User and Carer Involvement in Change Management in a Mental Health Context - Book Summary - United Kingdom Literature - Diana Rose, Summaries of English Literature

Download User and Carer Involvement in Change Management in a Mental Health Context - Book Summary - United Kingdom Literature - Diana Rose and more Summaries English Literature in PDF only on Docsity! © NCCSDO 2004 1 User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature Report to the National Co-ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO) November 2002 (revised November 2003) prepared by Diana Rose Pete Fleischmann Fran Tonkiss Peter Campbell Til Wykes Address for correspondence Diana Rose/Pete Fleischmann Service User Research Enterprise (SURE) Institute of Psychiatry De Crespigny Park London SE5 8AF E-mail: [email protected] or [email protected] Telephone: 0207 848 5066 User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 2 Contents Acknowledgements 6 Executive Summary 7 Origins and context of the review 7 Methods 7 Mapping the terrain 8 Promoting democracy, representation and cultural change 9 Strategic planning, restructuring and new policy initiatives 10 Change management, new service provision and user involvement 11 Theoretical frameworks 11 Discussion 13 Conclusions 16 Recommendations 20 The Report 21 Chapter 1 Introduction 21 1.1 Origins of the review 21 1.2 The policy context 22 1.3 Previous work 23 1.4 Structure of the review 25 Chapter 2 Methods 27 2.1 Definition of user/carer involvement in change management 27 2.2 Literature sources 28 2.2.1 Electronic databases 28 2.2.2 Existing research archive 28 2.2.3 Reference group 28 2.2.4 Comparative review: Health Service Journal and Openmind 28 2.2.5 Snowball searching 29 2.3 Search terms 29 2.4 Exclusion criteria 29 2.5 Initial search results 30 2.5.1 Electronic databases 30 2.5.2 King’s Fund Library 30 2.5.3 Existing archive 30 2.5.4 Literature pertaining to carers 31 2.5.5 Reference group 31 2.6 Refining the searches 31 User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 5 Recommendations 117 References 118 Appendices 128 Appendix A Coding frame 128 Appendix B Reference Group 130 Appendix C Themes that emerged from the reference group 132 User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 6 Acknowledgements We would like to thank Krissi Hodgson for her help in collecting together and referencing the literature considered in this review. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 7 Executive Summary Key themes and messages Origins and context of the review This review examines the literature on user and carer involvement in change management in organisations in a mental health context. It was funded by the NHS Service Delivery and Organisation R & D Programme. The review team included user and professional researchers. User and carer involvement in health and social services has been a theme of government policy for over two decades. During this period users and carers have become increasingly active in the development and delivery of services. Methods This review examines literature about user and/or carer involvement in managing organisational change within mental health services. It examines how users and/or carers have been consulted about or involved in creating or implementing changes at the level of procedures, organisational structures, service design or delivery. Such changes include: • issues of democracy, representation and consultation • changes in the mission or profile of organisations • changes in organisational culture • restructuring of organisations • new policy initiatives • changes in service provision or delivery. Literature was accessed from a range of electronic and archival sources. Following advice from a reference group formed of users and carers, a coding frame was devised. Over 850 abstracts or papers were considered for the review; 112 papers were included in the final corpus. These papers were coded in relation to the central research themes: • tracking modes of user/carer involvement • types of organisational change • factors facilitating or impeding involvement. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 10 literature as critical for effective change management, it can be difficult to research cultural change and its outcomes in an empirical manner. This section focuses on papers that identify the promotion of democracy and representation, or cultural change, as distinct or ‘stand-alone’ types of organisational change. Our larger review suggests change tends to be most successful when ‘soft’ change at the level of organisational culture (which often is gradual and hard to measure) occurs together with ‘hard’ changes in organisational structure, systems and services. In this respect, the literature goes beyond approaches that see representation or a supportive culture as organisational ends in themselves, to consider if and how representative structures and cultural factors shape the management of other types of organisational change. Strategic planning, restructuring and new policy initiatives Strategic planning in the UK took a ‘consumerist’ turn with the advent of the purchaser/provider split in 1990 in health and social care. The practical literature reviewed here generally describes mechanisms for consumer feedback into the planning process and less often representation on planning committees. It is not clear if the former ever has a meaningful influence on planning even to the extent of increasing the range of options from which consumers may choose. Writers from a professional perspective express concern that users, particularly mental health service users, will be over-zealous in their demands while writers from a user perspective express concern that their efforts are not appreciated. Much has been written about the transition from institutional to community care but the literature reviewed here specifically concerns the place of user involvement within this transition. The more over- arching reports emphasise material, organisational and cultural obstacles to the possibility of users and user groups having a real influence on the shape of the new community services. Papers which describe more local initiatives are more mixed in their views about what is necessary to successfully manage change at the levels of restructuring and/or the implementation of new policies influenced by a user perspective. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 11 Change management, new service provision and user involvement The provision of a new service or the delivery of an existing service in a new way is usually a radical form of organisational change requiring new ways of working from managers. It is particularly radical if it involves service users themselves as the providers of the new service rather than simply as groups that are consulted about a new service. If the new service exists within mainstream services then it will only be successful if other forms of organisational change – including cultural, attitudinal and structural change – are also brought about. If the new service exists as a user-controlled organisation in parallel to mainstream services there may still be involvement of the mainstream management in the form of grant aid, contracts and monitoring. Many papers reviewed in this section make mention of resources and secure funding – rather than rolling one-year contracts – as vital to the success of new services. The papers reviewed in this chapter represent probably the ‘hardest’ form of user involvement in change management encountered in the literature. The examples often involve the employment of service users as staff and/or the setting up of user-led services. These projects arguably pose a greater challenge to managers than initiatives which aim to promote democracy and representation or cultural change. This is because the employment of service users or the development of user-controlled services can represent a fundamental shift in service patterns. However ‘softer’ changes such as widening representation or engaging in cultural change may be a prerequisite for the successful execution of more far-reaching developments. Theoretical frameworks Models of user involvement There are several models of public participation that are often conceptualised as ‘ladders’. The best-known of these is Arnstein’s ladder of citizen participation (Arnstein, 1969). Our model of user involvement, developed in our coding frame, draws on Arnstein’s ladder but has been modified in light of developments in user and carer involvement in mental health, and recent critiques in the academic literature. The typology marks a break between concepts of consumerism and citizenship. Consumerist thinking maintains that users of public services can exercise choices through the health care User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 12 ‘market’. Approaches to citizenship position users and carers as citizens to whom public bodies are accountable and who have a role in determining wider social and political processes. Stakeholding, consumerism and citizenship The language of stakeholding is increasingly evident in the literature on user and carer involvement. It is important to ask what constitutes a ‘stake’ in this context, as well as to recognise the very differently weighted ‘stakes’ that various actors have within organisations. A central framework for analysing the stakeholder relation in mental health services turns on the distinction between users and carers as consumers and as citizens. Consumerist approaches to user involvement are most often concerned with the detail of service provision, rather than with strategic, service and organisational planning. The aims of user movements, however, are not always consonant with or limited to consumerist interests. Service users may have a dual identity as consumers of services, and as citizens to whom such services are accountable. The limited rights of ‘exit’ or ‘choice’ available to many mental health users mean that they cannot be understood simply as consumers of services, however empowered. The user movement calls for a more robust range of citizenship rights than those found in the customer relation. Such a conception of users as citizens both challenges a view which positions users as ‘passive recipients’ of services, and equally challenges models of the ‘active citizen’ based on the figure of an independent volunteer. User movements are not concerned only with pursuing service needs nor simply with articulating citizen rights, but also can represent a social movement that seeks to re-define the marginalised identities of mental health service users. User involvement as a technology of legitimation Strategies of user involvement can work to reinforce the power of professionals and managers. This is especially the case where the ‘user card’ is played strategically so as to bolster certain professional interests against other organisational interests. Furthermore, in a ‘pluralistic’ or network model of public service stakeholding, users become one of many different interests. Their demands must be offset against those of other (including more powerful) stakeholders. Managers retain power at the centre of a network mediating the competing interests of professionals, users, carers, the public, and political actors. A shift from top-down hierarchies to more inclusive networks or markets in the organisation of public services in these ways can produce new techniques for legitimising managerial and professional power. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 15 Power differentials Much of the literature reviewed makes reference to power differentials and these are perceived as an important obstacle to user and carer involvement in change management. At one level, such a finding seems quite simple to interpret, since it is obviously the case that most professionals have more power and status than do users and carers. However, issues of power operate on a number of different levels. There may be conflict, for example, between users who wish to establish more equitable ways of working and hierarchical and structural obstacles in mainstream services that militate against this. Power may also operate in mental health in quite subtle ways – as in the pathologisation of complaints where users attempt to exercise a right of ‘voice’. Structural inequalities in society are magnified in the power differentials that exist in a mental health context. Those groups disadvantaged in society as a whole – poor people, those from ethnic minorities and women – are over-represented in psychiatric facilities. Those who make the final decisions about their treatment – psychiatrists and psychologists – tend to reflect the opposite pole of the social strata. Conversely nurses and other social care workers occupy a lower professional (and by extension social) status. Of the groups with whom they come into close contact, only patients are coded as lower status. So, community and hospital nursing and support staff may have a vested interest in maintaining the power differentials between themselves and their clients. The experiential knowledge of users may be valued for its authenticity but when set beside forms of knowledge which can claim the status of ‘evidence’, that authenticity occupies second place. In addition, the direct experience of users and the way it is expressed may sometimes be dismissed as too distressing or disturbing. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 16 Processes in change management The processes of user and carer involvement in change management can be as important as the outcomes. It is a mistake to assert that conflicts should or can be resolved before a process of change is begun. Power differentials between users and professionals and differences in perceptions of satisfactory outcomes mean that conflict is to be expected. The tension between professional and user/carer discourses is a central justification for user and carer involvement. If all the actors in the change management process agreed, user and care involvement would become largely redundant. The management and resolution of conflict is an ongoing function of change management. User involvement as ‘therapy’ A citizenship or rights-based approach challenges professional assumptions that the purpose of user involvement is largely ‘therapeutic’. If resistant professional and organisational cultures emerge in our review as the chief factor constraining user involvement in mental health, there is also an argument to be made that some ‘supportive’ professional attitudes can limit the impact and effectiveness of user participation by reducing this to individual therapeutic outcomes. That is, user involvement may be endorsed by professionals as performing a therapeutic or rehabilitative function in enhancing individuals’ skills, competence and self-esteem. In contrast, understanding user involvement in a social movement or citizenship framework emphasises larger objectives of organisational change, of transforming social attitudes, and of gaining political recognition. Some parts of the ‘user movement’ may be engaged in a form of ‘identity politics’ similar to feminism and movements promoting gay rights. Conclusions The literature assembled presents a complex picture of user and carer involvement in change management. It is very diverse and of variable quality. Our review suggests that the role of organisational culture is key in both facilitating or impeding user/carer involvement in change management. Change tends to be most successful when ‘soft’ change at the level of organisational culture occurs together with ‘hard’ changes in organisational structure, systems and services. There is a danger that government demands for agencies to demonstrate user involvement may mean that user activities become a User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 17 formal procedure to be ticked off, rather than an embedded and powerful organisational practice. The threat posed by user involvement means that changes often have remained very much at the level of tokenism. Mental health users have a stake in how organisations operate internally, as well as in service quality. Models of change management generally position service users as external stakeholders. Mental health users, however, tend to be more involved or ‘embedded’ in organisations: the structures and processes through which services are delivered are therefore a legitimate interest on the part of users and carers. There can be tension between workers and users/carers. Managers and other staff may see user involvement as both of value and a threat. One way of understanding this is as a conflict between staff and managers’ desire to implement a rather limited consumerist agenda and the hunger of many users to reclaim their spoiled identity and reassert themselves as citizens. User involvement in change management will work best when frontline staff and other stakeholders are also meaningfully engaged in organisational processes. However conflicts will inevitably arise between the various actors. The literature suggests that the employment of service users as practitioners and the development of user-controlled services are more prevalent in USA and Canada. These practices are at the cutting edge of user/carer involvement in change management and present the greatest potential challenges and rewards. UK services are developing in this direction and it would be prudent to learn as much as possible from the American and Canadian experience. Further user-led research is required to establish reliable outcome measures for user and carer involvement in change management. Such measures must incorporate the important role of processes and the difficulty of measuring cultural changes, and acknowledge that different stakeholders will have different perceptions of what represents a positive outcome. