Gemma Hughes
Demand for improved health and social care services in England is increasing, invariably attributed to an aging population. Public expenditure is tightening as austerity continues to bite. The tension between increasing demand and shrinking funding is reconciled in the compelling narrative of reduced hospital admissions and personalised care found in the policy of integrated care. Policies to integrate health and social care have recurred throughout the history of the NHS, expressing high hopes in terms of cost savings, reductions in hospital admissions and improvements in patients’ experiences. The current health policy framework, the NHS Five Year Forward View, introduced new models of integrated care to overcome traditional divides between services in 2014. Integrated care: organisations, partnerships and systems, the Health and Social Care Committee’s report of June 2018 notes not just the slow pace of implementation of these new models, but historical slow progress towards integrated care. I ask how this policy endures, despite an apparent lack of success. I propose an interpretation of policy as narrative to explain how integrated care works, not as an intervention to resolve practical problems, but as a story, a sense-making process.
‘Integrated care’ is generally used to describe ways of bringing health and other services together, streamlining and coordinating care for people with complex needs who require support from different services, typically – though not exclusively – older people with multiple long-term conditions. Integrated care aims to simultaneously improve individual experiences of care, and achieve health system goals. Despite limited evidence that organisational changes can result in integrated patient care, the current focus is on the establishment of new organisational forms and alliances. Accountable Care Organisations, Integrated Care Partnerships and Integrated Care Systems are being pursued to create integrated organisations or systems that will be funded, and held accountable, for services for a designated population. Although the organising principle of integrated care is the patient perspective, these organisational changes are not necessarily meaningful for patients, or social care service-users. Therefore, National Voices were asked to create a narrative to explain what an individual should experience when care is integrated. They provide the following definition:
‘I can plan my care with people who work together to understand me and my carer(s), allow me control, and bring together services to achieve the outcomes important to me.’ A Narrative for Person-centred Co-ordinated Care, 2013
Integrated care is ubiquitous in health and social care policy in the UK, enshrined in the Health and Social Care Act 2012 and the Care Act 2014, and the subject of a national pioneer programme. There has been cross-party consensus on the benefits of integrated care. Analysis by the Nuffield Trust showed that the three major political parties each endorsed integrated care in their general election manifestos in 2015; integrated care has featured throughout the current Conservative government and the previous Coalition government, and in opposition, the Labour Party established a commission on Whole Person Care in 2014. Although offering a policy solution to contemporary concerns ranging from improving personal experiences of care to saving money, integrated care is not a new policy. Neither are the concerns that it seeks to address. Concerns about containing costs and managing increasing demands from an aging population have recurred throughout the history of the NHS, prompting continual organisational change and reform in attempts to make the service more efficient, responsive, more tightly managed, or, more like a market.(1)
If we consider policies as stories that governments tell, we can interpret policies not purely as rational solutions to technical problems, but as narratives about the better world that governments want to create. Policies identify and solve troubles; they are stories of optimism and of progress. This interpretative approach to policy analysis prompts questions about the underlying arguments, choices and context of policy. Such an approach assumes that a policy is about more than that which is immediately apparent in the text, rather, the policy contains an ‘architecture of meaning’ reflecting wider social issues that can be shown through systematic investigation of aspects of the policy.(2) The narrative of the policy of integrated care is that health and social care can be brought together for everyone’s benefit. The problems identified are those related to fragmentation, complexity of need, and growth of demand. A resolution is offered that will benefit individuals by providing more personalised and streamlined care, benefit organisations by increasing efficiencies and help the tax-paying public and the government by saving money.
‘It has been said that next to hunger and thirst our most basic human need is for story-telling’ – Khalil Gibran
Stories are a fundamental human response to the world around us. We tell stories to make sense of events. As we narrate, we place events in a sequence, connecting incidents in a logical order. The study of how narratives are organised reveal narrative patterns, a ‘grammar of experience’.(3) Articulating experiences through the structure of narrative can create meaning out of a string of events that may otherwise feel chaotic or meaningless. We also construct our identities through narrative, placing ourselves in relation to events, and to other people. Narrative is used in health research to both produce, and to interpret, evidence. Narrative research can illuminate the cultural context of healthcare, from the stories that people tell and how they make sense of their conditions. Just as illness narratives can be interpreted to understand meaning of and meaning in illness, narrative analysis can be used to elicit meaning, and to synthesise meaning across bodies of evidence. Treating policies as stories, rather than as strategies or instructions, elicits new meanings.
