Service User and Carer Involvement in Education for Health and Social Care

Promoting Partnership for Health

Michael McKeown, Lisa Malihi-Shoja, Soo Downe

• Éditeur: Wiley-Blackwell
• Année: 2011
• ISBN:
  9781444347937
• Édition: 1
• Sujet: Medicine
• Sous-sujet: Nursing Skills

Service user and carer engagement in health and social care, and in the education of practitioners in this area, is emerging as one of the most important new drivers within government policy in a number of countries. However, beyond the rhetoric, there are few guides that address the practicalities of setting up and running such a project.

This book is unique in that it will appeal to practitioners, policy makers, and commissioners in health and social care practice and education who buy in to the principles of service user engagement, but who find it hard to know how to progress the practicalities. Based on the set up and running of the unique and very successful Comensus project, this practical and accessible text will provide a framework for building authentic and sustainable community engagement in health and social care education and practice.

Part I:

The Context

1

Service User and Carer Involvement in Higher Education

I never thought that I would be involved with a university’s teaching and learning possibly sweeping the floor would have been the only way in.

1.1 Introduction

There has been a general trend over recent decades towards acceptance of the notion that the public ought to have a more participatory role in the state, and that people who make use of various services have a particular interest in decision making and planning as well as the nature of service they receive. This general consumerism has been influential in United Kingdom policy relating to health and social care, and in specific institutions of care delivery (DH, 2005, 2006a; HM Government, 2007). Often coming from a different ideological position, the same ends have been pursued by a burgeoning social movement of service users and community groups. Most recently, the notions of personalisation and personalised care have come to the foreground in analyses of service failings and prescriptions for reform (Carr, 2008). This trend is evident in the Darzi review of the UK National Health Service (NHS) and the growing adoption of individual budgets in the social care field in particular (HM Government, 2007; DH, 2008, 2009a).

The idea that people should have a say in the planning, delivery and evaluation of their care, and that their views should be respected and acted upon by practitioners, is almost taken for granted in the United Kingdom, and in other resource rich countries, such as Canada. A natural extension of this expansion of participation is to create and sustain similar opportunities for involvement in higher education institutions, where health and social care staff are trained, and where relevant academic research staff are located. This has been matched by a global interest in collaborative approaches to interprofessional learning and workforce development that also bring service users and carers in to the partnership and promote community engagement (Hargadon and Staniforth, 2000; Barr et al., 2005; Freeth et al., 2005; Meads et al., 2005; Hammick et al., 2009). Over the last few years, a great deal of interest has developed in methods of developing and supporting such an endeavour. This has resulted in the production of numerous reviews, guidelines and position statements for involvement activity, in service delivery (Crawford et al., 2002; Public Administration Select Committee, 2008), in research (Beresford, 2005b; Hanley, 2005; Involve, 2007), and in education and training (Wykurz and Kelly, 2002; Repper and Breeze, 2007; Tew, Gell and Foster, 2004; Branfield et al., 2007).

A wealth of interesting initiatives has been developed across the range of universities with a stake in the education of health and social care staff and research in the field. These include involvement in all aspects of teaching and learning, such as curriculum planning, lesson planning, delivery of teaching sessions, course and module management, assessment of student progress and wider quality assurance processes (Downe et al., 2007). Service users and carers have also been at the centre of various innovations in practitioner education, such as enquiry or problem-based learning (Dammers, Spencer and Thomas, 2001), e-learning and distance learning (Simpson et al., 2008), and simulated patient sessions (Morris, Armitage and Symonds, 2005; Priestley, Hellawell and McKeown, 2007). This involvement extends into the arena of interprofessional learning and collaboration, which is transacted in both universities and the workplace (Meads et al., 2005). In the United Kingdom, various professional reviews and regulatory bodies who have oversight of curriculum development have advocated both user involvement and interprofessional learning (DH, 2006b; GSCC, 2005).

Involvement in research can be at different stages of the process, but there have been few examples of extensive involvement throughout a research study, or, indeed, of completely user-led research, though this is growing (Lowes and Hulatt, 2005; Pitts and Smith, 2007; Sweeney et al., 2009). In a context of wider community engagement, involvement in participatory action research approaches offers a promising route to more complete engagement, opportunities for authentic userled research studies and opening up the civic role of higher education institutions (Hanley, 2005; Holdsworth and Quinn, 2006; Church, Shragge, Fontain and Ng, 2008).