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 20 Recommendations 1 User and carer involvement should be adequately and sustainably resourced. This includes supporting autonomous groups and paying individual users properly for their time. 2 Organisations need to strike the right balance between supporting user and carer involvement and allowing user and carer groups to remain autonomous. 3 Training of staff by users is an important factor to facilitate user involvement; training of users is also important. Research is required to determine how such training can be delivered most effectively. 4 User involvement in change management should begin at the earliest possible stage of a project and should be maintained at every subsequent stage. Users should be engaged not only in consultations prior to change programmes, and in evaluations of change outcomes, but in organisational processes of change management. 5 A high-quality information strategy is essential to user and carer involvement. Organisational governance and decision making should be as transparent as possible. 6 Power differentials need to be acknowledged, understood and sensitively managed. 7 Change management processes need to be adapted to ensure they are accessible to service users, including making all reasonable accommodations for the partic ipation of people experiencing mental distress. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 21 The Report Chapter 1 Introduction 1.1 Origins of the review 1.2 The policy context 1.3 Previous work 1.4 Structure of the review 1.1 Origins of the review This review examines the literature on user and carer involvement in change management in organisations in a mental health context. It was commissioned under the NHS Service Delivery and Organisation Research and Development Programme. The review team includes three individuals (Diana Rose, Peter Fleischmann and Peter Campbell) who have been active in user involvement since the 1980s. The team also includes Til Wykes, Director of SURE, who brings to the team a professional perspective of user/carer involvement in managing change, particularly in the area of mental health research. The SDO specifically requested that the theoretical literature also be examined and a sociological expert (Fran Tonkiss) was brought in for this part of the work. It became apparent at an early stage that there was no pre-existing or coherent body of work in this area and so a corpus of literature had to be built up from various sources. This corpus is extremely varied, ranging from one-page articles to entire books. It also became evident that the review could not in any way approximate a ‘meta-analysis’ as the literature is in the main discursive and the research it does contain very rarely includes measurable outcomes (cf. Rutter et al., 2001). The way in which the literature was compiled is described in Chapter 2. The discussion in this introductory chapter comprises three sections. First, we review the policy context for change in mental health services, concentrating on the UK but considering also North America and Europe. Second, we briefly describe existing overviews of user and carer involvement that are relevant to this work. We have identified three such overviews. Finally, the structure of the review is described. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 22 1.2 The policy context The National Service Framework (NSF) for Mental Health (Department of Health, 1999a) states that one of its core values is ‘user and carer involvement’. Subsequently Local Implementation Teams were set up to take forward the plans of the NSF and guidance stated that user involvement in these teams should be encouraged. Chapter 10 of the NHS Plan (Department of Health, 2000) is devoted to how user involvement in the NHS can bring about a ‘patient-centred service’. It proposes Patient Advice and Liaison Services (PALS) and many trusts now have these in place. It also proposes Patients’ Forums which would have an inspection role and hear complaints. Finally, there is a proposal for a user to sit on each trust board as a non-executive director. This is already in place in some mental health trusts. However, this focus on user involvement in health and social care is not specific to the present administration. The 1990 NHS and Community Care Act (Department of Health, 1990) introduced a market-based approach to health and social care by separating purchasing and provider functions. The patient or client was re- conceptualised as a ‘consumer’ and it was assumed that greater choice would be brought about both through market mechanisms (e.g. fund- holding GPs, case managers) and through consumer feedback which would direct the kind of services that purchasers would demand of providers. However, because providers were usually monopolies, this ‘market’ came to be known as a ‘quasi-market’. Developments in mental health included a Mental Health Task Force which included a user sub-group. This produced a Charter and a Code of Practice for Advocacy and held a user-only conference in Derbyshire in 1992. Following The Griffiths Report (1989), local authorities were obliged to consult users and carers in relation to their Annual Community Care Plans. The health and social care ‘quasi-market’ also placed an emphasis on the ‘end user’ of services and this was strengthened in 1995 with Building Bridges (Department of Health, 1995) which stated that all health and social care providers must implement the Care Programme Approach without delay and that users should be involved in their CPAs. The current administration has continued this focus on individual user involvement in care. It should be said that policy makers are not always consistent in their approach to mental health. Modernising Mental Health Services (Department of Health, 1999b) both promotes social inclusion and at the same time argues that ‘community care has failed’, citing homicides by people with a mental illness as evidence. Recent proposals for new mental health legislation (Department of Health, 2002) was seen as draconian by nearly all stakeholders. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 25 1.4 Structure of the review The next chapter, Chapter 2, is the Methods chapter. It describes how the literature was assembled and also how a coding frame was put together. Particular attention is paid to how a ‘ladder of participation’ was constructed, drawing on previous work but at the same time modifying it. A reference group, assembled to assist with the work, was particularly helpful in generating some of the coding categories. More details of the work of the reference group can be found in Appendices B and C. For each piece of literature, the coding sheets were entered into an SPSS file. The aim here was to ‘map the terrain’ of the literature and to generate a framework for exploring the substantive material in more detail. The results of the mapping exercise make up Chapter 3. There are three substantive chapters, which comprise another ‘ladder of participation’ in terms of the type of change described in the paper, report or book. Chapter 4 looks at material which only mentions either the ‘promotion of democracy and representation’ or ‘cultural change’. It is considered that such change, while important, represents the ‘soft’ end of organisational change. Particularly in terms of promoting democracy and representation, the material can be almost tautologous. It reports on measures to set up representative structures and which thereby are seen to achieve greater democracy and representation. A more substantive type of change is considered in Chapter 5. Here we take together changes in strategic planning, restructuring and policy initiatives. Often, material coded under one of these headings was also coded under a second, and sometimes all three were rated. There is a clear conceptual affinity between strategic planning and restructuring. When the papers were read in detail, it was often difficult to distinguish substantively between those rated as describing a new policy initiative and those rated under strategic planning or restructuring. Chapter 6 focuses on new service delivery or the delivery of existing services in new ways. On close inspection, this category frequently involved the employment of users as staff or volunteers. This appears as a specific, substantive and measurable organisational change, and one that can be seen to represent a significant challenge for change management. Chapters 4, 5 and 6 do not attempt to review each and every paper relevant to their substantive content. In the mapping exercise (Chapter 3), we examine the distribution of papers and reports across each coding category. We then take a sample of these to examine in the substantive chapters. These are purposive samples, since we have aimed to include the higher-quality reports at the expense of weaker ones. Higher-quality papers are those rated on our coding frame for inclusion in the review as 1 (Recommend inclusion) and 2 (Consider User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 26 inclusion). Approximately one-third of the total literature is discussed in the substantive chapters. Chapter 7 considers the theoretical literature. The chapter looks at both the change management literature and at the growing body of writing on the distinction between ‘consumer’ and ‘citizen’. This was thought to be relevant because the conceptualisation of patients and clients as ‘consumers’ with the introduction of the purchaser/provider split is now subject to increasing criticism in the theoretical literature. The chapter considers how the theoretical literature links to the research papers and practical discussions that make up the rest of the work reviewed here. Some papers also appear both in the theoretical chapter and elsewhere in the report, because they are relevant both theoretically and substantively. Chapter 8 is a short discussion chapter in which three main issues are addressed. The first concerns the distinction between ‘partners’ and ‘stakeholders’ and which of these concepts best describes user and carer involvement in change management today and why. The second question to be addressed is the ambivalence that runs through much of this literature and which focuses particularly on issues surrounding the involvement of users of mental health services in change management. Finally, we consider the argument that user involvement is of benefit to the mental health of the users who are involved and ask whether this means that many professional writers see user involvement in mental health as ‘therapy’. A different way of looking at this issue is proposed. There are 3 Appendices: ‘A’ detailing the coding frame the research team used to categorise the literature; ‘B’ describing the reference group convened to assist with research design and analysis; and ‘C’ discussing the analytic themes that emerged from the reference group. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 27 Chapter 2 Methods 2.1 Definition of user/carer involvement in change management 2.2 Literature sources 2.2.1 Electronic databases 2.2.2 Existing research archive 2.2.3 Reference group 2.2.4 Comparative review: Health Service Journal and Openmind 2.2.5 Snowball searching 2.3 Search terms 2.4 Exclusion criteria 2.5 Initial search results 2.5.1 Electronic databases 2.5.2 King’s Fund Library 2.5.3 Existing archive 2.5.4 Literature pertaining to carers 2.5.5 Reference group 2.6 Refining the searches 2.7 The coding frame 2.7.1 Models of user involvement 2.8 Inter-rater reliability 2.9 Selecting papers for substantive review 2.1 Definition of user/carer involvement in change management This review examines literature about user and/or carer involvement in managing organisational change within mental health services. It examines how users and/or carers have been consulted about or involved in planning or implementing changes at the level of procedures, organisational structures, service design or delivery. Such changes include: • issues of democracy, representation and consultation • changes in the mission or profile of organisations • changes in organisational culture • restructuring of organisations • new policy initiatives • changes in service provision or delivery. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 30 range of search terms yielded very few references prior to 1989, and only two texts published in 1988 were included in the final analysis. Other exclusion criteria were determined by the SDO’s research specification: firstly, services for children and older people fell outside the remit of the review; secondly, literature dealing simply with user/carer involvement in audit or evaluation was to be excluded from the study, given that the research brief was to focus on more substantive involvement in processes of change management. 2.5 Initial search results 2.5.1 Electronic databases Research into user/carer involvement in processes of change management represents a new agenda for enquiry. In initial searches, entering the search terms ‘user involvement’ or cognates together with ‘change management’ resulted in no ‘hits’ in any electronic database. This suggests that there is no pre-existing coherent body of literature on this subject, or that the literature has not been indexed in this way in the database catalogues. For this reason, a large number of proxy terms were used in searches. This in turn meant that the initial database searches generated a large number of references. After the removal of duplicates, approximately 850 abstracts were read by two readers and 150 papers were identified as relevant. Copies of these were obtained and read as the basis for the review. 2.5.2 King’s Fund Library This provides a source of ‘grey’ literature appearing in unrefereed journals, organisational reports, occasional papers and so on. Again, a search combining the terms ‘user involvement’ and ‘change management’ yielded no results. The abstracts of all references to user involvement were then inspected online and 20 identified as potentially relevant to the study. Later cross-referencing established that 8 were duplicates of results from the other electronic databases. 2.5.3 Existing archive An existing archive compiled for the review by Rutter et al. (2001) on user involvement in the planning and delivery of health care was searched for suitable references. The Rutter study was concerned with health services in general, and a sub-sample of 27 papers was identified as specifically relevant to the subject of change management in mental health services. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 31 2.5.4 Literature pertaining to carers Despite a specific search for literature about carer involvement in change management, only one-quarter of the literature included in the study made mention of carers. There were a small number of papers that dealt with carers only. 2.5.5 Reference group A reference group was convened to guide the project. Users and carers who are active in user/carer involvement and academic researchers with an interest in user/carer involvement were invited to join the group. The main input of the group was in the development of the coding frame used to analyse the literature, helping to specify different types of change; and factors tending to facilitate or impede effective change. Additionally, through the reference group we were also able to access pre-publication material (Wallcraft et al., 2002) and an unpublished thesis (Parkes, 2002). 2.6 Refining the searches Two readers read approximately 850 abstracts yielded by electronic and purposive searches. Full papers were then accessed where abstracts met the following inclusion criteria: 1 Date: 1987–2002 2 Language: English 3 User and/or carer involvement 4 Mental health 5 Change. While an extensive literature exists on user/carer involvement in mental health services, the greater part of this literature has not focused on processes of change or on issues of change management. Having met the five criteria, 156 papers were read in full and coded for inclusion on a four-point scale: 1 Recommend inclusion 2 Consider inclusion 3 Marginal – some insights 4 Reject. Inclusion at this stage was assessed by readers in terms of the paper’s empirical and/or theoretical relevance to the three key research concepts: user/carer involvement; mental health services; change and change management. A sub-set of papers was read by two readers and inter-rater agreement was 80%. Our aim was to be as broadly inclusive as possible, given that only a relatively small literature has explicitly User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 32 brought together user/carer involvement with issues of change management. At this reading stage 44 papers were rejected, mainly because the paper concerned audit or evaluation only, or were not sufficiently focused on questions of change; 25 papers were rated ‘marginal’ to the key research themes, but were included in the final database and fully coded. As explained in Chapter 1, these papers were less likely to be selected for the substantive analyses in Chapters 5, 6 and 7, unless they offered specific insights into given themes. The final number of papers included for analysis was 112. 