Skip to main content
main-content
Top

About this book

Written by a collection of experts in the field, this important new text provides a critical and constructive analysis of the ways in which service users and carers engage with health and social care services.

Covering topics such as the importance of terminology, wellbeing and resilience and the notion of tokenism, and enhanced by a wealth of first-hand experiences and creative work by a range of service users and carers, the text examines how different forms of collaboration, participation and involvement (or lack of it) have contributed, and continue to contribute, to service development and the expansion of participant movements. With a strong focus on retrospective as well as prospective analysis, it encourages the reader to learn from both historical and current developments in service user and carer involvement in order to anticipate and inform future directions.

This engaging and inspiring text is key reading for students on undergraduate and postgraduate Social Work programmes, as well as practitioners looking for a fresh new perspective.

Table of Contents

Part 1

Frontmatter

1. ‘Patients’, ‘Clients’, ‘Service users’, ‘Survivors’ and ‘Carers’: Backwards, Forwards and Places in Between

Abstract
This chapter looks at the emergence of ‘patients’, ‘clients’, ‘service users’, ‘survivors’ and ‘carers’ as distinct groupings and considers the associated opportunities and constraints inherent in these assumed or ascribed roles. It appraises power plays and imbalances and explores how these have served to variously include and marginalise. It reviews key aspects of the literature and examines the ways in which ‘patients’, ‘clients’, ‘service users’, survivors’ and ‘carers’ have been incorporated into policy platforms and practice scenarios. In all arenas concerned with policy and practice, terminology is important. How individuals and groups view themselves, and how they in turn are viewed and responded to, has significant implications. Throughout this book terminology will be subject to critical appraisal, but at the outset it is useful to outline some of the key issues surrounding much-used designations such as ‘patients’, ‘clients’, ‘service users’, ‘survivors’ and ‘carers’. The label ‘patient’ has acquired both legitimacy and credence through the acceptance and durability of the processes and practices of medicalisation. In clinical terms, a ‘patient’ has a medical problem which a range of medical professionals respond to, often by means of a process of hierarchical ordering linked to medical responsibility. There tends to be a duality of acceptance with the inevitable power imbalances being associated with the need for expert knowledge and expert intervention. However, these processes have been subject to deconstructive appraisal. Foucault (1979, 1981), for example, critiqued both the implied passivity of the ‘patient’, the processes by which individuals become ‘docile bodies’, and the legitimising knowledge and power regimes of the expert. Many authors have used his work to unpack the effects of medicalising practices (e.g. Fox, 1991) and have used genealogy to explore the forces which render particular social practices acceptable at particular points in time, enabling them to be both prescriptive and confining in terms of what is to be done and what is to be known (Foucault, 1981).
Barbara Fawcett, Maureen Smojkis, Nicki Ward, Dawn River, Joy Fillingham

2. Bleeding Boundaries: Homogeneity and Heterogeneity in User Involvement

Abstract
Identity has been studied from a variety of perspectives and can be understood as relating to our sense of self and the way that our identity characteristics and our understanding of these (our gender or sexuality, for example) are influenced and framed by the sociopolitical structures of the society in which we live. Echoing these understandings of identity as both individual and social, identity theory has demonstrated that being a part of a group is not only important in generating a sense of belonging but that it can also be a source of power. Even for those whose identities have traditionally been marginalised – women, people of colour and sexual minorities, for example – being allied to a group or network can help to overcome the marginalisation which a person experiences and may provide paths to empowerment. Drawing on some of the themes identified in Chapters 1 and 2, this chapter begins by considering how belonging and marginalisation have influenced the development of service user and carer involvement. Building on this discussion it then considers how this process of inclusion and involvement might also serve to homogenise our understandings of what it means to be a service user or a carer, or even an academic or a professional, and how this might at times reinforce processes of inclusion and exclusion by marginalising those whose identities do not easily ‘fit’ within these groups.
Barbara Fawcett, Maureen Smojkis, Nicki Ward, Dawn River, Joy Fillingham

