1
CRITICAL ISSUES IN THE DEVELOPMENT OF SERVICE USER INVOLVEMENT
Joe Duffy and Peter Beresford
Introduction
Service user involvement continues to grow as an integral part of policy and practice in regard to many aspects of health and social care, professional education and research. This is particularly evident in the UK from where we as authors write, but more importantly, it has become an international development, and there are important examples of service user involvement in many other countries, to which this chapter will also refer. While much progress has been made with regard to service user involvement, it is also important to critically reflect on those key issues which have the force to encourage yet impede its development. Understanding the history of âinvolvementâ; its key ideological and policy influences; debates on knowledge and theory; and issues around tokenism, power, social exclusion and othering are aspects of the undergirding conceptual building blocks which are necessary to interrogate in the process of understanding why service user involvement is necessary in the overall architecture of human services policy and practice. This chapter will focus on these key issues and debates, leaving the reader with a critical understanding of service user involvement with regard to its history, development and the nature of the challenges and opportunities that lie ahead.
Service user involvement â historical and policy perspectives
We can expect that so long as there have been human services, there have been pressures to make them more participatory from both practitioners and people on the receiving end as service users: to enable more equal two-way relationships, rather than the kind of bureaucratic and punitive regimes traditionally associated with poor law and regulatory regimes. However, it is really not until well into the second half of the twentieth century that we begin to see structured, formal and systemic arrangements come into existence that were expressly intended to encourage more involvement from service users and other citizens (Beresford, 2005). This marked a significant departure from the predominantly paternalistic and non-participatory ways in which, for example, post-war welfare states were established and operated.
There were two early and important contexts for this participatory development in the 1960s and 1970s. The first found expression in the US as the âWar on Povertyâ and in the UK as the community development programme. Both were focused on communities and disadvantaged groups, particularly Black and minority ethnic people, women and young people, and they sought to âinvolveâ people in challenging their deprivation by consciousness and skill-raising approaches. The second initiative was the implementation of provisions for participation, pioneered in the UK in land use and land development planning. The aim was for local people and communities to have a real say and stake in how their neighbourhoods and localities were shaped through involvement in schemes for public consultation and complaint in planning (Beresford, 2019a). These historic initiatives offer some early warnings about the possibilities and also limitations of adding such involvement to existing political and policy arrangements. We know that in the US and UK, the continuing existence of structural barriers relating to continuing (and in some cases worsening) economic and social inequality limited the capacity of programmes for positive discrimination either to engage or to uplift people effectively (Atkinson, 1983; Sheffield and Rector, 2014). Formal provisions for participation in planning have been notorious for their failure to engage large numbers of people and to address diversity effectively (Beresford, 2019a).
These problems are a reminder of the importance both of contextualising efforts to involve people and connecting them to broader political structures and ideological pressures and issues at work which may impact upon them. One approach has been to develop models of participation although these tend to be limited in their usefulness. Such uni-dimensional approaches to participation, while in some cases recognising power differences, often still struggle to address its essentially political nature. While they can have a helpful part to play in improving understanding, they also tend to be reductionist, over-simplifying and ill-suited to dealing with the real-life complexities and ambiguities of such involvement (Tritter and McCallum, 2006).
A more helpful alternative is to put such participation in the context of the development of modern democracy more generally. Here, four key stages in the development of public participation in health and social care and other policies and services can be identified. These historical phases are associated with:
- 1 Moves towards universal suffrage in representative democracy and the achievement of social rights, like the right to decent housing, education and health [first half of twentieth century, creation of welfare states in Europe];
- 2 Provisions for participatory democracy and community development;
- 3 Specific provisions for participation in health and social care [emerging internationally from the last quarter of the twentieth century];
- 4 State reaction and service user-led renewal as conflicts and competing agendas develop [emerging particularly in the second decade of the twenty-first century and problematizing more clearly international inequalities and Northern and Southern hemisphere differences].
(Beresford, 2019b)
We can see from this that the 1960s to 1970s examples we discussed earlier fall into the second phase. Significantly, we now seem to be in the grip of the fourth phase, where broader political shifts to neoliberalism internationally can be seen to have a reactionary effect against such participatory initiatives, while increasingly popular user- and community-led approaches continue to press â more overtly often â in the opposite direction. The contentiousness that this generates helps explain the particular interest in discussions like those contained in this book, as well as highlighting the importance and urgency of developing them at this time.
Although the dominance of neoliberal ideology has imposed limits on the development of user involvement and citizen participation, as well as on the rights and say of people as service users, it would be a mistake to assume that it has ended progress. Indeed, what we can see is an increasing focus and indeed, in some ways, a strengthening and redirection of activity. Thus, while experiencing much suffering in recent years, service users and their organisations have extended both their critiques and their action in relation to health and social care and other policies and services. Some key areas of activity include:
- Widening involvement and campaigning, challenging exclusions
- Involvement in professional and occupational training
- Involvement in research and knowledge production
- The development of âMad Studiesâ.