2.7 The coding frame A coding frame was used to rate all the literature in terms of its relevance to the key research concepts, and as the basis for preliminary analysis of the literature. The coding frame was designed to incorporate for analysis the main themes of the review: as well as recording the type and source of the paper, coding categories covered modes of user/carer involvement, forms and drivers of organisational change, and factors facilitating or impeding involvement. The reference group made substantial input into the categories used in the coding frame, and the draft coding frame was revised following trial coding of a sub-set of 25 papers by two readers. In Chapter 8, Section 8.2, we discuss the differences between the categories that were elicited from a reference group active in user involvement activities, and those that appeared most frequently in what emerged as a largely professionally authored literature. A copy of the coding frame is included as Appendix A. At this stage, the categories relating to ‘models of user involvement’ warrant specific explanation. 2.7.1 Models of user involvement 1 Consumerism (individual) 2 Consumerism (collective) (a) Consultation (b) Representation (c) Partnership (d) Evaluation (e) Involvement in staff recruitment 3 Citizenship (a) Campaigning (b) User control User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 35 2.8 Inter-rater reliability The inter-rater reliability of the coding of papers was assessed with a sub-set of 30 papers. Two raters coded the material independently. Agreement was high at 79.9% when every coding category was included. Additionally, every paper or report was assessed by at least two readers to check for any inconsistencies or oversights in rating. 2.9 Selecting papers for substantive review The following chapter outlines a broad ‘map’ of the literature used in the review, based on frequency counts of categories in the coding frame. In the three subsequent chapters, we consider three clusters of types of change management, forming a continuum from a ‘soft’ systems approach to change management to more ‘step’ or ‘hard’ organisational changes. The three clusters are: 1 Promoting democracy and representation and/or cultural change 2 Strategic planning, restructuring and policy initiatives 3 New service provision and the employment of service users in organisations. For each cluster, we discuss in substantive detail approximately one- third of the literature selected for review. Papers were selected for this more detailed analysis on the basis of readers’ assessment of quality and research relevance. The most important category of literature here is those papers coded ‘Recommend inclusion’ due to their clear coverage of key research themes (user/carer involvement, mental health, organisational change), with an emphasis on papers with an empirical, evidential or practical orientation. Papers coded ‘Consider inclusion’ or ‘Marginal – some insights’ were included where they involved empirical or practical insights, or reported on specific issues of critical relevance – for example, papers that reflected issues of equality and diversity. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 36 Chapter 3 Mapping the terrain 3.1 Introduction 3.2 Type of paper, year, country and target audience 3.3 What drives organisational change? 3.4 Types of user involvement 3.5 Types of change management 3.5.1 Relationship between type of user involvement and type of change 3.6 Focus of the papers 3.7 What factors facilitate user/carer involvement in organisational change? 3.7.1 Relationship between facilitative factors and types of organisational change 3.8 What are the obstacles to user/carer involvement in organisational change? 3.8.1 Relationships between obstacles to user involvement and type of organisational change 3.9 Outcomes 3.10 Facilitation of and resistance to organisational change in relation to types of user involvement 3.11 Comparative literature review 3.12 Conclusion 3.1 Introduction In this chapter, we look in broad terms at the nature of the literature compiled for this review. The aim is to give an overall picture of the literature as a basis for the more detailed study in the following three chapters. In order to ‘map the terrain’ of the literature, the coding sheets for each paper, report or book were entered into an SPSS data file. This chapter reports frequency counts for the different categories (see Appendix A) and some cross-tabulations. Commonly, the frequencies add up to more than the total number of papers because more than one category was relevant under each sub-heading. Cross- tabulations were tested with chi-square to assess the significance of co-occurrence of categories. A significance level of p < 0.05 was used. Lack of a relationship between two factors does not mean that they never appear together. The test is simply one for random effects. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 37 3.2 Type of paper, year, country and target audience The final corpus of literature included 112 papers, reports and books. It includes a wide diversity of material ranging from one-page articles to entire books. Discussion papers dominate the literature – 61 discussing practice and 43 discussing concepts. Some papers discuss both. There were 34 qualitative research papers and 16 quantitative research papers. Only 6 papers were purely quantitative and this includes 4 trials. Research papers were sometimes situated in the context of discussion of concepts or practice. There were 7 organisational reports and 2 unpublished dissertations. With regard to date, 10 papers were published in or before 1991, 25 between 1992 and 1995, 36 between 1996 and 1998 and 41 between 1999 and the end of the period of data collection (October, 2002). The rate of publication of material in relation to user involvement in change management has therefore increased with time and this is most probably linked to policy changes. 71 papers and reports were from the UK and 42 from the USA or Canada. 1 was from Europe, perhaps reflecting our criterion of English- language material only, and 3 from Australia or New Zealand. 9 papers or reports discussed user involvement in change management in more than one country. Overwhelmingly, the papers targeted a professional audience, with 92 of the 112 being focused in this way; 44 papers addressed an academic audience but many of these overlapped with the professional audience; 26 papers were rated as addressing a user audience but only 8 of these were aimed solely at users. 3.3 What drives organisational change? There were 23 papers which did not state who or what was responsible for driving organisational change; 46 papers mentioned users or carers, 47 organisations and 45 policy and funding considerations. However, these were interrelated. Policy or funding was identified as the sole source of change in 10 papers, 20 focused solely on organisations as the drivers of change, and 11 on users and carers. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 40 canvassing of consumer opinion as part of the strategic planning process (for example, in relation to the development of community care plans). Many of these papers are also coded under ‘evaluation’. Individual consumerism is also strongly associated with new service provision and the employment of service users, as has already been discussed. When collective consumerism is mentioned there tends also to be mention of the promotion of democracy and representation, change of mission, restructuring, strategic planning and cultural change. The latter is particularly important. Collective consumerism can be seen as the means by which attempts are made to bring these forms of organisational change about at the level of groups of users and/or carers. Collective consumerism is also associated with the category ‘for purposes of display only’ implying that some authors judge that exercises in change management are not taken seriously by managers and other professionals and exist only at a ‘token’ level. Consultation is strongly associated with the promotion of democracy and representation and in this way the two form a virtuous circle. Consultation is also associated with strategic planning – as in the case of individual consumerism, above; consultation with user/carer groups is an increasingly standard element of planning processes. It is notable in this connection that the category ‘for purposes of display only’ is also associated with consultation; this is congruent with the arguments of Rutter et al. (2001). User involvement that takes the form of representation shows exactly the same pattern as for consultation although we know from Figure 2 that the absolute numbers of papers taking representation as their focus is smaller than for consultation. The category of ‘partnership’, which represents one of the higher rungs on our ladder of participation, shows no systematic relationships with any form of organisational change. However, the absolute number of papers here is small. This is even truer for the category of ‘involvement in staff recruitment’. Citizenship categories, like many of the other forms of user involvement, are associated with the promotion of democracy and representation. It is not clear, however, whether the form of democracy at stake here is the same as that for the consumer categories, or whether the consumer/citizen distinction involves a distinction between representative and participatory democracy. Citizenship is associated with change of mission, whereas none of the consumerism categories showed this relation. A change in the mission or profile of an organisation represents a fairly radical form of organisational change. Similarly, citizenship is associated with new policy initiatives, and also is related to cultural change. Campaigning as a user involvement activity shows the same relationships to types of organisational change as citizenship in general. User control is related to new service provision and weakly to the employment of service users. This tends to refer to services that are run or managed by User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 41 service users, and which may lie outside mainstream services or have only a weak relation to them. 3.6 Which groups do the papers take as their main focus? Figure 3 shows the number of papers which took as their main focus or foci the categories of individuals and groups shown in the coding frame in Appendix A. Figure 3 Frequencies with which specific groups are taken as a focus in the literature 0 20 40 60 80 100 120 1 Users Carers user groups Ugs informal Ugs formal Carer groups Public CHCs staff/professionals The dominant categories are service users, user groups and staff or professionals. Despite the fact that a specific search was done for carers, carers and carer groups figure far less frequently. Carers are rarely the sole focus of a paper (for exceptions, see Briggs and Koroloff, 1995; Mullen et al., 1992). Staff appear as a focus in the literature, not only because organisational changes require changes by staff as well as users, but because they are often implemented or administered by staff. This focus might also result from the bias in the literature towards professional authorship and audiences. Under the ‘special constituencies’ section of the coding frame, 13 papers have a focus on or include reference to ethnic minority communities, 10 on women, 4 on people who use substances, 6 on homeless people, 3 on acute care and 3 on older people. The papers referring to substance misuse and homelessness are all from North America. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 42 3.7 What facilitates user and carer involvement in organisational change? Figure 4 shows the frequencies with which various categories assumed to facilitate user and carer involvement in organisational change appear in the literature. Figure 4 Facilitation of user involvement in change management 0 10 20 30 40 50 60 70 1 User training Users as trainers Staff training Funding Other resources Pay users Representative structures Cultural change Information Other Among the ‘other’ factors promoting user involvement in organisational change were technical assistance, mentoring and advocacy, peer support and legislative changes. The most important factor for involving users in change management is, according to this literature, a facilitative organisational culture. Information provision or a strategy for providing information is almost as important. Resources are mentioned by almost half the papers and the resource categories cluster together. The training categories form a distinct cluster and refer to users training staff, although training users themselves also is important. When representative structures are mentioned as a factor facilitating user involvement in change management, a welcoming organisational culture also tends to be mentioned. However, the absolute numbers show that a facilitative organisational culture can be a positive source for change on its own. As we will argue below (see Chapters 4 and 7), formal representative structures in themselves appear as an insufficient condition for user involvement – they are most effective when embedded in a more broadly supportive organisational culture. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 45 factors. The pattern is particularly marked in the North American literature. The cross-tabulations showed that lack of autonomy hampers the promotion of democracy and representation, change of mission, strategic planning and restructuring. A resistant organisational culture is important in the literature but is only systematically related to two types of organisational change. The first is cultural change and so this time the circle is vicious and not virtuous. Secondly, all but one of the papers coded as ‘for purposes of display only’ also mentioned a resistant organisational culture. Perhaps this means that where organisational cultures are resistant to user involvement, change will only be tokenistic. The same pattern applies to power differentials and later there will be some discussion of the forms these take and how they operate. Factors pertaining to mental distress can mean that users require special support to engage in user involvement activities or it can take the form of the ‘coherence’ arguments of Simpson et al. (2002). Alternatively, a paper coded under this category may be concerned with the way references to mental distress are used to undermine the contributions of service users. This category was related to cultural change and the employment of service users. It also was related to the category ‘for purposes of display only’ and in these cases may mean that managers do not seriously believe that users of mental health services have the ‘coherence’ necessary for proper involvement in change management. 3.9 Outcomes The ‘outcomes’ in these papers and reports are hardly ever measurable ones. They are the writer’s opinion of what has worked and what has not. Given this, the majority of papers – 58 in total – indicated that the outcomes of user involvement in change management in organisations were unclear or not yet known; 52 papers mentioned positive outcomes and 14 negative ones. However, in all but one case, the negative outcomes were in the context of there being positive outcomes as well. This may be the result of publication bias. The type of outcome was not related to the type of paper. