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.

This handbook is written for patients and members of the public who want to understand more about the approaches, methods and language used by health-services researchers. Patient and public involvement (PPI) in research is now a requirement of most major health-research programmes, and this book is designed to equip these individuals with the knowledge and skills necessary for meaningful participation. Edited by award-winning mental-health researchers, the book has been produced in partnership with mental-health-service users and carers with experience of research involvement. It includes personal reflections from these individuals alongside detailed information on quantitative, qualitative and health-economics research methods, and comprehensively covers all the basics needed for large-scale health research projects: systematic reviews; research design and analysis using both qualitative and quantitative approaches; health economics; research ethics; impact and dissemination. This book was developed during a five-year research programme funded by the UK’s National Institute for Health Research (NIHR) called Enhancing the Quality of User Involved Care Planning in Mental Health Services (EQUIP). The handbook clearly outlines research practices, and gives an insight into how public and patient representatives can be involved in them and shape decisions. Each chapter ends with a reflective exercise, and there are also some suggested sources of additional reading. People who get involved in health research as experts from experience now have a textbook to support their research involvement journey.

Andrew C. Grundy

A Research Handbook for Patient and Public Involvement Researchers Chapter 1: Patient and Public Involvement (PPI) and the research process Andrew C Grundy Chapter overview This chapter defines and introduces the different stages of the research process: from identifying a problem, to reviewing the literature; then developing a research question; designing a study; obtaining funding and ethical approval; recruiting participants; collecting and analysing data; and reporting and disseminating findings. This chapter will outline how users of health services, their

in A research handbook for patient and public involvement researchers
Building High-tech Castles in the Air?
Anisa Jabeen Nasir Jafar

support such a system. Instead of a top-down approach to this, we need to look from the bottom up. What is the field hospital capable of doing? How does documentation fit in with patient flow? What is the essential information and what is superfluous information? Who needs access to which aspects of the patient documentation? Once we have established these aspects, we must start with the humble pen and paper and watch the process carefully, identifying points at which technology would be acceptable

Journal of Humanitarian Affairs
Open Access (free)
Planned Obsolescence of Medical Humanitarian Missions: An Interview with Tony Redmond, Professor and Practitioner of International Emergency Medicine and Co-founder of HCRI and UK-Med

and more regulated, more and more accountable, and in a humanitarian setting you hear people saying, ‘I just want to go and treat patients in need’ – OK, but if you have to be accountable in this country, you have to be accountable everywhere, full stop. And I think that’s a problem. You might just think it’s semantics, but I don’t think you should ever alter the standard of care that you deliver; I think you should always give the highest standard of care

Journal of Humanitarian Affairs
Open Access (free)
Interpreting Violence on Healthcare in the Early Stage of the South Sudanese Civil War
Xavier Crombé and Joanna Kuper

had treated many wounded patients, most of them civilians, including women and children. Not only were civilians the prime targets of violence, the authors of the report asserted, but ‘healthcare itself’ had been ‘under attack’: in August 2011, only a few weeks after the independence ceremony, an MSF-run health facility in Pieri had been looted and burnt down; over the year that followed, armed groups had again ransacked, damaged or destroyed three more health structures

Journal of Humanitarian Affairs
Arjun Claire

more medically oriented humanitarian action today, témoignage has continued to be ceaselessly invoked as a central ethos of the organisation. At its origin a purely moral act of expressing indignation at instances of inhumanity, today, at least the public face of it increasingly resembles a tired vestige of a bygone era, reduced to patient stories and staff testimonies, sprinkled with a dash of medical data. A mix of internal and external factors have led to the

Journal of Humanitarian Affairs
Hakim Khaldi

identifying their state of health, their needs and the resources to which they had access locally. For the medical facilities, it meant determining their needs for drugs, medical equipment, water and power, as well as their reception and patient management capacity. Two members of MSF’s international personnel – including the author of this article – went to Aleppo in August 2012. We had already developed a relationship of trust with UOSSM’s medical

Journal of Humanitarian Affairs
A Focus on Community Engagement
Frédéric Le Marcis, Luisa Enria, Sharon Abramowitz, Almudena-Mari Saez, and Sylvain Landry B. Faye

Guinean army was seen as ineffective in protecting its own people against the incursion of rebels from neighbouring countries ( McGovern, 2017 ). In July 2014, Sylvain Landry B. Faye witnessed the population of Guinea’s Tékoulo sub-prefecture engaged in a series of provocative actions towards Ebola-response teams that could be characterised as violent. Local communities concealed patients suspected of having Ebola, refused to allow family members to be

Journal of Humanitarian Affairs
Open Access (free)
Digital Bodies, Data and Gifts
Kristin Bergtora Sandvik

monitoring unit will be the ability to process and store data from several patients and send regular or emergency report as well as notification to the physician to notify about patients’ physical condition.’ And the data which is taken from the human body will be sent to smartphone or tab through the wireless communication system. This information can also help doctors to decide which patient needs emergency service as the device can provide real

Journal of Humanitarian Affairs