Debates in Personalisation

Needham, Catherine, Glasby, Jon

• Publisher: Policy Press
• Year: 2014
• ISBN:
  9781447313441
• Edition: 1
• Topic: Medicine
• Subtopic: Health Policy

This unique book brings together, for the first time, advocates and critics of the personalisation agenda in English social care services to debate key issues relating to personalisation. Perspectives from service users, practitioners, academics and policy commentators come together to give an account of the practicalities and controversies associated with the implementation of personalised approaches. The conclusion examines how to make sense of the divergent accounts presented, asking if there is a value-based approach to person-centred care that all sides share. Written in a lively and accessible way, practitioners, students, policy makers and academics in health and social care, social work, public policy and social policy will appreciate the interplay of rival arguments and the way that ambiguities in the care debate play out as policy ideas take programmatic form.

Part One

Introduction and overview

ONE

Introduction: debating personalisation

Catherine Needham and Jon Glasby

For anyone working in or receiving adult social care services, the personalisation agenda is of fundamental importance. Different people may love it or loathe it – may be fully supportive, completely opposed and/or just confused – but the shifts in policy and practice that personalisation might imply are potentially far-reaching and certainly hard to ignore. Of all the changes that have taken place in adult social care (and increasingly in other sectors too), it is personalisation that stands out as one of the key themes of the past decade, and quite possibly as one of the key agendas of the next ten years.

Under New Labour, the government’s Putting People First concordat pledged to achieve a ‘system-wide transformation’ in which people using services have ‘maximum choice, control and power over the support services they receive’ (DH, 2007, pp 2-3) and in which personal budgets are available ’for everyone eligible for publicly funded adult social care support other than in circumstances where people require emergency access to provision’. Acknowledging the role of organisations such as In Control (see below) and a number of cutting-edge voluntary organisations and local authorities, the government recognised the importance of local and national leadership to help support and build on ‘the first stage in a unique attempt to co-produce, co-develop and co-evaluate a major public service reform’ (DH, 2007, p 5). Similar sentiments have also been expressed by the coalition government in A vision for adult social care (DH, 2010a, p 15):

Our vision starts with securing the best outcomes for people. People, not service providers or systems, should hold the choice and control about their care. Personal budgets and direct payments are a powerful way to give people control. Care is a uniquely personal service. It supports people at their most vulnerable, and often covers the most intimate and private aspects of their lives. With choice and control, people’s dignity and freedom is protected and their quality of life is enhanced. Our vision is to make sure everyone can get the personalised support they deserve.

Building on this, one of seven key principles of A vision for adult social care was ‘personalisation’, described as an approach in which:

Individuals not institutions take control of their care. Personal budgets, preferably as direct payments, are provided to all eligible people. Information about care and support is available for all local people, regardless of whether or not they fund their own care. (DH, 2010a, p 8)

As we explain in Chapter Two of this book, the concept of personalisation is broadly (and often poorly) defined, but two key mechanisms include:

• Direct payments (cash payments to disabled people in lieu of directly provided services). Pioneered by disabled people themselves, direct payments emerged informally in different localities in the mid-1980s and were formally introduced under 1996 legislation after sustained campaigning by disabled people’s organisations.

• Personal budgets (developed initially by a social enterprise known as In Control and subsequently incorporated into official policy at pace and scale). In one sense, a personal budget is nothing more complicated than trying to be up front with people from day one about how much money is available to spend on meeting their needs, and then allowing them a say over how the money is spent (with one option being a direct payment, but with other options as well for how the money is managed).

From the beginning, personalisation has been the subject of significant debate and controversy. Approaching the issues from different standpoints and perspectives, different commentators have seen personalisation either as a radical revolution in which services are transformed and power shifted dramatically in favour of people using services or an attempt to roll back the boundaries of the welfare state, undermine public sector services and pass off state responsibilities onto people already in need. As the implications of personalisation have started to become clearer over time, key questions have included the following:

• Is personalisation transferring risk and responsibility from the state to the individual – or is it promoting more of a partnership of equals in which risk is shared in a positive way by the individual and the system together?

• Is personalisation connecting people more fully with their family, friends and communities – or is it closing down collective spaces such as day centres and isolating people in their homes?

• Can personalisation work equally well for all types of people using services – and in particular for older people?

• Will personalisation free people up to choose what sort of relationship they want with their friends and families – or will it place an unacceptable burden on unpaid women carers?

• How can the positive approaches to risk inherent in personalisation be reconciled with safeguarding?

• Will personalisation deepen inequalities between people using social care services – or more fully tailor responses to individual need so that outcomes are more equal?

• Is personalisation de-professionalising social workers and depressing terms and conditions for the broader social care workforce – or will it lead to a return to the values of community social work and to better relationships between care workers and their employers?

• Is personalisation adding to bureaucracy and legal ambiguity – or is it simplifying people’s entitlement to resources?

• Is personalisation a concept that could revolutionise other areas of the welfare state – or is it being stretched into other sectors (such as health) on the basis of a weak evidence base?

