User Involvement in Mental Health Services: A Case of Power Over Discourse
by Lydia Lewis
Centre for Developmental and Applied Research in Education, Faculty of Education, Health and Well-being, University of Wolverhampton
Sociological Research Online, 19 (1) 6
Received: 30 Aug 2012 Accepted: 25 Oct 2013 Published: 28 Feb 2014
Public participation in planning and implementing health care has become a government mandate in many states. In UK mental health services, this 'user involvement' policy dates back nearly three decades and has now become enshrined in policy. However, an implementation gap in terms of achieving meaningful involvement and influence for service users persists. This paper aims to illuminate some of the political discursive processes through which this gap emerges and to educe implications for the policy initiative and for effective approaches to service user involvement. It presents findings from a qualitative, localised UK-based study of user involvement in mental health services, conducted from a critical discourse analytic perspective, according to one emergent feature - power over discourse. Three themes relating to this discursive regulation are discussed: the rules of the game, the rules of engagement and agenda-setting. The article shows how although the policy initiative was providing opportunities for discursive contestation in local arenas surrounding mental health service development, these were pre-dominantly characterized by containment and control and by silences. Consequently, the discursive processes of user involvement worked to nullify its potentially transformative influence and to further marginalize women service users and other groups. Implications for the development of user involvement in service commissioning are provided.
Keywords: Service User Involvement, Mental Health Services, Discursive Regulation
Introduction1.1 User involvement - the active participation of service users in influencing and shaping services - has been a feature of health policy internationally for over three decades and in the UK is now enshrined as a policy imperative. These developments have been particularly salient in mental health services, where they have been driven both by a consumerist policy agenda concerning responsiveness to service users' needs and by pressures for democratisation of decision-making processes. In the field of mental health, these changes have been linked to widespread organising among users and survivors of services (the user/survivor movement). However, research consistently shows a policy implementation gap for user involvement and indicates that its full potential for transforming services remains unrealised (see, for example, Barnes, Newman and Sullivan 2007; Bochel et al 2007; Carr 2007; Connor and Wilson 2006; Heenan 2009; Lewis 2012; Roberts 2010). This paper elucidates some of the discursive processes through which this gap comes to exist, relating these to the social structural dimensions of the field, and provides suggestions for redressing it in the context of UK mental health policy. Some background to policy and politics, and then research in the area is provided first.
The policy and political context2.1 Since being proclaimed as 'a right and a duty' in the international Alma Ata Declaration (International Conference on Primary Health Care 1978) public participation in planning and implementing health care has become a government mandate in many states. This is based on the perception that widening the range of views, experience and expertise will improve decisions, increase public acceptance of policy decisions and encourage public responsibility for these (WHO 2006). In the UK policy in this area dates back over three decades, with a raft of legislation in the area since 2001 (see McKinley and Yiannoullou 2012). In Scotland this includes duties of public involvement placed on NHS Boards, along with duties of equal opportunities, in the NHS Reform (Scotland) Act 2004, overseen by the Scottish Health Council. Similarly, in Northern Ireland a statutory duty of personal and public involvement in health and personal social services has been introduced (DHSSPS (NI) 2009) alongside successive health and social care policy commitments to 'increase user involvement in the design and delivery of services' (Heenan 2009: 454). In England and Wales, the Local Government and Public Involvement in Health Act (Department of Health 2007) came into force in 2009 and imposes a duty on public bodies to involve service users, including those from marginalized or traditionally under-represented groups. This English legislation was accompanied by the replacement of previous public and patient involvement structures with Local Involvement Networks (LINks), introduced as community-based forums designed to aid the responsiveness of health and social care services to local needs (Department of Health 2006). A new Health and Social Care Act 2012 (following the Bill set out by the Department of Health 2010) replaces Primary Care Trusts and Strategic Health Authorities with Clinical Commissioning Groups which have a legal duty to involve service users. It has also replaced LINks with a new public involvement structure, Healthwatch, operating at the national and local levels along the lines of Citizen's Advice Bureaux and as a consumer watchdog and complaints body. Its official aim is 'to ensure that public engagement is fully effective in future, and that services meet the needs of neighbourhoods' (Department of Health 2010: 19). Mental health has been identified as a key area for improvement.
2.2 The involvement of service users in mental health policy, planning, legislation, service provision and evaluation is also identified as a cross-cutting principle of the new WHO Mental Health Action Plan (WHO 2012). Across Europe, measures to support public participation in health policy-making include approaches of 'voice', 'representation' and 'choice'. As described by the WHO (2006: 7):
The voice mechanism can be at the collective or the group level: for example, revealing general public views or the views of particular types of service users, such as patient groups or ethnic minorities. Representation is usually at the system-wide level of decision-making, which means that representation applies either in health management bodies at the local, regional or national level or for institutions such as social insurance boards or community owned hospitals. Choice is most often exercised at the individual level: for example, choosing among health insurers, health care providers or specific treatment and care options. Although individual choices may not seem to be directly related to system-wide governance decisions, the collective effect of individual choices may change health policy by making some options unsustainable.
2.3 User involvement in mental health services in the UK has encompassed all three of these dimensions. At the level of individual service interactions there is a dominant choice agenda in England and Wales (e.g. DoH 2010), while at the strategic level participation mechanisms across the UK have included: service users participating in policy groups, national and local user consultation exercises, local community forums of service users and providers, and local and national service user/survivor groups and networks (both independent and service-led), as well as the generic patient and public involvement structures described above. However, the policy initiative, which tends to be referred to as '(service) user involvement', has produced limited and variable results by way of meaningful participation and influence for service users and consequent development of mental health services in line with their views. Currently there is 'a considerable amount of service user consultation' but 'comparatively little service user leadership, or joint decision-making in relation to service design and delivery' (Perry et al. 2013). This picture is reflected across countries in Europe, where there is wide variation in both government directives and practice regarding the representation of service users on committees and groups responsible for planning, implementing and reviewing mental health services (WHO 2008: 143-146). Moreover, in the UK, since the change of government in 2010, fears of co-option of service user groups as 'consultative mechanisms for the management of tensions between communities, service users and service providers ... have been replaced by those of marginalisation', as service user views have received less concern (McCabe and Davis 2012: 510-511).
