This book is a much welcomed addition to similar texts debating the challenges for the people working in health and social care, supporting people who develop long-term conditions (LTCs). It differs by taking a thought-provoking approach to exploring the reality of the lives of people who are experiencing often multiple conditions and the challenges faced in providing effective care.
The editors provide a concise introduction drawing attention to the growing number of people in the United Kingdom (UK) living with LTCs. This could be transferred to other developed countries as global health statistics indicate similar trends. Attention is drawn to the changing landscape of care provision in the UK as services are influenced by government policy; embracing the concepts of person-centred care and inter-professional working with a focus on empowering individuals. The reality often evidences a disparity between the people in receipt of care, professionals and organisations. This is poignantly illustrated throughout the text powerfully positioning the voice of people using services and the impact on their lives. Divided into three sections, the book explores these differing perspectives from a diverse range of people (people using services, practitioners, managers and researchers). Each section includes empirical research to contextualise the perceptions explored, cleverly drawing the reader to reflect on theory and practice, as well as engagingly revealing the experiences and views of people with LTCs.
The first section focusing on receiving care achieves its aim of raising awareness of how people view their own situations: living with a LTC, dealing with their health concerns and trying to fit into processes. Sir Terry Pratchett (a recognised and prolific UK author) contributes first to this section and draws the reader into understanding the significance of listening to people who are in receipt of care services. He identifies his own circumstance of a diagnosis of early dementia and eloquently debates how society will cope with an ageing population, ‘running right into the dementia firing range’ (Chapter 1, p. 8). This section helps the reader to recognise the reality of living with a LTC and how labels direct people to services, with conditions being the gatekeepers as opposed to access to treatment and support of symptoms, i.e. pain and exhaustion. A clear illustration of the tensions within UK care systems are identified, drawing attention to insufficiencies in psychological support in predominantly medical models and pathways of care. People are highlighted as falling between the gaps of disability and illness, with stigma attached to unexplained conditions. This section concludes with Sara MacKian (Chapter 5) who focuses on the world people live in, when living with myalgic encephalomyelitis (ME), rather than the construction of ME. This author offers an interesting insight into her own experience of ME and the exploration of therapeutic landscapes offering a deeper understanding of how some individuals cope.
Working with people with LTCs is explored in the second section building upon the themes identified in the previous chapters. A diverse range of approaches are utilised to reveal current issues in relation to maintaining a person-centred approach whilst satisfying organisational demands. Rachel Purtell and Andy Gibson (Chapter 6) provide a lively debate surrounding the issues in relation to service users meaningfully contributing to research. The service-user experience is clearly audible in the chapters of this section as the significance of multi-disciplinary working and integrated health and social care systems are highlighted to re-orient bio-medical models of care to include a focus on the psycho-social consequences of living with a LTC.
The final section discusses the delivery of health and social care for people with LTCs. Alistair Hewison (Chapter 11) locates the reader to the policy context in a concise way, emphasising the complexity of supporting people in the management of their LTCs and the multiple systems they may come into contact with. The challenge is to keep track of the vast number of documents that continue to be publicised, as there is no central point of reference. This section returns to the fiscal management of a system aiming to support people with LTCs, to debate some significant factors in achieving its success. The voluntary sector, risk management and the presence of carers are explored, pointing at how potential gaps in systems could be addressed. Readers are drawn to thinking about how effective or restrictive systems and processes are. The concluding chapter by Stephen Pattison (written from the perspective of an ethicist) enticingly debates whether people can be helped to negotiate or prepare for life with a LTC.
This book will be a useful resource to people who use services, students studying in health and social care and researchers, as it gives an opportunity to gain in-depth understanding of everyday life with a LTC, the implications for health-care provision and future research.