The development of service user and carer involvement in universities has been piecemeal. New initiatives have evolved because of the activity of key individuals, rather than always being effectively planned and supported at the institutional level. Reflecting this, resources and funding are a perennial problem for a number of university initiatives and projects, raising real questions about sustainability. There are a few exceptions to the rule. In the United Kingdom, ring-fenced funding is available in relation to social work training and, despite its relatively low level, these monies have been valuable in developments associated with social work. A number of networks have grown up to support people interested in relevant work, for example the Developers of User and Carer Involvement in Education (DUCIE) network hosted by the Mental Health in Higher Education (mhhe) initiative. There have also been a number of international conferences and scholarly meetings focused on health and social care services user and carer involvement in universities, including the foundational Where’s the Patient Voice Conference (Farrell, Towle and Godolphin, 2006) and the University of Central Lancashire (UCLan) Authenticity to Action Conference.

International efforts to involve service users and carers in higher education settings are too numerous to list. Some examples from different international contexts that have had a systemic impact are noted here. In Australia an alternative approach has been the direct employment of a service user in an academic post, referred to as consumer academic, with the remit of encouraging greater consumer involvement within the Centre of Psychiatric Research, the provision of a consumer perspective and, ultimately, greater acceptance of consumer involvement by academics (Happell, Pinikahana and Roper, 2002). A number of United Kingdom universities have appointed development workers to academic posts to support user and carer involvement. Many of these appointments are of people with personal experience as service users, including notable examples at City University, London, and the University of Leeds, both in the United Kingdom. In Toronto, Canada, well developed relationships between Ryerson University and a range of community groups and individuals have led to a number of interesting collaborative developments. There is A History of Madness course open to all students of the university designed and taught by David Reville, mental health service survivor and community activist. In a lengthy partnership, mental health service users and academic staff have worked together to establish and evaluate a range of social businesses using participatory action research approaches (Church, 1997). In the United States, Community and Physicians Together is a joint venture between the University of California, Davis, a local health care provider and 10 community organizations in the Sacramento area. Doctors in training are allocated to community groups where people from the community assist in teaching them about their individual health needs and how best to make a difference to health at a community level. This initiative was awarded the Campus Compact Thomas Ehrlich Award for Civically Engaged Faculty in 2008 (Paterniti et al., 2006). The Comensus initiative at UCLan has attempted to develop a systematic approach to user and carer involvement that covers a whole Faculty and reaches other university business and Faculties (Downe et al., 2007). At Brunel University, London, Peter Beresford, mental health service user and activist, has held a chair since 1998 in the Centre for Citizen Participation, and has made a significant contribution to pushing forward issues of user involvement in both education and research in United Kingdom universities.

This book deals with alliances between universities and service users and carers at a number of different levels: people who have experienced significant use of health or social care services, those who care for sick or disabled relatives, those who choose not to use services for various reasons, those who experience stigma or social exclusion linked to a health condition or disability, those who wish to celebrate positive experiences and examples of good practice and those who have had negative experiences and need to address examples of poor practice. All have a stake in the activity of universities. This may be in terms of seeking influence or direct participation in the range of university business, or it may be in attempting to harness the resources of the university to support individuals and groups to tackle concerns arising in the community. The most obvious means of engagement is involvement in the training and education of the health and social care workforce as a vehicle for effecting desired changes in service provision. Similarly, involvement in research activity can be potentially influential in making services better. At a more complex level, closer relationships between community participants and academic staff can begin to subtly or significantly transform working practices in universities and their inter-relationship with the community.

The primary reason for involving service users in the training and education of mental health professionals is the anticipation that it will produce practitioners capable of delivering improved and more relevant outcomes for users and their carers. (Tew et al., 2004)

This premise has seen a number of universities in a range of countries setting up service user and carer involvement initiatives that strive to incorporate service user and carer perspectives in the education of future generations of practitioners (Barr, 2005; Church, 2005; Church, Bascia and Shragge, 2008). This range of involvement is often linked to wider community engagement activity, with the relationship between universities and their local communities of significant importance to all parties (McNay, 2000; Cone and Payne, 2002; Savan, 2004; Winter, Wiseman and Muirhead, 2006; Campus Compact, 2009). At this level, individuals and community groups will begin to have a strategic voice within universities, addressing key concerns, such as widening access or reciprocal use of resources, or academic knowledge and power may be mobilised to support community campaigns. In such a context, interesting questions arise concerning identity, with academic and lay identities open for transformation or entrenchment (Church, 1996; Spandler and McKeown, 2008).