2.4 The political situation is one of unequal power relations and potentially divergent interests between service users and other actors in the mental health system (see Forbes and Sashidrahan 1997; Pilgrim and Waldron 1998). Consequently, a managerial 'business as usual' approach to user involvement which simply adjusts administrative structures and procedures to include service users has been widely criticized as inadequate and bound to fail if the aim is to give service users more influence in the system because it does not engage with these issues of power and interests (Barnes 2002; Carr 2004; Forbes and Sashidrahan 1997; Hodge 2005; Lewis 2005, 2009a, 2012; Parkes 2002; Rutter et al. 2004; Williams and Lindley 1996). The resulting 'tokenism' and 'rhetoric' that seems to characterize much user involvement in statutory health service structures has been widely discussed, along with the restricted nature of this approach for achieving anything by way of significant service reform according to service users' views (see, for example, Glasby et al. 2003).
2.5 There has also been criticism of prevailing consumerist approaches to user involvement grounded in neo-liberal principles in which consumer feedback and choice drive up standards because these 'risk replicating and reinforcing existing inequalities' as those with more knowledge and other kinds of resources are more likely to benefit from this agenda (Bochel et al. 2007: 204). Consumerist approaches are individualistic in orientation and so negate the wider social inequalities which impact upon mental health and experiences of mental health service usage. They divert attention from the structural nature of power inequalities in the mental health system and the need for organisational change and collective struggle to address these. They also fail to engage with the ideological struggles surrounding the paradigms of health care, which are concerned with the conceptualisation of health problems, associated service responses and the personal and political implications of these, including 'issues of moral judgement and civil rights affecting the 'sufferers' from a particular condition' (Barnes 2002: 323).
2.6 In the mental health field, a consumerist ideology has been criticised for 'positioning people using services as customers or consumers rather than citizens with recognised rights to state support' and as (potential) active, knowledgeable agents within civil society (Barnes 2002: 330). The discourse of 'service user' involvement has been problematised for defining people primarily in relation to their use of mental health services and 'mental health problem' (Beresford 2000; Lewis 2005) and for constructing 'users' as dependent and non-contributory (Lewis 2009a; see also Hui and Stickley 2007; Roberts 2010). Progressive approaches to involving 'service users' have therefore emphasized the need to work with people 'as citizens rather than consumers' (Barnes et al. 2006: 330).
2.7 Alongside these debates there have been demands from service user and survivor groups for a shift towards social approaches, such as non-medicalised community provision and support (see, for example, Beresford 2005; Newnes et al. 1999) and feminist approaches which are concerned with gender inequalities and their effects (see, for example, Fenner 1999; Patiniotis and White 2011; Stefan 1996; Williams and Watson 1996). This need for responses to mental health needs grounded in social perspectives has gained some ground, although this has been accompanied by a shift away from a government priority on the relationship between mental 'illness' and social exclusion (SEU 2004) towards an emphasis on 'individual self care and resilience' (McCabe and Davis 2012: 515; see Her Majesty's Government/Department of Health 2011). Meanwhile, within statutory mental health services in Britain, biomedical and psychological, cognitive behavioural service responses remain dominant, and in policy terms, the heightened priority put upon public mental health promotion and addressing the social causes of mental health problems in England remains inadequately reflected in statutory approaches to mental health services provision (see Her Majesty's Government/Department of Health 2011).
User involvement and discursive regulation3.1 Discursive regulation refers to the ways in which the use of language and discussion, and thereby the social construction of people and phenomena, can be controlled in institutional and political contexts as a facet of the operation of power and interests. In the context of user involvement in mental health services, this kind of regulation has often been considered in relation to the discursive constraints of mental health policy arenas governed by liberal democratic values of equality of opportunity to participate and rational debate (e.g. Barnes 2002, 2008; Barnes et al. 2006; Carr 2004, 2007; Church 1996). Young (2000: 11) points out that such approaches to 'involvement' are based on an idea of 'inclusion' which 'presupposes an already given set of procedures, institutions and terms of public discourse into which those excluded or marginalized are incorporated without change'. Such an idea, she argues, has exclusionary implications and fails to achieve political equality, or parity of participation for the 'incorporated' group (see also Fraser 1997, Young 1990). Those with professional backgrounds may be more likely than others to attend and contribute to such policy fora, and ignoring the inequalities which frame these is likely to work to the advantage of dominant groups through reproducing inequalities of voice (Barnes 2002; Fraser 1997; Lewis 2009; Young 1990; WHO 2009).
3.2 As well as leaving the pre-existing process intact, such an approach to user involvement is also unlikely to achieve change in outcomes (Young 2000). The bureaucratic approach and epistemic boundaries of these arenas can restrict the meaningful accommodation and use of service users' knowledge, experience and emotions within the policy process (see Barnes 2002, 2008; Carr 2004, 2007; Church 1996). The prevailing bureaucratic and scientific ideologies surrounding such fora, which are associated with medical dominance and are culturally masculine (Williams and Bendelow 1996), are likely to stifle the expression of such experience and fail to provide a mechanism for this to formally contribute to the policy process and outputs (see Barnes et al 2006; Hodge 2005). These ideologies encompass the privileging of quantifiable data alongside which personal experience does not seem to fit and so is easily discounted (Little et al. 2002). As the expression of this personal experience and its emotional surrounds (as 'discourses on emotion', see Abu-Lughod and Lutz 1990) may be a particular feature of women service users' contributions to user involvement, the negation of this discourse within user involvement processes works especially to marginalize their contributions (Lewis 2012). Furthermore, when it comes to 'emotional discourse' such as displays of anger (Abu-Lughod and Lutz 1990), public sector management approaches require the strict control of emotions and so are likely to conflict with a service user perspective which values the expression of these as part of a process of awareness-raising and change (Carr 2007; Church 1996; Lewis 2012; McDaid 2009; see also Rutter 2004).
3.3 In this context, service users' knowledge may also lack institutional authority or even be undermined through degrees of 'psychiatric disqualification' as a mental illness ascription calls into question the validity of their testimony or views and participants easily become constructed as 'unreasonable' (Lewis 2009a, 2012, drawing on Lindow 1991). In addition, the parameters of debate within policy fora may foreclose critical consideration of fundamental issues such as the paradigms underpinning mental health care because these 'challenge the institutions and professions that constitute the mental health system' (Hodge 2005: 169) and the broader concerns of service users, such as the social status of those experiencing mental health issues, may also fall outside the official parameters of user involvement agendas (Rutter et al. 2004). It may therefore become impossible to discuss alternative normative frameworks for mental distress in a genuinely open manner (Hodge 2005) or to address the competing priorities of service users compared to workers (Carr 2007) in the context of user involvement initiatives.
