skills to bring about a positive resolution to a difficult experience for all concerned. | princess alexandra hospital learning disability disabilities Harlow fear understanding misunderstanding information procedure biopsy nurse scrubs green cleaner theatre theatre calm carol austin image identity communication |
| Sink or swim? | Working in PPI, Kerry is aware of the difficulties and barriers to diagnosis and care faced by those with learning disabilities. Her own experiences of diagnosis and care for her Multiple Sclerosis bring this home to her. If the process is so hard for her – young, intelligent and working within the system – what is it like for those of her clients who have a learning disability? | princess alexandra hospital learning disability disabilities Harlow ms multiple sclerosis diagnosis internet self information gp general practitioner consultant google search mum mother kerry riches communication |
| Why can’t we get this right? | As a learning disability nurse, Andy is dedicated to ensuring that patients’ experiences are as good as possible. But sometimes, even the most carefully-crafted protocols fail to ensure things go right for his clients. How do we get this right for patients? How do we get this right for staff? | princess alexandra hospital learning disability disabilities Harlow plan protocol procedure fail image anguish identity professional quality improvement andy dixon communication |
| One chance | There are some processes when care professionals get just one chance at doing it right. End of life is one of these. After the shock of hearing how poorly her profession can deal with end of life in some cases, one professional’s faith is restored by both her own personal experiences of the death of a loved one, and by seeing how caring professionalism can ease the loss of a child for a couple with learning disabilities. | princess alexandra hospital learning disability disabilities Harlow death funeral diversity elderly parents sisters toys service andea brewis humanity communication |
| Never give up | Football means everything to Stuart and has seen him through all the bad times. Diagnosed with autoimmune liver disease, ulcerative colitis and sclerosing cholangitis, his condition has pushed him forward to enable him to achieve both sporting and academic success. | CLDF childrens liver disease foundation CLDF Stuart autoimmune liver disease ulcerative colitis sclerosing cholangitis football gastric operations school success parents |
| If I knew then, what I know now | Born with biliary atresia, Matt gives some advice to his past self, including how to deal with peer pressure and the need to take care of his liver by avoiding alcohol and salt. Matt’s message to his past self? That life gets better!! | CLDF childrens liver disease foundation CLDF Matt biliary atresia advice peer pressure alcohol liver memories family friends acceptance |
| I am me | Diagnosed with biliary atresia at the age of 10 weeks, Khai reflects on the fact that medication is a constant feature of his life, as are broken bones. Able to give support and reassurance to the parents of a baby newly diagnosed with the same condition, Khai can say that this is me – healthy and happy. | CLDF childrens liver disease foundation CLDF Khai biliary atresia Kasai medication broken bones reassurance healthy happy scars |
| Walking in my shoes | What is it like to be normal? People always make assumptions – about what can or cannot be done. But Joanna always tries to challenge those assumptions. Although she knows she wouldn’t be the same person without liver disease, her struggles have made her stronger and today she has learnt to like the person she is. | CLDF childrens liver disease foundation CLDF Joanna haemocromatosis assumptions normal medicine liver disease |
| Dealing with change | Flo has always loved the sea because it’s forever changing, one day calm, the next a deadly swirl of waves. She compares it to her own constant change: liver disease. Born healthy, everything changed at the age of 11 when she was diagnosed with autoimmune hepatitis, a serious and chronic liver condition. Today, with the support of the Children’s Liver Disease Foundation, Flo has learnt to live with change and the uncertainty it brings. | CLDF childrens liver disease foundation CLDF Flo sclerosing cholangitis autoimmune hepatitis overweight treatment nurses school sports treatment |
| Take 2 | Sometimes life puts rocks in our path. Ben’s life was sweet until the age of seven when he became seriously ill with autoimmune liver disease, sclerosing cholangitis and ulcerative colitis. Medication helped him to improve but eventually he deteriorated to the point where he needed a transplant. The support of his family helped him to get through this time and today he is on track to achieve his goals and is looking forward to the future. | CLDF childrens liver disease foundation CLDF Ben autoimmune liver disease sclerosing cholangitis ulcerative colitis transplant pain family jaundice survivor |
| Look beyond the scar | Abi was born with biliary atresia. Her first operation took place when she was seven weeks old. Dancing became her escape from hospitals and illness, but when she was ten she was diagnosed with hepatic pulmonary syndrome and the only cure was a liver transplant. Today, Abi has learned to be proud of her scars – they are what makes her ‘her’. | CLDF childrens liver disease foundation CLDF Abi biliary atresia scars transplant operations liver hepatic pulmonary syndrome gall bladder |
| Just around the corner | Moving from the quiet lanes of East Anglia to the bustle of London means leaving her beloved cottage garden behind, but it does open up to Pat a whole range of COPD services and support that is localised and tailored to her needs. | COPD chronic obstructive pulmonary disease rehab rehabilitation homerton ACERS Norfolk London services access scooter electric cottage garden patricia alexander |
| The eleventh hour | A chronic illness like COPD is a life-changing condition. Delayed diagnosis means Mary has to come to terms with all the changes that it will mean to her career, her finances and her lifestyle. But through the pulmonary rehab programme she learns to manage and improve her condition, and through her own determination, enthusiasm and contacts she begins to build a new, different and rewarding life. | COPD chronic obstructive pulmonary disease rehab rehabilitation homerton ACERS retirement disability finances journey exhaustion new life exercises abdominal brathing lung function mary durkin |
| Coming out | Despite being nearly 80, Anne loves exercise and gardening, walking her dog and photography. She has never smoked. Some things affect her breathing – fresh paint, or the smoke from a neighbours barbeque.
An asthma attack as a result of an allergic response brings tests and investigations – tests that reveal Anne may have cancer. After surgery it is 18 months before she can get back out exercising again but, while the surgery is effective, it not until she gets involved with ACERS and pulmonary rehab in a community setting that she learns how to manage her medication and condition most effectively. |
COPD chronic obstructive pulmonary disease rehab rehabilitation homerton ACERS agnes anne Hamblin asthma cancer exercise gardening photography son surgery tests scans |
| Making a difference | Healthcare wasn’t going to be Laura’s career path, but a gap year in Africa changed all that. She became a physiotherapist, but not quite the sort of physiotherapist that people expect… | COPD chronic obstructive pulmonary disease rehab rehabilitation homerton ACERS laura graham physiotherapy physio gap year hackney |
| Small impact, big difference | Matthew has brought new multi-disciplinary approaches to COPD care and support for his patients. What took him away from the drama of A and E to devote his career to people invisible, silent symptoms? | COPD chronic obstructive pulmonary disease rehab rehabilitation homerton ACERS matthew hodson army ande a&e manager |
| Doing time | The killing of her husband changes Tracey’s life into an unrecognisable nightmare of alcohol, medication and emotional agony. In desperate need of support, she prays for a miracle or to be sectioned. When, after serving two and a half years for manslaughter, her husband’s killer returns to live in the same area, the only support service that seems to understand her needs is Support after Murder and Manslaughter (http://www.samm.org.uk) | MMHSCT mental health social care trust Manchester carer support tracey neenan death partner loss grief manslaughter trial husband samm |
| Loneliness | For Nighat, the days can be long, silent and filled with nothing but loneliness. Every day is just another test of her determination to survive, another challenge to her dignity and self-respect as she engages with more and more services that try, but seem to fail her. | MMHSCT mental health social care trust Manchester carer support nighat mahmood isolation loneliness empty day silence survival |
| Skip rat junkie | For many years, Justin’s life was a cycle of alcohol abuse, homelessness, and life on the streets. He lived on the streets, eating from bins, and struggling to find a way to get back from a life full of blanks. Eventually, being sectioned put him into the start of a process through which he has struggled and grown until he is now using his experience of life on the streets to help others. | MMHSCT mental health social care trust Manchester carer support Justin sharman alcohol homeless streets bins recovery section sectioned services helping others |
| Labour of love | The struggle to obtain and provide the right, compassionate and loving care for his parents is, like so many other struggles for dignity and respect, and exhausting and debilitating one for Henri. But it is a struggle he pursues with love and devotion, and describes lyrically and poetically. | MMHSCT mental health social care trust Manchester carer support henri rahman struggle exhaustion hopeless love loving kindness |
| Eight days a week | Dawn is both a mental health service user, a carer for a mental health service user and a mother. Her experience is one of isolation and lack of recognition for the complex nature of the caring she delivers and the care she needs. Her response has been to use social networking to build a community of experience and practice at:http://www. facebook.com/MakingMentalHealthPositive | MMHSCT dawn perry mental health social care trust Manchester mother daughter child carer isolation lack support caring fight back facebook social media |
| Folie á deux | Chris’ wife and daughter were mental health service users. When they commit suicide on the same day, Chris’ tragedy is compounded by the responses of the Police and the support services, but now he is at last finding ways to move forward. | MMHSCT mental health social care trust Manchester carer support chris rothwell folie deux wife daughter suicide arrest marilyn monroe paranoia sectioned overdose communication police assessment unit psychiatric |
| My song… | As someone who has needed and benefited from support himself, Alan is well-placed to see his partner’s need for support – so why is it not available from other services for her when she needs it? | MMHSCT mental health social care trust Manchester carer support alan Maguire support partner despair grief |
| Being invisible | Invisible. That is how Sue felt her friend Billy had been in hospital. And how she felt she became when, after Billy’s death, she tried to complain about his care. Did the complaints system treat her as invisible because she was just a friend, but not a relative? Was it because they hoped she and her complaint would just go away? She wanted Billy’s story to be heard but, in the end, she had to go to the Ombudsman before she felt acknowledged and received an apology from the Trust. | Sue archer death hospital ischaemia ischaemic complaint billy kain friend ignored lost letters determination trust |
| Coming here …being here | Do we journey to travel, to escape or to arrive?
This story was created in 2012, as an exercise to see what can be done with just an iPhone 3gs. So, all the photos were taken on the iPhone, the video was recorded on the iPhone, and the audio was recorded using the internal microphone. Splice was used to assemble the story. However, it is a life story and, I think, pertinent to the International Day of Sharing Life Stories. |
iphone splice daughter drugs rape journey loss grandchild joy change digital story stories storytelling |
| The hospital that didn’t listen | When Francis attempts to provide feedback on a potential safety issue to a hospital, he meets a system that cannot, or will not, respond until he has raised a formal complaint. His experience of other organisations is that they are more responsive to feedback., and he questions whether this lack of response is an indicator of an inability to manage complaints effectively. | Health foundation mid staffs patients association complaint resolution action response formal fire safety francis biard |
| Part of the world again | Is the denial of someone’s identity the ultimate removal of dignity and respect? Bob’s alienation, pain and experiences are put aside by professionals for forty years before his mental health issues are finally acknowledged with a diagnosis. Only then, with good support from his Mental Health Trust and restored faith and faith in himself, can he become part of the world again. | Mental health service user respect dignity MMU Manchester metropolitan university social care trust borderline personality disorder depression faith antidepressant antipsychotic diagnosis schitzophrenia church healing alienation trans transexual bob little |
| I don’t want it to happen to anyone else | After a long struggle with alcohol problems, Paul has to have emergency surgery for a perforated bowel. The perforated bowel doesn’t kill him – in fact he feels the episode helps him address his alcohol issues – but it leaves him with a stoma. A year later, when he wants to move on, get fit again, get back to work, he chooses to have the stoma reversed. The surgery and aftercare don’t go well for Paul, leaving him contorted in pain and wanting more pain relief than was provided. Unfortunately it also leaves him with a parastomal hernia that will need further surgery to repair, and a series of questions about the standard of his care. After failing to get the sort of answers or reassurance he wants through the complaints system, he opts to go to a different hospital to have the hernia fixed. | health foundation patients association paul james mid staffs stafford staffordshire stoma laparoptomy drug alcohol counsellor perforated bowel operation pain relief hernia diverticulitis complaint handling patient choice |
| Pip Culture Shock talk | ||
| Panic button… | Michael has been labelled and put into many different boxes over the years because of his sexuality and HIV status. He cares for his parents for many years, but the system needs to show its respect for his efforts by matching them with its own. Where is that support and respect in the last weeks of his mother’s life? | Mental health service user respect dignity MMU Manchester metropolitan university social care trust boxes labels parents mother care gay hiv sexuality carer support prejudice carer arthritis anxiety attack depression support fall record-keeping oedema michael snaith |
| From cabbage to king | Suddenly, one day, Graham is in a different mental place. His head feels different, the world is a different and challenging place – and recovery seems a distant goal. But Graham is a fighter at heart, determined to get through this battle – and to share his experiences so that others can get through the struggle as well. | Mental health service user respect dignity MMU Manchester metropolitan university social care trust peer support friends determination struggle graham stierl |
| The child within my Bipolar | When a beloved son asks whether your bipolar is his fault, how do you answer? With dignity, self-respect and gratitude for the part your son has played in helping you through the journey of recovery. | Mental health service user respect dignity MMU Manchester metropolitan university social care trust bipolar child son honesty catherine skelton |
| My NEADs | By the time a wrong diagnosis is reversed, Anne has had to survive many years of physical and mental side-effects from an inappropriate treatment regime. Yet, somehow, she has maintained her own dignity, kept the respect of her family – and prevailed. | Mental health service user respect dignity MMU Manchester metropolitan university social care trust NEAD epilepsy diagnosis neurologist ocd recovery |
| Hearing Patient Voices: healing and recovery through digital storytelling | This is Pip Hardy’s presentation to the Summit for Global Mental Health, Capetown, South Africa October 17th 2011 (www.globalmentalhealth.org). Since its inception in 2003, the Patient Voices Programme has enabled patients, carers, service users, nurses, doctors, managers – all stakeholders in health and social care – to create their digital stories of health, illness, life, death, hope, despair, triumph, challenge, joy and sorrow – the stories of humanity. | Pip hardy patient voices global mental health summit 2011 presentation capetown south africa |
| The patient who didn’t die | For a researcher, an article in a scientific journal finally sheds some light on the unlikely survival of a patient in a trial many years ago. This resonates with a remembered phrase from a medical text read in her teens, providing an insight into the wholeness that needs to characterise the researcher’s view of a patient. | Department of health patient public involvement research ppi engagement Toto Gronlund |
| The elephant in the room | Philip, like many patients, would like to be involved in research. But how does he know what research is relevant to him? The supermarkets and online retailers he uses have a profile of him and his interests – could more effective systems match more patients to more trials? | Department of health patient public involvement research ppi engagement Philip Green information awareness participation |
| Why research? | Jean is a medical professional, and also a person with Motor Neurone Disease (MND). Whilst this means she knows the seriousness of her condition, it also means that she understands the crucial importance of patient participation in research to advances in understanding and treatment. | Department of health patient public involvement research ppi engagement Jean Waters mnd motor neurone disease doctor fightback |
| Why wait? | Francesco has had three heart attacks. He has become involved in the process of research and an avid follower of the results of research. Why? Because of his parents and grandparents, and for his children and grandchildren… | Department of health patient public involvement research ppi engagement Francesco Palma smoke smoking fat cholesterol heart attack bypass nutrition disease lifestyle parent grandparent lipoprotein test screening |
| At the centre | A long awaited diagnosis of Endometriosis brings with it an unexpected change from being treated as a patient to being treated as a disease. This sends Angela on a journey of investigation and enquiry. As she travels that journey, Angela questions the motivations and drivers behind research, and comes to the conclusion that, to improve the commissioning, quality and relevance of research, she must place herself, the patient, at the centre of the process though her own participation and engagement. | Department of health patient public involvement research ppi engagement Angela Barnard endometriosis diagnosis treatment termination evidence cocreation |
| Room 22 | What does it feel like to be an elderly patient in a care hope, with limited ability to communicate one’s needs and wishes? How does a young professional adapt to cases like this, connect to her patients, and ensure their well-being? | Tracy Mercer University of Nottingham AHP allied health professional training education mentor preceptor development staff support personal care home elderly lady room 22 tv isolation anger communication empathy |
| My best is all I can do… | Since her initial placement on a dementia ward, Dawn has understood the contribution that her skills as an Occupational Therapist can make to her clients through regular life story work, etc.
