Introduction

This chapter focuses on the idea and practice of person-centred support. This is the central focus of this book and indeed of contemporary social care policy. There is little agreement or clarity over terminology in this field, which is one which abounds with jargon. The dominant term used to describe proposed new developments in and beyond social care, as we have indicated, is ‘personalisation’. It originates in a government Green Paper of 2005 (DH, 2005). Yet in a very short time, from being a new piece of jargon, it has come to be offered by government as the guiding principle for the future of social care and indeed of other public policies (HM Government, 2007). It has had cross-party support and survived government change to remain a focus for social care policy (Putting People First, 2011). At its heart personalisation seems to be used to mean tailoring the service or support to the individual citizen or service user. While, as we have said, its definition remains vague and unclear, in social care it appears to serve as a synonym for person-centred support. It is this latter term that we will mainly be using in this book although we see the two terms as having significantly shared meanings. In this chapter we will look at the origins of the idea and practice of ‘person-centred support’, but focus particularly on the meanings that service users, practitioners and managers now seem to attach to it.

Introduction

In the last chapter, we learned how service users and others emphasised the importance of service user and worker involvement to achieve change. They saw making change as the primary purpose of user involvement and getting involved. The focus of this, the final chapter, is change itself and what change will be needed if person-centred support is to be established as the routine and mainstream way in which services seek to meet people's rights and needs.

This whole book is about making change. It comes at a time when there is widespread recognition that there must be reform in how people are supported in our society. We see the book as part of a continuing process of trying to bring about change. The project it draws on was concerned to help make change and to develop evidence and learning about how to do this most effectively. The book started by highlighting the current view, both among government and public, that there needed to be change in social care.

This was framed officially in terms of a move to ‘personalisation’. Yet even during the course of the year in which this watershed change in policy direction was embarked upon, 2008, a shift emerged from purposeful ministerial statements like ‘the issue is not if, but how’, to increasingly questioning and cautious views from previously enthusiastic experts and commentators (Brindle, 2008). The government of the time also did not wait for the findings to be available from the research it had itself commissioned on individual budgets before making the massive move to personalisation from traditional social care services. As a result expectations for moves to personalisation and self-directed support, seemed to be changing within a year, from ‘transformation’ (the government's term), to continued progress where there was grassroots commitment, but limited progress beyond this (Glasby and Littlechild, 2009).

We made clear early on in this book, the irony that while there is currently a strong emphasis on the need for change in social care, it is a field where there has been constant change for years now.

Introduction

In this chapter we focus on the unpaid support which service users receive from those close to them – ‘informal carers’ as they have come to be called. Such unpaid ‘caring’ is a complex and highly contentious issue. Over the last 30 plus years, governments and policymakers have placed an increasing stress and reliance on such support. They have emphasised that most of the support that service users receive comes from such informal carers, rather than the paid workforce examined in the last chapter. We are regularly told that ‘There are almost six million unpaid carers of adults in the UK…. Without them, the social care system would collapse’ (Hampshire County Council, 2008, p 65). Here we look at how such arrangements work out in practice, their implications for person-centred support and to what extent they may be consistent with service users’ choice and control over their lives.

The term ‘carers’ or ‘informal carers’ has come to be used particularly in relation to support provided for people by their family, friends and neighbours. Most often, it means support provided by people's families and loved ones. Such ‘caring’ can embrace a very wide range of activities and relationships. It may mean providing support to a sibling, partner or offspring. The need can arise at any time in our lives – from when we are still at school, to our own old age. It may entail some modest help with routine day-to-day tasks like shopping or cleaning, to help with the most intimate activities of daily living ‘twenty four seven’, as some carers put it. The need may arise because of someone's physical, sensory or intellectual impairment, through mental distress, chronic illness or increased physical and mental frailty linked with older age.

All the indications are, that in the future first in western societies and then globally, more and more people will need support to live. Medical innovation and broader changes are making it possible for more of us to be born, to live beyond infancy, to survive once life-threatening illnesses and conditions and to live much longer lives. But more often now, we may need help. In western societies like ours, the policy dedicated to addressing such issues is social care, a policy which interestingly seems to carry little resonance for most people.