3.4 This article picks up and extends these debates through presenting themes relating the notion of 'power over discourse' which emerged as a salient feature of user involvement in mental health services in a UK-based, localized study. The article considers the ways in which these discursive facets of user involvement 'participated in the relations of power and ordering' (Harvey 1998: 85) of the institutional arena of mental health services, as part of the wider social structural field, with a focus on dimensions of gender and social class. It draws on ideas from critical discourse analysis (CDA: Fairclough 1992; Wodak 1996) in order to illuminate some of the organisational discursive processes through which the social and political field of user involvement in mental health services in one locale became structured, and to indicate implications for progressive development of approaches to user involvement.
3.5 The discussion is set out as follows. First, a description of the methodology is provided. This is followed by the presentation of findings along three themes: the rules of the game, the rules of engagement and agenda-setting. The conclusions further explain the findings in terms of the political dimensions of user involvement in mental health services and suggest ways forward.
Methods and Methodology4.1 The article draws on a localised, ethnographic study conducted in Scotland. It uses data from two mental health service user/community groups involved, which were sampled purposively according to their institutional affiliation and status: a statutory sector service user group attached to a local psychiatric hospital and a voluntary sector community group which included service practitioners and providers as well as service users. The main purpose of the first group was to provide information about mental health services and activities in the locality and to act as a conduit for service users' views, whilst the second group took a stronger lobbying function with respect to mental health policy and services. Multiple research methods were employed, including participant observation at service user/community and policy group meetings (seven formal observations were conducted) and interviews and informal interactions with twenty service users (seven female and thirteen male), two practitioners (both male) and three managers (two statutory sector and one voluntary sector; two female and one male). Of the female service user interviewees, two were aged 36-45 years, four 46-55 years, two 56-65 years and one 66-75 years. Of the male service user interviewees, one was aged below 25 years, four 36-45 years, two 46-55 years, four 56-65 years, one 66-75 years and one over 75 years. The service practitioners were both aged 36-45, as were two of the service managers, with one being older at 46-55 years.
4.2 Permissions were gained from the Regional Research Ethics Committee. The ethical approach included gaining informed consent for observations and interviews, and an ethos of knowledge exchange with the participating individuals and groups. The latter included feeding back and discussing interpretation of findings with individuals and the groups at interim points and on completion of the research through a variety of media including oral presentations, newsletter articles and a briefing paper. In addition to this 'interactive' approach, the research was action-oriented towards influencing policy and practice. For example, the briefing paper, which included recommendations, was also disseminated to national policy-makers and presented at a local policy forum.
4.3 Observational data were written up immediately following meetings while all interviews were recorded and transcribed. Data analysis followed a two-stage approach. The first stage involved initial familiarization and conceptually-driven category identification using a sub-sample of transcripts. The within-case analysis at this stage also entailed making a mind map and analytical notes for each. At this point the theoretical approach of the study emerged as an interactive fit with the data. The second stage involved systematic coding of transcripts and cross-sectional indexing of data. It also involved cross-case analysis through construction of a conceptual framework for the data set as a whole in the form of a mind map which included thematic headings, analytical notes, data references and key short data extracts. In addition, the process of analysis and interpretation included respondent validation of significant research themes and understandings of these, as discussed above.
4.4 The analysis drew on ideas from critical discourse analysis (CDA) (Fairclough 1992) and feminist CDA (Lazar 2005). These approaches are concerned with the relationship between language, and other elements of semiosis, and power, with feminist CDA placing a particular focus on the construction of gender power relations. While previous articles from this research have considered the ways in which social relations were constituted in and through discourses and discursive practices in the field (Lewis 2005, 2007, 2009a, 2009b, 2012), this article focuses on the constitutive work (Gubrium and Holstein 1994) of discursive regulation for the processes and outcomes of user involvement. It considers the ways in which discursive control was bound up with socio-political relations in the field and the implications of these for the organizational effects of user involvement activities. The analysis is concerned with the ways in which discursive boundaries were set, maintained and challenged, including through the social availability of discourses in different arenas and naturalization of the conventions governing discursive practices, and how these discursive processes operated as part of the political economy of the institutional field (Fairclough and Wodak 1997; Foucault 1980; Lukes 2005 ; Reed 2000; van Dijk 2001). It employs notions of boundary-setting and delimiting discursive and social possibilities in particular, considering how these were implicated in 'institutionalized orderings of power and control', while also highlighting challenges to these, and thus to the institutional order (Reed 2000, p. 529) as indicators of possibilities for social transformation (Fairclough 1992; Lazar 2005).
4.5 The analysis also draws on Pierre Bourdieu's theories of the cultural construction of social hierarchies and power, encompassing his concepts of capitals, habitus and field. Capitals refer to all kinds of resources which help you get on in life and access power (see Bourdieu 1986). This includes cultural capital (knowledge, learning) and linguistic capital which 'manifests itself as access to more or less powerful "styles''', where a style is 'an element of the mechanism . . . through which language aims to produce and impose the representation of its own importance and thereby help to ensure its own credibility' (Bourdieu 1992: 76). Habitus is the embodiment of culture i.e. the socially-shaped, enduring systems of dispositions, or ways of thinking, being and acting, that exist within particular groups, classes or institutions and which are expressed by individuals (see Bourdieu 1977: 78-87, 1990a: 52 - 65, 1990b: 63 and Reay et al. 2001 on institutional habitus). Language is an important aspect of the habitus -'in which one's whole relationship to the social world . . . [is] expressed' (Bourdieu 1992: 86). The notion of 'fields' refers to arenas of social life and cultural production that are structured according to the distribution of capitals and positions of power, as ordered social spaces (Bourdieu 1993). It is used here to refer to the local, semi-public institutionalized arena and social discursive domain (McNay 1999) of mental health policy and services development, which was part of a wider national and international field of mental health. According to Bourdieu (1990a, 1990b, 1992, 1993, 1996), fields are characterized by struggles for social positions and operate like games with more or less explicit rules for conduct in which agents compete for the stakes (see also Warde 2004). These 'rules' may be official in kind or comprise 'objective regularities imposed on all those who join a game' (Bourdieu 1990b: 60). Getting ahead may involve playing by the rules or challenging and attempting to rewrite these. The stakes therefore include elements of symbolic power ('a power of constructing reality'), including a field's categories of 'perception and evaluation' (Bourdieu 1992: 166, 234, 236), 'legitimate definitions' for membership and who has a 'right to participate in struggles over these' (Bourdieu 1996: 224 - 225; see also Bourdieu 1992: 164-183, 1993: 40-45). Starting with discussion of these 'rules', the three themes that emerged from this analysis are now discussed in turn.