She’s now more aware of the other structural, organisational and financial factors that affect the level of care she can provide, but she’s still committed to providing the best care she is capable of. |
Dawn Holden University of Nottingham AHP allied health professional training education mentor preceptor development staff support first job dementia elderly ot functional ward determination connection life story |
| Learning to work smarter, not harder | David’s energy and determination take him from school to university despite his dyslexia. When he moves from university to the initial phases of his career, he finds that the support systems in place are different, and he must learn to work smarter, not harder. | David Abbott University of Nottingham AHP allied health professional training education mentor preceptor development staff support dyslexia assessment review self help determination drive enthusiasm |
| Caring | There was never much question about what Wendy would do for a career. From her earliest days, caring came naturally to her and she was determined to work to the highest standards, despite the parsimonious attitude of private care home managers.
Nowadays, working in the voluntary sector, Wendy continues to care for people with dignity and respect, while feeling valued and respected herself. |
Dementia Alzheimer’sScotland resource centre Dundee dignity respect privatesector voluntarysector carehome value |
| Still fit | Strong and healthy as a young man, Wallace has always loved sport and being outside.
His loss of vision has meant that he has had to find other ways to exercise, but he still manages to keep fit – and positive. |
Dementia Alzheimer’s resource centre Dundee vascular loss vision eyesight neurologist sport shop steward fitness exercise |
| It’s a different world | Once a popular and confident speaker, loss of the ability to speak easily has been one of the worst aspects of dementia for Rob. Now, laughing and smiling, he reflects that a world without a memory can still be a happy one. | Dementia Alzheimer’s resource centre Dundee speaker speaking speech loss southAfrica words confidence fear diagnosis buses copingstrategy laughing smiling happy |
| It’s the art | Gerry reflects on art, the links between art and humanity, and the meaning of art in his life, As he struggles to take in his diagnosis of dementia, Gerry appreciates the care and kindness at the centre, and being with others in the same boat – and knows that art and music will keep him connected to the world. | Dementia Alzheimer’s resource centre Dundee diagnosis anger despair art travel wood cabinet-maker care kindness care reflection connection |
| Some things don’t change | Bubbly, attractive and vivacious, Etta has lived life to the full, driving interesting cars, running amusement arcades and travelling around the world. For as long as she can remember, she has always loved food, although these days it’s harder to remember what she likes. | Dementia Alzheimer’s resource centre Dundee childhood family mother auntie food fun memory forgetting travel |
| It’s home | Bill’s love of sports (especially football), travel and keeping busy and happy memories of army service in Korea nevertheless lead him to conclude that home is the best place to be. | Dementia Alzheimer’s resource centre Dundee army Korea travel football home |
| The lad fae Norrie’s Pend | His sense of humour is undiminished as Alex looks back at various incidents in his life, laughs at the tricks his memory plays now at the Bookies and the shops and looks forward to the future. | Dementia Alzheimer’s resource centre Dundee Norries Pend memory army shopping wife heart attack stent humour |
| Making the most of life | Trained as a solicitor, Aileen turns her memory to good use recalling family stories. Speculating as to whether stress and Alzheimer’s are linked, she nevertheless tries to make the most of life, like her mother and grandmother before her. | Dementia Alzheimer’s resource centre Dundee memory family stress |
| The day the singing stopped… | Sue’s home is full of laughter, singing and dancing. Then, one day, the singing stops. | sheffield council carer sue wood dementia violence wife attack loss singing dancing love change |
| Six phrases of Urdu | Shahid’s family and community have a strong tradition of providing support and care for family members. His colleagues in the NHS are making efforts to engage and connect with the Pakistani community, but an incident during his mother’s care suggests one more simple skill professionals could learn… | sheffield council carer respect mother family support respect urdu bme shahid ali |
| What can I get for you? | Ilsthar’s sister Zenib has severe learning difficulties.
She, and her family, are aware of how she could be best and most effectively cared for, but it requires an imaginative approach by those who commission her care… |
sheffield council carer learning disability Pakistan holiday sister mother ilsthar ahmed bme |
| What do you say? | Finola cares for her husband, who was an academic, a writer, a sportsman, and a loving partner. Those parts of his life have now been lost to stroke. Now, Finola even has to speak for him – but what should she say? | sheffield council carer dementia finola marks care wife loss stroke |
| I never ask ‘Why me?’ (Cantonese) | This is the Cantonese version of Helen’s story. Accessing services is made more difficult for carers when they face barriers of language and culture. These can make it difficult to understand what support is available and to access those support services. Helen’s determination to identify and engage with services that can support her in caring for her husband eventually pays off – for both her and her husband. | sheffield council carer Chinese mental health depression husband bme hong kong Cantones language support GP medication migrant Helen tsui |
| I never ask ‘Why me?’ | Accessing services is made more difficult for carers when they face barriers of language and culture. These can make it difficult to understand what support is available and to access those support services. Helen’s determination to identify and engage with services that can support her in caring for her husband eventually pays off – for both her and her husband. | sheffield council carer Chinese mental health depression husband bme hong kong Cantonese language support medication GP migrant Helen tsui |
| Bob | Ash, who works on the telehealth-supported COPD rehabilitation team, and Bob, one of her clients, have a shared interest in hill-walking and the outdoors. When Ash injures her knee and needs to go through physical rehab for her knee, parallel experiences turn into a sense of shared goals. | copd pulmonary rehab telehealth mountains hill walking sports outdoor injury telehealth goals pentland exercise knee ash corry |
| Never give up hope | Inspired by her son’s battle with his own addictions, Nancy joins the telehealth-supported COPD rehabilitation programme in order to shake off her own addiction to smoking and to recover her health. | copd pulmonary rehab telehealth love son drugs rehab addiction nicotine methadone counselling alcohol heroin copd emphysema |
| Why me? | A hard-working boatbuilder, fisherman and joiner, John was fit and capable. In his fifties he is affected by Angina, Asthma, bladder problems and then COPD – something he’d never heard of.
After the pills and inhalers, the telehealth-supported pulmonary rehab programme puts hope back into his life, guides him to further programmes, such as ‘Breathe Easy’ and, together with the support of his family, keeps him going. |
copd pulmonary rehab telehealth john horne why me angina asthma tar lungs inhalers pills exercises breathe easy family |
| Someone who believed in me | Irene’s COPD manifests as unexplained and unexpected attacks for which she seems unable to get an answer. The support and belief of professionals and peers within the telehealth-supported pulmonary rehab programme has allowed her to finally make progress. | copd pulmonary rehab telehealth panic attack management care peer support blood pressure |
| Good health to bad health | COPD took Dusty from a fit, outward looking man to someone with limited physical horizons.
The telehealth-supported pulmonary rehab programme has given him the support to improve management of his condition, but the death of his son takes him back to smoking. |
copd pulmonary rehab telehealth dusty millar Scotland fitness army smoke smoker cigarettes third stage prevention cure food death son loss |
| Long distance communications | Telecommunications technologies allow Christine and her colleagues to bridge the distances between therapists and patients, and so deliver pulmonary care to COPD patients more effectively and more efficiently.
Similar technologies allow her to bridge the distances between her and her family in New Zealand, but the experience illuminates other parallels. |
copd pulmonary rehab telehealth telecommunications new Zealand Scotland distance skype support Christine mcclusky remote family smoking cigarettes health |
| A leap of faith | Some changes in Carol’s life, like becoming a senior clinical support worker on the telehealth-supported pulmonary rehabilitation programme, have required her to make a leap of faith. Not only has her new career given her the opportunity to help service users and to see how much they can benefit from support, but their growth and recovery has been an inspiration for her. | copd pulmonary rehab telehealth carol maguire sob shortness breath support worker career change reward |
| Challenges | Despite a weak chest from an early age, Bob has set himself physical targets and challenges throughout his life.
As his health deteriorates, he reassesses and reframes his goals, but a fall undoes many years of hard work. It is then that the support and help of the Pulmonary Rehab team come to the fore. |
asthma copd pulmonary rehab bob knowles scotland islands munroes rugby swimming walking telehealth |
| 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? |
pregnancy caesarean cesarean epidural syntocin drip pain midwife labour contractions nurse heartbeat monitor rosie stenhouse |
| Footsteps | A brave and powerful story, describing a journey from abuse to recovery, via self-harm and indifferent support services. | Recovery abuse self harm child sexual cutting support |
| 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. | eva heymann sunrise sunset life death light dark age aging dementia diagnosis |
| I went to work… …and delivered sandwiches | The day bush fires strike, Lisa has to adapt her role and skills in order to provide empathic and appropriate support for the victims.
