Stories from the frontline of the NHS

Healthcare aims to be patient-centred but a large gap remains between the fine words and the reality. Care often feels designed for the convenience of the organisations that deliver it, and not enough around patients and their families, or even around the frontline staff who provide it. Why does this happen? What does it feel like? What can be done about it? This book stimulates reflection on these questions by listening closely to those at the frontline. It provides accounts from patients, carers and healthcare professionals who are patients about what it’s like when services get it right, and wrong, from birth up to the end of life. Quite simply, we want to draw upon the power of storytelling – which is increasingly valued as a tool for learning – to help policymakers and practitioners to understand how to deliver better care. We also hope to enlighten the general reader about how they might go about navigating “the system” while it remains imperfect. There is a growing literature of first-person accounts from patients and from healthcare professionals. This book differs by providing a collection of narratives of experiences of the NHS in England to paint a rich and varied picture. Alongside these narratives we provide some international context, and an overview of the history of moves towards a more patient-centred approach to care. We present the theory and practice of storytelling in the context of healthcare. We also seek to help the reader to draw out the practical learning from the individual accounts.

Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

Chapter 7 considers non-participation and exclusions as well as reservation, consternation and rejections around genomic medicine in our research and in the public sphere more generally. We investigate the particular social and cultural contexts in which disengagement and resistance are generated. Exploring negative views and experiences or simply a lack of response to genomic medicine, we consider when these kinds of personalised medicine are ‘not relevant to us’ and why some people just do not have the capacity or resource to engage with them. Rejecting or refusing opportunities to engage with genomic medicine also results from the awareness of competing priorities such as health equality or preventive healthcare as well as a commitment to other forms of care. Not every patient can or wants to craft their own treatment pathways, or looks to the future with a sense of agency and control, and we reflect on what it means to opt out, be excluded or feel left behind by these kinds of research and care. We also discuss the ways in which different agencies and actors strive to tackle disengagement by reaching out to different communities to appeal to their sense of responsibility towards contributing to the prospects of better care for individuals and community now and in the future. We argue that these practices present an important counterpoint to the dominant, inclusive vision of P4 medicine, particularly with regard to personalisation and participation.

in Personalised cancer medicine
Open Access (free)
Naomi Chambers and Jeremy Taylor

the end of life. Quite simply, we want to draw on the power of storytelling – increasingly valued as a tool for learning – to help practitioners understand how to deliver better care. There is a growing literature of first-person accounts both from patients and from healthcare professionals. This book differs by providing a collection of narratives, from a variety of viewpoints and stages in life, to paint a rich and varied picture. Alongside these narratives we provide some context: an overview of the history, theory and evidential underpinnings

in Organising care around patients
Open Access (free)
Religion and spirituality in environmental direct action
Bronislaw Szerszynski and Emma Tomalin

movement and felt that it was an area needing attention. One of her primary interests was making people more aware of camp illnesses, including visitors to protest sites, and in encouraging people to take better care of themselves. She also drew attention to the stresses of a life of protest and the fact that people often drink too much in order to block out the pain of evictions. She was training in reiki, learning about different herbal remedies (‘as most people are shy of Babylon drugs’) and attempting to introduce health as a serious issue into the camps where she

in Changing anarchism
Open Access (free)
Exploring personalised cancer medicine
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

sense of agency and control, and we reflect on what it means to opt out, be excluded or feel left behind by these kinds of research and care. We also discuss the ways in which different agencies and actors strive to tackle disengagement by reaching out to different communities to appeal to their sense of responsibility towards contributing to the prospects of better care for individuals and the community now and in the future. We argue that these practices present an important counterpoint to the dominant, inclusive vision of P4 medicine, particularly with regard to

in Personalised cancer medicine
Open Access (free)
Naomi Chambers and Jeremy Taylor

you are, how much effort you put in. I think of that as better care, whereas obviously I assume that if you are a senior, almost a consultant anaesthetist, then you have had your skill checked many a time. What matters to me most is how they make you feel and how well looked after you are. So in the end I didn't progress at all, I'd been in labour for nearly forty hours. And I was only 4cm and you need to be 10. So I ended up going for a caesarean

in Organising care around patients
Naomi Chambers and Jeremy Taylor

? These stories have several examples of people “battling” the system to get better care for their loved ones. What are the wider implications of a system that needs to be “battled”? What part can health and social care agencies play in managing family tensions and differences during serious illness and at the end of life? These stories contain a number of examples of really good care and professional practice. What makes them good

in Organising care around patients
Open Access (free)
David M. Turner and Daniel Blackie

Winn, ‘a drawer or coal-pit worker … in delicate health’, those offered relief by Poor Law officials in Scotland were sometimes given a choice as to whether they were institutionalised. The medical officer who attended Winn in the late 1850s offered him a place in a poorhouse, where it was thought the mineworker could be better cared for than in his current lodgings. Winn, however, refused the offer and was instead provided for by the Parish of Old Monkland outside the poorhouse 104 DISABILITY IN THE INDUSTRIAL REVOLUTION in private accommodation.60 Yet

in Disability in the Industrial Revolution
David M. Turner and Daniel Blackie

risk of death or disablement. Other methods were also needed to improve safety. Echoing the argument of English pitmen who called for substantial increases in smart money during the great strike of 1844, lawmakers came to see the threat of compensation as a way of incentivising 186 DISABILITY IN THE INDUSTRIAL REVOLUTION employers to take better care of their workers’ health and safety.98 This change in attitude was reflected in the provisions of the Coal Mines Act of 1872. This consolidated mining regulations into a single law and indicates the trajectory of

in Disability in the Industrial Revolution
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

growing bioeconomy aligns with a vision of health services that deliver better care to more patients via ‘benefit sharing’ (Hayden 2007 ), for example, where companies offer medical innovations to the health service that provide the data at a preferential rate. Yet these benefits remain opaque and promissory, sometimes bewildering to patients and participants already caught up in ‘surveillance capitalism’ where rights to privacy are routinely signed away as part of ordinary consumption (Zuboff 2019 ), and where publicly funded health systems are struggling to pay for

in Personalised cancer medicine