The rules of the game
5.1 Along with the service user and community groups, the mechanisms for user involvement in the field encompassed a range of institutional policy and planning committees. As well as being decision-making bodies, these committees were important sites for the symbolic constitution of organisational power and the reification of organisational hierarchy (Wodak 1996). As such, some of the service users taking part, who were motivated by a desire to improve services and find solidarity with others in the face of their own negative experiences of service usage (see Lewis 2012), pointed out that gaining access to these fora signalled significant change. For example, one noted, 'The first thing that you're achieving is that you're there' (Andy). This in itself, then, could be viewed as a concession on the part of decision-makers to a demand for political presence, 'for the political inclusion of groups that have come to see themselves as marginalized, or silenced or excluded' (Phillips 1995: 5). In Bourdieu's (1993, 1996) terms, it was the outcome of a struggle over legitimacy of participation and the boundaries of the field. However, this gaining of access was accompanied by contention over issues of representation and 'voice'.
5.2 Echoing other research (e.g. McDaid 2009), the structural constraints of the uneven 'user-professional balance' (John) of certain key statutory sector planning committees and the limiting effects of including only one or two chosen service users on the community group's committee and working groups were unsatisfactory elements for some participants. Reflecting the issues set out in the introduction regarding the limits of 'business as usual' organizational approaches to user involvement (Parkes 2002) which overlook the inequalities which frame them (Barnes 2002), some participants were also sceptical of how they were expected to fit in with existing structures and to conform to their procedures: 'You as a service user go onto that committee and you have to adapt yourself to the committee; the committee doesn't adapt. There's no negotiation; there's no meeting half way' (Liz). Several participants pointed out that such an 'assimiliationist' approach to user involvement in which service users are treated according to universal institutional rules for participation (Young 1990), and which is based on an idea of 'inclusion' which means incorporation without change (Young 2000: 11), could lead to silencing, particularly among those unused to such meetings. For example, one participant commented:
If you haven't had a proper education, if you haven't learned about how to function in a committee, if you've got very low self esteem, it can be quite feasible and I've seen it and it happened to me, you go to meetings and you won't say anything. (Chris)
5.3 These findings show how there can be exclusionary implications of attempts to incorporate service users within existing policy structures (Young 2000) and how the power relations surrounding such exclusionary structures and practices can delimit the extent of participation that is possible (see Barnes 2002; Carr 2007; Farr 2011; Parkes 2002). As the above participant notes, these power relations include wider structural inequalities of social class and encompass inequities of knowledge of organisational ways of working - an issue necessitating what some male participants described as 'learning the game', for example regarding use of official committee procedures, if one was to attempt to participate on equal terms (see Bourdieu 1990b: 62 - 68 and Bouveresse 1999, discussing Bourdieu).
5.4 Inequalities of two other kinds can also be noted here. Firstly, if some of those present lack institutional status, they are likely to feel out of place and unsure about what they are expected to contribute at such meetings. These are marked by an uneven distribution of decision-making power and influence and by hierarchies of status, which are framed by wider social structures. In one telling incident, during attendee introductions at one committee meeting at the local Health Board premises, one of the two service users present remarked, 'I'm not really sure if I should be here' and then remained silent for the duration of the meeting (see also Lewis 2009a). Secondly, disparities in technical or organizational, context specific knowledge (McDaid 2009) can mitigate against participatory parity for service users in organizational working. For example, one female participant commented that at meetings it could be difficult for 'outsiders' to 'know what was going on (. . .) and who was who' (Jenny).
5.5 At other times, participants noted their relative lack of access to information, for example about the make-up of executive or planning committees. Some participants had also come to perceive an air of secrecy surrounding a key local policy document; one participant, for example, commented: 'I've never seen the [named document] (...) I've never met anybody who has' (Andy). As Wodak (1996) notes, such phenomena can be a means through which hierarchy and power relations in institutions are reinforced. Withholding information can be a political act of denying equal status (Lazar 2005), while the construction of unequal status can work to erode people's sense of entitlement to request information.
5.6 The research thereby evidenced how inequalities both of institutional status and knowledge and of wider cultural resources, or capital (Bourdieu 1986, 1992) could contribute towards service users becoming silenced and excluded within policy and planning fora. Their 'inclusion' in these fora rested upon liberal democratic assumptions of equal opportunity to participate, but without consideration of the inequalities that shaped them became a means through which power was exercised (Barnes 2002). As the following extract demonstrates, those unfamiliar with large organisational workplaces and boardroom-style meetings, disproportionately women, those of lower socio-economic status and young people, were likely to end up particularly marginalised in policy fora:
R: I found it personally nerve-wracking going along because you're going along to Health Board offices and I felt a bit intimidated. I don't think it was specifically anything to do with the manner of the people who were there. But certainly the board-room surroundings, I felt a bit like a fish out of water (. . .)
I: So did you manage to participate in the meetings or did you just go and//
R: On a very slight level; I just generally went along and sat in.
I: Right, did you feel like you would have liked to say more (R: Yes) or be more active (R: Yes) but you didn't.
R: I felt, I felt intimidated; I felt not, I wasn't confident enough to put myself across in a way that I would have liked. (Discussion with Alison)
5.7 A significant point from this extract is the way in which reference to feeling like a 'fish out of water' demonstrates the impossibility for those lacking institutional status in the field of participating on equal terms with others in official policy meetings. The extract demonstrates the mismatch of both a gendered and classed habitus (Bourdieu 1977, 1990a, 1992; Laberge 1995) with that of the field, along with the presence of 'confidence' as an interpretive repertoire. This repertoire recurred among participants, especially the women and a young, male service user interviewed in this context, working to personalise problems generated by wider cultural and structural processes (Henwood and Pigeon 1995). Significantly, then, whilst the policy fora could be unconducive to service user participation, accounting practices could function ideologically to locate this problem with the service users taking part and, thereby, to obscure the social structural inequalities affecting this participation.