Amidst the wreckage, the smell of the fire brings back to her childhood experiences that inform her ability to do this work so well. |
Lisa walklate bendigo community health services fire bush professional carer reflection disaster loss grief personal memories connection nurse relief food empathy shelter |
| The Barrel | Things from the past, contents sometimes unknown, can challenge or block our actions and our ability to move forward with our lives. | Bron moore bendigo community health services fire bush professional carer reflection disaster barrel memories past professionalism integrity self respect principles metaphor |
| Therapeutic observations? | To what extent are patient observations therapeutic, and do they promote patient safety? | RCN NPSA safety observation therapeutic risk suicide self harm Samantha chapman |
| Lost in translation… | All professions develop their own phraseology, their own argot, often as an attempt at clarity and consistency of terminology when communicating with a client. However, what is clear and accepted language to a professional may not carry the same meanings to a client, leaving room for misunderstanding and possible safety issues. | RCN NPSA safety sexual health pregnancy nurse Mary Hutchinson |
| Prader-Willi, Madonna and a fridge | There must always be a balance in risk assessment that is informed by the needs of the patient, not simply the potential liability of the organisation. | RCN NPSA safety Prader-Willi mark jones diabetes mental health secure arson ocd testosterone anger food risk mental health |
| Finger on the pulse | After seeing the support a midwife received following an incident, Jeanette decided to train to become a Supervisor of Midwives. Jeanette’s experiences have brought home to her how essential it is to keep a finger on the pulse of what is happening at all times, both for the safety of patients and the sake of staff. | RCN NPSA safety midwife birth management ward alarm jeanette jones monitor heart fetal foetal resuscitation scbu scibu neonatal crash forceps |
| If something’s worth doing… | Sometimes, those trying to facilitate and drive safety and quality improvement can feel like outsiders. Working in partnership with other professionals provides Claire with an effective strategy for engagement and great personal satisfaction. | RCN NPSA claire wedge safety quality improvement team nurse |
| What comes first, the chicken or the egg? | How does a nurse educator who wants to improve practice realise her goals? Can it be achieved as part of continuous quality improvement, or must current practice stop while training is developed and delivered? | RCN NPSA safety alison small training catheter suprapubic pubic supra risk skills development champion |
| A defining moment… | At the defining moments in a career it is often personal qualities, such as determination and honesty, that shape what will happen. | South essex partnership trust leadership faye swanson |
| From forest to forest | Dawn reflects on some of the challenges facing non-executive directors – in both the developed and the developing worlds. | South essex partnership trust leadership dawn hillier |
| Coming of age… | For Richard, exploring the world, its people, and its places is an experience that both marks a ‘coming of age’ and turns his preconceptions about a teaching career on their head. | TESOL vocation apartheid teenager teacher career calling racism richard pemberton |
| The roof | Although her own daughter changes her mind about the career she would like to have on a regular basis, Dalal is, and has always wanted to be, a teacher. When her enthusiasm for TESOL teaching begins to flag, she goes back in her mind to her own childhood, teaching her toys on the roof of her parents’ house and she knows, again, that she has made the right choice.. | TESOL vocation |
| Parting a curtain of silence | ||
| A one-way ticket | Motor Neurone Disease tops Jean’s list of diseases not to have. Diagnostic challenges combine with the absence of treatment or cure. But there is one thing that people with MND can do to help themselves and others… | Motor Neurone Disease MND research clinical trials diagnosis tests neurology DeNDRoN Jean Waters |
| Healing waters, people and places | Mental illness and other chronic conditions disturb the tranquillity of Wayne’s life, yet many years later and after much difficulty, the sound of water still anchors him securely to life. | La Trobe Bendigo Australia recovery mental health drugs compliance childhood abuse forgiveness healing schizophrenia bi-polar disorder Wayne Weightman |
| The rules of grief | The loss of Tracy’s premature baby is made so much harder by people who impose their own expectations and rules on how she should grieve. | La Trobe Bendigo Australia recovery mental health premature baby death grief loss depression Tracy Kidd |
| Playing in unfamiliar territory | Sue is surprised to find that she had become caught up in the ‘bossy world of psychiatry’ and learns that ‘play’ is an important part of recovery. | La Trobe Bendigo Australia recovery mental illness health psychiatry play therapy professionals patients Sue Kidd [something about equality with professionals and patients doing stuff together]] |
| The magic faraway tree | In the trauma of the Black Saturday bushfires of 2009, the large tree in Mandy’s garden has become a symbol of stability, history, friendship and recovery. | La Trobe Bendigo mental health Australia fire Black Saturday loss trauma recovery support hope friendship Mandy Kenny |
| The old ogre | Liz’s ‘Pop’ was once a vibrant, active and driven man. As a health professional, Liz feels helpless watching someone she loves battle through mental illness. | La Trobe Bendigo Australia recovery mental illness health nurse father parent depression despair family carer identity |
| Life is but a meta-4-letter word | Dave describes how his ride through life has been made challenging by the onset of mental illness at an early age. By telling his story, Dave hopes that others on similar journeys feel less alone. | La Trobe Bendigo Australia recovery mental illness health group therapy delusion schizophrenia Dave Griffiths |
| Photos | In Colleen’s story, a traumatic event triggers ongoing issues with her mental health and photos have come to symbolise both remembering her past and moving on. | La Trobe Bendigo Australia recovery mental illness health childhood loss trauma bi-polar anxiety acceptance Colleen Gale |
| It’s not cool to take drugs | Although Carolynne knew that taking drugs could lead to schizophrenia, she did not think it could happen to her. Now she takes drugs every day to stay well. | La Trobe Bendigo Australia recovery mental illnesshealth drugs teenage adolescent schizophrenia catatonic state electric shock treatment Carolynne Comodromos |
| Butterfly | Carol gives a heartfelt account of being lost. She talks about what it is like when the ‘door is down’, and her confidence and happiness when the ‘door is up’. | La Trobe Bendigo Australia recovery mental illness health bi-polar childhood abuse fear anxiety loss Carol Harris |
| The girl in the garden | Brendan describes what it is like to be debilitated by mental illness and how being a consumer consultant has been integral in his recovery journey. | La Trobe Bendigo Australia recovery mental illness health catatonic state hospital schizophrenia Brendan Landy |
| Precious life | ||
| 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.
Helena Mathieson is running the 2011 Edinburgh Marathon in Steve’s memory, and in aid of the MPS Society. You can donate to MPS athttp://www.justgiving.com/Helenamathieson. |
steve gee cancer glyoblastoma mps genetic inheritance daughter mucopolysaccharide death loss testing memories inheritance rare brain tumour car crash |
| Going on the psychiatric ward: Rachel’s view | Rachel describes her fear at finding herself in A&E at 1.00 a.m., not understanding how she got there. She has multiple personality disorder and the psychiatrist wants to admit her to the psychiatric ward – a place she has heard described as ‘bad’. But when Rachel gets there she finds a place of calm and safety, one that gives her hope that maybe things will start to get better. | Rachel Oxley mental health multiple personality disorder psychiatrist hospital nurses safety fear hope |
| Gretel’s exclusive club | A routine 20 week scan revealed that Marissa’s baby had a serious heart condition. They were advised to expect her to be a bit blue when she was born, but at two weeks’ old, Gretel stopped breathing. Now Gretel has celebrated her first birthday and is waiting to have further open-heart surgery. | Marissa Lambert baby ultrasound heart surgery emergency services |
| A safe pair of hands | Working as a physio in a Secure Hospital, Ann recalls teaching a particularly withdrawn patient how to give a simple shoulder massage. The experience affected Ann deeply but when she later tried to discuss a further workshop on self-awareness, she was reminded that there is now a NO TOUCH policy between patients and staff. | secure hospital trust physio physiotherapist patient boundaries physical contact safety policy no touchmental health learning disability disabilities ann childs mental health patients physiotherapy massage learning disability nurses loneliness isolation self-awareness |
| Going on the psychiatric ward | When Andrew’s wife undergoes treatment on a psychiatric ward, he feels increasingly invisible to the medical staff and begins to wonder what his role is in the process. | Andrew Nickeas psychiatric patient mental health nurses staff communication |
| Hope for the future | Sheena’s work with people with COPD leads to working with patients to improve their care through the use of telehealth systems. Admissions are reduced, hospital stays are shortening – and those around her, both patients and family, have renewed hope for the future. | RCN isle bute homepod pod telehealth copd smoking cigarette smoker nurse quit spirometry lung age |
| My Pod | Shortness of breath caused by COPD and Emphysema change Margaret’s life radically. Leaving the house, breathing, or caring for her granddaughter become things of the past. However, the arrival of telehealth equipment in her home provides reassurance, better monitoring, management and treatment of her condition – and the chance to share in the co-production of care with her granddaughter! | RCN isle bute homepod pod telehealth copd Margaret Cameron granddaughter |
| How can I make a difference? | Maggie’s vocation has always been to care. Her experiences of health issues only serve to reinforce the excitement she feels now that telemedicine technology can be used to benefit her patients. | RCN isle bute homepod pod telehealth Maggie clark community nurse cancer asthma |
| Not Florence Nightingale? | Lynn’s nursing career is successful, but brings less and less patient contact as it develops. Paradoxically, working on an innovative and effective telehealth project brings her face to face with her patients, and finally to an awareness of the nature of her vocation. | RCN isle bute homepod pod telehealth copd lynn garrett vocation stroke care |
| Opportunity knocks | Katrina has always wanted to help and care for patients in better and more effective ways. She develops education and self-care programmes to help patients with respiratory conditions, and then recognises the opportunities and benefits that telehealth programmes can – and do – bring to her patients. | RCN isle bute homepod pod telehealth Katrina Flannigan copd home monitoring repiratory copd fear attack admissions |
| Breathless | Gardening, fishing, dancing, family – these are all important aspects of Jim’s life that Asthma and COPD take away from him. The uncertainty of when another attack will happen haunt Jim’s life until telehealth equipment makes it possible for nurses to monitor his condition from a distance. | RCN isle bute homepod pod telehealth copd breathless gardener gardening jim james simons fishing dancing chest infection asthma |
| Delivering Telehealth: a circular journey | Charles is an inventive and enthusiastic child, whose blend of vision, determination and technical skills are just what is needed to take telehealth from tentative concept to effective reality. | RCN isle bute homepod pod telehealth charles lowe |
| 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. | alcohol liz Anderson families addiction abuse husband wife |
| Suicide | 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 | Self harm suicide hospital psychiatry decisions drugs alcohol dan kinnair |
| Not our concern now | A university tutor tries to help a student challenged by more than study problems | Student tutor university mental health alcohol failure suicide liz anderson |
| 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? | June Tagg carer daughter mother benefit rights needs money resources peritonitis diabetes insulin thyroid dialysis peritoneum |
| 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. | Self harm suicide Nigeria Africa psychiatric healthcare hearing voices belief rhetoric reality dan kinnair |
| Working as a team? | As an airline pilot, Martin is drilled and skilled in the essential principles that underpin safe, effective teamwork. When personal tragedy strikes, the universal relevance of these principles, from flight deck to operating theatre, is brought into high relief. | RCN safety aviation martin bromiley team teamwork operation tracheotomy tracheostomy |
| Don’t worry, we are here to look after you | A stay in hospital cared for by a compassionate nurse laid the foundation for Stuart’s future career in nursing, while the RCN has laid the foundation for personal and professional development. | nurse caring violence reassurance student executive personal professional development research |
| Life with the RCN | What’s it like being an RCN steward? Well, it’s not all beer and sandwiches….. | RCN steward career responsibility support development involvement Justin mcbride |
| Look both ways | When a client’s life is at risk, Francis acts instinctively and courageously – but would he do it again? | mental health secure railway bravery client risk safety rescue francis lee |
| 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. | eva heymann kristallnacht chocolate watch mother daughter exile persecution holocaust nazi kindertransport |
| 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. | genes stroke inheritance stroke blood pressure self care diagnosis exercise fitness drug concordance run running |
| Recovery | 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. | alwyn neadley learning disability recovery therapy support mental health car crash accident professional |
| Amesegenallo | A trip to Ethiopia opens Laura’s eyes to the value of education and the price of a smile. | ethiopia values education determination child school disabled laura meehan |
| Learning to listen | Angwen recalls a travelling and caring childhood … but over the years, depression and alcohol change her lovely, vibrant mother into someone who needs to be cared for rather than caring and Angwen learns how to listen. | nhs leeds pct ppi patient involvement mother alcohol depression tranquillisers daughter recovery listen care angwen vickers |
| They’re my eyes | Years of poking and prodding and eye drops and tests and blurred vision and heavy spectacles follow a childhood close encounter with a gate, all in the service of trying to improve Angwen’s vision. But she prefers to see things in her own way, through her own eyes. | nhs leeds pct ppi patient involvement eyes squint spectacles optician child family vision sight correction autonomy independence angwen vickers |
| My struggle | When an industrial accident leaves Tim disabled and depressed, the support of friends and family are as crucial as the medication he takes to set him back on the road to health. | sheffield city council mental health depression accident critical hospital tracheotomy family litigation recovery voluntary work |
| Tell me your story | Pep reflects on the process of creating her first digital story and on the beginning of the journey towards healing. | sheffield city council mental health carer autism children family mother digital story healing listen |
| Becoming the real me | As a child, Pam learns to look after herself and her parents by bottling up her feelings. Eventually all those painful feelings had to come out. But the journey to health and wholeness is supported by family and faith. | sheffield city council mental health depression medication cancer death son mother carer family recovery |