3. Visibility and Invisibility in Service User and Carer Involvement

Abstract
As demonstrated in the preceding chapters, service user and carer involvement has moved on significantly in the past 20 years, developments which have been influenced by the campaigns of new social movements which sought to challenge paternalistic and disempowering services alongside sociopolitical developments focused on consumer citizenship. As a result many social policies, particularly in the fields of health and social care, now include requirements to involve those who use services in the development and delivery of them. This is further evidenced in requirements relating to the training and education of professionals (Health and Care Professions Council, 2013). As highlighted in Chapter 2 the notion of involvement has been conceptualised in a variety of ways, from people simply being involved in or allied to a service through to more aspirational policies aimed at parity of participation and co-production (Sheldon and Harding, 2010). Policy is clearly now more focused on developing involvement which is meaningful and not simply tokenistic and, as demonstrated previously, many of those engaged in these processes would argue that they are at least working towards co-production. In addition we have seen how changes in terminology also reflect this move towards equality, control and co-production, something which is demonstrated further in Chapter 8. However, as Iliffe et al. (2013) note, amongst the range of people who are stakeholders in service user involvement, there will be adversaries and agnostics as well as advocates.
Barbara Fawcett, Maureen Smojkis, Nicki Ward, Dawn River, Joy Fillingham

4. International Agendas: mirrors and mirages

Abstract
‘International’ has a range of meanings. It can refer to how practices vary within and between countries. It can also relate to supra ways of operating which transcend national boundaries and which seek to establish international frameworks and codes of rights. There is also the all-pervasive, yet somewhat elusive, concept of globalisation to consider. In this chapter, the significance of these varied meanings will be reviewed in order to place into perspective international viewpoints that are associated both with the emergence of groupings of service users, carers and patients and with issues concerning ‘involvement’. As a corollary to this discussion, this chapter will also provide details of how social issues are affected by context. This will facilitate an exploration of the orientations operating and the implications of these for policy and practice in the international arena. Globalisation is generally seen in economic terms as the promotion and expansion of business opportunities and the opening up of world markets. However, it also relates to the transfer of ideas, ideologies, policies and practices. The direction of travel and the resultant ethical, social, cultural and economic implications are areas that have generated, and will continue to generate, fierce debate. Giddens made a significant contribution in 1990 when he highlighted the ways in which the generalised reframing of economic and social principles was having a concomitant effect on populations, families and individuals.
Barbara Fawcett, Maureen Smojkis, Nicki Ward, Dawn River, Joy Fillingham

Part 2

Frontmatter

5. ‘This Could Be Rotterdam (or Anywhere)’: working in partnership with service users and carers on an international exchange programme3

Abstract
This chapter focuses on service user and carer involvement in an international exchange programme at a UK university. It looks back at the accumulated experience of service users, students and academics over the past decade and discusses the opportunities and obstacles that arise in developing a partnership model of international exchange. While the focus here is on social work, our experience suggests this commitment to international exchange incorporating a partnership model of working together with service users and carers provides a strong foundation for developing critical self-awareness and an anti-oppressive practice which can be applied to a health or social work setting. In 2008 a teaching team of two academics, two service users and two carers went with a group of 19 social work students from a UK university to a university in Rotterdam on a pilot international exchange trip. The mutual learning that took place during this trip provided a basis for developing a more critical and complex understanding of social work – its purpose and its responsibilities. Reflective learning journals completed by participants (service users and carers as well as students and academics) upon their return revealed a much greater level of insight and empathy in relation to ‘others’ than is usually displayed by students following more traditional approaches to social work education.
Barbara Fawcett, Maureen Smojkis, Nicki Ward, Dawn River, Joy Fillingham

6. Exploring Resilience and Wellbeing: Crossing the Boundaries Between Service User and Practitioner in Mental Health

Abstract
The promotion of wellbeing is a central political goal for social and public policy and emphasis has been placed on the promotion of building personal resilience. In this chapter it is argued that the principles of personal resilience promoted in health and social care professionals (positive, supportive relationships and networks, self-reflection, self-care, assertive communication and conflict resolution) bear a marked resemblance to those principles identified by service user and patient groups in their recovery journey (making contact with others, developing supportive relationships, self-care and being engaged in purposeful activity). This chapter will explore the commonalties between those who use services and the development of recovery and resilience building for mental health professionals. This chapter focuses specifically on mental health in Birmingham and the work of an inpatient care forum. This forum incorporates those who have used mental health services as well as health and social care workers and academics. It is maintained that this forum not only emphasises the ways in which members wear different hats but also the importance of exploring commonalities and the development of reciprocal relationships.
Barbara Fawcett, Maureen Smojkis, Nicki Ward, Dawn River, Joy Fillingham