5.8 The effects of ways of working in policy and planning meetings for user involvement were also commented on by one participant. She described how practices and procedures could induce passivity among service users and amount to manipulative decision-making:
I found the [policy group] a difficult group because they never seemed to make any decisions. Everything was done by consensus (. . .) and that can sound very good, but in reality what can happen is that because everybody else seems to be consenting, somebody can stay silent and not express a concern. And then things get 'passed' as it were, which people are not happy with, and they feel that because they were there when it was done, you know, they feel bad about that and yet they couldn't express whatever it was they felt at the time, and it creates all kinds of difficulties. (Liz)
5.9 These reflections provide insight into the ways in which the decision-making practices and discursive conventions of mental health service policy fora could serve a regulatory function, working to silence service users whilst providing an illusion of democratic conduct. The function of these kinds of meetings was to ensure against open conflict by creating a 'rational consensus' (Wodak 1996; see also Carr 2007) and failing to make any actual, observable decisions, through 'non decision-making' (see Lukes 2005). The outcome was that it could be very difficult for service users to express their concerns, and as a consequence this way of working was exclusionary and oppressive (Carr 2007). Furthermore, their presence served to legitimate decisions through an 'alibi action' (Wodak 2005) as it meant that technically, those affected had been 'included' in decision-making and given the opportunity to influence outcomes (Young 2000). In this manner the inclusion of service users in traditional policy and planning forums not only worked against their meaningful participation but also to maintain the institutional status quo (see also Carr 2007; Farr 2011; Parkes 2002; Young 2000).
5.10 When raised with service managers, the structural and discursive constraints of policy fora for user involvement were often acknowledged, but not in ways that would question existing policy and planning structures and processes, or the liberal participatory assumptions surrounding these. Responses from statutory sector managers included reiteration that there is a 'standing open invitation for people to come to those [policy] meetings,' and reference to better inclusion through 'meet[ing] people and giv[ing] them information' before meetings or 'supporting' and 'buddying' them to attend. Further to these suggestions, shortly after the interviews, some training initiatives for service users to facilitate their participation were introduced in the region.
5.11 These responses demonstrate again the 'assimiliationist ideal' for user involvement (Young 1990). They rest on an 'image of inclusion' in which 'bringing about political equality consists in extending already constituted institutions and practices to people not currently benefitting from them enough, and thereby expecting them to conform to hegemonic norms' (Young 2000: 11-12). One manager did express the importance of being 'flexible,' for example through having 'a sub-group for service users' (see also Carr 2007), thereby providing some acknowledgement of the need for a 'politics of difference' in which 'equality as the participation and inclusion of all groups sometimes requires different treatment for oppressed or disadvantaged groups' (Young 1990: 158; see also Wallcraft with Read and Sweeney 2003). Significantly, though, the managers did not meaningfully engage in discussion of how approaches to policy-making and service-planning, or basic institutional structures, practices and procedures could be changed to afford service users more influence within the system (see Heenan 2009). Their responses thereby helped naturalise those already in existence and their associated power structures.
5.12 Unsurprisingly then, while, concurring with other research (e.g. McDaid 2009), training in organisational working was viewed as valuable by some service user participants, others were critical of this suggestion as it was argued, 'It's the professionals that need the training' (John). In a similar vein, and resonating with Young's (2000: 12) assertion that 'political inclusion specifically requires openness to a plurality of modes of communication', another participant argued that consulting service users on their own terms was of more value to the policy process. Service user participants also came up with a number of other practical suggestions for progressing user involvement. These included an equal representation of service users and providers at committee meetings in order to achieve a 'fairer balance of power' and using voting instead of consensus-working for decision-making. Some also stressed the importance of transparency from service-planning and user groups, including in relation to purpose, and the need for information provision if their participation was to be effective and challenges to the 'existing system' made possible (see Bochel et al. 2007; McKinley and Yiannoullou 2011). There were, as well, a number of instances in the locality of service users forming their own group, charity, social firm or other initiative, sometimes in reaction to the frustrations of user involvement. Paradoxically, then, there was indication that it was the 'ineffectiveness' of user involvement that was helping to foster the conditions for active citizenship relating to mental health and mental health services in the locale (Parkes 2002).
The rules of engagement6.1 Barnes (2002) suggests asking in relation to user involvement, what are the rules of engagement, who determines them, and how can they affect the nature of participation that is possible? In this research these rules were referred to by the statutory sector managers in terms of 'appropriate' or 'acceptable' behaviour and of the importance of 'collaborative working.' One service practitioner too often referred to the aim of 'partnership working,' while a generally positive approach was also required: '[If people] start being very negative about what the statutory sector provides, there are people who will not engage in that process, they will withdraw from that' (statutory sector service manager).
6.2 These views reflect normative expectations for public sector organisational working, which the participants used to delegitimize 'negative' views and to legitimise their own disengagement in the face of these. They may also be seen to reflect an ideal of deliberative democracy based on dispassionate, orderly styles of expression (Young 2000: 6), an ideal also expressed by some service users who noted the benefits of people being 'courteous' and meetings 'orderly,' for example. Breaking the rules, for example through expressing anger at meetings, was therefore viewed by service providers as well as some service users as a moral problem of causing distress to attendees as well as counterproductive to service improvement (see Lewis 2012). Consequently, this produced further attempts to manage and discipline the service users involved through introducing 'ground rules' for meetings and discussion of training in 'how to get your point across nicely,' as one voluntary sector manager put it. Yet some not only felt it necessary to break the rules in order to convey a point and disrupt the hegemony of 'rational' bureaucratic modes of working (see Carr 2007; Church 1996; McDaid 2009) and the dominant terms of discussion (Young 2000), but also that such moral concerns were far outweighed by the outrages of their experiences of services. Some participants therefore commented on the significance of voicing one's views in group meetings, and of giving expression to feelings and experiences of service usage which may previously have been submerged:
And I felt good that I said it too, because I was very angry about that. ( . . . ) I could get that out, and I know I might not have done anything, no good perhaps has come of it, but I've said it [laughs] ( . . . ) I said that in front of everybody, that was good for me. Yeah I said "right, take that on board." (Mim)
6.3 So, whilst the discursive spheres of user involvement in mental health services, particularly institutional policy and planning meetings, were characterised by silencing, the service user and community fora created by the policy initiative did provide opportunities for the breaking of silences at times. The above participant's reflections relate to her recounting of her experiences as a hospital inpatient and as the extract indicates, although not producing a change in outcomes, such speaking out can be viewed as 'expressive politics' in which this in itself is experienced as empowering and is a means of challenging the institutional, gender-based order. Furthermore, resonating with Cain's (1993) reference to 'pre-discursive experiences', one woman noted the importance of 'highlighting issues for these people that don't have a voice at all, you know, in the hospital' (Christine). Reflecting their reasons for taking part in user involvement, then, the women's discussion of the personal and political importance of speaking out also encompassed reference to that of speaking for others (see also Lewis 2012).