Depending on where you sit, personalisation is either the best thing since sliced bread or the end of the welfare state as we know it – and it’s often hard to find much common ground between these two opposing stances. Only half in jest has all this been dubbed a ‘Marmite’ issue – with personalisation rapidly emerging as something that people either love or hate.

Against this background, this edited collection brings together advocates and critics of personalisation in English social care services, including people with experience of using services, people working in services, people helping to reform services and people with experience of researching and teaching about the issues at stake. Whereas in the past people broadly favourable to and critical of personalisation have published separately, leading to accusations that they have side-lined or misrepresented alternative viewpoints, this book brings together a range of different voices and perspectives in one place. The advantage of such an approach is that it gives an overview of the diversity of opinion and experience that exists around the personalisation agenda – and reviewing the different contributions will hopefully enable readers (whether students, practitioners, managers, policymakers or academics) to reflect on the different stances taken, key areas of contention and possible areas of synergy. In the process, the differences of opinion expressed by different authors may also go a long way to explaining why personalisation is experienced in such different ways by different people in different parts of the country.

Of course, a downside of this approach is that someone new to the topic might find the different contributions a little disorientating at first reading. In one sense, there is not really any way round this – personalisation and its implementation is such a contentious issue that engaging with the various arguments at stake is almost inevitably disorientating. Almost by definition, different chapters are also written by people from different backgrounds, so the tone and approach is often different (ranging from reporting detailed research findings to very personal experiences and reflections). To do what we can to help, we have tried to make sure that all contributors write in a clear and accessible (if often challenging) style and that we present a range of different views so that readers can ultimately make up their own minds. We have also tried to reflect on our own in-built assumptions and beliefs in the process of editing the book, including one editor closely associated with In Control and widely seen as an advocate of direct payments and personalisation (see, for example, Glasby and Littlechild, 2009; Glasby et al, 2009; Duffy et al, 2010; Glasby, 2012a) and another with a track record for more critical and ambivalent analysis of personalisation and the way in which such terms are used in different ways by different stakeholders (see, for example, Needham, 2010a, 2011a, 2011b, 2013).

To provide as much structure as possible to these different views, the book is divided into five sections, focusing on:

• An introduction to/overview of the personalisation agenda (Chapters One to Three)

• Some of the key challenges of personalisation (Chapters Four to Eight)

• Frontline perspectives from service users, families, providers and staff (Chapters Nine to Twelve)

• The spread to healthcare (Chapters Thirteen to Sixteen)

• Overall responses to the issues raised (Chapters Seventeen to Nineteen)

We have not been able to cover in-depth all the issues associated with personalisation – for example we touch only briefly on the role of user-led organisations, and do not deal directly with reablement as part of personalised care services – but we hope to have included a diverse range of issues and perspectives that readers will find stimulating. The Care Act 2014 was also in the process of becoming law as the book was finalised, although the themes raised in the subsequent chapters remain pertinent despite the shifts in the precise legal context.

After this introduction, Chapter Two (by Catherine Needham and Jon Glasby) takes stock of the recent history of personalised social care services in England, reviewing the background of direct payments and person-centred approaches, considering how the Putting People First agenda is being implemented, highlighting the key controversies and considering the spread of personalisation to other areas of the welfare state. In Chapter Three, Sarah Carr summarises and critiques the broader policy context, with a particular focus on two key policies or initiatives (Putting People First and Think Local, Act Personal). Despite the rhetoric of personalisation becoming firmly established across government (and indeed surviving a change of government), tensions in broader policy can mean that implementation of such rhetoric into everyday practice can be challenging (to say the least).

In Chapter Four, Lucy Series focuses on the resource allocation systems (or RASs) that local authorities use to allocate indicative personal budgets – a crucial mechanism that was designed to allocate equal resources to equal levels of need but that can easily lead to significant problems (and indeed legal challenges) if not carefully designed and implemented. Particularly worrying is a lack of transparency over how such mechanisms work in practice (which feels ironic, given that the aim of personal budgets is to provide greater transparency and clarity of entitlement). After this, Chapter Five (by Jill Manthorpe) explores the relationship between personalisation and safeguarding. While these should be two sides of the same coin, they have often been seen as separate issues (particularly in the early days of personalisation), and further work has been needed to bring these two agendas closer together at both policy and practice level. In Chapter Six, Liz Lloyd asks if personalisation can work for older people, reviewing the common claim that personalised approaches as currently implemented may work better for people of working age. With older people making up the majority of social care users and in an ageing society, this is a serious charge, and one that cannot be resolved without exploring the broader social and cultural context of older people’s services more generally.

