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Naomi Chambers and Jeremy Taylor

The chapter is prefaced by a brief summary of the policy background. People with long-term conditions account for a very high proportion of all health service usage. Yet those services often struggle to provide what is needed. Accurate diagnosis, medicines and treatments matter, but so does an approach that is sensitive to your preferences and your experience of living with your condition; continuity of care and the joining up of different services; being empowered and supported to live a fulfilling life. There are five stories in this chapter. Katie has had type 1 diabetes for around twenty-five years with gradually increasing painful and distressing complications. Tim is in his 30s and has epilepsy which developed during his teenage years. He talks of the stigma attached to the condition. Joanna has various health problems, including Ehlers-Danlos syndrome, which is a rare condition, and which her son also suffers from. Jasmin has lupus which took a long time to be correctly diagnosed. Venetia lives with chronic fatigue syndrome which has significantly affected her quality of life as a young adult. We invite readers to assess how these narratives compare with the four characteristics of patient-centred care that we outlined in Chapter 1. As with the other chapters, we pose questions arising from these stories, to simulate thinking and reflection. We have divided these into questions of immediate or operational concern, and those which are more strategic or policy-related.

in Organising care around patients
Naomi Chambers and Jeremy Taylor

The chapter is prefaced by a brief summary of the policy background. Mental health problems are widespread, at times disabling, yet often hidden. In the UK, nearly half of adults think that they have had a diagnosable mental health condition at some point in their life. Since the 1960s, punitive and stigmatising attitudes have largely given way in most countries to a more community-based, human rights-informed approach. Nevertheless, mental health services in the UK have not had the priority given to physical health. Recent national policy is aimed at boosting provision. This chapter contains five stories. Audrey is a healthcare professional. Hers is a story fragment, describing struggles to get access to the right services for her family member. Stanley arrived in the UK from Zimbabwe and had his first breakdown and diagnosis of bipolar disorder in 1997. Alan has also been living with bipolar disorder for over twenty years and now works as a patient ambassador. Nathan is a teenager with various mental health issues. Finally, Lucy is a retired hospital psychiatrist with lived experience of a severe and enduring mental illness. We invite readers to assess how these narratives compare with the four characteristics of patient-centred care outlined in Chapter 1. As with the other chapters, we pose questions arising from these stories, to simulate thinking and reflection. We have divided these into questions of immediate or operational concern, and those which are more strategic or policy-related.

in Organising care around patients
Naomi Chambers and Jeremy Taylor

The chapter is prefaced by a brief summary of the policy background. Poor health in later life is not inevitable. We live in an era in which society is getting older, and healthy ageing is a common goal across many countries. Nevertheless, as a whole we are more reliant on health and care services as we age. The majority of people over 85 are living with three or more long-term conditions. The NHS often struggles to respond to the needs of people with dementia. Ageism is still widely prevalent, and can have an adverse effect on access to services. There are five stories in this chapter. Robert is in his 80s and has a heart condition and also stomach and joint problems. Rabiya cares for her mum who has dementia and doesn’t speak English well. Rabiya relates multiple experiences of discrimination. James looked after his mother for ten years after her diagnosis of dementia. Sheila cares for her husband who has dementia. She describes the battle to get a diagnosis and care. Kauri’s dad died of pancreatic cancer. She narrates many episodes of excellent care and support given by the hospital and the GP. We invite readers to assess how these narratives compare with the four characteristics of patient-centred care outlined in Chapter 1. As with the other chapters, we pose questions arising from these stories, to simulate thinking and reflection. We have divided these into questions of immediate or operational concern, and those which are more strategic or policy-related.

in Organising care around patients
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.

Open Access (free)
Naomi Chambers and Jeremy Taylor

This chapter contains two stories about pregnancy and childbirth. The chapter is prefaced by a brief summary of the policy background. This includes a rehearsal of some of the enduring challenges around providing person centred care in pregnancy, during childbirth and in the postnatal care period. Persistent and troubling variation in the clinical quality of care is noted, as evidenced by recent public inquiries into maternity services. The first story is told by Cathy, a healthcare professional who became pregnant and then had a rough time, including acquiring sepsis, when she gave birth. In the second story we hear from James about becoming a new dad. We come across James again when he tells of his experiences of caring for his mother with dementia in chapter 7. We invite readers to assess how these narratives compare with the four characteristics of patient-centred care outlined in Chapter 1. As with the other chapters, we pose questions arising from these stories, to simulate thinking and reflection. We have divided these into questions of immediate or operational concern, and those which are more strategic or policy-related.