6.4 The use of narrative in political arenas can also be a technique for attempting to reframe the debate through 'explaining meanings and experiences' (Young 2000: 7). However, in the context of this research, such attempts were often met with resistance, one method of which was to construct and categorise politicised service users as 'professional' in order to delegitimize their contributions and attempts to challenge discursive boundaries (see Bourdieu 1992: 181, 221, 234-239, 1996: 214; Lindow 1991):
In terms of formal meetings, I think one of the major problems is ( . . . ) there is a hardcore of what I would say are professional service users who attend meetings and ( . . . ) when they are focusing on something which is inappropriate, when they are talking about something which is personal to them and not pertinent to the meeting, rather than being acknowledged and spoken about directly or indirectly afterwards, there is a culture of "well, I'll allow them to do that", which is patronising and ( . . . ) [they should be] treated exactly the same as any other group member. (Steve, service practitioner)
6.5 This participant conveys an ideal of democratic inclusion in which everybody is treated the same and contests the legitimacy of people trying to be inclusive by allowing the service user perspective 'specific expression' (Young 2000: 8), constructing this expression as inappropriate and self-interested. In contrast, as such expression derives from people's locations within the social structure, this 'situated knowledge' could be considered a valuable resource for democratic discussion (ibid). The problem, however, is that although such rule-breaking may, as discussed above, be regarded important in itself in giving voice to experiences and in highlighting and challenging official constraints, in terms of the outcomes of the meetings, the epistemic framework and bureaucratic conventions of service planning and policy making processes meant that these challenges could not be effectual (Barnes 2002; Hodge 2005; Little et al. 2002). Consequently, allowing service users to break discursive conventions in this manner was seen by this respondent to be 'patronising'.
Agenda-setting7.1 The above state of affairs with the 'rules' of user involvement meant that overall this was characterised by the setting and maintaining of narrowly-defined agendas. Inevitably these were often driven by service and funding agendas and dictated by national mental health policy initiatives. For example, at the time of my fieldwork the Scottish Executive's 'See Me' 'anti-stigma' campaign was one particularly high profile initiative which service users were encouraged to support. However, many were in fact averse to the initiative, viewing it as misinformed in its attempt to 'de-stigmatise' (rather than challenge) psychiatric labels, or viewed the campaign as an ineffective public relations exercise and as misdirected:
Stigma. Everybody says it's a good thing, you should have a stigma campaign, 'See Me', you know; is that a good thing, or is it a load of bullshit to make it look like they're doing something? (. . .) Who should these anti-stigma campaigns be directed to? I think towards health professionals, towards psychiatrists, to stop always seeing people as sick people who can't be trusted, you know. (Andy)
7.2 The various groups in the statutory sector, particularly policy and planning groups, therefore did not seem to be addressing the priorities of many service users, and control over policy foci, and thus over the terms of discussion in policy and user involvement fora, was a point of contention for some. For example, one participant commented, 'we may tinker at the edges of policies, we may be reactive but we cannot be proactive' (Peter).
7.3 Concordant with other research (e.g. McDaid 2009; Rutter et al. 2004), the aspirations of some participants went beyond improving and extending service provision and (re)establishing a user empowerment body (one point of discussion was the desirability of a community-based forum or a Patients' Council), towards the development of services based on alternatives to the dominant bio-medical paradigm, such as community drop-in centres offering holistic therapies, counselling and support. However, they fell outside the parameters of debate of public user involvement and institutional policy and planning fora. The remit of the latter did not include a wholesale redesign of services, and furthermore, such aspirations represented a political and 'fundamental epistemological challenge to the institutions and professions that constitute the mental health system' (Hodge 2005: 169). Consequently, they could not be afforded formal consideration.
7.4 Indeed, what was striking in all of the meetings attended was the lack of attention to the social causes of mental distress/illness and the implications of these for services (see also Lewis 2009b). This omission can similarly be accounted for in terms of the normative framework, institutional order and constraints of mental health services (see Carr 2004, 2007; Parkes 2002; Rutter et al. 2004). As Williams (1996: 312) points out, taking account of social inequalities and mental health 'undermines one of the prime social functions of mental health services, which is to re-name and manage the psychological damage and distress caused by social inequalities'. Further, it undermines their power base and people working within services may lack understanding of how knowledge about social inequalities can be used to inform service approaches (ibid). As a result, these understandings remain outside, or at least marginal to, the service development process.
7.5 One participant described how this institutional context meant there was something of a conspiracy of silence about the field:
R. The phrases you hear in the mental health system time and time again are "watch what you say", you know, "don't rock the boat", "watch what you say in front on her" (...)
I: But why not rock the boat? I mean, why would that be a bad thing?
R: Because there's a gigantic industry that people depend on for their livings. I mean the hospital up there, you can hardly notice the patients.
(Discussion with Andy)
7.6 This kind of conspiracy of silence was also highlighted by one woman interviewee who, after describing speaking out during a group meeting about her inpatient experiences stated, 'People know this happens.' However, fear often prevented people from raising their concerns. Resonating with other evidence on user involvement (e.g. Glasby et al. 2003; Wallcraft with Read and Sweeney 2003), one male participant described how many people's silence could be attributed to the 'stressful' nature of speaking out in the context of fear of exacerbating mental health problems and of the power of the mental health system, while a female participant described how concerns that her mental illness identity would delegitimize comments had dissuaded her from raising an issue at a community group meeting (see Lewis 2009a).
7.7 Moreover, agenda-setting also operated in a hidden fashion through the means of 'available' discourses in the field - in both the real and social senses. Indeed this was the most latent 'rule' for behaviour (Lukes 2005); some discourses were prevalent, accepted, and therefore easily accessed or adopted, whilst others that were challenging or alternative to these remained marginal to the discourse order, and thus were less easily taken up. With regard to the nature of the problems the services were addressing, the discourse of 'mental illness', invested in individualised biomedical or psychological terms was dominant and acted as a 'reality constituting practice' (Gubrium and Holstein 1994) in the field. It worked to 'constitute the given' through constructing social belief - the legitimacy of forms of knowledge and structuring systems in society and, thereby, the symbolic power of psychiatry (Bourdieu 1992: 170; see Crossley 2004).