| I love you more | Mia recalls her beautiful, vibrant mother whose radiant smile was dimmed by depression, medication and, finally, cancer – but her memory still shines brightly in the hearts of her daughter and her grand-daughters. | sheffield city council mental health mother daughter depression cancer medication tranquilisers |
| Inlets | Memories of a seaside holiday trigger a daughter’s grateful reflections on the power of a mother’s love, even when there are mental health issues to be overcome. | sheffield city council mental health mother daughter seaside holiday reflection love family |
| Coming out the other side | The night Maureen’s son holds a lighted candle next to the curtains in the hope that he will soon join Jesus is the beginning of a long and difficult journey through psychosis and schizophrenia. | sheffield city council mental health psychosis schizophrenia mother family carer survival |
| When services fail | Although Lyn suspects that all is not well with her son, she is unable to convince social services to do anything… until it’s too late. | sheffield city council mental health epilepsy depression suicide police social services |
| A lost life | After many years of depression Jan’s talented and creative son, Ben, is eventually diagnosed with schizophrenia. As he becomes increasingly traumatised, Jan’s sense of loss is intense. She now speculates whether earlier intervention could have made a difference to the outcome. | sheffield city council mental health psychosis schizophrenia mother son depression distress family carer early intervention |
| The real Malcolm | When Alzheimers stripped Malcolm of his talents, speech and mobility, Barbara reflects on the quality of services in physical end-of-life dementia care, and on nurturing the real Malcolm through his senses and emotions right to the very end. | nao national audit office end of life care barbara pointon alzheimers dementia care home emotional well-being holistic senses discontinuity frustration family |
| A bed for Betty | When Teresa and her family make the decision that her mum would be better off in Hospice, they don’t take into account the possibility that a bed might not be available. | nao national audit office end of life care teresa reynolds hospice hospital bed cancer death dying uncertainty arthur rank peaceful |
| My journey with David | After a series of falls, David is finally diagnosed with Motor Neurone Disease (MND). As Margaret and David face the end of David’s life, and the end of their journey together, Margaret reflects on the complexities and challenges – as well as the rewards – of caring for David at home. | nao national audit office motor neurone disease mnd respite care end of life margaret farrell david clark elderly fall incontinence hospital critical care exhaustion frustration uncertainty unknown unreality unpredictability |
| Why I became a blood donor | A terrible car accident as a child, in which Ken nearly died, resulted in his decision to give blood – and to the satisfaction that his involvement in this way will help others to live. | nhs leeds pct ppi patient involvement rta accident blood ken martin |
| My careers officer said… | Andy’s early career choices were determined by his mother – but not quite in the way he intended! It’s only relatively recently that he has taken the career officer’s advice and turned to a life of caring for others, getting involved in their lives and their welfare – and finding a new life for himself in the process. | nhs leeds pct ppi patient involvement alcoholism aa circus lion tamer carer elderly community andy cohen |
| A clearer road ahead | Ian’s first digital story left him feeling shaky and nervous – for an hour or so. But over the next days, weeks and months, a whole new life has opened up. This second story was created to celebrate the changes and the possibilities brought about by making that first story. | sheffield city council mental health service user digital story recovery healing university confidence future |
| 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. | diabetes nurse mother daughter dignity confidence dilemma hospital jenny gordon |
| Olives | A story about how growing up changes us. | |
| From Red Dwarf to black hole…and back again | Pat’s busy, full and energetic social life and career come grinding to a halt after accidents and surgery, but the expert patient programme provides her with a new frame of reference within which she can accept her new role as a patient, and begin to build a new, different, but rewarding life. | nhs leeds pct ppi patient involvement expert patient programme surgery skiing travel pat nelthorpe |
| Harry’s legacy | Linda’s father taught her important lessons about how people should be treated. But her experience of healthcare as a result of accidents, miscarriage and a mysterious, undiagnosed illness gradually strip away Linda’s self-respect. Getting involved has offered a way for her to regain her dignity and honour her father’s legacy. | nhs leeds pct ppi patient involvement fibromyalgia accident miscarriage dignity depression mental health redundancy diagnosis family children baby father |
| Getting involved | It’s Ken’s wife, tired of having him under her feet at home all day, who gives him the gentle nudge he needs to get involved. The satisfaction of having a say in how healthcare services are designed and delivered have given Ken a new lease on life – and keep him out of the house! | nhs leeds pct ppi patient involvement depression nice guidelines satisfaction ken martin |
| I’ll do anything | Although Brian was happy to get involved in most projects, he was a little sceptical of something called Patient Voices … But making a digital story proved to have benefits that went far beyond the excellent refreshments. | nhs leeds pct ppi patient involvement patient voices digital story rheumatoid arthritis empowerment confidence arthritis care volunteer brian clark |
| An ordinary life | Aileen reflects on the only life she knows, a life of joy and sadness – an ordinary life – until one day it all becomes too much. However, becoming involved as a patient has led to a new life. | nhs leeds pct ppi patient involvement bereavement loss mental health breakdown alcohol aa aileen santabarbara |
| Soulmate | For most people, the end of life period is a few days, weeks or months. Derek’s wife Barbara was left completely incapacitated by a series of strokes in 2003 and, with the help of planned respite care, Derek was able to look after her in the familiar environment of their home, until those last few days… | nao national audit office stroke respite care end of life derek barbara whitehead |
| You only get one mum | Sue’s mum suffers from mental illness. When Sue and her brothers and sisters are threatened with expulsion from school because of her mother’s behaviour, a kindly social worker comes to the rescue, and introduces Sue to Barnardos… | university of liverpool get involved 4 the future sue child care carer parent mental health depression psychosis barnardos courage family school social worker |
| Blink once for yes | When Stephen wakes up staring at a strange ceiling, unable to move, speak, or even breathe for himself, it is only the beginning … Fortunately, a young doctor goes out on a limb and manages to get specialist support to help him along the road to recovery. | university of liverpool get involved 4 the future stephen cronin car accident paralysis ceiling blink spinal injury decision initiative chance ventilator recovery recuperation family |
| One woman’s life | Pat reflects on a long life filled with tragedy and sorrow… and remarkable resilience. Now in her 60s, she has managed to recover the anticipation and joy of youth once more. | university of liverpool get involved 4 the future pat lavery breast cancer family mother sister daughter death resilience elderly |
| Alphonsus | The threat of deportation hangs over many refugees and asylum seekers. Martin and many others fight to save Alphonsus and enable him to live a better life than the one he had in Biafra. | university of liverpool get involved 4 the future martin ralph alphonsus refugee asylum seeker migrant campaign deportation justice suicide home office biafra |
| My friend Autopilot | Kath’s internal autopilot has steered her safely past many obstacles and dangers in her life. When at last she is able to fly solo, there is a twinge of regret… | university of liverpool get involved 4 the future kath corrie breast cancer mastectomy mental illness death family children parents neurosurgery courage |
| Darkness | When Judy’s life is shattered by an unexpected panic attack, leaving her with severe depression and anxiety, her husband is her main support, until the appearance of Jeblington, a puppy who gives her back a reason to live. | university of liverpool get involved 4 the future judy bowker mental health medication ect panic anxiety attach depression dog recovery volunteer rspca |
| 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. | safety flight nurse helicopter teamwork crew resource management communication near miss critical incident emergency |
| What if the relationship is not enough? | The human relationship between mental health nurse and client is one of the most powerful tools available to a mental health nurse. But when Gemma’s carefully-nurtured professional relationship with a client breaks down, what other avenues are open to her? | university of nottingham mental health nurse trainee qualified young trust relationship loss suicide son marriage breakdown professional detachment gemma stacey |
| Maybe it just isn’t the right job for you? | After qualifying, Vicky begins her career as a mental health nurse with excitement and enthusiasm, but when the therapeutic relationship with a patient breaks down dramatically, she is shocked and fearful. Is this the right job for her? | university of nottingham mental health nurse trainee qualified young vocation career violence attack |
| Who is an expert? | As an enthusiastic, committed, newly-qualified nurse, Susanna values and acknowledges her patients’ own expertise in their conditions and care, but can she maintain her belief when the system seems to feel otherwise? | university of nottingham mental health nurse trainee qualified young patient expertise respect idealism records notes ward sister susanna morris |
| Breaking bad news: Is there a right way? | How should we break bad news? How can we train and prepare nurses for this situation? Early in her career, Rebecca is emotionally affected by a patient’s death. She is thanked by the family for her professionalism and friendly, caring manner – but her openness is seen by a colleague as wrong and unprofessional. | university of nottingham mental health nurse trainee qualified young death loss bereavement support breaking news |
| Are we there yet? | When Rachel qualifies she is idealistic, determined to help and fix her young patient. When circumstances mean that she cannot help her client reach the end of the journey, her resulting uncertainty and self-questioning are helped by the support and understanding of her professional peer group. | university of nottingham mental health nurse trainee qualified young patient care journey family confidence eating disorder rachel hadland |
| A cold sunny day in December | Lindsay is a committed, enthusiastic and newly-qualified mental health nurse – eager to learn and dedicated to caring. But one day, early in her career, she is brought face-to-face with aspects of practice that are totally in conflict with her vocation. | university of nottingham mental health nurse trainee qualified young lindsay rawson safeguarding team physical abuse elderly care home |
| Nurse in charge | Heather has always wanted to be a nurse. A challenging night shift soon after qualification shakes the foundations of her belief in herself, but she is able to start the process of rebuilding through the small, but important successes that make up her day-to-day practice. | university of nottingham mental health nurse trainee qualified young night shift responsibility confidence heather merry |
| A knock on the door | When Lindita arrives in a country where the highest barriers to her health and welfare are those of language and culture, she suffers from physical and emotional problems until an Albanian voluntary organisation opens a door in the walls that hold her back. | migrant immigrant refugee newham pct shpresa communities of health albanian shqip barrier language depression stress mental health community voluntary organisation |
| Where would I have been without Shpresa? | Landi is sent to England at the age of 12 to escape the war in Albania. Alone and unable to communicate, he fends for himself and courts trouble… until he gets up the courage to go to Shpresa and eventually realises his lifelong dream. | migrant immigrant refugee newham pct shpresa communities of health albanian shqip child youth helpless language family war trouble truant acting dancing drama dream university |
| Never give up | Flutura escapes the horror of war in Albania only to face the harsh reality of trying to make a new life in a strange country. Sickness and depression eventually give way to joy and belonging to a new community. | migrant immigrant refugee newham pct shpresa war trauma mental health illness communities of health isolation language depression albanian shqip children teacher |
| How I turned my life around | When Flora leaves her home and family in Albania hoping for a better life in England, she is unprepared for the isolation and difficulty of settling in a new land… until someone tells her about Shpresa. | migrant immigrant refugee newham pct shpresa communities of health albanian shqip mental health depression counselling psychotherapy trauma depression isolation lonely friendship community |
| A light at the end of the tunnel | Evis is ill and in hospital, faced with a life-threatening condition. She panics…. and recalls earlier traumas when she was refused asylum and had no money to live. With the help of community organisations, she is eventually able to reach the light at the end of the tunnel, and now helps others who were once like she was. | migrant immigrant refugee newham pct shpresa communities of health albanian shqip community voluntary organisation panic hospital blood clot interpreter asylum depression fear trauma support prejudice |
| A journey that saved my life | Entela is excited when her husband invites her to join him in the UK; she cannot begin to imagine the perilous journey that awaits her before she can begin a new life in England. | migrant immigrant refugee newham pct shpresa communities of health albanian shqip war adriatic boat lorry journey baby danger depression communication difficulty community voluntary organisation |
| Hope never dies | As asylum seekers from Kosovo with little English, Eda and her mother face many difficulties as they try to build a life in London. Trauma and stress threaten to overwhelm them but eventually Eda learns, with the help of Shpresa and other friends, that what doesn’t kill you makes you stronger, and hope can overcome most things. | migrant immigrant refugee newham pct shpresa communities of health albanian shqip community voluntary organisation asylum mental health stress trauma suicide death hope study determination ambition |
| Appropriate care | The late stages of Cutie’s pregnancy are difficult, and beset with potentially life-threatening issues, but appropriate use of NHS resources results in her receiving care appropriate to her, and her unborn son’s, needs – and leads to Cutie making a commitment of her own to the NHS in turn. | migrant immigrant bme newham pct communities of health pregnancy diabetes birth child emergency care nhs resources |
| Invisible disabilities | Not all disabilities are visible but, as Cutie has knows, they still require consideration and support if, in her job, she is to perform and contribute to the extent to she is capable. | migrant immigrant bme newham pct communities of health disability support prejudice equality diabetes |
| Laura | For Louise and her daughter Laura, a summer of celebration is followed by the trauma of a burst appendix and urgent surgery. Unfortunately, Laura’s recuperation doesn’t go to plan, and further surgery and care is required before normal life can resume. | nhs leeds pct daughter appendicitis gp a&e anaesthetic burst appendix complications adhesions twisted bowel surgery recovery celebration care devotion mother louise miller |