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 46 3.10 Facilitation of and resistance to organisational change in relation to types of user involvement There was variation in how factors facilitating or impeding user involvement in organisational change related to different types of involvement on our ‘ladder of participation’. • Individual consumerism appears in the literature as hampered by factors pertaining to mental distress. This is consonant with the relation found above between mental distress and the employment of service users, as we know that a number of references to individual consumerism are to users working as providers. It also reflects the possibility that mental distress may inhibit individual users’ involvement in their own care. • Collective consumerism, across all sub-categories, is hampered by lack of resources, lack of autonomy and a resistant organisational culture. Collective consumerism is enhanced when users act as trainers, when staff receive training, and when both material and non-material resources are in place. It is also helped by a facilitative organisational culture and representative structures. • Consultation is enhanced when staff receive training and resources are in place. It is strongly enhanced by representative structures and also by a facilitative organisational culture and a strategy for the provision of information. Consultation is hampered by lack of resources and lack of autonomy and relates weakly to power differentials. • Representation – the whole resource cluster is important for strategies of representation, including lack of resources as an obstacle. Representative structures are also highly important, which is not surprising because the meanings of the two factors overlap. The same factors inhibit representation as inhibit consultation, although here the relation with power differentials is stronger. Representation is not related to a facilitative organisational culture or to information provision and this is perhaps surprising. • Partnership is related to users as trainers and staff training implying that where partnership exists users are training staff. Partnership also relates to representative structures. Partnership is not related to any of the obstacles to user involvement. The factors that impede partnership have not been captured by the way we have coded our data. This may be because such a small proportion of papers focused on partnership. • Citizenship – factors that promote citizenship include the whole resource cluster, representative structures and a facilitative User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 47 organisational culture. The factors that inhibit the exercise of citizenship are lack of resources and lack of autonomy. Power differentials show a weak relationship. • Campaigning requires resources, both material and non-material. It is also enhanced, but only weakly, by a facilitative organisational culture. Campaigning is impeded by lack of resources and lack of autonomy. There is a tendency for papers focusing on campaigning to make mention of factors pertaining to mental distress which will be discussed more substantively later. • User control is strongly related to material resources and payment, for users. It is also enhanced by a facilitative organisational culture and by representative structures. In some papers, these may be representative structures within user- controlled organisations themselves. User control is impeded by lack of autonomy and, given the importance of resources, this may imply a dependency relationship on funders. There is a weak relation between user control and factors pertaining to mental distress. This will be discussed in Chapter 6. 3.11 Comparative literature review Alongside the main literature review, we undertook a smaller comparative review of a sample of articles appearing in two key journals across the time-frame of the study. The aim here was to consider both quantitative and qualitative changes over time in the coverage of user involvement issues in a professional journal and a user-oriented journal. In this part of the study, we reviewed 15 articles, news stories or book reviews in Health Service Journal (HSJ) and 31 in Openmind (OM) in the years 1989 and 2001. Comparing the two sample years, there was an increase in items reviewed. In HSJ there was a modest increase (from 6 to 9) and in OM a more significant increase (from 8 to 23). It was notable that the authorship of items differed between the two magazines. None of the items in HSJ was written by service users, whereas at least 11 of the 23 items appearing in OM during 2001 were written by service users. At this point OM could be seen to be reflecting significantly the viewpoints of a service user constituency. All the items in OM concerned change in mental health services, while a number in HSJ looked at health services as a whole. All the items reviewed were in favour of the involvement of service users in changing mental health services. Nevertheless there was evidence that different articles expressed different ideas about what service user involvement really meant. Thus, on a conceptual level, material from 1989 included one article in the HSJ (Pollitt, 1989) that talks about consumerism, while another, in the OM (Parker et al., 1989) talks in terms of empowerment and self-advocacy. In a third article, in the HSJ (May, 1989), a service user is quoted as saying ‘People who User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 50 3.12 Conclusion This chapter has provided an overall picture of the change management literature analysed according to our coding categories. In the next three chapters, we take clusters of types of change management and review them in more detail, based on a selected sub- sample of the literature. The clusters move from the ‘soft’ end of change to the more challenging end. The first cluster comprises papers which focus on promoting democracy and representation and/or cultural change, and forms the subject of Chapter 4. The second cluster focuses on strategic planning, restructuring and policy initiatives, discussed in Chapter 5. The final cluster concerns the provision of new services or new modes of service delivery, including the employment of service users as providers: these types of change are discussed in Chapter 6. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 51 Chapter 4 Promoting democracy, representation, and cultural change 4.1 Introduction 4.2 Strategies of representation 4.2.1 User involvement in staff recruitment 4.2.2 Involvement in service planning and strategy 4.2.3 User committees 4.3 The impact of professional cultures 4.4 Organisational management 4.5 Cultural diversity and cultural competence 4.6 Conclusion 4.1 Introduction Over 50 per cent of the literature we surveyed focused on organisational change in terms of the promotion of democracy and representation, and changes in organisational culture. In this chapter we discuss these modes of change in relation to a sub-sample of the literature surveyed. There is an important distinction to be made here between democratic or cultural change as an end in itself, and as a factor which facilitates other types of organisational change – especially new forms of service delivery or strategic planning. In the majority of cases, democratic or cultural change represented ‘stand- alone’ changes; the significant exception was the case of strategic planning, which was correlated with the promotion of democracy and representation – partly due to the way that user consultation and representation is built into planning processes. Our coding frame considered issues of user representation at a number of levels: as a mode of user and carer involvement, as a type of organisational change, and as a factor facilitating user and carer involvement. Enhanced representation might in this sense be seen as a form of ‘transactive change’ (Lord et al., 1998), that is, an intervention at the level of organisational processes that itself can promote change in a wider sense. Similarly, organisational culture appeared as the most important factor in promoting user and carer involvement in change management, as well as the most prevalent site of change. The promotion of democracy and representation and cultural change both form part of a ‘soft systems’ approach to change management that stresses the role of organisational values and norms in fostering or impeding effective change (see Chapter 7, Section 7.1.4). The discussion in this chapter is based on a sub-sample of 15 papers. The bulk of these are discussions of existing practice, with just 5 reporting on original research (2 of these – Bowl, 1996a and 1996b – User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 52 comment on the same research). We focus on the research findings in greatest detail here, drawing on discussion papers to introduce or emphasise key conceptual themes. This relative lack of research evidence might be indicative of the difficulty researchers have in operationalising such categories as ‘promoting democracy’ or ‘cultural change’ in empirical contexts. There were 11 papers published in the UK, 3 in North America, and 1 in New Zealand; 3 papers deal specifically with carer involvement in mental health services, while 2 (one UK and one US) are concerned with ethnic minority users. The papers tend to replicate the larger patterns we found in the study, including a descending ‘ladder of participation’ which sees consultation occurring with greater frequency (11 papers) than representation (9 papers), partnership (2 papers), evaluation (2 papers), or involvement in staff recruitment (4 papers). Collective consumerism (13 papers) appears as the primary mode of user/carer involvement in this sub- sample, with citizenship models featuring in 5 papers. As in the overall sample, a supportive organisational culture (8 papers) and a strategy for information provision (12 papers) emerge as the chief factors in facilitating user involvement, although funding and other resources (taken together, 8 papers) are also important. In the discussion that follows, the literature on democracy, representation and cultural change is examined in terms of several sub- themes: • strategies of representation • the impact of professional cultures • organisational management • cultural diversity and cultural competence. 4.2 Strategies of representation In an account of the difficulties he experienced as a user employment development worker for a large English mental health charity, Linnett (1999: 1) asserts that the ‘purpose of user involvement is to change the balance of power in an organisation’, with a shift in power away from professionals and towards users. The strategies by which such a shift might occur are both cultural and practical (see also Philpot, 1994; Strong, 1995). At the level of organisational cultures, user involvement entails a critical questioning of professional–client boundaries, role and relations, such that users are no longer understood as passively ‘receiving’ those services ‘delivered’ by professionals. The practical structures through which such a cultural shift become embedded – procedures for consultation, representation, planning and decision making – have been an important focus for changes in mental health organisations since the late 1980s, but their implementation has been variable and their effects open to question. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 55 4.2.2 Involvement in service planning and strategy The second context for Bowl’s analyses of user and carer involvement was in service planning and strategy at a local authority level – most commonly through representation on departmental committees, working parties and planning groups. Bowl notes that the precise form and extent of representation varied between different authorities, but makes a more general argument that user and carer representatives generally have to fit into existing structures and procedures. Departmental committees tended to be dominated by councillors and officers, who had greater experience of such structures and greater facility with the language and procedures of meetings than did most user or carer representatives. These differentials in power and confidence were compounded by the way that mental distress could affect user participation. Individuals could not always be sure of attending meetings, and user perspectives and feedback would therefore be erratic. Users also reported that the absence of representatives was rarely followed up, indicating a weak commitment on the part of committee chairs to ensure sustained user involvement (Bowl, 1996a: 296). A number of user representatives interviewed by Bowl were aware of the limits of their ‘representative’ status – expressing reservations as to their ability to speak for a wider constituency (all users of a specific service, for example), and recognising that their claims as a representative could be questioned by other committee members (ibid.). One strategy for addressing this issue was for key staff (for example, in day centres) to support the work of user representatives by providing time for preparation and discussion in advance of meetings (going through previous minutes, agenda and related papers, gathering information and canvassing views), and for feedback to other users afterwards. 4.2.3 User committees The third area for user representation examined by Bowl was the involvement of user committees in local service agencies, specifically day centres and residential establishments. This appeared as the most common form of user involvement in the study, and was established practice in over 80 per cent of the authorities that took part in the telephone survey. The principal officers surveyed, however, frequently saw such committees as tokenistic, with advisory power at best. The users who participated in the interview study also were ambivalent about the value of user committees. The decision-making remit of user committees tended to be fairly limited, and budgetary powers even more modest. Often user committees worked to channel information from staff to users, rather than vice-versa (Bowl, 1996b: 170). Service users could be discouraged from participating by the perception that committees had little power, achieved nothing, and were not listened User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 56 to. Many respondents voiced a desire for more direct involvement on staff and management teams. Bowl’s study suggests that these formal strategies of representation – in staff recruitment, in departmental committees, and in local user committees – not only vary significantly between different UK authorities, but do not in themselves ensure a meaningful transfer of power from managers or staff to users. Users and carers often are obliged to respond to existing agenda, while providing a rubber stamp for policy and service decisions. A similar argument was made by Brotherton (1988), who contends that representation on committees does not simply translate into decision-making power, especially when users are in a minority on committees where others are seen to have greater authority or expertise. The concept of representation appears in Bowl’s study as highly ambivalent. In a number of cases, principal officers expressed the view that authorities were content to meet legislative requirements for consultation, without enquiring too closely into the representativeness of the user or carer voice. In the officers’ views, this failed to address the problem that carer interests could dominate independent user/carer groups, or the need for specific representation of particular user interests, for example those of women or ethnic minority users (Bowl, 1996b). Bowl’s findings indicate that representative structures need to be supported by both practical measures and a facilitative organisational and professional culture. He emphasises the importance of staff and user training in order to promote user involvement, covering such matters as awareness issues, information-sharing, recruitment and equal opportunities, facilitating group discussions, confidence and assertiveness training, public speaking, budgetary and committee structures and procedures. While users and carers can be supported in developing skills for committee work and other forms of representation, Bowl also points to a need to adapt committee procedures to promote user participation. This includes reviewing the location, timing, format and pacing of meetings; taking into consideration the variety of disability or support needs users might require; and ensuring continuous user representation that does not over-burden certain highly involved individuals – including by making sure that there is a high number of user members in the first place. Mullen et al. (1992), in the USA, suggest similar practical strategies for involving and representing carers and carer groups in mental health organisations and networks (see also Briggs and Koroloff, 1995). Mullen and his colleagues report on a series of workshops with carers of clients of the Maudsley Hospital in London, designed to better inform and consult carers. These annual or biannual meetings brought hospital staff from multidisciplinary teams (including nurses, occupational therapists, psychiatrists, psychologists and social workers) together with carers, and were led by carers’ concerns and questions. Following small group discussions to generate issues and frame questions, a User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 57 series of emergent concerns – from requests for recreational facilities at the hospital to information on particular health conditions, and the effects of health service finances – were outlined for discussion and feedback. The meetings facilitated relationships between carers and professionals, improved information to carers, and allowed space for both groups to recognise and value the role of carers. The authors argue that this local initiative carries a larger lesson for mental health professionals: given the increasing responsibility for care assumed by family and other carers, it is important that staff establish good working relationships with those ‘at the forefront of the delivery of care’ (Mullen et al., 1992: 207). 