7.8 The power of the discourse of mental illness came from its social acceptability (Bourdieu 1992) as a way of understanding often very frightening and potentially stigmatising experiences and because it provided a way of legitimising demands on the state among those whose lives had been impacted by these (see Cresswell and Spandler 2009, citing Sedgwick 1982). Some service user participants also described how publicly this was the only option available since the espousing of alternative understandings, such as existential, socio-cultural or socio-political ones, which sometimes surfaced during research encounters when the matter was specifically raised, risked being interpreted as a sign of 'illness'. The dominant discourse of mental illness was therefore maintained by its practical uses and its everydayness, along with a fear of madness . It provided a 'working consensus' and definition of the situation that enabled the production of the discursive practices of user involvement. These, in turn, served to reify psychiatric understandings and to reinforce the power of the discourse of psychiatry.
7.9 The occlusion of certain discourses was also evident at other times when it seemed I had 'uncovered' during research encounters ideas or understandings generally not displayed in the more public spheres of user involvement, including those relating to gender (see Lewis 2007). On one occasion, experiences of sexual and domestic violence, which are prevalent among those seeking help from mental health services, especially women, and both a cause and consequence of unequal gender power relations (Patiniotis and White 2011; see also Stefan 1996), were raised by a woman attendee at a service user group meeting. Yet this issue generally remained unaddressed in the field, as did the broader issue of gender (see also Lewis 2007; Cotton and Lewis 2011). Indeed, one incident which demonstrated gender perspectives to be socially unacceptable and seemingly disallowed within the discursive conventions of the field arose during a community group meeting when there was discussion with a mental health promotion officer of a poster comprising the shape of a white male head and the slogan 'have a healthy mind'. Towards the end, one woman service user commented, 'Why is it a man's head?', a question that led to reactions of denial, indignation and embarrassment on the part of the presenter and chairperson. In this manner the issue soon became discounted as the two engaged in the kind of 'reality work' (Gubrium and Holstein 1994) that maintains the androcentric bias of mental health services (and of constructions of 'mental health' more widely) and contributes to the overlooking, and therefore reinforcing, of gender inequalities within these, as considerations of gender are treated as incidental or peripheral and unworthy of serious discussion.
7.10 In response to this agenda-setting for user involvement, several participants expressed the view that the discussions surrounding user involvement activities were 'diverting attention from the core issues' or even making matters worse by working ideologically to create an illusion of change but failing to 'ask fundamental questions' (for example in challenge to bio-medical approaches). A need for service users to set their own agendas for change was therefore expressed:
If we continue to be only reactive to what the professionals put in front of us in these committee meetings and groups, we will never have influence, we will never be able to exert fundamental change, we will never be able to get what we are asking for because we're not asking for anything. (Peter)
7.11 The anomaly this participant refers to was to some degree the outcome of tensions in public participation initiatives between the radical democratic discourse of developing 'citizen centred services' and the discursive model of civil society in which this involvement becomes a technology of legitimation for existing policies (Williams 2004; see also Carr 2007). As Williams (2004) found, decision-makers may deal with this tension by encouraging public 'support on pre-existing organisational agendas', so problems will occur 'when citizens introduce new agendas by breaking or manipulating the rules of participation' (para 4.1). A range of strategies, including ignoring or disparaging the alternative agenda may then be used to reinstate the original agenda. In the face of this, the participant above was advocating 'democratic agency' in which people 'do not just participate within existing debates but challenge their terms' (Bassel 2011a: 16). Indeed, the involvement of service users in the formulation of policy agendas was advocated by many service user participants, and to achieve this aim, some felt it necessary to outwardly politicise issues through collective means such as a national pressure group able to address 'really important questions.'
Discussion and conclusions8.1 User involvement in mental health services in the study locale had opened up fora in which service users engaged in struggles for voice and for institutional space (see Bassel 2011a; Bassel and Emejulu 2010). In doing so it was expanding the possibilities for discursive contestation in the field and helping to broaden its discursive terrain. Yet, concurring with other research (e.g. Carr 2004, 2007; Hodge 2005; Hui and Stickley 2007; McDaid 2008; Rutter et al. 2004), it was evident that the discourse order of the field was characterised by containment of service user contestation and control over discursive boundaries, and thus by silences. This control was produced through the structural constraints of user involvement operating within a bureaucratic, hierarchical and patriarchal institutional order and was institutionally imposed, especially by those in positions of authority in the field, through the 'rules' of participation. These rules both reflected and constructed inequalities of institutional status, legitimacy of participation and voice between service users and providers, which were bound up with wider social inequalities (see also McDaid 2009). Consequently, the silences were indicative of a democratic deficit, being particularly noticeable among service users who were further marginalised on the basis of gender, class and age, while members of minority ethnic groups remained unrepresented within the user involvement activities (see Bochel et al. 2007; Wallcraft with Read and Sweeney 2003). The discursive means through which this social order was maintained also included the conventions of the field and the normativity of psychiatric discourse and existing service approaches and provision, which were powerful in their effects. As such, the absences and silences often seemed to go unnoticed in the user involvement fora, forming what Bourdieu (1992) refers to as the 'doxa' of the field - that which is taken-for-granted and remains unsaid. They were evident in the research though from the ways in which discourses drawn upon could vary according to setting and speech genre, and the influence of context and relational form on 'permitting' participants', especially less vocal participants' understandings to emerge (see Lewis 2007), and on occasions when service users did interrupt silences and speak out, thereby challenging the discursive boundaries of the field. However, the structural and discursive organisation of the field meant that the service user and community groups themselves constituted bounded spaces in which such challenges were confined, and these groups did not have any formal, decision-making power. Consequently, there were 'structural, communicative and jurisdictional impediments to political equality and fair outcomes' from user involvement (Young 2000: 4), and evidence of service user influence on actual decision making in mental health service planning in the locality was not apparent.
