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Why is innovation and radical change in end of life care needed now?

Author: Heather Richardson and Antonia Bunnin
03 October 2017

Heather Richardson, joint chief executive of St Christopher's Hospice, and Antonia Bunnin, Hospice UK's director of hospice support and development, write about why radical change is needed in end of life care. This is the first in a series of articles that will explore approaches to radical change and share learning from Innovation Unit's Better Endings work in south east London. The authors are keen to hear from others who are working in new and experimental ways to bring about transformational change.

Seven years ago, Charles Leadbeater and Jake Garber authored “Dying for Change”[1], a publication that called for radical change to improve the experience of people who were dying in the UK. It made a strong case for transformation for a variety of reasons – to better meet people’s preferences at the end of life, in anticipation of increasing demand for palliative care, and as a means of using limited resources in a more efficient and effective way.

The book was received with great interest and has been widely read. Indeed a national commission into the future of hospice care was established in its wake to explore and describe how its recommendations might be implemented by the hospice sector[2]. There is evidence that many hospices in the UK have taken the recommendations of the Commission seriously and some changes have happened as a result[3].

However, the innovation around end of life that Leadbeater and Garber call for, that would focus on new models of care, delivered by a different set of players and focus on societal change and system-wide improvement alongside better local services is largely absent from the picture of end of life care today.

As a result health and social care systems are creaking in the light of growing levels of demand for end of life care, the increasing complexity of needs with which individuals present, and the chronicity of their conditions that demands help over sustained periods of time. The consequence of this situation is one of unacceptable inequities related to access and effectiveness of care, and sometimes deplorable experiences of help and support at a time when people most need it.

For individuals, these inadequacies result in late diagnosis of advanced disease, poor communication, failures in symptom control and uncoordinated care[4],[5]. Even where policy makers, commissioners and providers have recognised the need to improve the quality of provision and have made efforts to do so, their efforts and impact are often inadequate as a result of limited resources available to them. In particular new monies and elements of the traditional palliative care workforce are in scarce supply.

For all these reasons we believe that the time is right for catalysing and scaling innovations in end of life care. We need new models of care that address changing needs, preferences and expectations; that can be delivered by a different workforce and which can achieve higher quality across the board without recourse to significant new funds.

Most importantly these innovations must reflect the priorities of those who require these services; they must also draw on the capabilities and capacity of a wider range of individuals, groups and organisations with a stake in high quality end of life care.  To achieve this, we need to encourage more imaginative, experimental and participatory approaches to engaging with communities and designing such innovations.

This aspiration is not pie in the sky. There is early evidence of innovation in end of life care in the UK being led by skilled service designers,[6] academic institutions,[7] and hospices[8]. Funders are interested too in supporting the upscale of innovations proven to be effective[9]. Evidence also exists of an interest on the part of the public to become involved in end of life. A recent public survey of UK adults[10] found majorities of people both disagreeing that dying is only a matter for professional health and social care services, and agreeing that they be willing to offer practical help and support other people who are dying.

The challenge now is to galvanise this interest, identify relevant methodologies and approaches, support new efforts to innovate, and share learning so that others can replicate and build on them. Innovation in end of life care cannot afford to be fleeting in nature or undertaken only by a few players. It must be widespread and sustained.

We will explore how this is achieved as part of a series of future articles in ehospice. For more information visit  Innovation Unit and Better Endings

To know more in the meantime, or to tell us about a radical change initiative, contact Antonia Bunnin or Heather Richardson

[1] 2010. Leadbeater and Garber. Dying for Change. Demos. London

[2] 2013. Commission into the Future of Hospice Care. Help the Hospices (now Hospice UK).

[5] 2015 Dying without Dignity.  Parliamentary and Health Service Ombudsman.  London.

[6] Better Endings, Innovation Unit

[7] Helix Centre, Imperial College, London.

[8] Listen, Learn, Adapt. St Nicholas Hospice Care, Bury St Edmunds, Suffolk.

[9] For example, innovation foundation Nesta

[10] 2017 Dying Matters survey, Dying Matters.

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