4.3 The impact of professional cultures The findings of Bowl and Mullen et al. stress the importance of organisational and professional cultures in facilitating effective user and carer involvement. The potential impact of professional cultures on the representation of users is examined in Kent and Read’s (1998) study of consumer involvement in the planning, management and evaluation of mental health services in New Zealand. Their study is based on a survey of 72 professionals across the mental health field, including registrars, psychiatric nurses, psychologists, community workers, occupational therapists and social workers. The survey instrument was designed in consultation with selected mental health users (mainly from a local Psychiatric Survivors group), mental health managers and medical school staff, and covered issues of user involvement in treatment, evaluation, service planning and management. Survey items covered both professionals’ awareness of what forms of user involvement (from complaints procedures to involvement in staff recruitment) were currently in place in their agencies, and their opinions as to the likely positive or negative outcomes of greater user involvement. The research aimed both to measure current levels of consumer involvement from the perspective of professionals, and to assess the relationship (if any) between professionals’ orientation to the aetiology of mental health problems and their attitudes towards user involvement. The measurement of professional attitudes replicated earlier work by Wyatt and Livson (1994) which measured attitudes on a continuum from ‘psychosocial’ to ‘medical’ using a 53-item Likert scale (p. 299). While Kent and Read’s study is focused on mental health professionals, it is informed by research which suggests that users’ involvement has a positive impact on mental health outcomes (Nelson and Borkovec, 1989) and that the cooperation of professionals might have a beneficial effect on the course of mental illness (Lefley, 1990). The authors therefore are concerned to examine the relationship between professionals’ knowledge of and attitudes to existing user involvement, their opinions as to the likely outcomes of greater user involvement in service planning and delivery, and the possible impact of User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 60 4.4 Organisational management The attitudes of mental health professionals form part of a wider organisational culture for user involvement and change management. Rea and Rea (2002) draw on theories of change management to emphasise the importance of information and communication strategies in shaping a participatory and responsive organisational culture in mental health services. They argue that a potential tension exists between two core aspects of recent government policy on public and social services: improved public leadership, and increased user involvement. Leadership strategies that are highly directive or top- down fail to address the dispersed structure of many public services, including mental health services, and can work to impose a management culture rather than recognising diverse organisational cultures and competing interests. This point is ‘particularly important if working across organisational boundaries … and where users are involved’ (p. 83). Furthermore, the authors make a distinction between the requirements of performance management based on post-hoc evaluation, output targets and comparative measures such as government league tables, and the ‘management of performance’ understood at the level of organisational processes and inter- organisation working. Echoing attitudes expressed in Bowl’s study, described above, Rea and Rea identify a danger that government demands for agencies to demonstrate user involvement may mean that user consultation or evaluation becomes a formal procedure to be ticked off, rather than an embedded organisational routine that actually informs planning and decision making. These arguments are based on research undertaken over a four-year period (1998–2002) in Swansea, Wales. A series of questionnaires was conducted with service users, covering such issues as attitudes to services, service needs, the value of care management, need for and availability of information, and how information should be provided. Information issues included diagnosis; effects of users’ condition on other aspects of their lives; available and alternative medical treatments; local services and self-help groups; and user rights and service standards. A further research aim was to initiate a dialogue between service users and service providers, so that the views of users might feed into planning and delivery processes. The research began as a local initiative on one Community Mental Health Team, but by 2001 extended to cover all Swansea CMHTs. This larger survey also involved users in questionnaire design (Rea and Rea, 2002: 86–7). The authors found that the quality of information available to users was variable, and that care management (through written care plans) was not consistent. They suggest that some professionals may be resistant to the culture of care management because they see it as a basis for rationing services, while others view it as a clear commitment to meeting user needs (pp. 87–8). The survey evidence indicates, User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 61 however, that users who are familiar with care management value it (p. 88). Rea and Rea suggest that this brings a user perspective to bear on debates over the purpose and usefulness of care management. Similarly, the research found that the majority of users surveyed would value more and better information about diagnosis, although the views of professionals at the research design stage were divided as to the utility of such information to users (p. 89). Rea and Rea assert that these user perspectives shed light on contentious and under-researched topics: the value of care management, and the benefit of greater information on diagnosis to mental health users. More broadly, they argue that this local initiative for accessing user views can feed into a larger information and service strategy. This will involve managers working to ensure that systems are in place for professionals and providers to offer clear and useful information to users about their care, their rights, and their options. It also requires a culture of information sharing that works across agency boundaries, and gives priority to user views. User perspectives on services are not simply a matter of post-hoc evaluation within formal requirements of performance management, but represent a resource for the ongoing and responsive management of organisational performance, facilitating user involvement ‘in assessment, analysis, and planning service developments’ (p. 90). 4.5 Cultural diversity and cultural competence In addition to promoting organisational cultures that are conducive to user involvement in general, arguments also arise in this field about the need for cultural sensitivity on the part of professionals and organisations in relation to different user needs. Gibbs and Fuery (1994) in a US context , and Sassoon and Lindow (1995) in the UK, consider the culture of mental health organisations from the standpoint of black users. Gibbs and Fuery review perspectives on black women’s mental health and well-being in the USA. They identify the prevalence of either a ‘needs-prevention’ or a ‘rights-advocacy’ approach to mental health services, which tend to reinforce the expertise of professionals as either ‘teachers of competencies’ or ‘providers of treatments’ (Gibbs and Fuery, 1994: 564). Both involve a model of user involvement based on individual consumerism in relation to professionals. In contrast, the authors argue for an empowerment perspective that stresses the resources and competencies of black women in respect of both their psychological well-being and their wider social environment. User and carer involvement is understood in terms of active citizenship, and is addressed on a community as well as on an individual level – particularly in relation to prevention and early intervention. Different local agencies – Afrocentric schools and centres, social and recreational programs for senior citizens and for youth, User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 62 neighbourhood security measures, parenting and grandparenting groups, self-help groups for stress management and related issues – all might form part of a community psychology approach to black women’s mental health. The authors argue that such local and community-based agencies may be more responsive to black women’s mental health issues than centralised agencies; they tend to foster women’s competencies and control in relation to their social environment, and promote social and economic self-sufficiency. Alongside community interventions that seek to promote mental well- being through enhancing black women’s control over structural and environmental stress factors, Gibbs and Fuery argue for the importance of culturally sensitive research, education and training, and modes of service delivery. Integrating issues of diversity into the mainstream of professional training programmes should help to promote ‘culturally competent’ mental health professionals; the authors also argue in the US context that efforts to recruit women and minority students need to be reinforced. Culturally-sensitive services, further, will include outreach programmes, flexibility in respect of schedules to take in women’s caring and economic roles, more diverse staffing, better community relations (particularly via community gatekeepers) in order to ‘legitimise’ services, and enhanced continuity of care through the co-ordination of mental health and other social services. Writing in a British context, Sassoon and Lindow (1995) argue that racism is both a factor contributing to mental distress, and is reproduced within mental health services. They outline the development of the UK user movement as a predominantly white movement, but also point to efforts within the ‘mainstream’ user movement to highlight issues of race and racism, through anti-racism training and support for specific campaigns on the needs or concerns of black users (including, for example, deaths in custody). The authors identify two strands to empowerment models for black and Asian users: ‘reactive’ measures that respond to existing problems in service provision (this includes advocacy and legal representation, and training for black users); and ‘innovative’ measures that focus on forms of self- organisation as well as campaigning for reforms within the mental health system. The Black Carers and Citizens Project in Brixton, South London, and the Awaaz support group for Asian users in North Manchester are cited as examples of innovative involvement, providing information, advice, advocacy and casework for users, as well as (in the Brixton case) providing awareness and anti-racism training and consultancy to mental health agencies and educational institutions. As with Gibbs and Fuery’s account in the USA, Sassoon and Lindow argue that innovative approaches to black and Asian user empowerment will tend to target the wider social environment for mental health, for example through black history seminars, information provision in community languages, advice and support on wider issues (such as benefit entitlements), and User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 65 democracy and representation, which may be seen as one way in which changes in strategic planning may be brought about. The form of user involvement most commonly associated with strategic planning in the UK literature was collective consumerism. Consultation was always mentioned and usually evaluation was too. Representation was mentioned twice and partnership once. Collective consumerism in the UK papers usually referred to ascertaining the views of populations of consumers in the form of feedback of views rather than ascertaining the views of consumer groups or their representatives. In the North American papers collective consumerism was also mentioned, with partnership highlighted in both papers. In these cases, it was the activities of groups that were the focus of attention. The two papers also made reference to citizenship in the forms both of campaigning and user control. 5.2.1 UK literature The UK papers all discussed strategic planning in terms of the purchaser/provider split which was introduced in the NHS, and Community Care Act of 1990. Two of the professional papers from the UK from the Leiper and Field (1993) collection (Rafferty, 1993; Leiper, 1993) come in the second part of a book whose first part discusses ways of eliciting consumer views. The second part of the book discusses how such views may be fed into the strategic planning process in terms of purchasing and contract specification and this was typical of this literature. Rafferty (1993) gives the example of Wandsworth Health Authority which carried out consumer and household surveys before the purchaser/provider split was introduced and takes the view that its introduction will greatly increase the possibilities for consumer input into the structure and nature of the NHS and Social Services. Leiper (1993) is one of the few papers in this entire review to refer explicitly to the change management literature. He bases his paper on force field analysis (Lewin, 1951), which will be discussed in the theory chapter. His main argument is that consumers, but especially purchasers, should be clear about the purposes of collecting information on consumer views and about what change it is possible to achieve given current circumstances. He argues that consumers should not be overly judgemental and critical because this will simply be seen as a threat. Instead, he believes there should be a shared vision for change but recognises that this entails changes to organisational culture and staff attitudes and morale as well as sufficient resources, clarity about the problem and an absence of exposure to emotional threat. All these he categorises as ‘resisting forces’. ‘Driving forces’ are the need to obtain contracts, performance demands, cultural change, the desire of staff to provide good services and a moral concern with this. His vision of change is: ‘one centred around respectful treatment, User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 66 due regard for civil rights, access to resources, partnership and involvement’. However, Leiper is clearly concerned that users will overstep the mark and that conflict will be suppressed in a way that undermines change. Milewa (1997) describes a set of qualitative interviews with managers in a local authority where user forums were convened. However, these were not user-only forums and it is clear from the responses of the managers that they placed heavy restrictions on the kind of change that users were permitted to be involved with. For example, only half the managers interviewed said users or carers should be involved with the appointment of staff, nearly all were of the view that they should not ‘duplicate’ the work of community health councils (CHCs) and all said that users and carers should remain ‘apolitical’. Godfrey (1997), by contrast, argues that purchasing should begin from user-defined health outcomes. This research paper demonstrates that users’ conceptions of becoming ill, being ill and the process of recovery may differ dramatically from a narrow focus on symptom relief. The paper is also concerned with carers’ perceptions and shows how carers’ knowledge of their friend or relative’s mental health problem is often not given due weight by professionals. The locality where this research was carried out had recently introduced an Intensive Home Treatment Team as an alternative to acute admission or as a route to early discharge and it is demonstrated that users and carers preferred this to the acute ward. Although this paper takes a more ‘radical’ or user- focused approach to the incorporation of users’ views in the purchasing process, it is a research paper and an example of what could be done rather than what is being done. Beeforth (1993) writes from the perspective of being active in a user group. She contests the ‘top-down’ model of user involvement which robs user groups of their autonomy, and argues for cultural change so that meaningful user involvement may be brought about. She is particularly concerned to make the point that true user involvement, especially involvement on planning committees, requires a great deal of work on the part of users, emotional as well as material. Users need to build their confidence in order to participate on equal terms with managers but, at the same time, much of what user groups do goes unresourced. Beeforth expresses frustration at the consequences of rapid turnover of staff, with each new team wishing to construct user involvement from scratch. In this sense, change may not be sustained because new staff do not accept the arrangements put in place by their predecessors. On the other hand, Beeforth is grateful to those professionals and managers who have supported the endeavours of her user group. Resources are seen by all the UK authors as key to bringing about strategic change and representative structures are also vital. Training users in committee work is mentioned by some authors as is the User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 67 provision of sufficient information to enable users to participate. For Beeforth, this means that users must learn the ‘jargon’, but at the same time professionals must listen to the experiences of users because it is these experiences that are so valuable in bringing about organisational change in a direction that is more acceptable to mental health service users. Apart from Rafferty, who gives a quite benign account of user involvement in strategic planning, all the UK authors mention lack of autonomy, a resistant organisational culture and power differentials as obstacles to user involvement in strategic planning. Most also mention lack of resources. Power differentials appear here to take the form of professionals and managers ‘setting the agenda’ for organisational change and this clearly links to the presence of a resistant organisational culture. The question of lack of resources particularly concerns Beeforth who argues that, as she has no secretary and has to do all the preparation and paperwork for meetings herself or together with other members of her group, she is effectively ‘paying’ for her own involvement in organisational change. The workload, she argues, is particularly onerous to a group of people who are, by definition, vulnerable. Writers such as Rutter et al. (2001) and Parkes (2002) are of the view that this form of ‘consumer feedback’ into strategic planning usually works to an agenda pre-formed by the purchasers, or even legitimates decisions which have already been taken or would have been taken anyway. In this sense, such consultation represents ‘tokenism’ on Arnstein’s ladder of citizen participation. Certainly, there are no specific references to changes that have been brought about as a result of these ‘consumer feedback’ exercises. Rather there are vague references to ‘influence’ on the part of writers like Rafferty and, as we have seen, concerns expressed by writers such as Leiper that users will be ‘too’ critical and destroy the possibility of influence such as it is. Research papers such as Godfrey’s (1997) point the way to how users might more fruitfully ‘set the agenda’ but without giving any practical advice as to how this might be put in place. 