8.2 Hodge (2009: 260) notes that the increasingly diverse and sophisticated ways in which service users' perspectives are becoming incorporated into service development, including in the area of mental health, although flawed, are valuable in providing '"sluices" into the administrative state from the public sphere'. Yet this research demonstrates how user involvement can serve to both constrain and contain service users' voices and influence and work to defend the interests of powerful groups and to resist organisational change (see also Carr 2007). It evidences the unequal conditions for participation in the field both for and among service users, and the ways in which the discursive framework surrounding user involvement can undermine participatory democracy within its fora (see also Carr 2007; Lewis 2009a, 2012; McDaid 2009; Hodge 2005; Rutter et al. 2004). It shows how the 'rules' of user involvement and the operation of dominant discourses in the field of mental health can work to set the agenda and to forestall 'the possibility of [service users] exercising meaningful power in constructing the context' (Bassel 2011b) for the discussion of mental health and mental health services. The findings illustrate how:
dominant ideas can silence alternative meanings and marginalise social issues which are not within their field - such as gender inequality, (...) [excluding] different interests and the possibility of legitimate dissent (...) [and] marginalising those who might gain greater power from critical engagement. (Women's Resource Centre 2010: 12)
8.3 The study illustrates how user involvement can leave service users' views overlooked within policy and planning arenas and how 'much user involvement has only been able to operate within existing frameworks' to the exclusion of new ideas (Beresford 2005: 37; see also Glasby et al. 2003). Following Bourdieu (1992), it illustrates how service users' discursive political practices were regulated and bounded by pre-existing power structures which delimited their influence and actions in the field. More broadly, the findings illuminate the institutional operation of hegemony - or ideological and political dominance - which works in any particular arena of social life through imposing a normative order and definition of reality within which social action is conducted. Dimensions of social organisation and inequality, including those of gender and social class, are interwoven with institutional practices and norms, rules for behaviour and so on (Lazar 2005) so that 'a major source of power for dominant groups is simply the routine operation of social institutions' (Ng 1980: 14).
8.4 The need for policies and practices of user involvement to take account of social inequalities is now widely recognised. However, echoing Bassel (2011a, 2011b), this research calls into question the capacity of user involvement policy 'to accommodate multiple and intersecting inequalities' (see also Young 1990). It also highlights the issue of latent power (Lukes 2005) operating through the ways in which discursive practices are not only constrained but also shaped by the systems of power in operation (see Lewis 2007, 2009b, 2012; Roberts 2010; Stickley 2006) and the ways in which user involvement can serve a social control function which contradicts any progressive aims. It illustrates Bourdieu's (1992) argument that the social struggles of subordinate groups within the confines of existing institutional and social orders tend to reproduce social structures through maintaining the capital and interests of those in positions of more power. Challenges from 'outside' the field, for example from those with governmental power, and symbolic struggle to challenge the ideological basis of the social order are therefore required to achieve social change (ibid). These findings have important implications for user involvement policies, approaches and politics in the field of mental health.
8.5 At the level of strategic policy making, they indicate the need for a conducive context and a more radical approach if the policy initiative is to improve decision-making and produce progressive mental health service development, in line with its aims. As outlined earlier, there are elements of the current UK mental health policy context which are unfavourable to the progressive development of user involvement, beyond a consumerist approach. However, mental health and well-being is framed in national policy as an area of universal concern (e.g. Her Majesty's Government/Department of Health 2011) and is a pressing, international social policy issue (World Health Organisation 2005). Moreover, there is presently a climate of public debate surrounding mental health (see e.g. Burns 2013) and elements of this speak to the concerns of the service user/survivor movement. This includes public disillusionment with mental health services (see Crawford 2012; Crawford et al. 2013) and assertion by the British Psychological Society, in the face of publication of a new draft of the American Diagnostic and Statistical Manual (V), of the need for social perspectives to inform mental health service responses and 'a paradigm shift in our understanding of mental distress' (BPS 2012). This is therefore a context in which the actions of service user and survivor groups, based on collective, ideologically driven politics, working with allies and speaking to public concerns, as a strategically rational deliberative process (Hodge 2009; Lewis, 2009a, 2009b) may help deliver meaningful change.
8.6 One area in which there is potential for progressive development of user involvement at the strategic level of mental health services planning and development is in the structures of the new NHS Clinical Commissioning Groups. The use of values-based commissioning has been advocated for these Groups (Perry et al. 2013) and in this context, a model of 'co-governance' may be employed to enable an expansion of dialogue and interrupt the balance of power (Bourdieu 1992). In this approach, policy makers and activists 'participate in at least two arenas - that of their own movement and that of established power, draw[ing] their strength and autonomy from their own organisations, which enable them (in principle) to deal with the mechanisms of hierarchical governance without being subverted or corrupted' (Bochel et al. 2007: 207). Following Young (1990, 2000), to achieve the standard for participatory democracy, this institutional mechanism for user involvement needs to be accompanied by 'public resources supporting self organisation' of members of groups that are oppressed or disadvantaged and require representation (Young 1990: 184), while ensuring their independence. It also requires 'group analysis and group generation of policy proposals' by these organisations and an obligation for the decision-making process to show that their perspectives have been taken into consideration (Young 1990: 184). In addition, the organised groups need their own systems of engagement and accountability and, along with the decision-making bodies, to attend to social differences in the pursuit of the most just decisions for action (Young 2000). Such an approach can help to ensure the achievement of meaningful and effective policy and institutional responses to user involvement imperatives and, fundamentally, the observation of human rights principles in the field of mental health services (see Lewis 2009a, 2009b).
AcknowledgementsI am grateful to those who participated in this research, to Professor Linda McKie for helpful comments towards the analysis, to two helpful reviewers for comments on an earlier draft of this article and to the UK Medical Research Council for funding the study. The writing of a first draft of this paper was supported by an Economic and Social Research Council/Medical Research Council Post-Doctoral Fellowship (ref. PTA-037-27-0055).
Notes1The term 'survivor' is used to denote survival of both distress and service usage, while 'service user' is the widely-used term within the context of mental health services in the UK.
2'Discourse' is a multi-dimensional concept. It can mean a way of understanding or set of ideas about a particular phenomenon, produced through language and social interaction, that works ideologically in conjunction with other elements of social practice (Fairclough 1992, 2001). However discourses are often associated with particular social discursive domains and combine in particular ways, so that we may speak of 'psychiatric' or 'medical' discourse, for example. This is Foucault's conception of discourse as 'knowledges' and as the totality of interactions in a given domain (Fairclough 2001). Following CDA, this study employed this twofold conception.
3Interviewees have been given pseudonyms. Unless otherwise indicated, quotations are from service user participants. Transcribing conventions: 'R' indicates 'respondent' and 'I' interviewer; (. . .) missing text; square brackets added text, or text replaced for the purposes of anonymity; and italics emphasis.
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