| 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. | nun shcj alzheimers elderly diagnosis dementia forgetfulness fear uncertainty confusion hope courage resilience acceptance |
| The hidden disability | Teresa was obese for most of her life until a catalogue of chronic illnesses induced her to have a gastric bypass which led to a stroke… despite coping with the unseen effects of the stroke, the newly-thin Teresa revealed herself to be up for almost any challenge, surprising her family and herself by her determination. | stroke obesity diabetes arthritis high blood pressure operation gastric bypass blood clot weight loss obstacle challenge isle of wight iow |
| The most wonderful husband in the world | As Phyl looks back on a long and extraordinarily happy marriage, she recalls the days before her husband’s stroke, before she had to make all the decisions, before the isolation imposed by her caring duties, before discovering the Stroke Club…. | stroke husband marriage elderly carer isolation mental health bad news information support stroke club support isle of wight iow |
| Too much sun | When Margaret suffers a stroke while living in Spain, she is told she’s had too much sun… and that is just the first of a collection of mis-diagnoses. The correct diagnosis comes from an unexpected quarter and eventually she finds help, support and friendship at the Stroke Club. | stroke diagnosis travel optician stroke club support friendship community involvement isle of wight iow |
| Dancing feet | Joan is a born dancer. Her love of dance and music bring her joy throughout her long life until she has a stroke. At the age of 89, although she can’t dance any more, she still enjoys watching others and listening to the music. | stroke dance music elderly memories stroke club isle of wight iow |
| Vicious circles | Dave’s stroke leaves him exhausted and he has difficulties with walking and speaking. Nevertheless, he is left to his own devices to get well. Without knowing what help is available, it is difficult to know what support to ask for… | stroke services lack of information support isolation speech isle of wight iow |
| Julie | From the moment her younger sister was born, Carole has spent her life caring for others, despite suffering two strokes herself… much like Carole’s own resilience and concern for others, there has always been Julie, and there always will be. | stroke learning disability dyslexia recovery care caring family baby sister isle of wight iow |
| The longest night | Despite a layman’s interest in the brain and its workings, Bob is not prepared for the effects of a stroke and the threat to his concept of who he is. The Stroke Club helps his recovery and restores his sense of identity. | stroke brain identity professional fear stroke club loss of control isle of wight iow |
| Lost and found | Without support or friendship, opportunity or empowerment, even a profession and vocation can become a prison. Through becoming an RCN representative, Marie found her way out – and onto the stage of the RCN Congress! | career rcn congress marie hannah work self esteem activist profession representative nurse |
| Demons and despair | When an unexpected opportunity for some professional development presents itself, as a nurse with more than 30 years’ experience, Judy is unprepared for some of the lessons she can learn. | nurse accident crash car urgent care cpd hospital professional development communication empathy compassion learning pain |
| True colours | As professionals, how do we care, and how much can we allow ourselves to care? As a young nurse, Gemma finds that the professional and emotional difficulties she must navigate have a deep personal resonance. | university of nottingham gemma stacey nurse care professionalism humanity emotion mental health nursing identity pride difficult patient defence |
| Resilience | 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. | depression child childhood carer parent journey mother coping nurse |
| See you all later | It can be all too easy to take things for granted. Recollecting a serious car crash, Joanne is prompted to express her gratitude for the really important things in life. | university of huddersfield rta crash hospital ambulance emergency family children survival gratitude nurse |
| The complex pathway to motherhood | The termination of an ectopic pregnancy is just the beginning of a gruelling, discouraging, frustrating, heartbreaking, roller coaster journey to become pregnant by IVF. But Christine is determined… | university of huddersfield pregnant pregnancy ectopic termination ivf cycle despair depression hope determination uncertainty love child mother nurse |
| Angelic music | Mary’s love of music was one of the attractions of joining the Society. But when she decides to spend time in a remote part of Wales, with a flock of sheep as her main companions, she is not prepared for the extent to which she misses music in general and the liturgy in particular. | society of the holy child jesus shcj faith vocation liturgy inspiration calling music singing wales sheep cathedral bishop city easter nun community |
| It is a wonderful life | Aged 101, Sister Marie Cecile looks back on her life as a Holy Child Sister, beginning when, as a young woman, she had to pretend she was getting the milk when, in reality she was attending mass! | society of the holy child jesus shcj faith vocation calling france family africa mission nun community |
| Something out of the ordinary | KV’s response to celebrating the millennium by doing something unusual led her to Habitat for Humanity and to a stint on a building site working on affordable housing in south London. | society of the holy child jesus shcj faith vocation calling habitat for humanity build affordable housing nun community |
| The feet on the sofa | Josephine is only a baby when her father goes off to fight in World War 1. When he returns on leave, she doesn’t recognise him and is puzzled by his appearance in her mother’s bedroom. | society of the holy child jesus shcj faith vocation calling wwi world war one father soldier childhood mother sofa nun community memory |
| From sole to soul | It is during the unlikely activity of making a shoe that Isobel first hears the call. Initially resistant, with other plans for her future, she complies and looks back on her life with pleasure. | society of the holy child jesus shcj faith vocation calling shoes nun community |
| Could you have anything better? | Gemma’s calling may not have been what was expected for her, but there could not have been anything better. | society of the holy child jesus shcj faith vocation calling nun sister blind retinitis pigmatosis nun community love |
| In the face of a child | Although Frances Mary loved teaching little children, she wasn’t too keen on some of the messier aspects of the job. Unexpectedly, she learns that beauty and holiness can be revealed even in the most unappealing situations. | society of the holy child jesus shcj faith vocation calling child teach revelation poverty christ vision nun community |
| Inspiration from an unexpected quarter | As a young sister, Christine was fascinated by reports of the Great Train Robbery. The thought-provoking words of an older sister prompted reflection on human nature and our capacity to combine good qualities with bad. | society of the holy child jesus shcj faith vocation calling social work criminal prison crime good evil humanity nun community |
| No holding back | The seed of Anne Marie’s religious vocation was sown when she was still at school, took root when she encountered the Holy Child sisters in Ireland, and has grown steadfast throughout her life, bringing joy and satisfaction to others as well as to herself. | society of the holy child jesus shcj faith vocation calling dublin school family stamullen war nun community |
| The first ten years are the worst | Angela’s early aspirations of sainthood vied with more prosaic needs for extra sleep and enjoying convent life. Eventual discovery of her vocation teaching young children led her to another vocation and the discovery of the’ not-too-holy’ Holy Child Sisters. | society of the holy child jesus shcj faith vocation calling teaching school convent harrogate war hardship stamina nun community perseverance obedience |
| Out of Africa | As a child Angela dreamed of doing missionary work. When she learns that the Holy Child sisters have missions in the land of her dreams, her vocation is determined. She now looks back on many happy years teaching science in West Africa. | society of the holy child jesus shcj faith vocation calling africa mission teach nun community elderly memories |
| She’s fine, don’t worry | Lack of communication between professionals and relatives can create and exacerbate feelings of fear and lack of control. These can often be addressed by a few simple, informed, words from someone who knows the answers and takes the time to communicate them. | communication information heart valve surgery icu mother daughter sepsis complications kidney failure dialysis questions answers |
| In the humble and hidden life | In both her professional life as a midwife and her spiritual life as a Holy Child Sister, Catriona has seen the extraordinary revealed in the ordinary. | society of the holy child jesus shcj faith vocation calling sister midwife mother baby social justice childbirth revelation inspiration ordinary extraordinary nun community |
| 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. | pain agony suffering frozen shoulder adhesive capsulitis rheumatology drugs arm fear disability mindfulness meditation patience sleep darkness night calm buddha peace satipatthana sutta |
| From little acorns… | In this story, Val Leggett, Infection Control Nurse for Norfolk and Waveney Mental Health NHS Foundation Trust, describes how lateral thinking, team work and use of colleagues’ expertise achieved an award-winning facility. | rcn royal college of nursing nurse infection control mrsa organisation organization team teamwork val leggett award mobile cleaning wet room steam |
| Transplant | 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. | california england boarding school hay fever periods desolation roots garden pip hardy migrant immigrant |
| Can I have a hand, please? | Patients in the last days and hours of life can sometimes be challenging and even unreasonable. As the only male professional on the ward, Wee Haan is at first frustrated, but then patiently responds to the final requests of a dying man. | leicester university medical school student selected component ssc junior doctor training reflection heart failure elderly man comfort dying respect dignity frustration wee haan pang |
| Be patient with us | As a medical student, Wee Haan becomes acutely aware of the tensions between caring for the patient and caring for the family – and pleads for tolerance while he learns to find the right balance. | leicester university medical school student selected component ssc junior doctor training reflection trainee priorities balance anger family difficult confidentiality communication respect patience wee haan pang |
| Your type | When Steve chooses a placement at a hospice, in order to learn some of the ‘softer’ skills that he thinks will help him in the practice of emergency medicine, a casual remark causes him to reflect on what ‘type’ he needs to be to care for people facing death. | leicester university medical school student selected component ssc junior doctor training reflection stereotype consultant trainee emergency acceptance steve stephen corry |
| Care of the dying? | There are many preconceptions and stereotypes surrounding hospice care. When Steve chooses Hospice for his clinical placement, he is pleasantly surprised to find that care of the dying is not at all what he had anticipated. | leicester university medical school student selected component ssc junior doctor training reflection hospice stereotype calm peaceful life living family respect dignity steve stephen corry |
| A heart of stone? | As a medical student, Salam is shocked and angered when an emergency operation doesn’t go according to plan. But he comes to realise that things are not always what they may seem, and even consultants have feelings. | leicester university medical school student selected component ssc junior doctor reflection training reflection surgery aortic aneurism death consultant feelings frustration anger salam al-alousi |
| Yeah, I’ll go | Matthew is a keen and enthusiastic medical student. He successfully performs a ‘by-the-book’ catheterisation, but the discovery that there is more to his vocation than technical know-how leads him to reflect on the true nature of caring for patients. | leicester university medical school student selected component ssc junior doctor reflection training reflection catheter infection practice care dignity patient elderly bad news death respect matthew critchfield |
| Are you happy in your profession? | Abs had a successful career as an accountant in London before deciding to go back to medical school. Despite the ups and downs, his chosen path seems to be the right one. | leicester university medical school student selected component ssc junior doctor reflection training reflection vocation choice satisfaction involve include patient respect abs abishek tangri |
| 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. | depression suicide medication drugs concordance friends family support help julie coleman |
| Inside out | When Marie became a religious sister she felt a bit special. Changes in the Catholic Church and her work with people on the edges of society give her an opportunity to learn some valuable lessons. | society of the holy child jesus shcj faith vocation calling psychiatrist prison acceptance humility nun community psychologist |
| Crossing the road | As a young child, Jenny is inspired by the story of the good Samaritan. Spirituality is an important part of her life but it isn’t until she reads the moving testimony of a nun who works with people with HIV/AIDs that she discovers her true vocation. | society of the holy child jesus shcj faith vocation calling love gay aids hiv joy jenny bullen nun community |
| Standing on my own two feet | At the age of 82, Eva looks back on her life’s journey… from darkness and despair to light and hope, forgiveness and love, all the while sustained by her faith and the beauty of the natural world. | society of the holy child jesus shcj faith vocation calling jew germany kinder transport nun quaker despair hope eva heymann nun community refugee migrant immigrant |
| Double trouble | Caring for a partner with Diabetes requires a wide range of skills, in order to provide effective care and deal with hospital and emergency services. | diabetes inpatient philip allen carer hospital emergency services insulin behaviour |
| Hard-boiled eggs | It’s easy to make assumptions. Sometimes the results are amusing, and sometimes they have far-reaching consequences. | assumption sight child birth philip allen |
| A hospital is no place for a diabetic | As a diabetic, Peter is accustomed to managing his blood sugar levels. When hospital staff appear to take little interest in his diabetes, Peter’s concern about what might happen during the operation leads him to wonder why there can’t be an official handover. | diabetes inpatient hospital insulin smoking operation handover hypo blood sugar peter maufe |
| Extremes | George is used to receiving good treatment in hospital so when he is asked to hand over his diabetes kit, he agrees with some trepidation. His concerns are not misplaced as poor treatment results in dangerously high blood sugar levels. | diabetes inpatient hospital heart operation blood sugar insulin nurse standards nhs george connelly |
| Taking control | Barbara has had plenty of time to reach an accommodation with diabetes, and knows what works for her, even when the health professionals are uncertain. | diabetes inpatient insulin syringe type 1 chronic disease empowerment injection hospital hba1c dafne barbara allen |
| An inspiration to heaven and earth | The day of his mother’s death is an abiding memory for Mr Naran. He lovingly recounts the story of his beloved mother’s last hours, setting it in the context of a life well-lived. | diabetes communities of health bme newham poseidon project heart death sudden mother son chronic disease inheritance reverence vasantrai naran migrant immigrant |
| My mum’s smile | Resita’s and her mother were very close – and shared a disease in common.