5.2.2 North American literature There is one paper from the USA by McLean (2000) and one from Canada by Pyke et al. (1991), which focuses on nurses. They are quite different papers and so will be treated in turn. Pyke et al., in a short article, describe changes in the mental health system in Canada which were brought about by users or carers, as well as barriers to these changes. They focus not only on strategic planning but the promotion of democracy and representation (like the UK papers) as well as restructuring and policy. Pyke et al. seek a change in the way in which people with a mental health problem are perceived. As long as they are perceived as not competent, they will be excluded User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 70 and power differentials, which may be complex, are factors which hinder user involvement in strategic planning. 5.3 Restructuring and policy initiatives These two forms of change and their management will be taken together because they tend to overlap in the literature. They also overlap with some papers discussed in the previous section, particularly the two from North America. There are two main types of paper – broad-sweep analyses of historical and policy changes in mental health and the role of user involvement in this and, secondly, papers which describe restructuring and/or policy initiatives at local level. We will take two broad-sweep analyses and four examples of local initiatives. The papers and book come equally from the UK and North America. 5.3.1 Broad-sweep analyses David Brandon’s (1991) book Innovation Without Change reads more than 10 years on as both dated and yet resonating in parts with the modern arena. He is concerned with the restructuring of mental health services from hospital to community care and the role, if any, of the user movement in this. The book is dated in two ways. First, the hospital closure programme was by no means complete as Brandon was writing. Secondly, he estimates that there were 35 independent user groups in England in 1990 whereas Wallcraft et al. (2002) estimate that in 2001 there were upwards of 700 groups. Nonetheless, certain of Brandon’s arguments may retain some validity. He asserts that de-institutionalisation has simply led to small ‘institutions’ in the community. These may be actual bricks-and-mortar establishments or they may be ‘virtual’ institutions in the sense that, particularly because of stigma, people with mental health problems associate only with each other and with staff. The latter, he argues, have vested interests in retaining the distance between themselves and users both actually and symbolically. For Brandon, nurses in particular are themselves disempowered and so they have no wish to increase the status of those who are even more so. This is one of the ways in which ‘power’ in mental health may operate. As Parkes (2002) points out, such an analysis sees power as a ‘zero-sum game’ in which if one group assumes more power, another will lose an equal amount. The work of writers such as Foucault (1967) both argues against such an analysis of power, by pointing out that power may be distributed in increasing and varied ways, and by tying power to knowledge systems. As will be seen in the next chapter, there are good reasons in mental health for paying attention to what Foucault calls ‘knowledge/power axes’. Brandon argues that most user organisations, which he describes as ‘advocacy’ or ‘self-advocacy’ groups, have very limited decision-making User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 71 authority. The decisions they can make are made not by them but by providers (his book only alludes to the purchaser/provider split). In other words, the managers and professionals set the agenda for what may be influenced by users and user groups. This argument retains some force today although Brandon’s examples may be outdated. Still, there is evidence in Wallcraft et al. (2002) that some groups are still confined to choosing the colour of the bedspreads rather than appointing the Chief Executive. On the other hand, and in relation to strategic planning as well as restructuring, there is ample evidence from users and user group officers interviewed by Wallcraft et al. (2002) that they see their persistence and ‘refusal to go away’ as key to the influence they have with local purchasers and providers. They are ‘part of the scene’ and this has been accepted by many managers. In this context, the argument by Harrison et al. (1997) is pertinent. From interviews with managers, they state that user groups have indeed been accepted as stakeholders by managers. However, this acceptance may be qualified, for example, by criticisms of their ‘unrepresentativeness’ or ‘chaotic organisational style’. Harrison et al. argue that managers emphasise their acceptance of user groups’ positions when the groups are endorsing their decisions and emphasise their qualifications of this acceptance when there are disagreements either between managers and groups or between different managers. This Harrison et al. describe as ‘playing the user card’. This article will be discussed more fully in Chapters 7 and 8. Kauffman (1999) describes the development of the consumer movement in the USA. There are certain similarities between her argument and that of McLean (2000) described above. The two main differences are, first, that Kauffman focuses on the question of resources, both local and national, in relation to the consumer movement and brings this up to date by discussing the implications of managed care. Secondly, she discusses the question of identity, specifically how involvement in user action may shift a ‘spoiled’ to a valued identity, and relates this to new social movement theory. This discussion has implications for the argument put forward by Rutter et al. (2001) that much user involvement is ‘therapy’ and therefore qualifies only as ‘tokenism’ on Arnstein’s ladder of citizen participation (Arnstein, 1969). We will take up this issue in the discussion. McLean and Kauffman both make the point that the rise of the consumer movement in USA with de-institutionalisation led to a reliance of some parts of the movement on state, federal and not-for-profit sources of funding and that often these sources were less reliable and powerful than those upon which more mainstream services relied. Kauffman’s contribution is to consider what will happen now that the funding of mental health services has been put in the hands of for- profit managed care organisations (HMOs). Her view is that since these organisations pay for (and ration) packages of care for individuals, it User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 72 will be much more difficult for group-led user-controlled services to fund themselves through ‘block purchasing’. This has interesting implications for the NHS and Social Services in the UK. Kauffman also discusses at length the organisational culture in which user involvement initiatives must operate and it is here that the tension between medical and psychological models of the kind of people users are and users’ own definitions of who they wish to be come in conflic t. As stated, this bears on issues of identity and involvement as ‘therapy’ and will be discussed later. Brandon and Kauffman (like McLean) give over-arching analyses of restructuring and new policy initiatives and the place of user involvement in these. Both authors consider ‘restructuring’, at least in part, in terms of the move from large institutions to community care. The rest of the literature to be discussed in this chapter comprises more local instances of managing change in structures and policy in the direction of user involvement. 5.3.2 Specific analyses A very clear account of restructuring within an organisation is provided by Lord et al. (1998). This paper describes the restructuring and consequent service changes in a housing and support agency and does so in the context of a theoretical discussion of change management. This aspect of the paper is discussed in Chapter 7. The housing and support agency described by Lord et al. (1998), which is located in Ontario in Canada, had decided to change its philosophy towards greater consumer involvement and community integration. To do this, it set up structures which engaged all stakeholders, including consumers and family members, and engaged an outside facilitator to enable these structures to function. The aim was to achieve ‘bottom- up’ rather than ‘top-down’ change. The structures set up were a strategic planning committee, an implementation committee and an evaluation committee. Plenary meetings, small meetings and focus groups took place in relation to each of these committees. According to the authors, consumers were at first reluctant to take part. Consumers who use residential and housing support services are among the most marginalized; they lacked confidence and were unsure whether their views would actually be taken seriously. However, consumers did eventually become full members of the strategic planning committee with some adopting the role of leader and ‘mentor’ to others. One change decided by the strategic planning committee was the de- coupling of housing from support services so that care could be tailored more to individual needs. Staff in particular were less happy about how the implementation committee set about putting this change into practice. For some, the pace of change was too slow and for others User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 75 5.4 Conclusion Strategic planning in the UK took a ‘consumerist’ turn with the advent in 1990 of the purchaser/provider split in health and social care. The practical literature reviewed here generally describes mechanisms for consumer feedback into the planning process and less often representation on planning committees. It is not clear if the former ever has a meaningful influence on planning, even to the extent of increasing the range of options from which consumers may choose. Writers from a professional perspective express concern that users, particularly mental health service users, will be over-zealous in their demands while writers from a user perspective express concern that their efforts are not appreciated. Much has been written about the transition from institutional to community care but the literature reviewed here specifically concerns the place of user involvement within this transition. The more over- arching reports emphasise material, organisational and cultural obstacles to the possibility of users and user groups having a real influence on the shape of the new community services. Papers which describe more local initiatives are more mixed in their views about what is necessary to successfully manage change at the levels of restructuring and/or the implementation of new policies influenced by a user perspective. There is a pervasive ambivalence about the role of factors pertaining to mental distress here. On the one hand, the experience of services is seen as a direct and authentic expression of what is acceptable and what is not. On the other, being mentally ill is itself seen to disrupt the possibility of rational action – what Simpson et al. (2002) call the requirement of ‘coherence’. When this ambivalence is used by managers in their own interests, Harrison et al. (1997) call it ‘playing the user card’. A change process that appears to have avoided these problems is that described by Lord et al. (1998). User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 76 Chapter 6 Change management, new service provision, and user involvement 6.1 Introduction 6.2 Type of user involvement 6.3 Users as service providers to other users 6.3.1 Randomised controlled trials 6.3.2 Users working in professionally led services 6.3.3 North America – the view from the UK 6.4 Users as providers in the UK 6.5 New service provision by users to purchasers or providers 6.6 Theoretical and discussion papers 6.7 Conclusion 6.1 Introduction The provision of a new service or the redevelopment of an existing facility clearly requires organisational change and ways of managing this process. We argued in Chapter 1 that it is this form of organisational change that provides the greatest challenge to change managers. Wallcraft et al. (2002) report that 28 per cent of user groups in the UK are involved in the provision of services and it was seen in Chapter 3 that most new service provision in a change management context often involved the employment of service users themselves. The employment of service users as providers to other users clearly means a change in the profile of the workforce in an organisation. It was also seen that the majority of papers describing this form of change came from the USA or Canada. The establishment of user-led services and the employment of service users as providers have a longer history in North America than in the UK. At the same time, it would appear that those user-led services that do exist in the UK and were identified by Wallcraft et al. (2002) have not yet entered the literature. Since this review targets a UK audience, we will concentrate here on UK literature. However, there are two aspects of the North American literature that are notable. First, there are sometimes commentaries on a paper by other writers and so a debate develops around the employment of service users as providers. We shall take one example of this (Dixon et al., 1994). Second, this section of the literature contains three trials with measurable outcomes, two of them including a service described elsewhere in the literature (Nikkel et al., 1992). These are the only trials in the entire corpus and so they will be included. In addition, we include a paper by a British nurse who visited a user-controlled service in New Jersey (Barker, 1994). User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 77 Four examples of new service provision involving users providing services to other users in the UK are discussed (Perkins, 2002; Truman and Raine, 2002; Baggini, 2000; Barker et al., 1997). Bhui et al. (1998), also writing in the UK, describe changes in the way professionals provide services to their individual clients. Two papers (Barnes et al., 2000; Frisby, 2001) and one report (Campbell and Lindow, 1997) are taken as examples of situations where users provide a service to purchasers or providers. One example of such a service would have been clinical audit or monitoring, which is increasingly carried out by user groups. However, as discussed in the Chapter 2, that body of literature was excluded from this review at the outset. The other main example is where user consultants or representatives of groups provide training to health or social care staff. It is this service which is exemplified in the papers discussed here. The remaining three papers are more general and consider new service provision in the context of a theoretical and/or practical discussion (Barnes and Shardlow, 1997; Smith, 1998; Williams and Lindley, 1996). All these papers are from the UK and the first two are as easily seen as examples of ‘strategic planning’ where specific services that have changed as a result are described, however briefly. Helen Smith’s paper (1998) acts as a counterpoint to the specific service provision papers in that she discusses situations where users are consulted over new service provisions as well as involved in actually providing them. An even more counterpoised example is Hostick’s (1998) research which asks users their opinions about existing and ‘ideal’ services without in any way intending to involve service users in actual service provision. 