Arguably, health and social care professionals need to be equipped to involve service users and carers in both personal and strategic decisions. An understanding of relevant social and political factors can be seen as crucial to this enterprise. For this to happen, future health and social care practitioners need to be given the skills as soon as possible within their training and should regard this involvement as standard and not merely as an add on to practice. In seeking full and empowered participation, service user and disability activists rally behind the clarion call of nothing about us, without us. This echoes the classic feminist stance, in which the personal is most definitely political.

1.2 The Politics of Health and Welfare

Conventional welfare provision in the United Kingdom has been criticised as paternalistic. This is taken to mean that interventions are carried out for the perceived good of service users by those seen as authoritative experts. Systems built on this premise have led to doctors, social workers and nurses being afforded status and authority, with service users and carers deferring to their specialist knowledge and expertise. At its worst, this approach leads to the service user or carer having minimal input into any care regime, and feelings of disempowerment, confusion and uncertainty occur.

Means and Smith (1998: 71) suggest:

There is no simple answer as to what does and what does not represent user empowerment, since it is a contested concept. However, most would argue that it involves users taking or being given more power over decisions affecting their welfare.

Change within health and social care services is slow. However, two drivers have been significant in bringing the voice of service users and carers to the fore. These are:

1. The growth of consumerism, latterly associated with a personalization agenda.

2. The growth and status of a number of service user and carer movements campaigning for transformation of services.

In the 1980s and early 1990s public services in the United Kingdom and elsewhere became heavily influenced by the notion of consumerism. Users of services were seen as customers who could exercise choice about the care they received. The development of consumerism in the United Kingdom health and welfare context grew out of a prevailing neo-liberal political ideology strongly associated with the Conservative government of Margaret Thatcher. This New Right philosophy highlighted the need to promote individual choice, roll back the welfare state and expand the influence of the private sector within health and social care. Notwithstanding claims to the contrary, the advent of a New Labour government in 1997 did little to diminish the broad privatization agenda. There has been a progressive critique of these policies, particularly in relation to their lack of adaptability to health and social care. Consumerism has, however, opened up various empowerment strategies for service user and carer movements. It has done this by emphasizing that every individual is a citizen with a set of social, civil and political rights. Users and carers have carried out collective action congruent with this premise and, as a result, changes in legislation, policy and practice have come about. Whilst service user movements have to some extent taken advantage of the political opportunity afforded by the rise of consumerism, movement politics are more complex and, arguably, have much more in common with the progressive left and strands of anarchist political thought than with the new right. Those seeking organizational change within universities come up against various structural and cultural barriers that need to be understood and overcome.

1.3 Organizational Culture and Culture Change

The concept of culture within organizations has been thought of and defined in different, diverse and sometimes contradictory ways. For Geert Hoefstede (2001: 9), culture is ‘the collective programming of the mind that distinguishes the members of one group or category of people from another’. Diana Pheysey (1993: 19) also sees culture in this way, stating that culture is ‘a programmed way of seeing derived from beliefs and values’. Deal and Kennedy (1982) also ally themselves to these theories believing that ‘a strong culture is a system of informal rules that spell out how people are to behave most of the time’. Essentially, ‘it is the way we do things around here’. Robbins (2001) defines organizational culture as the social glue that helps to hold an organization together. Andrew Brown’s (1998: 9) definition articulates well the interplay between inculcation of collective values and norms of behaviour in the culture of organizations:

Organisational culture refers to the patterns of beliefs, values and learned ways of coping with experience that have developed during the course of an organisation’s history, and which tend to be manifested in its material arrangements and behaviours of its members.

Peters and Waterman (1982) claim that ‘excellent companies are marked by very strong cultures’. However, this is not necessarily the case. As Brown (1998) notes in his ‘consistency hypothesis’, strong cultures do not equate with high performance where inconsistency between the espoused culture and culture in practice is present.

Those who advocate culture management tend to assume that culture is a variable that is easily identified and manipulable. (Woodall, 1996: 27)

Jean Woodall implies that the management of culture is problematic. Brown (1998) agrees with Woodall’s perception but states that the difficulties are of a relative rather than an absolute nature and that to manage culture requires ‘the ability both to introduce change and to maintain the status quo’ (Brown, 1998: 161). This dichotomy can be evident in universities, where the espoused culture may welcome service user and carer involvement but established hierarchies, bureaucratic systems and processes, entrenched throughout these organizations, ensure that cultural change is difficult to realise. This issue is illustrated in Chapter 6, using the specific example of the Comensus initiative.