The story of the NHS is a heroic one, slaying the Beveridge giant of disease.(4) NHS 70th birthday celebrations reflected both warm feelings towards this national institution, and the perennial strain of perpetual funding concerns. Social care fails to capture the imagination in the same way, fewer people experience social care or understand how it is organised and funded differently to the NHS. The health and social care divide stems from the NHS Act and the National Assistance Act of 1948.(5) Universal health care, largely free at point of access, was established by the first piece of legislation and social care by the second, through needs and means-testing. This division of funding responsibility results in an unfair, and arguably inexplicable, impact on individuals whereby ‘the type of aliment you get will determine the financial support you get to cope with its effects’ as the Barker Commission noted in 2014. For example, support for someone living with dementia largely falls under social care, whereas cancer care is provided by the NHS. With ever-shrinking budgets, the provision of care for people with both health and social care needs becomes increasingly contested, raising difficult questions as to who should pay for what care. People needing both health and social care are left struggling to make sense of these divisions.
The narrative of integrated care creates a sequence of meaning that bridges the divide between health and social care. The Five Year Forward View contains a fully-formed narrative structure.(6) In summary, the NHS needs to change to address the widening gaps of health and wellbeing, care and quality, and funding and efficiency. Orientation to time and place is provided by comparing the present-day NHS to that of the past, and with other health systems. The complicating action, or trouble, is the funding challenge, with an element of crisis introduced by reference to scandals of poor care. An evaluative view is provided by a vision of the future where patients are empowered to be in control, and divides between services dissolved. The resolution of the story is a new future containing new models of care and new relationships with patients. A coda closes with a picture of what this will mean for a specific group of patients. This narrative structure takes us through the problems and the solutions, bringing clarity to a complex state of affairs, certainty to what should be done, and optimism that these problems can be resolved.
The effect of the narrative of integrated care is to reconcile past and current tensions and to offer hope for the future. The divisions between health and social care will be mended in this vision of new organisational models. The narrative of integrated care makes sense of the current divisions between health and social care, by acknowledging the fragmentation that people experience, and offering, through coordination, an end to these troubles. Not only will better coordinated care be provided by these new models, but in providing this better care, they will manage their allocated resources more efficiently. The troubles of funding will be resolved. Analysing the policy of integrated care as a narrative performing a sense-making function explains its persisting popularity despite limited evidence of effectiveness. The narrative of integrated care works to make sense of the perplexing contradictions between health and social care, and to offer hope that omnipresent funding concerns will be resolved.
References:
Klein, R. (2010). The new politics of the NHS : From creation to reinvention (6th ed.). Oxford: Radcliffe Press.
Yanow, D. (1996) How does a policy mean? : interpreting policy and organizational actions. Washington, D.C.: Georgetown University Press
Hymes, D. (2004). Ethnography, linguistics, narrative inequality : Toward an understanding of voice (Critical perspectives on literacy and education). London ; Bristol, PA: Taylor & Francis.
Timmins, N. (1995) The five giants : a biography of the welfare state. & updated ed. edn. London: HarperCollins, 2001.
Glasby, J. (2012) Understanding health and social care. Understanding welfare 2nd edn. Bristol: Policy.
Riessman, C. (2008). Narrative methods for the human sciences. Thousand Oaks, California; London: Sage Publications
Gemma Hughes is a Health Services Researcher in the Medical Sciences Division of the Nuffield Department of Primary Care Medical Sciences. Her work focuses on critically analysing the relationships between health and social care policy, practice and lived experience. She has recently completed an in-depth ethnographic case study of integrated health and social care for my doctoral research. She is currently researching people’s experiences of caring technology, exploring how and in what circumstances digital technologies can assist lay (informal) carers as part of the SCALS (Studies in Co-creating Assisted Living Solutions) programme.