in Organising care around patients
Race and nation in twenty-first-century Britain

Nationalism has reasserted itself today as the political force of our times, remaking European politics wherever one looks. Britain is no exception, and in the midst of Brexit, it has even become a vanguard of nationalism's confident return to the mainstream. Brexit, in the course of generating a historically unique standard of sociopolitical uncertainty and constitutional intrigue, tore apart the two-party compact that had defined the parameters of political contestation for much of twentieth-century Britain. This book offers a wide-ranging picture of the different theoretical accounts relevant to addressing nationalism. It briefly repudiates the increasingly common attempts to read contemporary politics through the lens of populism. The book explores the assertion of 'muscular liberalism' and civic nationalism. It examines more traditional, conservative appeals to racialised notions of blood, territory, purity and tradition as a means of reclaiming the nation. The book also examines how neoliberalism, through its recourse to discourses of meritocracy, entrepreneurial self and individual will, alongside its exaltation of a 'points-system' approach to the ills of immigration, engineers its own unique rendition of the nationalist crisis. There are a number of important themes through which the process of liberal nationalism can be documented - what Arun Kundnani captured, simply and concisely, as the entrenchment of 'values racism'. These include the 'faux-feminist' demonisation of Muslims.

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Absences and futures
Sivamohan Valluvan

As the nationalist clamour multiplies through each ideological fold, the sheer reach of its cognitive, emotional and symbolic grip can seem suffocating. This chapter presents a reflection on the various, often innocuous cultural features of everyday British life and popular culture that readily lend themselves to husbanding an alternative to the nationalist political wager. It focuses on what is commonly called 'multiculture' and contends that this everyday multiculture, in its very banality, remains a widespread but underutilised cultural energy ripe for political conversion by a movement sufficiently alive to its possibilities. The effect of sealing in the social media era carries a perhaps historically unique capacity to stir the urgency with which the perceived demise of the nation is experienced. The chapter shows a peppy urban enthusiasm for Jeremy Corbyn's Labour, an urban context that is importantly also where the lived realities of multiculture and migration are most readily rooted.

in The clamour of nationalism
Sivamohan Valluvan

Nationalism sources the entire political spectrum when assembling its ideological language, a spectrum within which conservatism is only one significant strand. It might seem surprising to disentangle neoliberalism from conservatism, given that many of those who champion neoliberal resolutions also seem to hold basic conservative talking points. This chapter synoptically unpacks those sites of British life, intellectual and cultural, where politically potent nostalgias for the nation are most prominently mainstreamed. It maps how the various modalities, through which a distinctively conservative political vision is articulated, culminate in the thickly textured and nostalgically recalled veneration of provincial Englishness, Empire and whiteness more broadly. The organising myth central to the entire edifice of a common British past is the presumed continuity of a homogeneous whiteness. The centrality of the Second World War to contemporary British history becomes constitutive of a broader brand of nationalist politics that Anthony Barnett has identified as Churchillism.

in The clamour of nationalism
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Mapping the nation
Sivamohan Valluvan

Many arguments have been advanced in an attempt to develop an analytic schema that can account for this nationalist consolidation, a consolidation that consigns both the social democratic and liberal left to the ignobly hapless position of bystander, a mere observer of history dramatically unfolding. This chapter adds to that body of writing, advancing an argument that trades on two claims the first, diagnostic, the second, political. Economic factors are certainly integral to the emergence of this new nationalism, given that they undeniably cultivate certain nationalist desires. Labour must recognise that any attempt to recycle nationalism has become a fool's errand. It is imperative to understand that neoliberalism is not only an economic or legislative programme but that it is also fundamentally a cultural and moral programme. The chapter also presents an overview of the key concepts discussed in this book.

in The clamour of nationalism
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The left and welfare state nationalism
Sivamohan Valluvan

This chapter addresses a select few angles that have become particularly misleading, with an emphasis on the 'frantic circulation of a pseudo-class discourse' that lends to nationalism a left validity that it cannot obtain elsewhere. That the left has struggled to steer clear of the nationalist project, or at least some of its key tropes and temptations, is documented at length throughout this chapter. It is, however, with the recurring inability of many on the left to resolutely read how nationalism relates to recent modalities of capitalist governance, both Thatcherite and Blairite, that is considered first. The multiple dimensions of nationalism are reduced to a working-class politics, an insurrection via the ballot box. Anti-immigration becomes a normalised sentiment of working-class populations at the same time as it is read as anti-capitalist politics.

in The clamour of nationalism