Schein’s (1985) levers for change advocate that managers should engage in actions in an attempt to manipulate their employees. Such manipulation is often met by resistance to change. Robbins (2001) differentiates between individual and organizational resistance to change. He cites individual sources of resistance as habit, need for security, fear of the unknown, economic factors, selective information processing and myopia. Organizational sources of resistance are structural inertia, limited focus on change, group inertia, threats to expertise, power relationships and established resource allocations. Some of these resistors to change are clearly apparent in universities; where academics are seen as the experts along with associated power imbalances.

Some universities have strong cultures and emphasise a clear mission. Whilst some authors celebrate strong cultures (Peters and Waterman, 1982) believing them to be a recipe for success, others argue that strong organizational cultures can be oppressive and reduce innovation, making change difficult to accomplish (Flynn and Chatman, 2001).

The stronger the culture, the harder it is to change. Culture causes organisational inertia; it is the brake that resists change because this is precisely what culture should do - protect the organisation from willy-nilly responses to fads and short term fluctuations. (Deal and Kennedy, 1982: 159)

Ogbonna (1992: 8) agrees with this stance and argues that ‘the ability to manage culture implies not just a capacity to change and maintain it, but to create, abandon and destroy it as well’.

Adoption into core areas of performance may be a route to more profound organizational cultural change. As Pennington (2003: 251) states:

The truth is that culture change is driven by a change in performance. An organisation’s culture cannot be installed. It can be guided and influenced by the policies, practices, skills and procedures that are implemented and reinforced. The only way to change the culture is to change the way individuals perform on a daily basis.

For this change to happen, Pennington suggests five basic ideas for performance change: create a business related sense of urgency; focus on performance by setting specific goals, and measure everything; change systems and structures in addition to skills; make change a way of life; and, finally, create opportunities for ownership.

There is a risk that these approaches may result in enforced change that is not fully embedded in the values of organizational members. Despite the widespread acceptance of the validity of service user and carer involvement, it is possible that complex higher education organizations defy easy systematic integration of such involvement. Possible reasons for this might be the differing value base of stakeholders. Career bureaucrats, academics and lay participants may all have a commitment to increased user and carer involvement for entirely different reasons. In the university context, the various health and social care practice disciplines may also exhibit historically entrenched features of professional identity and socialization, associated with enduring claims to power that can operate to limit the realization of transformative goals (Luke, 2003). Significant cultural change can, possibly, only occur within the organization if all parties are authentically attached to altruistic and equity based values which would define a truly service user and carer led initiative.

1.4 Policy and Implementation

In the United Kingdom context, the agenda of authentically involving service users and carers in the development, delivery and evaluation of professional education in health and social care is gaining importance within services (DH, 1994a, 1998a, 2000a, 2001a, 2004a; NHS Executive, 1999) and with professional bodies such as the General Medical Council (GMC, 1993) and the General Social Care Council (GSCC/SCIE, 2004). This involvement has grown in prominence due to a combination of legislation and the recognition by professional bodies that, if future health and social care practitioners are to be prepared to work in user-led services (DH, 2005), then there is a need for their input within all spheres of training, from the clinical practice arena to the classroom.

Curriculum developers should recognise the important role of carers and users in advising on service provision and development. Consultation processes should be wide ranging and representatives of service users and carers should be involved where practicable in the development, delivery and evaluation of curriculum. (National Board for Nursing and Midwifery for Scotland, 2000: 4)

Involving service users and carers in the education of future health and social care practitioners provides students with a unique insight into lived experience, grounds education in reality, enhances the students’ experience, provides an added dimension to teaching and empowers the service user and carer. Few universities have responded comprehensively to the call for involvement, and critics suggest that involvement in practitioner education has been inconsistent (Basset, 1999). This highlights the need to examine current initiatives and examine the scope, remit and effectiveness of such activity.

Health and social care policy requires service user and carer involvement in practice, research and education, but evidence of its impact, scope and the influence of such involvement need to be investigated. There is a growing body of literature surrounding service user and carer involvement in education and research in universities and wider community engagement (Repper and Breeze, 2007). The main focus has arguably been on literature documenting the experience of higher education...

Table des matières

• Cover
• Title page
• Copyright
• Dedication
• Promoting Partnership for Health
• Foreword: Strike up the Band!
• The Comensus Writing Collective: Notes on Authorship
• Notes on Language
• Introduction
• Part I: The Context
• Part II: Personal Experiences: The Case of Comensus
• Appendices
• Index