Resita remembers her soft and gentle mother with deep affection – and recalls the circumstances around her death. |
diabetes communities of health bme newham resita sambath cirrhosis liver death mother chronic disease migrant immigrant |
| In sickness and in health | Mrs Naran speaks many languages, but when the doctor tells her she has diabetes, she can barely believe him. A combination of careful diet, exercise, herbal medicine and her husband’s support enable her to live a full and healthy life. | diabetes communities of health bme newham kalijiri diet herbal medicine blood sugar exercise walking maniben naran self help chronic disease migrant immigrant |
| Shpresa: the medicine that saved my life | When Luljeta first arrives in the UK from Albania, she struggles to settle down. Gradually, with help and support from family, friends and neighbours, a community is established that helps her, and others from her country to integrate happily and with dignity. | communities of health newham albania support alienation integration immigrant immigration dignity language friends luljeta nuzi shpresa migrant |
| 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. | learning disability childbirth doctor insensitivity paediatrician compassion rubenstein taybi syndrome son mother relationships family love support future concern worry care carer |
| 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. | trans gender transgender sexual identity male female man woman hormone surgery abuse acceptance prejudice support family children gender dysphoria |
| My dear friend Arthur | Karen loves to dance, but one day an unexpected new partner sweeps her off her feet, and she has to adjust to the tempo of her life changing. | arthritis care leeds university medical school white rose gene genetic psoriatic dancing ipod karen hoffman |
| I’m back! | Gill has plenty of energy for hiking, exploring and enjoying travel and a young family. When she is diagnosed with rheumatoid arthritis, her world changes. It is an uphill struggle to rediscover her old self and she is not helped by thoughtlessly designed products and services. | arthritis care leeds university medical school white rose self image accessibility dda design campaigning gill bowskill |
| Eric’s first 50 years | Living with an undiagnosed chronic condition can be challenging for the strongest amongst us. The whole-hearted support of family and professionals is critically important if life is to be worth living. | arthritis care leeds university medical school white rose fibromyalgia rheumatoid eric moorhouse depression mental health employment diagnosis expert patient programme pain |
| Magic light switches | Arthritis can make simple tasks so hard, but simple, appropriate technology design can make huge differences to the quality of life. | arthritis care leeds university medical school white rose psoriatic light switch carole carter design |
| Max and me | A holiday in the sun seems to offer Brian the chance of some respite from the pain of rheumatoid arthritis, but air travel, as with so many other services, is not designed with consideration for those with Arthritis. | arthritis care leeds university medical school white rose mobility air travel public transport knee pain walking brian clark design rheumatoid holiday |
| Christmas | When tragedy strikes her family, the quiet and thoughtful support offered by Carmel’s community helps healing to begin. | society of the holy child jesus shcj faith vocation calling suicide support nun community |
| Be yourself | Judith’s choice of vocation was and is driven by the design to learn and teach, and to be recognised as a unique individual. Her congregation has provided the perfect place for Judith to be herself. | society of the holy child jesus shcj faith vocation calling nun community |
| Why me? | Dennis was an active, fit man who has struggled to overcome the effects of high blood pressure and diabetes, as well as chronic pain resulting from several accidents. The love and support of his family, and his faith, help him to come to terms with his chronic conditions and he is now living a much healthier – and more positive – life. | chronic disease diabetes diabetic aboriginal first nation live well ™ metis family hypertension cholesterol pain depression despair mental health faith loss hope |
| Something from nothing | ‘As children we are but the soft clay of the formative years; the form we take is in the hands of our moulders. Let the formers form with love and not with avarice so that days will be ones of promise and not the rags of time.’ | mental health sheffield hallam university occupational therapy service user abuse recovery job work depression respect breakdown suicidal child childhood |
| Fragile: deliver with care | A poorly-delivered diagnosis is a cruel thing to receive. When that diagnosis is of a beautiful daughter’s Multiple Sclerosis it is even more so. Grit, determination and family support get Muriel and her family through that diagnosis and provide the strength for what follows. | mental health sheffield hallam university occupational therapy service user multiple sclerosis ms daughter respect care bad news communication doctor counselling |
| A long and troubled road | Abuse and neglect in childhood can start a person off on the wrong journey through life. With many years of hard work and support, this storyteller has managed to get back onto a better path. | mental health sheffield hallam university bi-polar occupational therapy service user abuse recovery journey child childhood |
| Once upon a time… | The dearest gifts in life can result in the loss of things central to one’s own nature. When Pep, a vivacious and creative music teacher, has two autistic children that are sensitive to stimuli of any kind, she has to change her life in so many ways. Then, one day, a neighbour comes to her rescue… | autism mental health sheffield hallam university occupational therapy service user noise angry violent carer children silence weaving solace music penelope |
| Peaks and troughs | Nev is dynamic, successful and respected within his profession and interests. When a stroke affects his career and his hobbies, it brings psychological, as well as physical, changes and challenges. | mental health sheffield hallam university occupational therapy service user stroke depression obe queen recovery education |
| Jane and Peter’s journey | For Jane and Peter, what begins as a whirlwind relationship has to become one of mutual long-term support through kidney disease and a transplant. | mental health sheffield hallam university occupational therapy service user multiple sclerosis ms dialysis organ donation transplant kidney renal |
| My lost little boy | The loss of a baby in tragic and unresolved circumstances can leave a mother on a seemingly unending journey, but support, inspiration and help can come from the most unexpected of places. | mental health sheffield hallam university occupational therapy service user baby boy son loss lost dublin grave grief toxaemia bereavement mourning |
| Grandpa’s inspiration | Shirley’s Dad is a loving and loved father and grandfather – an inspiration to his family and his community. She pays tribute to his generosity and commitment to family and hopes that her own life may honour his memory. | chronic disease diabetes diabetic aboriginal first nation live well ™ father grandfather inspiration inspire respect fishing grandsons poem family tribute |
| My family | Many members of Yvonne’s family have died, including one of her children. These losses, together with the inspiration of her father, have taught her the importance of family and the need to take care of her own health. | chronic disease diabetes diabetic aboriginal first nation live well ™ father family death inspiration inspire respect |
| Mooshum | Susan lovingly recalls her Mooshum (Grandfather) and the powerful influence he has had on her life. His warmth, humour, knowledge and respect for cultural traditions has helped Susan to preserve much that is good about their culture, including the desire to live a healthy life. | chronic disease diabetes diabetic aboriginal first nation live well ™ culture tradition healing remedies humour dance frog child berries |
| Healing | Evelyn is a respected Elder of her community. In a letter to her grandson, Evelyn recounts the story of her life, from the trauma of residential school and its effects on her relationship with her own mother, to her desire to set a healthy example to her own grandchildren and other members of the community. | chronic disease diabetes diabetic aboriginal first nation live well ™ residential school trauma mental health breakdown mother elder family tradition cree |
| I remember them | Della pays tribute to her family, looking back with gratitude to her adoptive parents and forward to her two young sons, gently reminding them of the importance of a healthy lifestyle so that they will grown up strong and well. | chronic disease diabetes diabetic aboriginal first nation live well ™ family twin adopted children faith |
| Don’t knock on my door | So many members of Vicky’s family have died too young. When she is invited to participate in the Live Well with Chronic Disease programme, her wish is that they could have had the same chance of healthier lives. | chronic disease diabetes diabetic aboriginal first nation cree live well ™ death kidney heart dialysis |
| Our journey in life | Florence is a master at creating the Birch Bark Bitings incorporating the wisdom of the Medicine Wheel. She links the meaning of the symbols to her own life and her growing understanding of the need to live well. | chronic disease diabetes diabetic aboriginal first nation live well ™ medicine wheel wisdom healing tradition culture residential school |
| A second chance | Ericka’s life was saved by a liver transplant, but she continues to live with the knowledge that someone else had to die in order for her to live. | chronic disease diabetes diabetic aboriginal first nation live well ™ liver transplant organ donation drug overdose youth grandchildren spirit hope |
| The story of an eagle | Albert recounts the story of his life (and before), and hopes that the lessons he has learned the hard way may help his own grandchildren and other young people avoid the same pitfalls, and steer clear of the potential danger of diabetes. | chronic disease diabetes diabetic aboriginal first nation live well ™ drugs alcohol heart attack prison family |
| 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. | patient professional diagnosis support unexpected gynaecological exam |
| 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. | healthcare assistant royal college of nursing rcn racism discrimination compassion nursing training development child childhood |
| 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. | mental health memory accident bicycle amnesia forget |
| 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. | Sandwich generation elderly dignity daughter family mid life mother mothering empty humanity nurse carer liz anderson |
| 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. | broken arms care quality environment funding africa uk dan kinnair |
| Worth more than a bouquet of flowers | An employer’s response to mental illness can all too easily exacerbate the trauma and disruption that results, with terrible results for human dignity and self-respect. | exdra disability work employment prejudice discriminate discrimination difficulty respect mental health sectioned union employer |
| A fish out of water | At school and as a child, Tony had always felt out of place, but in the responsibilities and challenges of his new job, he no longer feels like a fish out of water. | exdra learning disability work employment prejudice discriminate discrimination difficulty respect special school learning difficulties driving |
| I’ve got it all | A teacher once said Natalie would never achieve anything – but she now has a home, a child, a career – and a passion for helping others to learn about the needs and capabilities of those with disability. | exdra disability work employment prejudice discriminate discrimination difficulty respect wheel chair paralysis |
| Tip off | Tetraplegia doesn’t stop Andy from having a successful education like that of his friends. Just like many of them, the route into employment comes from contacts and a ‘tip-off’ – in this case about a job for which he is uniquely qualified. | exdra disability work employment prejudice discriminate discrimination difficulty respect wheel chair paralysis tetraplegic it ict ecdl degree |
| Not just a piano tuner | Blindness seemed to have cut short Steve’s promising career as an engineer, and left him feeling dismissed and pigeon-holed. Family support and determination led him through to a post-graduate degree and responsible role. | exdra disability work employment prejudice discriminate discrimination difficulty respect blind blindness sight diabetes kidney degree masters dialysis renal |
| Filling the void | Martin’s Aspergers syndrome affects his schooling, and seems set to affect his future, but through hard work and a continual determination to expand his horizons and succeed, Martin is now fulfilling a important role in a team | exdra learning disability work employment prejudice discriminate discrimination difficulty respect aspergers sport karate football olympics |
| I used to sit in this chair | For Ricky, blindness initially means frustration, pain and inactivity. With appropriate support and training, he overcomes these to return to work. | exdra disability work employment prejudice discriminate discrimination difficulty respect blind blindness sight diabetes it ict ecdl |
| Nothing but the baby in my tummy | When Paula comes to England from Portugal in search of a better life, nothing prepares her for a diagnosis of a life-threatening disease, or for the birth of a premature baby. With the help of the medical profession, and the interpreters, mother and baby have both survived. | nao neonatal birth baby premature intensive care special care portuguese interpreter hiv virus migrant disadvantaged poor benefits |
| 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. | cleft palate hare lip operation hospital child pain fear anger self-harm mother reconciliation communication identity |
| Surviving | 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. |
bi-polar manic depression psychosis anti-depressant grieving mental health suicide safety pregnancy abortion risk depression determination courage faith hope sister |
| Gran | Paula recalls memories of her beloved Gran, who died eighteen years ago, but who remains much missed. | Paula Bowers family memories grandparents love bereavement |
| Lost in translation | An interpreter’s presence at a coronary procedure helps avoid misunderstanding, build trust and ease the patient’s experience – and brings an unexpected benefit for her! | angioplasty patient russian interpreter stent angiogram ray lead apron trust reassurance error interpret translate translation smoking stop angina tonsillitis cintra intran hits tip esf eeda migrant immigrant |
| What would you do? | The boundaries of the interpreter’s role can be difficult to map, especially in small communities and difficult circumstances. This story tells of three such occasions that test an interpreter’s professionalism and humanity. | cintra intran hits tip esf eeda interpreter chinese ethical dilemma involvement hospital cancer ovarian breast glaucoma cataract eye pain medication professional migrant immigrant |
| So many words… | Words are important. Their meanings are important. These vary from culture to culture and depend on context. It is, therefore, crucial that interpreters render the most accurate meaning rather than a literal translation. | cintra intran hits tip esf eeda culture interpreter translation words violence bme family gender mental health understanding conflict assessment migrant immigrant |
| A change of heart | Interpreters may have to face and overcome social and cultural resistance to their role but, especially in health and social care, the effort is often worth it. | operation heart transplant surgery bme interpreter patient male female gender culture social norm reluctant ignore family recovery clinic cintra intran hits tip esf eeda migrant immigrant |
| The unlikely interpreter | People come to interpreting via many and varied routes with frustrations and rewards in almost equal measure. The satisfactions of the job encourage Randall to speculate about the future. | cintra intran hits tip esf eeda interpreter career help chinese american |
| Please help us… | A refugee’s pleas for aid go unanswered by the system. Without an interpreter they would not even have been understood. | refugee housing money shelter interpreter police hostel social services job mother daughter child kurd kurdistan turkey cintra intran hits tip esf eeda migrant immigrant |
| The world is full of remedies | Awareness of mental health issues must take account of the cultural religious and cultural concepts and understandings of different communities if effective care is to be delivered. | depression death loss culture islam imam mental health awareness car crash dream premonition cintra intran hits tip esf eeda migrant immigrant |
| The world through another person’s eyes | Efficient and cost-effective care with good concordance can only be achieved through a holistic understanding of the patient’s experiences, culture and health beliefs. | approach cultural sensitivity appropriate interpreter effective waste mental health depression prescription concordance counselling counsellor gp doctor cintra intran hits tip esf eeda migrant immigrant |