Social care addresses most of the troubles that human beings are heir to. This ranges from madness and distress, poverty, homelessness, abuse and neglect, to inherited and acquired physical, sensory and intellectual impairments. The frailty that comes from ageing, chronic disease, loss, death and dying is also its province. Social care may intervene in our lives from the beginning to the end, at some of the most difficult times and when people are faced by the most painful experiences. It may do so on a voluntary or involuntary basis, such are the official powers invested in it.

This is a time of major rethinking and change in social care policy within the UK, but such change also has international significance. It also comes at a time of major UK political and economic change. This book looks at what a system of social care based on providing the kind of support people want, may actually look like and how it can be achieved. To do so, it draws particularly on what those people themselves have to say.

The shortcomings of social care

It has long been recognised that the social care system often does not provide the sort of care and support that people want. Using social care services frequently results in the service taking over the person's life, rather than the person feeling supported by the service.

Introduction

In this chapter we focus on the social care workforce. Practitioners are a vital element in social care and their role is clearly crucial in the move to and provision of person-centred support. Here we look more closely at how this workforce is treated and how consistent this may be with moves to person-centred support. The basic data about the social care workforce have been widely reported and are widely seen as cause for concern. While it is difficult to define accurately, the workforce is estimated to number about one-and-a-half million people. It ranges from professional social workers with statutory powers to restrict people's rights and freedom, to residential and domiciliary workers who are hourly paid. Two thirds of workers work in private or voluntary organisations. The workforce is located in a wide range of policy areas, including housing and health, as well as in specific social care services. Overall the social care workforce has been associated with low pay and poor terms and conditions of work (CSCI, 2008). These are often equated with those of supermarket shelf-stackers and check-out workers (but often with less favourable hours and working conditions).

The proposed project

Here we set out in more detail, for readers who are interested, how we carried out the project on which this book draws. A shorter account is provided in Chapter One.

The Standards We Expect project grew out of one of the programmes of work of the Joseph Rowntree Foundation (JRF), a leading independent funder in the field of social policy. This was the programme of its newly established Independent Living Committee, which built on the influential work of the Foundation's earlier Social Care and Disability Committee. The call for The Standards We Expect: Developing person-centred solutions’, as it was originally called, focused specifically on work to increase opportunities and expectations for choice and control from policy and practice for people with support needs, in line with the values of the philosophy of independent living, developed by the disabled people's movement. A programme of interrelated work was developed of which this project was the largest element.

The call for applications came out in the summer of 2005. The project was conceived of as a UK-wide change and development project. From the beginning, it was clear that it was not seen as just a research project, although it had clear research elements to it. Its focus was ‘change’, with the aim to offer wider lessons about what people wanted to live their lives more ‘independently’ and how that could be achieved. The tender documents stated that the aim was to:

• • learn (by working closely with a number of local services and users) ways of overcoming specific and general barriers to person-centred approaches [to support];

• • share empowering approaches (within existing resources and the existing practice setting) with a wider network of services, users and other stakeholders;

• • comment critically during and at the end of the project on ‘the social care system’ – highlighting the opportunities to bring about change within the present system and/or provide pointers to a more radical revision of the system if that is needed.

Our consortium

Our consortium was just one of the groups that got together to bid for the tender. This went through a process of submitting initial expressions of interest, then applications, being shortlisted and then interviewed by the Foundation's Independent Living Committee.

Introduction

In the last chapter, where we focused on ‘informal care’, a tension emerged between people making their own decisions and living independently, on the one hand and, having decisions made for them and being dependent on their families, on the other. This discussion is developed further here, where we look at problems of institutionalisation – the antithesis of independent living and person-centred support – and what works to overcome the barriers associated with it.