In Chapter Seven, Wendy Mitchell, Jenni Brooks and Caroline Glendinning observe that carers have received relatively little attention to date in debates about personalisation, asking ‘where do carers fit?’ Presenting findings from the Carers and Personalisation study (2011-13), they highlight difficulties for workers in overcoming separate legal frameworks and emphasise the importance of interdependence between ‘users’ and ‘carers.’ In Chapter Eight, Melanie Henwood explores the experience of self-funders – an often forgotten group of people who might be expected to have similar levels of choice and control over their support as envisaged by the personalisation agenda. In practice, this chapter argues that most self-funders do not find that their purchasing power necessarily leads to better outcomes, and there are more substantial barriers to greater independence in the current system than personal budgets alone might help to overcome.

Moving on to consider ‘frontline perspectives’ (Part Three), Christine Bond (Chapter Nine) reflects on her personal experiences of personal budgets and managing a direct payment. After some of the previous policy and research-based chapters, this is a very practical account of the benefits of personal budgets, some of the practical issues that need thinking through and what needs to be in place for personal budgets to work well. A crucial final line (p xx) acknowledges that ‘this way of working is still bringing new challenges and everyone has to think differently for things to work well’ – a succinct summary of many of the key issues perhaps. In Chapter Ten, Sian Lockwood describes the potential contribution of micro-enterprise to personalised care and support. Although many commentators acknowledge the need for new and innovative forms of service provision, it is still relatively rare to see such practical examples of provider innovation more widely debated. Describing her experience of working in this area as ‘inspiring yet frustrating’ (p xx), Sian illustrates the many barriers that can get in the way of new approaches and emphasises the hard work needed to make personalisation a reality.

In Chapter Eleven, UNISON’s Helga Pile explores the neglect of workforce issues in many debates around personalisation. If we are not careful, the chapter warns, we could see a series of damaging changes to the social care workforce where both user and worker are ultimately disempowered. In Chapter Twelve, Victoria Hart offers a perspective as a frontline social worker, describing the commitment of many workers to more personalised approaches but also a strong sense that the personalisation agenda has ‘over-promised and under-delivered’ (p 112). Throughout there is an equal measure of passion about the potential of personalisation coupled with a deep sense of disillusionment and betrayal over the way in which policy has been implemented in practice.

Section Four moves on to consider the spread of personalisation from adult social care to the NHS, with a particular focus on personal health budgets. In Chapter Thirteen, Colin Royle talks movingly about his dad’s dementia and about the way in which a personal health budget helped to restore the lives of the family as a whole. This is followed in Chapter Fourteen (by Julien Forder and Karen Jones) by more formal research findings from the national evaluation of personal health budgets. Despite a number of limitations, the study identifies some potential positives and provides support for the national roll-out of personal health budgets now taking place. In contrast, Chapter Fifteen (by Colin Slasberg) takes a different line, asking if personal health budgets pose a threat to the traditional values and ethos of the health service. If we are not careful, he argues, we could draw the wrong lessons from the evidence base, benefitting a small number of people at the expense of the majority and undermining the commitment of the NHS to notions of fairness and universalism. Vidhya Alakeson (Chapter Sixteen) reviews some of the challenges that personal health budgets entail, but also argues that this way of working can support greater self-management for people with long-term conditions and that we need to maintain the current political consensus around the importance of more personalised forms of healthcare.

Section Five then starts to explore a series of more cross-cutting themes, with Peter Beresford (Chapter Seventeen) and Simon Duffy (Chapter Eighteen) presenting potentially different versions of recent events and future possibilities. Both authors, in different ways, are key figures in the development of adult social care – and reading these two accounts side by side provides a series of fascinating insights into the issues at stake. Finally, Chapter Nineteen (by Jon Glasby and Catherine Needham) reflects on some of the key themes from the overall book, exploring the extent to which there are similarities and differences in the various contributions and asking whether there is scope for any degree of consensus in future. While some positive ways forward may be possible, it is difficult to avoid the impression that personalisation remains very much a‘Marmite issue’ – deep down, readers will probably either love it or hate it.

TWO

Taking stock of personalisation

Catherine Needham and Jon Glasby

There has been growing interest in narrative approaches to policy that focus on how policies are framed as stories in order to build coalitions of support (Hajer, 1995; Yanow, 1996, 2000; Fischer, 2003). Such interpretive approaches to policy have also drawn attention to the ways in which academics themselves offer narrative interpretations of those policies: ‘stories about stories’ (Yanow, 1996). This layering of interpretation is very evident in relation to the recent changes to English social care services that are commonly referred to as personalisation. Personalisation has been variously described as a script, a rhetorical device and a set of stories that are told about care services and the people who use and work with them (Leadbeater, 2004; Needham, 2010b, 2011a; Ferguson, 2012). What is increasingly evident is that there are also lots of stories that academics and other stakeholders tell about personalisation: its genesis; its implementation; its impact; its future. These are not stories in the sense of being fictional or trivial. Rather they are competing narratives, which explain the past, present and future of personalisation in different ways.

The policy context

Perhaps the least contested element of personalisation is its policy locus. In a public policy context – as opposed to retail or technology where the term is also used – personalisation is usually applied to a set of policy changes to adult social care services in England from the mid-2000s. The term itself is commonly attributed to ...