6.2 Type of user involvement In terms of the type of user involvement associated with new service provision, Bhui et al. (1998) focus on individual care. Some of the papers which focus on users as employees do so at an ‘individual’ level. Although there is usually more than one user employed in these services, they are not always constituted as a ‘user group’. It is this instance that was picked out as problematic for the individual/collective consumerism dichotomy in our coding frame in Chapter 2. Other papers are concerned with involvement by groups of users in new service provision either as groups to be consulted or as actually providing services themselves. User-led services imply a new type of citizenship for mental health service users and this is picked up conceptually by both Smith (1988) and Barnes and Shardlow (1997). All the papers reviewed in this section, to varying degrees, counsel a move from ‘passive patient’ to ‘active citizen’. The most limited of these is Bhui et al. (1998) who describe changes to the ways they involve patients in their care. Writing as clinicians, they do not step very far beyond the traditional boundaries of client care; their strategies for inolvement are limited to the provision of more User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 80 non-consumers frequently talked about the burden of their position and the fatigue brought on by the work. The consumer staff, by contrast, tended to see problems at work as due to their own vulnerabilities rather than the ‘burden’ presented by their clients’ problems. A further feature mentioned by Paulson et al., and by other authors, is that consumer workers may face stigma. It is argued that this stigma is greatest within mental health agencies, for example those to which clients may be referred, rather than in the wider community. The authors argue that other mental health workers are most likely to think that consumers cannot perform their job competently because of their mental health status. Despite the positive picture painted of the consumer case-management team, the authors do point out that the consumer team experienced far greater absenteeism and staff turnover than the non-consumer team. Another factor with this work, which the authors themselves point out, is that the non-consumer team may not have been typical since it was managed by a consumer-run agency, 80 per cent of whose management board were consumers. But in this case, the differences in culture between the two teams are even more striking. The final trial in this literature also concerns a ‘demonstration’ programme, this time for homeless people with a diagnosis of severe mental illness which was implemented in sites across the USA (Chinman, 2000). Many of the sites included consumer staff although they were always in the minority. The trial here is not truly random because it compares clients of consumer staff with clients of non- consumer staff within mixed teams. It is demonstrated that these teams had more disabled clients than teams with no or very few consumer staff and also that the consumer staff were allocated clients who were as severely disabled as the clients allocated to the non- consumer staff. Consumer staff received the same salaries as other staff and were expected to do the same job. Clinical outcomes and the quality of the therapeutic alliance were measured. Essentially the findings were that there were no differences in outcomes or therapeutic alliance according to the status of the worker. The clients of both groups improved clinically over a two-year period and therapeutic alliance was good for both groups. The authors acknowledge that their measures were not subtle and therefore may have failed to capture the kinds of factors revealed in other studies. Also, the consumer-providers were working in a context where the majority of their team were professional staff. However, since the sample was very large, they conclude that consumer workers are as effective as other staff and provide both an avenue for the employment of people who have themselves experienced severe mental health problems and an additional resource for the benefit of clients who are vulnerable. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 81 6.3.2 Users working in professionally led services Involvement of users in case management, as distinct from user- controlled case management, is described in the account by Dixon et al. (1994) of the employment of users as consumer advocates within an ACT in Maryland, USA. This team works with homeless people with a diagnosis of severe mental illness. In this instance, consumer advocates are working alongside case managers and medical staff so the organisational issues are different from those identified by Nikkel et al. (1992). There is, for example, no requirement that the team work in a non-hierarchical fashion as tends to be the case for user-controlled organisations. The ACT did in fact have a clear medical and administrative hierarchy. Dixon et al. identify many of the same strengths which the consumer advocates bring to the ACT identified by Nikkel et al. (1992) including identifying with users, positive role modelling and first-hand experience of drug and alcohol issues. Since the consumer advocates have all themselves been homeless, the authors also argue that something they call being ‘street smart’ (that is, having acquired through experience the knowledge and skills to survive a marginalised and dangerous existence on the streets) has been vital to keeping users engaged with the team. The authors acknowledge a two-way information flow. Consumer advocates require some training to carry out their role effectively but they have also ‘trained’ the team, for instance, in explaining the experience of the side effects of neuroleptic medication. The authors identify five issues which have not been fully solved by the team. Two of them are the opposing side of the strengths which are seen to come from employing people with experience of mental distress and street homelessness. The first is that the role of the consumer advocates tends not to be clearly defined. This has the advantage that consumer advocates may tailor their work to the needs of individuals but the disadvantage that the role is vague both to the consumer advocates and to other staff. The second is identified as ‘boundaries’ which are seen to be much less clear in the relation of clients to consumer advocates than to staff. Are consumer advocates meant to be ‘friends’ to clients, implying a two-way relationship? A particular concern for the clinicians and administrator authoring this paper is confidentiality in the sense that consumer advocates may not pass on all the information they are given by users. There is lack of clarity in the team about who should be providing supervision and support for the consumer advocates. At the time of writing, a clinician carried out this role but it was recognised that peer- support might be more appropriate. Again, as with most of the papers in this section, the issue of the consumer workers’ own experience of mental illness exercises the authors and the team they describe. There was greater turnover of consumer than professional staff in the team which ‘appeared’ to be illness related (but see next paragraph). The User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 82 authors make the interesting observation that some clinical staff inappropriately adopted a therapeutic role in relation to consumer staff. At the same time, some consumer staff were uncomfortable about being ‘team members’, exemplified by their difficulty in calling the medical director by his first name rather than ‘Doctor’. The penultimate paragraph of the paper by Dixon et al. (1994) contains some surprising information because it implies that the consumer advocates were not paid (!) or were paid very low salaries. There is reference to the ‘inability to bill for the services of the CA’ (p. 625) which would appear to mean that insurance companies were not prepared to pay for these services. As the authors themselves hint, it may have been deflated salaries and poor job security that were responsible for the high turnover of consumer workers rather than their status as people with a mental illness. Two papers provide commentaries on Dixon et al. (1994): Fox and Hilton (1994) and Solomon (1994). Both are highly critical of the vague role definitions assigned to the consumer advocates which they say lay a burden on them to define their own role. This is a burden which the other members of the team do not have to shoulder. They are also critical of the lack of clarity in the supervision arrangements and in the training arrangements. In the view of the commentators, the tasks carried out by the consumer advocates are equivalent to that of the other case managers and they should be assigned a definite role with proper training, supervision and remuneration arrangements. 6.3.3 North America – the view from the UK We turn now to the last of the papers focusing on North America which this time is authored by a British nurse (Barker, 1994) who visited a community programme in the State of New Jersey run by ‘prosumers’. This term is used to describe people who have been patients and now run services. Like Mind Empowered Inc. the programme is underpinned by a culture of positive role modelling and the belief that experiencing mental illness can be a tool to help others. The programme provides services to nearly 1500 people and includes supported housing, drop-in centres spread across 11 counties, self-help groups and ‘buddy systems’, and membership of national consumer organisations. For Barker, the most interesting aspect of the New Jersey programme is the leavening of the divide between ‘staff’ and ‘patients’ and he counsels UK nurses who have used services to ‘come out of the closet’ in the interests of their users, while acknowledging that this has been made more difficult by the Clothier Report (Clothier et al., 1994). The ‘prosumers’ of the New Jersey programme sometimes work in an exclusively user-controlled way and sometimes work in collaboration with clinicians and managers. A facilitative organisational culture and attitude among these professionals is therefore essential to the success of such collaborations. At the same time, more radical User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 85 – not only those who are involved but the reaction to them of professional staff and non-involved users. They identify ‘role strain’ in crossing the user/staff boundary. This can be uncomfortable for the volunteer user and a threat to professional staff. Non-involved users also told the research team that they were not sure that people with mental health problems were able to take on the role of staff. This attitude Truman and Raine see as a reflection of society’s conception of mentally distressed people which has been internalised by members of the group themselves. In light of the above, the gym has had to confront the problem of sustainability. Trying to oppose the idea that users are not ‘competent’ to be workers has been important. Within the project, this has been accomplished through a process of positive role modelling. As non- involved users see others move into the position of volunteer, not only do the volunteers themselves become less socially excluded but other users see them as role models. Another key element has been the constant attention to the contract between volunteers/user staff in relation to their role in the gym. Ingrid Barker and colleagues (1997) provide a review of advocacy services in the UK based on individual interviews with key people in each of ten advocacy projects. Most of these were service users themselves so this is another example of change in the direction of new service delivery where users have some, if not complete, control. The most common type of advocacy identified was Patients’ Councils, hospital-based groups who try to bring about improvements in NHS facilities. This form of collective advocacy was preferred by the respondents although two projects focused on individual advocacy. Five of the projects had an independent management committee and four were situated in larger voluntary organisations such as MIND or the National Schizophrenia Fellowship (now Rethink). Although some of these projects were user-led, the main financing arrangement was grant aid from health or local authorities. This means that such authorities had a role in managing the provision of new advocacy services and the main way this was done was through monitoring. This paper is one of the few to mention specific groups of users. One of the projects had a specific remit for older people. Most reported an equal gender distribution but often commented that it was more difficult to engage women in advocacy than men. Although several of the projects were based in ethnically diverse areas, only one had even 20 per cent of its projects taken up with black groups. Interviewees stated that black users might be better served by organisations made up of people from their own ethnic group – an issue that is discussed at length by Wallcraft et al. (2002). The most important facilitative factor according to the interviewees was resources. Better resourcing led to quicker development and more positive outcomes. Almost as important was the presence of an User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 86 independent and flourishing user group in the locality. Information, training and networking with similar projects were also seen to be important. Barriers to the success of the advocacy projects included resistance from staff, especially clinical staff, insufficient and insecure funding, finding sufficient users to sustain the project (demand was often very high) and the danger that paid advocates would be seen as ‘professionals’ and so separate from ‘ordinary’ users. This last point echoes the conflicts between ‘mainstream’ consumer-providers and radical users in the USA. Paid user advocates may also be the sole worker in an organisation leading to a sense of isolation in people vulnerable to this in the first place for social reasons. These papers which provide practical examples of user involvement in new service delivery for other users all emphasise a cultural shift from passive recipient of care to active provider. In most instances, this has meant shifting an organisation from control by statutory services to at least some control by service users. However, all the new projects described were dependent for their funding to some degree on statutory sources and, especially in the USA but to some degree in the UK also, legislative changes were argued to have made this possible. When users become workers, the issue of their mental health is always to the fore although this varies from positive steps to ensure support to doubt about capacity. 