| The naked truth | A patient’s reticence in a consultation with a practitioner may pose an even greater barrier to effective treatment if their first language is not understood by the practitioner and an interpreter is not present. | ambiguous name error gender mistake cultural norm boundary embarrassment interpreter consultation ineffective undress physiotherapist cintra intran hits tip esf eeda migrant immigrant |
| The cost of interpreting | There are many media reports about the rising costs of providing interpreting services but, from an interpreter’s point of view, there are other reasons for rising costs. | cintra intran hits tip esf eeda interpreter expense costs time delays court waste |
| Yasmin | No matter how experienced and mature the interpreter an assignment may carry with it an emotional impact that is difficult to forsee. | child father interpreter boundaries loss grief death toys grandfather buried pakistan hospital ward childrens cintra intran hits tip esf eeda migrant immigrant |
| Thank you very much | No-one is prepared for Evie’s arrival, least of all the hospital. Eventually an incubator is found and gives Evie a good start in life – just in time for her heart operation. An overdose delays her recovery but she is now the apple of her parents’ eyes, and her grin belies her introduction to the world. | nao neonatal birth baby premature intensive care hospital pda surgery incubator overdose medication error apology |
| A fighter from the start | It took Jane more than 20 years to have a baby. Luke has clearly inherited his mother’s determination and, despite being born so early, he fights for life, and manages to survive operations and overdoses to become a robust little boy! | nao neonatal birth baby premature intensive care determination mrsa infection kidney failure heart surgery overdose medication error |
| Two for the price of one | Sharon is expecting twins, but she isn’t expecting them to be quite so early. 14 weeks in hospital and fantastic medical care have resulted in two healthy and happy little girls. | nao neonatal birth baby premature intensive care twins scan jaundice transfusion steroids |
| Full of beans… | Sam is initially told that she isn’t in labour, but baby Harry is born several hours later, several weeks early. As Sam is recovering from the shock of this birth, the consultant cautions her about the likelihood of further premature births… | nao neonatal birth baby premature intensive care consultant brain bleed |
| I am very lucky | Despite the shock of Orlando’s early birth, Michelle is expected to get on with things like breastfeeding – which can be incredibly difficult when you are recovering from a traumatic birth and attempting to feed a very premature baby. | nao neonatal birth baby premature intensive care breastfeeding trauma pain midwife milk |
| The third time… | Despite having had two premature babies, nobody paid attention when Clare expressed concerns that her third child might also be born early. Even after Kaitlyn was born at 30 weeks, Clare’s concerns continue to go unheard and it is some time before she even feels able to touch her tiny baby. | nao neonatal birth baby premature intensive care contractions sick touch incubator breastfeeding |
| When the clock stopped | Giving birth prematurely can be a traumatic experience. Carol was very ill when her second daughter was born at 28 weeks and it was several days before she was able to see and hold her child. The effects on her family and her older daughter were enormous. | nao neonatal birth baby early caesarean premature intensive care incubator small children family trauma shock pre-eclampsia clock ventilation delay jaundice ambulance feeding tube milk |
| 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. | hospice story stories father appropriate discuss review family |
| CPR | 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? | carer decision professional compassion understanding terminal |
| Getting it right | Getting it right when learning relies on getting it right when teaching as well. | lesson learn teach children tea mark assumption competence jenny gordon |
| 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. | counselling hitchin organisation free pct primary care funding voluntary value mental health humanity chris kell |
| Knitting | 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. | mastectomy unilateral reconstruction hospital visit mother son scar stoic language clinical harsh carer |
| Out of reach | A simple oversight leaves a post-operative patient unable to obtain pain relief or alert staff to her condition. | pain hysterectomy operation hospital ward bell drip epidural intubate nurse jenny gordon |
| Nil by mouth | Inconsistency confusion and lack of adherence to perioperative fasting guidelines make a patient’s journey a thirsty one… | guidelines standards thirst perioperative fasting nurse drink surgeon anaesthetist claire allen dignity |
| 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… | fibromyalgia pain chronic fatigue exhaustion dying doctors patient listen choice pro-active control involve partnership homeopathy stress nutrition chiropractic atlas vertebra fms complementary |
| If I had to go through it all again… | Sharon’s children are very young when she has her stroke and the only way she could express herself was through her paintings which she hid from the family so they wouldn’t know of her sadness and despair. Recognition of her talent led to increased confidence and the family remains close-knit and involved. | stroke aphasia mother young children baby painting depression isolation family confidence creativity parent connect learning communication sharon smith |
| A much stronger family | Catriona is a fit healthy active PE teacher when she has her stroke. With the support of her sons she continues to enjoy sport and outdoor activities – and the family is closer as a result. | stroke rehabilitation parent family sons support sport pe fitness connect catriona grant |
| From pillar to post | After the initial shock of his mum’s stroke 15 year-old Craig has found the right balance between caring for his mum and participating in her rehabilitation and living a more independent and organised life indulging his passion for sports. | stroke mother son family rehabilitation care communication responsibility sports benefits connect parent child confused support craig grant |
| There’s more to life… | Nanik’s stroke has been a blessing in disguise leaving him more time to spend with his children and family and the opportunity to be a much more involved parent. | stroke children father parent involve family participate benefits bme connect nanik pursani |
| See me now | Janet was the family ‘baker’ before a stroke left her in a wheelchair unable to bake. Over the years she takes up painting woodwork and all number of other activities before she is ready to meet challenge of baking a cake for the family once more. | stroke disability mobility aphasia choice strength painting baking woodwork rehabilitation connect parent janet jackson faily recovery individual cake dignity creativity |
| The best Dad in the world | Marion’s healthy active husband has a stroke in his early 40s leaving Marion to figure out how best to reconstruct the family so that everyone feels comfortable. | stroke emergency connect husband family children 40s cope strength disability rehabilitation involve participate benefits awareness disability marion harbidge parent |
| Getting to the bottom of things | Jean has rheumatoid arthritis. Her husband’s tender care extends to seeing to her personal needs – in marked contrast with the personal care she receives in hospital. | rheumatoid arthritis joints destruction replace respect surgery continence toilet bottom wiper dignity care carer trust disability hospital inter-professional communication jean bailey-dering |
| Leanna | Three-year-old Leanna has leukaemia and geographical constraints mean that her treatment involves a great deal of travel and separation for her and her family. How could readily available technologies have helped? | child cancer treatment travel family protocol standards separation support telemedicine technology web-cam ict nikki hale |
| Getting in … and getting out | When 8 year-old Scarlett appears in the kitchen with a branch sticking out of her arm her mum an NHS clinician has an opportunity to experience the system from the other side … causing her to consider the potential of new technology to ease entry and exit. | ict ehealth e-health accident emergency a&e wait system electronic prescribing prescription child mother branch technology delay |
| The nurse’s tale | A story of mis-communication. Could effective use of ICT have resulted in a different outcome? | ict ehealth e-health epilepsy hospital nurse dose missed records risk safety system electronic prescribing mike barton technology documentation records |
| 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. | doctor patient relationship expectations treatment response choice rights preferences effective communication paul stanton individual |
| Simple solutions | A simple solution allows an elderly woman with Parkinsons to regain her independence. | continence parkinsons elderly female urinal toilet independence chaotic smelly solution sue thomas dignity |
| She always liked to feel useful | Care for frail elderly people especially if there are continence issues can be careless or careful. Sue recalls the full life her mother led and acknowledges her need to feel useful. | diabetes amputation care elderly incontinence stroke careless mother daughter guilt catheter infection useful respect continence dignity sue brown |
| I wouldn’t have started from here | Travelling on trains can be difficult for a person with Parkinson’s. Sheila’s upbeat approach encourages a positive response that helps ease her journey through life. | parkinsons travel journey continence kindness professional staff toilet mobility train sheila harvey-george |
| Losing Mary | Roy’s wife Mary has dementia. Roy finds himself changing Mary and the bedclothes often several times a night …and then discovers that Mary has hidden the soiled pads in obscure places around the house. | dementia continence bed wet change clothes elderly carer coping devotion husband rcn |
| Where do you draw the line? | It can be difficult to balance respecting the privacy of patients with the need to offer appropriate care. Trust and good communication may help in deciding where to draw this delicate line. | dignity privacy elderly man habit day centre continence catheter gangrene trust choice dilemma communication openness balance |
| An open-door policy | When an elderly woman asks to have the toilet door left open Joanne reflects on issues of trust and wonders whether the way we reassure our children might inform the way we care for elderly people. | toilet elderly continence dignity anxious forgotten mobility dependent undignified trust reassurance joanne mangnall |
| Christmas with mum | Ian has found that planning and anticipation are the keys to happy and uneventful Christmases with a mum who has Parkinson’s Disease… and remembering that the look in her eyes can convey the joy that her facial expressions no longer show. | parkinsons drugs continence support carer son mother christmas anticipate plan prepare dignity expression eyes ian harvey-george |
| 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. | Dawn hillier midwife academic mother queen village africa Jamaica research husband dance father jitterbug love care parents development nurture children sons |
| A permanent holiday? | Graham is more than a full-time carer for his wife following her stroke. When a minor procedure leaves Dorothy in great pain it’s one more thing to cope with… | carer wife stroke nurse catheter continence hospital emergency pain unnecessary resources interprofessional carers’ resource graham williamson |
| My Michael | When Michael is due to be operated on for bowel cancer none of the medical staff listen when Michael and Joan tell them that an epidural will have no effect due to severe scarring. | carer husband bowel cancer scarring communication epidural listen mistake pain interprofessional carers’ resource joan spurden |
| Why am I not the expert? | Jenny has Parkinsons. Perhaps that is why nobody listened when she tried to persuade the medical profession that her husband’s mental illness stemmed from a frontal lobe injury as a child. And yet he receives excellent care for his bowel cancer… | carer husband mental health bowel cancer prison anger violence listen parkinsons frontal lobe injury treatment drugs equity expert ignore interprofessional carers’ resource jenny currie |
| Learning to care is part of the job | Alyson’s elderly father-in-law is given a poor prognosis around the same time Alyson starts working at the Carers’ Resource. She learns about her rights as a carer on the job but this doesn’t necessarily make it any easier… | carer rights father fall prognosis hospital incontinent elderly blind cancer support communication officialdom bureaucracy carers’ resource alyson hill |
| Just John’s wife | After her husband’s gliding accident Hazel and John have to come to terms with his paraplegia and her new role as a carer before they can build a new life. | carer allowance training preparation discharge recovery paraplegic wheelchair glider accident continence disability carers’ resource hazel goss accident |
| Family matters | Pat’s life and that of her husband is overturned when they assume the care of their grandchildren. Having fought the legal battles they now find themselves exhausted and financially overburdened. | carer daughter grandchildren grandparent elderly exhausted burden finance carers’ resource grandparents’ association |
| Please just listen | Jeana doesn’t want doctors to breach the confidentiality code – she just wants them to listen so that they might learn something about her son who suffers (along with the rest of the family) from a psychotic disorder. | carer confidentiality code psychosis violence listen parent mental health hell mother son family youth disorder support carers’ resource jeana hardcastle |
| A plea for dignity | Laura pleads with health professionals – and others – to bear in mind the enormous contribution our elderly people have made – and to treat them with the kindness and dignity they deserve. | carer rheumatoid arthritis elderly respect dignity kindness paralysis incontinence fear incapacity residential dependence stroke interprofessional carers’ resource |
| Just Jack | Liz cares for her grandson Jack who has been labelled with a variety of acronyms which entitle him to extra support at school – but Liz feels as though she has been cast adrift in a sea of uncertainty… | carer grandparents add autism psychiatrist child anger support carers’ resource label statement school uncertainty liz askew |
| A tribute to St Nicholas’ Hospice | Marilyn Kramer pays tribute to the hospice where her son Ian died peacefully and with dignity. | hospice terminal cancer free hiv aids dignity death palliative care dying bereavement tribute ian kramer comfort st nicholas home carer family gratitude marilyn kramer |
| A brighter world waiting | Following her stroke Rizia takes up meditation then gardening and discovers a brighter future beyond stroke. | stroke language aphasia ethnic bme bengali self-care ltc long term cultural condition blood pressure asian female gardening recovery rehabilitation meditation diversity uplifting future rizia choudhury chronic migrant immigrant |
| Fast appropriate responses | Frustration at the lack of action and the indifference of some staff in an NHS hospital leads a young stroke victim to request his own discharge after two days so that he can pursue a private MRI scan and treatment via his GP. | stroke quality timely not prompt male young scan treatment care poor resources professional nurse interprofessional commission warning andrew |
| A vision of the future | Timely appropriate treatment of a stroke patient shows one way to a better future. | stroke shopping recover prompt timely care emergency thrombolytic scan department ossie newell response ambulance training |
| Imagine…. | A stroke leaves Derek’s intelligent vivacious active wife unable to feed or look after herself unable to communicate or even acknowledge Derek. He imagines a world where such a thing would not happen… | stroke services carer wife education prevent emergency cost drugs treatment risk thrombolysis scan derek whitehead |
| One size doesn’t fit everyone | People with aphasia benefit from individual speech therapy which isn’t always easy to come by. | stroke speech therapy aphasia tailored connect recovery personal communicate rehabilitation individual respect unique sue mike fisher |
| New beginnings | Emmanuel worked as an engineer in the Nigerian Dept of Trade and Industry before his stroke left him with aphasia. However his love of gardening leads him to transform an unused piece of ground into a garden that is a haven of peace in the centre of London. | stroke aphasia garden rehabilitation nigeria recovery ethnic bme black diversity african male engineer phd communication emmanuel godis voice migrant immigrant |
| All the colours of the rainbow | Jane is a civil service lawyer before her stroke leaves her with aphasia. Her love of music comes into its own as she now leads music appreciation groups in which the music is as varied and as vibrant as the colours of the rainbow. | stroke aphasia music appreciation group feelings emotions fantastic experiences rehabilitation lawyer jane stokes rainbow |
| Helping others helps me | Ken decides to put his background in training to good effect after his stroke: he now trains professionals working with people who have aphasia. | stroke aphasia recovery wife training professional conversation rehabilitation interprofessional teach ken bradford communication |