7. Arts-Based Practice: Learning From Survivor Artists4

Abstract
There is a growing appreciation of the positive impact artistic expression has on mental health, wellbeing and recovery; this in turn has led to an increased recognition of the relevance of arts-based practice in health and social care (Arts, Health and Wellbeing, n.d.; River et al., 2016). This paper seeks to contribute to this knowledge base by drawing on the experience of ‘survivor artists’ to provide a reflective account of the ways in which the arts, with specific reference to a survivor arts project at a UK university, can inform professional education and practice. A variety of positive benefits from the arts have been reported within health care (Goodill, 2010), community work (Newman et al., 2003) and education, with arts being recognised within these sectors as ‘techniques for practitioner development and as a means of promoting healing, personal growth, social inclusion and community action’ (Cultural Learning Alliance, 2001). Little evidence, however, was previously available to reveal such a rich variety of arts being applied within social work (Walton, 2012: 725). For this reason we intend to focus our discussion on the application of arts-based practice to social work. Walton identified two main trends she believed explained the reasons for social work lagging behind other disciplines in this area – ‘first, the identification of social work as a social-science-based profession; and second, the political prioritisation of managerial-bureaucratic processes over interactional, engaged social work’ (Walton, 2012: 726).
Barbara Fawcett, Maureen Smojkis, Nicki Ward, Dawn River, Joy Fillingham

8. Building Voices: Challenging Stigma and Constructing Identities

Abstract
This chapter considers the negotiations with change which occur within many people’s lives in relation to both health and social care; for instance, through acquiring impairments, becoming a carer or encountering substance misuse issues, individuals and their families are forced to respond to roles which have often been imposed upon them. It becomes necessary, therefore, for people in such circumstances to reassess their position, renegotiate their identity and contest the way(s) they may be perceived. The stigma, stereotypes and challenges which individuals encounter as a result of enforced change can be a huge shock and an additional imposition on the person and their significant others, yet often only by constructing or reconstructing their sense of self can people effectively position themselves within the new role. In this chapter the theoretical aspects considered are applied throughout to four examples based upon individuals’ personal experiences. The roles of ‘service user’, ‘patient’ and ‘carer’ are ones which most of us incorporate into our lives at some point, but are rarely the only determining factors by which a person may wish to be identified. As a result, the implications of such roles being integrated into a family setting, and how these are perceived by the wider society, have considerable significance. As part of this discussion, it is acknowledged that many people no longer live within what may be viewed as a traditional family unit (Bengtson, 2001). A ‘family’, then, can constitute a much broader range of individuals than biological parents and children, but may well include friends, neighbours and many others with whom they have enduring and affectionate relationships.
Barbara Fawcett, Maureen Smojkis, Nicki Ward, Dawn River, Joy Fillingham

9. Conclusion: Future Dilemmas and Directions

Abstract
As we noted at the outset, the authors of this book come from a range of backgrounds. All have considerable experience in the field of health and social care and all currently teach on professional courses in these areas. We have also all, in a variety of ways, been patients, users of services and have both acquired the title and taken on the role of carer. In this book, we have foregrounded the importance of recognising that we all have multiple identities and have emphasised the significance of intersectionality. This will not, however, be how everyone experiences and understands their personal identity. For example, one of us was recently challenged by a black student who strongly rejected the view that identities constantly shift and change. She felt that this perspective challenged her black identity which she saw as being at the core of who she was and how she viewed the world. We accept that some will adopt a dominant identity which they feel wholly represents their prevailing view of themselves, while others will see their identities as multiple and constantly changing. Nevertheless, we argue that it is important to engage with the construction and experience of different subject positions and the way they influence our identities and our lived experiences. Difference and diversity affect ontological and epistemological stances as well as the degree of fluidity we accept in relation to ourselves and others. We accept that there are a variety of ways in which individuals and groups position themselves and that this affects interaction, involvement and participation.
Barbara Fawcett, Maureen Smojkis, Nicki Ward, Dawn River, Joy Fillingham
Additional information