Home Alone Combating isolation with older housebound people Helen McCarthy Gillian Thomas First published in 2004 © Demos Some rights reserved – see copyright licence for details ISBN 1 84180 128 3 Typeset by Land & Unwin,Bugbrooke Printed by Hendy Banks,London For further information and subscription details please contact: Demos Magdalen House 136 Tooley Street London SE1 2TU telephone: 0845 458 5949 email: [email protected] web: www.demos.co.uk About Demos Demos is a greenhouse for new ideas which can improve the quality of our lives.As an independent think tank,we aim to create an open resource of knowledge and learning that operates beyond traditional party politics. We connect researchers,thinkers and practitioners to an international network of people changing politics.Our ideas regularly influence government policy,but we also work with companies, NGOs, colleges and professional bodies. 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Users are welcome to download,save,perform or distribute this work electronically or in any other format, including in foreign language translation without written permission subject to the conditions set out in the Demos open access licence which you can read at the back of this publication. Please read and consider the full licence.The following are some of the conditions imposed by the licence: ● Demos and the author(s) are credited; ● The Demos website address (www.demos.co.uk) is published together with a copy of this policy statement in a prominent position; ● The text is not altered and is used in full (the use of extracts under existing fair usage rights is not affected by this condition); ● The work is not resold; ● A copy of the work or link to its use online is sent to the address below for our archive. Copyright Department Demos Magdalen House 136 Tooley Street London SE1 2TU United Kingdom [email protected] You are welcome to ask for permission to use this work for purposes other than those covered by the Demos open access licence. Demos gratefully acknowledges the work of Lawrence Lessig and Creative Commons which inspired our approach to copyright.The Demos circulation licence is adapted from the ‘attribution/no derivatives/non- commercial’version of the Creative Commons licence. To find out more about Creative Commons licences go to www.creativecommons.org Contents Acknowledgements 7 Executive Summary 8 1. Introduction 13 2. Being Home Alone 24 3. From isolation to personalisation 37 4. Principles for personalisation 46 5. Conclusions and recommendations 57 Notes 66 Acknowledgements Many people contributed to making this publication possible. Mark Lever, Jim Donovan and the rest of the Senior Executive Team at WRVS provided crucial support and input throughout the lifetime of the project.We are grateful to all WRVS staffand volunteers who gave up their time to participate in the research. Thanks also to Jonathan McShane and Basil Towers at Christow. At Demos, thanks to Sophia Parker and Matthew Horne for helping to get the project off to a flying start,and to Tom Bentley for providing guidance and feedback throughout.Eddie Gibb and Bobby Webster saw the text safely through to production and publication. Naturally,all remaining errors or omissions are our own. Helen McCarthy and Gillian Thomas June 2004 Demos 7 Executive summary 1. The risk of loneliness is increasing. Altered family structures, geographical mobility and longevity are all contributing factors to greater levels of loneliness in hidden segments of society. Knowing how to combat loneliness is not straightforward. Many of these risk factors are actually associated with aspects of social progress that we cherish such as greater personal choice and freedom. Yet, as a society, we should not tolerate loneliness for the minority simply as the price we pay for the social advances enjoyed by the majority. 2. Government has taken a great number of measures to protect those most at risk of loneliness and isolation: the elderly and housebound. The 2001 National Service Framework for Older People outlined new principles, which aim to ensure that services fit round the individual rather than around professional provider roles.1 The 1999 Royal Commission on Long Term Care recommended a whole host of measures, including more domiciliary services, to help promote older people’s independence.2 3. This appears to be the right strategy,yet the evidence suggests it is not doing enough to prevent loneliness and isolation in old age: 32 people die alone and unnoticed in their own homes each year; one in six older people living alone rate themselves 8 Demos Executive Summary as ‘often or always lonely’and this number is increasing.Demos has calculated that unless significant changes occur, by 2021 nearly 2.2 million of over-65s will be socially isolated.3 So just what is going wrong? 4. The answer lies in the failure of government to grasp that the key to reducing loneliness lies not with the state, or even voluntary organisations and community groups, but with lonely people themselves. This realisation shifts the entire framework in which older people’s services are offered. From this new perspective, the responsibility of providers is not simply to deliver services that meet people’s physical or material needs,as assessed by professionals.Instead,it is about involving and supporting service users in ‘co-producing’ their own outcomes, so as to overcome loneliness in ways that they define for themselves. Unleashing ‘co-production’ through increasing the participation of older people will ultimately move the system towards greater personalisation in all aspects ofservice delivery. 5. The failure of policy to grasp fully this prospect explains why the current approach to combating isolation among older housebound people isn’t working as well as it could or should. Services such as day and homecare focus too much on defining needs in narrowly technocratic terms,neglecting more promising pathways towards prevention and participation as a result.For many older housebound people, this approach undermines their sense of identity and self-esteem, with the only tolerable option being to reject services and offers ofassistance entirely. 6. In fact, the services that are most likely fully to engage older housebound people are also the services that are most likely to suffer from budget squeeze at a local level. For example, the Women’s Royal Voluntary Service (WRVS) runs a ‘Home from Hospital’ service, which brings volunteers and older people together so that they can work out the best strategies for Demos 9 Home Alone independent living after a spell in hospital. Yet because this service depends on local authority contracts it operates for a very limited time span, and in a limited geographical area. Other services such as book clubs and befriending schemes are very successful at motivating older housebound people, but they are often regarded as ‘nice to have’, rather than essential from a statutory perspective. 7. Much procurement and commissioning of care and other related services is driven by the desire for ‘best value’. Yet, in reality, using this criterion can lead to reinforced isolation. For example,many local authorities have moved from delivering a hot meal to isolated housebound people once a day to delivering them several frozen meals once a fortnight. This potentially delivers more choice to the user and achieves greater efficiency, but it reduces the precious social contact associated with daily delivery. 8. The ‘business’ case for preventing or reducing social isolation should be obvious. The medical bill alone includes treatment arising from falls and fractures,depression and poor immunity to disease.Ofcourse,some ofthis is caused by inevitable frailty in older age.But too often these health complaints are the direct result of isolated people living unsupported and demotivating lives. ‘Delayed discharge’ costs the NHS an estimated £170 million and 1.7 million lost bed days each year. The National Audit Office recently estimated that around 4,100 older patients on any given day are fit enough to leave hospital, but have nowhere appropriate to go.4 9. Furthermore, the social costs of loneliness also loom large. Isolated people who lack opportunities to contribute to community life represent a huge resource of untapped potential. Friends and relatives are affected, too, and worry about how to ask for help,or how to cope. 10 Demos