| Hold on to your hat! | For two years following his stroke Alan didn’t know that he had aphasia. After that he is determined to recover as much of his life as possible and works with a variety of organisations to help others suffering from aphasia ending up at Connect. | stroke aphasia disability conversation connect moving on employ charity communication information interprofessional alan hewitt recovery progress |
| The first time | Sonia’s stroke left her feeling imprisoned unable to venture from her house because she could not communicate. Her first bus journey proved to be the turning point and she realises that she can do anything she puts her mind to with the help of a few thoughtful strategies. | stroke aphasia recovery confidence connect rehabilitation disability communication strategies bus life courage transformation sonia parsons |
| Duck | After a stroke in her early 20s Debbie is left with aphasia – and only recognises one word. 20 years later she runs conversation groups and has gained immeasurably in confidence. | stroke aphasia disability confidence conversation group lead connect progress happy debbie lee communication |
| What I’ve learned from my dad | Anna’s first lessons in self-care came from her father who, suffering from arthritis, had to learn how to look after himself. | self-care wipp arthritis cope ltc long-term chronic condition anna lynall |
| Working together towards self-care | Despite at inward groan at having to take on responsibility for self-care on top of his normal job Nick reaps the benefits and sees participants become healthier happier and better able to deal with stress. | stress self-care holistic approach confidence job satisfaction wipp workplace team colleagues depression interprofessional team communication nick roberts |
| A painful story | A bad accident results in a rare and painful condition which isn’t discovered for two years. Uncertainty and lack of information lead to depression that only lifts when NHS Direct directs Pat to a self-care course. | self-care accident reflex sympathetic dystrophy pain nhs direct depression information lack wipp ltc chronic long-term condition pat luther |
| Pushing water uphill | A paramedic sees lots of time being lost and wasted by unnecessary emergency calls from people who don’t know how to look after themselves – and tries to make things better through the WiPP self-care programme. | ambulance self-care emergency wipp waste efficiency quality out-of-hours paramedic 999 pharmacy choice eleanor thomas |
| For the love of Lee | Choice of career is often determined by early life events. The excellent care her boyfriend received when he was dying of cancer determined Yvonne to put something back into the system by helping other people to stay healthy. | cancer chemotherapy boyfriend choice dignity health promotion self-care career death grief loss emotion commitment bereavement wipp yvonne mcglinchy |
| Getting the balance right | End-of-life care is both challenging and inspiring. When a palliative care nurse recognises that patients with heart failure deserve the same kind of care received by patients with cancer or HIV/AIDs he sets out to ‘even things up’ in order to ensure a peaceful and dignified death for these patients. | end-of-life care dying hospice heart failure palliative dignity dignified death psychological support service redesign pathway nurse interprofessional mike connolly |
| Primary and community care: working at the hub | Improving patient care across all cardiac services is a tall order. In primary care the things that have made a difference are: good (and constant!) communication offering people something they need sharing lessons and best practice and always doing what you say you will do. | primary care gms contract training development trust understanding sharing learning communication jane riley spreading best practice lessons learned heart interprofessional |
| A moving story | An experienced nurse’s eyes were opened by hearing discovery interviews with patients which led to service improvements benefiting the NHS its staff and most importantly the patients who are now better informed and in receipt of much higher quality care. | emergency care discovery interviews cardiac network hospital transfer patient information communication benefits staff service improvement jane stubbs |
| A common language? | The chief officer of the NHS Heart Improvement Programme wants to make a difference and with a little help from his friends he does so. | heart improvement programme collaboration collaborate cardiac network management gurus difference success learning interprofessional team adrian pennington |
| A tap on the shoulder | Following heart bypass surgery one patient decides to get involved – and reaps the benefits. | patient involve heart bypass surgery robot benefit participation alan keys |
| Jimmy’s story | A patient’s fall in hospital goes unobserved and unrecorded and leads to a severe spinal injury. Would earlier and more appropriate intervention have led to a different outcome? | patient safety psychiatric hospital depression care unobserved fall transfer ambulance learning disability spinal injury missing notes mri scan mental health inequalities ethics professional equity interprofessional records documentation negligence |
| 60 Seconds | Despite the obstacles in his path Iain retains his sense of humour in this wry look at how the immediate physical environment can affect the quality and safety of care. | wheelchair stomach toilet hospital ward safety infection upset dignity respect embarrassment disability awareness access essential facilities continence environment |
| Bicycle clips | A bicycle accident results in a broken arm – and an important lesson learned! | accident crash bicycle learn child public health broken arm x-ray hospital doctor ambulance lesson reflect |
| A world of difference | How can we respect and care appropriately and sensitively for people from very different cultures – and still remain within the law? How can we educate people about human rights? These are just some of the questions that arise when a woman from Somalia goes into labour and nobody suspects that she has been circumcised. | circumcision cultural difference labour childbirth somali ethnic bme female african continence urinary infection diversity culture prison communication carolyn basak migrant immigrant |
| Imagine a world | The International Collaboration of Orthopaedic Nursing offers nurses all over the world an opportunity to share experiences and make a real difference to patients whether they are from ‘fancy clinics’ in the USA or UK or from a small three-ward clinic in Malta. | orthopaedic nursing passion vision patients collaboration dreams malta share collaborate network future sharing learning rcn bernie cottam |
| Wildfire | The Clinical Microsystems approach to quality improvement is spreading rapidly around the world because it really does make a huge difference to patients staff – and service improvement managers! | clinical microsystems service improvement frontline teams patients interprofessional success laura hibbs |
| Could it have been avoided? | An apparently routine operation becomes anything but routine when the bleeding doesn’t stop… | hand washing day unit surgery emergency calcium deposit bleeding bandage routine operation mistakes safety risk high blood pressure hypertension |
| Unheard voices | 12 years ago community healthcare was based on a hierarchal system which certainly did not acknowledge that patients had anything useful to say. Recent initiatives have made it possible for staff – and patients – to develop as individuals and as teams. | hierarchy segregation community listen patients staff develop individual team essence of care enlightened leadership community care experts |
| The fall and rise of Shirley Gage | A bad fall leaves Shirley Gage lonely despondent and lacking in confidence. Joining the Healthy Communities Collaborative helps her to regain her confidence through helping others. | confidence fall healthy communities patient involvement collaborative microsystem shirley gage |
| My perfect baby | Even when clinical care is excellent patients – and their families – may be left feeling that there is a lack of consideration for the needs of the whole person. | burns pressure garment scar revision skin graft young baby holistic patient-centred care needs gill mathews |
| Kath’s story | Kath is having difficulty managing at home particularly with respect to the bewildering collection of pills she has to take. With the help of the Intermediate Care Team Kath gains the confidence she needs to remain at home – pills and all! | medication remain home patient choice confidence empowerment elderly kath concordance microsystem interprofessional primary care microsystem confused |
| I just want to feel normal | Bill and his wife were struggling with his long term conditions. Since being invited to participate more fully in the management of his heart and chest problems he and his wife have regained their confidence and are able to live a more normal life. | involve patient struggle long term condition manage working together team primary care interprofessional microsystem home |
| The cost of care | Working as a team and including patients as part of that team can actually reduce the cost of care and help patients to retain independence. | cost implications working patients partnership team primary care microsystems interprofessional long term conditions |
| Our new Christmas tree | The patient journey is only part of the larger journey of life…when Steve Jones has a heart attack just before Christmas he faces a dilemma: will his hospitalisation interfere with his wife’s 50th birthday party which has been planned for months? | patient people heart attack hospital nervous angiogram stent journey dilemma christmas steve jones anxiety family |
| Why collaborate? | A brief history of the Heart Improvement Programme celebrates the real improvements in services to patients that are the result of working collaboratively and building networks of doctors nurses and patients. | chd collaborate network service improvement team teamwork network patient experience difference interprofessional cath lovatt heart |
| Caring for staff as well as patients | A nurse in charge of a coronary care unit is pleased to be able to improve services for patients and her staff through the introduction of a specialist cardiac transfer service. | cardiac transfer service coronary care improve heart services staff patients ambulance interprofessional communication denise kent |
| 18 weeks…here we go again | Perhaps the 18-week target is more likely to become a reality if there is a genuine understanding of what it means to patients. | 18 week target heart improvement fiona mackie |
| Lost in time | Following admission to A&E ‘John’ waits for 20 months for an angiogram and referral to a specialist hospital while his health deteriorates. | 18 week wait target patient heart attack waiting angiogram referral communication |
| A part of the team | Handovers can be critical times for patients; – it’s particularly important for ambulance crews to respect and include carers as part of the healthcare team as they are often the only ones who know the whole story. | carers team patient voice ambulance story respectrparamedic transfer handover interprofessional communication monica clarke |
| Nobody told me | When Monica’s husband John has a gastrostomy she is unexpectedly faced with having to deal with a number of different specialists for different parts of the pump … simply in order to feed him. | central control system integrate silos boundaries gastrostomy different specialists feed carer interprofessional communication monica clarke |
| Whose risk is it anyway? | How do NHS organisations assess risk? When Monica has an operation on her wrist no account is taken of her caring responsibilities…or the impact that the operation will have on either her or her husband. | risk assessment wrist operation organisation carer making do interprofessional monica clarke governance |
| Monica Clarke Introduction | Monica has learned a great deal about caring during the 11 years she cared for her husband following his stroke. | carer stroke role models social services governance interprofessional education monica clarke |
| Serving the patient’s needs | Ian had to take one day a month off work in order to collect his various prescriptions from different places. Although before a dedicated pharmacy was eventually installed. He pleads with Trust boards to review systems to ensure that they meet patients’ needs. | review systems patient hiv aids governance needs processes pharmacy accrual accounting negative impact interprofessional commissioning ian kramer |
| Another pair of eyes | Ian has his blood taken regularly by the same nurse who never gloves up UNTIL one day a senior nurse asks to observe. | listening patients gloves hiv aids blood observation gloving up infection control audit training ian kramer |
| Measured innovation: working together | Ian faces a daily cocktail of drugs that often make him nauseous. Together with his consultant and pharmacist they work out a regime that is more acceptable to Ian and thus encourages concordance with treatment. | drugs hiv aids nausea interrupted treatment concordance working together difference interprofessional partnership involve ian kramer respect communication |
| Ian Kramer Introduction | As a person with HIV and a bi-polar disorder Ian Kramer has plenty of experience not only of the NHS but also of healthcare systems in other countries; he is sure they could learn from each other. | hiv mental health bi-polar activist clinical governance quality improve engage patient healthcare systems strengths weaknesses ian kramer |
| Left out of the circle | How can a person with aphasia represent their own interests and participate in making important decisions when they are not invited to use any of their communication methods? | case conference communication well-being lonely isolated stroke understanding communication methods participation respect involve interprofessional emma allen aphasia |
| Communication… …just simple communication | Emma makes a plea for the use of simple communication methods to help people like Fred understand and participate in making decisions. | pals participation communication stroke understanding words decisions left out exclusion involvement support interprofessional emma allen aphasia |
| Introduction: Fred’s story | Emma works with a stroke survivors’ project. She tells the story of Fred who dies in hospital lonely and confused having suffered from aphasia since his stroke in 1997. | aphasia communication stroke services conversation involvement involve participation dignity interprofessional emma allen |
| A wonderful experiment | David who qualified as a doctor before the NHS existed praises the NHS acknowledging it as ‘a very fine system for organising healthcare services. | system of care nhs wonderful experiment fine system david clark different |
| Don’t you do anything for heart failure? | David finds that little is done for patients with heart failure although plenty of help is available for people with coronary thrombosis. | heart failure cardiac rehabilitation coronary thrombosis quality of life david clark elderly miserable |
| David Clark Introduction | 83-year-old David Clark is a retired psychiatrist who now suffers from heart failure. | heart failure active doctor psychiatrist david clark elderly |
| Giving someone a second chance | Making the decision to donate Daryl’s organs to help others was an easy decision which has helped Joe and Grace find the courage to come to terms with his death. | organ donation dignity helping others second chance respect desa bereavement |
| Daryl Desa Introduction | Daryl Desa was a strong healthy active 16 year-old until he died suddenly of a stroke. | stroke organ donation bereavement parents young teenager desa |
| Now wash your hands please! | Healthcare professionals visiting Charles’ home fail to respect his repeated requests to wash their hands before touching Mary. | hand-washing caring at home respect elderly infection control charles bruce alzheimers |
| It’s not hospital policy! | Charles describes problems that arise during respite care when the patients’ needs are not attended to. | caring alzheimers communication elderly breakdown respite hospital policy charles bruce dignity |
| Charles Bruce Introduction | Charles Bruce is a medical professional with a keen interest in improving the quality of care, who also cares for an elderly woman with Alzheimers. | carer clinical governance holistic patient care quality improvement charles bruce |
| Who cares? | How can carers and health professionals work more effectively together? Alison is challenged by nurses who are indignant that she should be interfering with ’their’ patient. The consultant, however, acknowledges Alison as part of the care team. | carer partnership haemophilia factor 9 consultant respect alison ryan nurse |
| A more deserving case | Why should one chronic, life-threatening condition take precedence over another? While Alison and her husband await a liver transplant, they become aware of the superior conditions for relatives of patients awaiting heart transplants. | liver transplant heart transplant hierarchy of conditions relatives carer targets equity alison ryan |
| Alison Ryan Introduction | Alison Ryan wears two hats: as a carer for her husband, who suffers from complex chronic conditions, and as the CEO of the Princess Royal Trust for Carers. | haemophilia b paralysis hepatitis c bladder cancer diabetes immuno-suppressed princess royal trust for carers carer alison ryan shief executive |