6.5 New service provision by users to purchasers or providers The two papers and one report to be discussed in this section concern either nurse education by service users or service user involvement in teaching post-qualifying interprofessional courses. It should be noted that some authors express cynicism about this ever being anything but token. Hopton (1994), focusing on nurses, argues that the structural contradiction in mental health between care and control, coupled with the subordinate position of nurses in relation to psychiatrists, generates an organisational culture that will forever resist the inclusion of meaningful service user involvement in nurse education. He argues this to be so despite the prevalence of ‘consumerism’ as an ideology and the focus on users of services in the 1990s. Consumers themselves are not always so cynical. Peter Campbell and Vivien Lindow are two activists in the user movement who have experience in training mental health staff. They distill their experience in training nurses in a report published for the RCN entitled Mental Health Nursing and User Empowerment (Campbell and Lindow, 1997). As the title suggests, the object of users being involved in the training of nurses is to enable nurses to be more empowering in their treatment of service users and in their dealings with service user groups, be they User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 87 local groups or service-based groups such as Patients’ Councils. A clear objective of user involvement in nurse training is then to bring about cultural change in the NHS. To this extent, an organisational culture open to the contribution of users in nurse training is essential. Campbell and Lindow are clear about the obstacles. The ‘pathologisation’ of users’ experience is a constant temptation to professionals, and yet it is to the very experience of mentally distressed people that these authors wish to see nurses paying attention. To dismiss a contribution or, more seriously, a complaint as a symptom of mental illness is one way in which power differentials may operate. It may also lead to user involvement in nurse training being a token gesture, something these authors wish to see avoided at all costs and for which they give guidelines in order that it is avoided. These authors also discuss the specific situations of women, people from ethnic minority communities, disabled people and lesbians and gay men. Honesty and clarity are countenanced again and again in this report. In particular, Campbell and Lindow argue that nurses should be clear and honest with users about what can and cannot be achieved. The situation of detained patients is pertinent here. Campbell and Lindow provide an interesting discussion of advocacy – both individual and collective. While they accept that nurses may advocate for their patients, there is always the possibility that the patient’s ‘best interests’ will be defined by the nurse and not by the user. It is for this reason that independent advocacy has emerged and that this is often provided by people who have used services themselves. This links this report with the paper by Barker et al. (1997), discussed above. For user involvement in nurse training to be effective it needs proper resourcing, including payment of service users, a clear and full strategy for the provision of information, representative structures for bodies like Patients’ Councils and local user groups to contribute to the training and, as already mentioned, a facilitative organisational culture. Obstacles to effective user involvement in nurse training are a culture which is resistant, power differentials, and the type of pathologisation of experience discussed above. Campbell and Lindow (1997) also mention two other factors. One concerns nurses who have themselves used services and whether there is a culture of openness and empowerment around this. The second is the often mentioned and vexed question of the ‘representativeness’ of involved users. This will be discussed in Chapter 7. Diana Barnes and colleagues (2000) describe user participation in teaching a post-qualification interprofessional course. Their model of user involvement is that of the ‘stakeholder’ because they believe, unlike Campbell and Lindow (1997), that ‘empowerment’ is too high a goal to aim for given the constraints under which the course they User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 90 For Smith, the key factors which make collaboration and citizenship possible are staff training, resources, representative structures and information provision. She is particularly concerned with changes in organisational culture including the development of shared values, support for staff in this new environment and the acknowledgement of power differentials. On the question of mental distress itself she makes two points which are rather different. One concerns the safeguarding of users’ confidentiality when working in partnership with providers who may know the same person as a client. The other is that in the absence of training in committee skills, users will be unable to find their feet and will be undermined when, for instance, they are seen as ‘wandering off the point’. Williams and Lindley (1996) describe their own efforts, as professionals and academics, to facilitate meaningful user involvement in the form of support for a hospital Patients’ Council and then the formation of a consultancy to assist user groups to participate meaningfully in service planning and provision. However, they argue that this is extremely difficult to bring about due to power differentials existing within mental health services. These authors’ analysis of power differentials goes far beyond what we have encountered so far in this review as they argue that power differentials in mental health are situated in the context of structural inequalities in society which impact inequitably on users of mental health services. They are particularly concerned with inequalities of employment, income distribution, gender and ethnicity, which they argue structure the wider society and are magnified in power differences between mental health service users in relation to clinicians and managers. This paper will be discussed more fully in Chapter 8. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 91 6.7 Conclusion In conclusion, the provision of a new service or the delivery of an existing service in a new way is usually a radical form of organisational change requiring new ways of working from managers. It is particularly radical if it involves service users themselves as the providers of the new service rather than simply as groups that are consulted about a new service. If the new service exists within mainstream services, and the nurse training initiatives would be included here, then it will only be successful if other forms of organisational change – including cultural, attitudinal and structural – are also brought about. If the new service exists as a user-controlled organisation in parallel to mainstream services there may still be involvement of the mainstream management in the form of grant aid, contracts and monitoring. Many papers reviewed in this section make mention of resources and secure funding – rather than rolling one-year contracts – as vital to the success of new services. We have spent some time in this chapter reviewing the ways in which new services employing users have been configured in North America. This seems apposite because the employment of users in mental health services is set to increase in the UK in the very near future. Indeed, it is already happening. Most of the papers reviewed in this section also make reference to power differentials. These may be power differentials between users or user groups trying to establish more equitable ways of working and hierarchical and structural obstacles in mainstream services which mitigate against this. Power may also operate in mental health in quite subtle ways such as the pathologisation of complaints or the under- valuing of experiential knowledge. It may also, rather differently, refer to power differentials within user-led organisations. As will be seen in Chapter 7, this can lead to managers undermining the contribution of user groups on grounds of their ‘factionalism’. In Chapter 8 we look more closely at the different ways in which power differentials are conceptualised in the literature. The other factor which was mentioned in most of the above papers refers to mental distress as such. It is not surprising that when a group of people who have been defined socially as not competent start to take on roles defined by this very competence, this issue will be to the fore. The interpretation of the impact of the mental distress of users who are involved in new service provision varies. At one pole, psychopathology is seen to prevent an extensive degree of user involvement (Bhui et al., 1998) and at the other it is argued that positive steps need to be taken to support users or ex-users to work effectively in new services (Nikkel et al., 1992; P. Barker 1994). It is also recognised that references to mental distress may be used to legitimate a position which does not take the contribution of service User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 92 users seriously (Smith, 1988; Williams and Lindley, 1996; Campbell and Lindow, 1997). The papers reviewed in this chapter represent probably the ‘hardest’ form of user involvement in change management encountered in the literature. The examples often involve the employment of service users as staff and/or the setting up of user-led services. These projects arguably pose a greater challenge to managers than initiatives which aim to promote democracy and representation or cultural change. This is because the employment of service users or the development of user-controlled services can represent a fundamental shift in service patterns. However, ‘softer’ changes such as widening representation or engaging in cultural change may be a prerequisite for the successful execution of more far-reaching developments. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 95 representation, accountability and compliance will not be the same as for other internal stakeholders (management, clinicians, staff). 7.1.1.3 Aims, outcomes and processes of change The Audit Commission report stresses the way that changes in public services should ‘begin and end’ with users or customers. At the same time, the literature on user involvement in mental health emphasises real and sustained involvement in organisational processes. In their analysis of user and carer involvement in the commissioning and delivery of mental health services in England and Wales, Firth and Kirfoot (1997) make a distinction between organisational change and ‘outcome change’. They adopt a typology of different levels of user and carer involvement in service planning, from one-way communication from staff, through consultation, agenda setting, joint planning and user and carer control (p. 35). Similarly, our analysis of the literature points to a ‘ladder’ of participation, such that users and carers are most likely to be involved in ‘top-and-tail’ processes of consultation (at or somewhere near the start of the change process) and evaluation (as or after changes are implemented). Change, in this respect, might ‘begin and end’ with users, without necessarily involving them in the organisational processes that intervene between aims and outcomes. There appears to be a real challenge in developing strategies that tie user and carer involvement into substantive changes in service provision and delivery, as well as into meaningful forms of representation and/or partnership at the level of organisational processes. As Garcia Maza (1996: 24) puts it, this involves a shift in the ethos of public service from ‘provision of service for or to people’ to ‘provision of service with the involvement of the people it affects.’ This is in line with models of change management that stress the relationships between the content, context and process of change. Here, effective change depends on the relation between the aims and content of change (the ‘what’ of change), the process by which changes are implemented (the ‘how’ of change), and the organisational context in which change takes place (see Iles and Sutherland, 2001: 32–33, for their discussion of Pettigrew and Whipp, 1991, and the 1992 study of change in health care services by Pettigrew et al.). This more extended approach to issues of process and organisational culture informs the discussion in the following sections. User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 96 7.1.2 Information, communication and consultation Our review identifies information as one of the two most important factors promoting user and carer involvement in processes of change. Such an emphasis on information and communication is also found in the broader literature on change management. Clear strategies for information provision, and for communication between different stakeholders, are seen as central to the effective management of change. Our study also suggests that consultation is the most common type of user/carer involvement in a mental health context. However, it is most often correlated with organisational changes associated with the promotion of democracy and representation, or with strategic planning. It is less often linked, in these data, with substantive changes in service delivery or provision. The latter, in contrast, tends to link with more active citizenship on the part of users, and specifically with forms of user control (see the discussion in Chapter 3). The category of consultation, then, requires unpacking. Its correlation with the promotion of democracy and representation, but not with more clearly measurable changes in services provision, partly might reflect the way that consultation can be seen as a democratic outcome in itself: in this sense consultation and representation form a virtuous circle without necessarily feeding into wider changes in services or organisation. Our study, perhaps surprisingly, found that information provision and a facilitative organisational culture each were more important than formal representative structures in effectively involving users in organisational change. This is not to say that the formal representation of users and carers has no positive role in change management, but rather reflects a negative view of representative structures that are not embedded in a wider culture of involvement, or which do not provide access to reliable and useful resources of information (see also Bowl, 1996a and 1996b, and the discussion in Chapter 4). Consultation has come to be seen, in public services and elsewhere, as basic to good management practice, but is often viewed with scepticism by users, carers and staff. Our review of the mental health literature helps to qualify the emphasis on consultation and communication found in more general approaches to change management. Several studies in our survey report the tendency of consultation with users and carers to take place after key changes have been decided, or when key professionals have become committed to a draft plan (see Bowl, 1996a; Parkes, 2002; Rutter et al., 2001). It can be difficult at this stage either to consider alternatives, or to question the rationale for change and the aims such a process seeks to achieve. This after-the-fact ‘consultation’ represents little more than a form of reporting – it facilitates user/carer involvement in only a limited sense, and can have more serious negative effects. Where consultation takes the form of report, it is difficult for users/carers or other User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature © NCCSDO 2004 97 stakeholders to respond constructively. If their sense is that important questions have already been determined, those consulted have limited recourse to strategies other than passive or grudging acceptance, or potentially damaging resistance. Neither represents ‘involvement’ in any positive sense, and both tend to indicate poor management of information – even where those charged with communication do not intend to be non-inclusive. If it is crucial to engage in consultation from an early stage of the change process, it also is important to sustain strategies of information and communication over time, even when – from a management viewpoint – ‘nothing’ appears to be happening. Bowl (1996a: 291) makes a distinction here between ‘one-off consultations’ about specific proposals, and ongoing processes of consultation as an ‘established culture’ within organisations. 7.1.3 Issues of compliance The potential for and sustainability of change is highly dependent on the extent to which different stakeholders are prepared to comply with it. Perspectives on compliance have been strongly influenced by Lewin’s (1951) force field analysis. This approach identifies counter- forces at work in relation to organisational change: those driving the change process, and those restraining it (see Iles and Sutherland, 2001: 43; for the application of this model to a mental health context, see Leiper, 1993, and the discussion in Chapter 5). Driving forces might include new policy or managerial initiatives, new personnel, technological innovations, funding or regulatory changes, increased competition; while restraining forces can include skills gaps, technological lags, entrenched work practices, red tape; low morale, and so on. We might note here that such forces include both: • technical and social factors • external and internal drivers • structural and cultural issues. The key to effective change management, in this account, is to reduce the forces restraining change from taking place. Increasing drivers, on the other hand, tends also to increase resistance. Managing consent – promoting inclusion, participation, acceptance, compliance – therefore is seen as a more efficient strategy than imposing change in a highly directive manner. Lewin notes that cultural factors within an organisation are crucial in this context, either in enabling or in resisting change. Lewin’s model tends to assume a top-down structure, where promoting commitment to change is a management problem. Two key issues arise here in relation to organisational change in mental health. Firstly, a top-down or management model does not easily accommodate those instances where users and carers act as driving forces for organisational change. The mobilisation of service users has been an important feature of change in mental health services over recent