All of these areas of activity are explored in this Handbook.
Service user involvement â knowledge and theoretical perspectives
At the very core of involving service users is an essential recognition that this involvement in itself brings with it a particular type of knowledge. It is, therefore, arguable that a fundamental questioning and shift has occurred in what is regarded as knowledge in the domain of human services work (see Beresford, 2000; Beresford and Boxall, 2012; Levy et al., 2018). Inevitably, this has been seen as challenge to other types of knowledge regarded as more traditional and âexpertâ and, implicit within this, a recognition that there are âother knowledgesâ which also can make an equally important contribution. Rose, for example, argues that there can be no such thing as universal knowledge but instead differing knowledges from different standpoints should be recognised (2009). Linked to this, McLaughlin (2009), adopts the term service user standpoint theory to argue that service users occupy a particular standpoint[s], and their experience of being social work service recipients facilitates their development of key insights, perspectives and understandings about these issues based on lived experience. Locating service user experiential knowledge within standpoint theory, defined as âtheory based upon identity and, in particular, an individualâs membership of a particular social group, whether this is women, disabled people or service usersâ (p. 12), McLaughlin (2009) builds on the works of Harding (1987, 1991), Collins (1986) and Swigonski (1994). The basis of standpoint theory is that âless powerful members of society experience a different reality as a consequence of their oppressionâ (Swigonski, 1994, p. 390). Developing this argument further in regard to service user involvement in research in particular, Swigonski asserts that âless partial and distorted understandings of nature and social relations will result from research that begins from the standpoint of particular marginalised groups of human beingsâ (p. 390). Beresford (2013a) adopts a similar view in his argument that service users having an important contribution to make from their experience of being on the receiving end of social policies.
Service users and carers have thus had a well-established formal position in key aspects of professional social work education in the United Kingdom since its reform in 2002. In this role, their experiential-based knowledge has helped social work students in their understanding of social work values (Duffy and Hayes, 2012; Gutman et al., 2012), linking social work theory to practice (Brown and Young, 2008), developing skills in preparation for practice learning (Duffy et al., 2012) and understanding difficult, threshold concepts in the curriculum (Meyer and Land, 2005), such as the impact of political conflict (Duffy, 2012). Service user-based knowledge has therefore had an important, recognised role at the heart of preparing social workers for human services work.
As mentioned already, acceptance of service user, experience-based knowledge can pose epistemological questions and debates when compared to other types of knowledge considered to be more objective, expert and scientific (Eraut, 1996; Fook, 1999). While Ramon (2003), for example, argues that service users bring valuable first-hand knowledge in terms of policy, practice and research, concerns about âordinary people taking on powerful rolesâ express the types of fundamental challenge that face the gravitas of this knowledge (Rimmer, 1997, p. 33). Similar questions have been expressed by others, such as Prior (2003), who raises questions about lay knowledge being too subjective and lacking in wider applicability. The latter point, however, links back to Roseâs argument about the need to accept knowledges from differing standpoints, and to Harding (1987) and Swigonskiâs (1994) contentions that there are different âways of knowingâ. It also challenges old assumptions that there is such a thing as âobjective knowledgeâ in the social sciences (Beresford, 2003).
Trevithickâs (2008, 2012) pioneering work on the key components of the social work knowledge base is also important in her positioning of service user knowledge within a factual domain of knowledge in social work. Similar to the points already mentioned about service users being directly impacted by social welfare policies, Trevithick argues it is important âto recognise and to acknowledge this pool of knowledge and to use this information creativelyâ (2012, p. 1226). Fundamental questions of power and power imbalances are inextricably interwoven with these processes, which will be discussed later in this chapter. The social work literature, for example, frequently negatively constructs service users in an âotheringâ discourse as being in some way deviant and on the outside (Banks, 2006). Acceptance of service user knowledge is thus a fundamental challenge to such âanti-oppressive literature or theoryâ (Wilson and Beresford, 2000, cited in Beresford and Boxall, 2012, p. 161), which arguably has had a tendency to problematically portray perceptions of service users. Linked to this point, and important in this notion of comparing different sources of knowledge, there is an argument that all knowledge claims should be exposed to critical questioning, thereby promoting anti-oppressive practice (Dalrymple and Burke, 1995; Clifford and Burke, 2005).
Service user knowledge arguably also can align itself to well-established existing theoretical constructs, particularly the work of some critical social theorists. For example, pivotal to Recognition Theory (Honneth, 1996), according to Rossiter, is the argument that an individualâs identity is a social construct âsocially acquired and thus identity is a matter of justice because the acquisition of self-confidence, self-respect and self-esteem is the foundation of autonomy and agencyâ (2014, p. 93). Honneth therefore situates identity development as linked with the role of others, which will ultimately help with the promotion and advancement of social justice. âIt makes you realise how much you have to shareâ (Duffy et...