Institutionalisation was first associated with the large ‘total’ institutions, like work houses and ‘lunatic asylums’ established in the 19th century (Goffman, 1968). People are socialised into the rules, requirements, routines, restrictions and values of such institutionalised living. It not only limits their lives, but also creates long term damage that makes it difficult for them to live differently. Features associated with institutionalisation include:

• • people's rigid categorisation

• • being segregated

• • being lumped together

• • the provision of merely physical maintenance

• • group living

• • standardised routines

Colin Barnes has described the effects of institutionalisation on disabled people in these terms:

Introduction

We saw in Chapter Eight how members of black and minority ethnic communities were often isolated from support and mainstream services. But while they face particular barriers, the difficulties all service users face in getting the support they need seems to be a much broader problem. Again it has much to do with the way that services work and their lack of fit with service users’ lives and experience. In this chapter we look in more detail at these difficulties and how they may be overcome, particularly through supporting people to be in a stronger position as service users to engage with services and support systems. Issues of capacity building are key here.

Whatever system of support is available to ensure people can live as independently as possible, the first requirement is that it is readily available and accessible to them. This is no less true if the ambition is to move on from traditional approaches, to provide person-centred support. Indeed it may be that the need is even greater with person-centred support.

What distinguishes person-centred support from traditional serviceled approaches to social care and social services is that it is essentially an interactive process.

Introduction

Public, patient and service user involvement and engagement have come to be seen as key to modern public policy and services. Social care has been at the vanguard of these developments. There have been provisions for consultation, comment and complaint in social care for both adults and children since the early 1990s. The disabled people's movement has long emphasised the importance of participation in a framework of rights and emancipation. As Clare Evans has said:

The Care Services Improvement Partnership (CSIP), established by government to improve social care, urged services to involve service users in making improvements.

The government Green Paper key to the development of personalisation, took this further, pressing for greater service user control as well as participation.

Appendix One contains more information about how we carried out the project, the Standards We Expect on which this book is based. The accent in the project was very much on people's direct and meaningful involvement – as service users, carers, practitioners and managers. As well as being a participatory research project, it was also a development project. This meant that a constant concern of ours was both to enable as wide a range of people to get involved in it – including people facing many barriers – and also for the project to be able to make a difference to them.

For this reason we had to pay particular attention to encouraging and supporting people's involvement and meeting their access and support needs. We knew from experience that this could be a complex matter that required careful planning and thought. We needed to ensure people also had as clear an idea of what we were trying to do as possible, so that they would feel comfortable getting involved and more likely to want to do so.

We therefore developed plans and policies for their involvement and to ensure that it was involvement based on clear information and informed consent. We also wanted to make the most of the experience and expertise that participants had to offer. We produced a considerable amount of documentation – accessible documentation – which set out and helped us to record what we were doing, what we wanted to find out about and what we were learning. We needed to be clear among ourselves – as well as being clear to participants.

This resulted in a plethora of schedules, guidance notes and protocols. We thought it would be helpful for these to be available for interested readers who might want to carry out a similar kind of project themselves or who wanted as clear an idea as possible of how we carried out this project.

To enable people to access this material, we have placed this series of 27 appendices on the Supporting people book page at www.policypress.co.uk. The material includes a significant portion of the documentation associated with the Standards We Expect project.

Introduction

The focus of this chapter is the practice of people who work face to face with service users. Such practice is at the heart of social care. It is where the aims and ideologies of agencies and policymakers intersect with the lives, rights, needs and desires of service users. Practice describes the role of social care workers in relation to service users – how they work with them. Yet despite the importance of such practice and such practitioners, neither seems to have been central in discussions and developments relating to social care. The repeated message from service users is how important good practitioners can be, but how damaging poor practice is and how unreliable the quality of practice tends to be in current social care (Beresford et al, 2005; Branfield et al, 2005).

Issues relating to practice are spread throughout this book, because they are so key to any discussion of social care. In Chapter Four, we looked in detail at workforce issues, where constraints operating on the quality and nature of practice relating to lack of training and support emerged. However, as we have also seen, problems of funding and bureaucratisation and institutionalising regimes, also create barriers in the way of person-centred practice.

We know that the goal of person-centred support is to work in a way which focuses on the rights, wants and needs of individuals, taking its cue from them. It seeks to support them to achieve what they want from their lives, rather than fitting them into a narrow range of pre-set services.