6.2.1 Defining consumer participation
6.2.2 Awareness and understanding of consumer participation
6.2.3 Support for consumer participation
6.2.4 Valuing consumer participation
6.2.5 Who is a consumer?
6.2.6 Current users and ex-users
6.2.7 The role of past consumers
6.2.8 Who should represent consumers?
6.2.1 Defining consumer participationBased on the issues and inconsistencies identified with the definition and model applied in the TSU Project: Phase One (see Chapter 2), the definition and model of consumer participation in the TSU Project: Phase Two Project were modified to better articulate some of the complexities surrounding meaningful consumer participation in the drug treatment context. The revision process included:
- Providing more detail on some of the unique issues associated with consumer participation in drug treatment settings;
- The development of a set of guiding principles for consumer participation in drug treatment services; and
- A reworking of the TSU Model of Consumer Participation to include the qualitative aspects of meaningful engagement, such as ensuring that all mid- to high-level participation activities by definition would incorporate empowerment and genuine decision-making roles for consumers.
Following the evaluation of the TSU Project: Phase Two demonstration projects, some further issues were highlighted in relation to the definition and model of consumer participation. In particular, it seems it may be necessary to further modify the model to incorporate a 'pre-consumer participation' stage whereby services are encouraged and supported to conduct establishment activities. Despite the fact that the TSU Project: Phase Two was targeted at services who were already undertaking lower level consumer participation activities, such as consultation and information sharing with consumers, the project evaluations did not confirm this level of consumer participation across most of the services involved. Indeed, the majority of services involved experienced significant barriers to undertaking their planned projects due to resourcing and planning difficulties and a general lack of opportunities to engage with consumers outside of the clinical environment.
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As it currently stands, the definition and model of consumer participation adopted in the TSU Project: Phase Two commences the process of consumer involvement at the point of 'low level' information sharing between staff and consumers. However, the demonstration projects have highlighted the need for an additional level or stage of engagement that is focused on:
- Establishing communication and trust between staff and consumers;
- Raising basic levels of awareness and understanding of consumer participation;
- Increasing support for consumer participation and its potential value and benefits;
- Building skills in project planning and implementation; and
- Providing practical training for staff and consumers on consumer participation.
6.2.2 Awareness and understanding of consumer participationNot unlike the TSU Project: Phase One study findings (AIVL, 2008, p.15), awareness of consumer participation was still generally low among both staff and consumers in the TSU Project: Phase Two. While staff in the TSU Project: Phase Two were somewhat more likely to have an understanding of 'consumer participation' very few had direct experience with consumer participation in practice. A number of services stated the existence, or planned implementation of, 'Consumer Charter of Rights' and 'Consumer Rights and Responsibilities' as being a legitimate form of consumer participation. However, in interviews with consumers most were not aware of the development of these policy frameworks.
Similar to this was the lack of consumer input into the development, design, implementation and assessment of the TSU demonstration projects. Despite the original aims of the demonstration projects, this lack of input meant that in practice most of the projects would be characterised as lowlevel consumer participation according to the model applied in the project (see Chapter 2). Similarly, many service staff were not involved in project processes including application, development, planning and implementation stages. While it is recognised that in some instances this will have occurred due to genuine staffing and resourcing limitations, staff in some services commented that processes tended to be done by a select few within the services, leaving other staff unaware of the projects. Similar issues to those identified above have also been discussed in the literature on barriers to consumer participation in other health settings (Cleary et al, 2006; Fortune et al., 2007; Hassett et al., 2007; Schauer et al., 2007).
Interviews with general service consumers, typically at both baseline and evaluation stages, demonstrated that many lacked an understanding and awareness of consumer participation in both theory and practice. In many instances 'consumer participation' and 'consumer representation' had to be explained to interviewees from the outset of interviews in order to continue. The consumers who did have an awareness and knowledge of consumer participation were, for the most part, those who had participated directly in the TSU Project: Phase Two demonstration projects, usually as consumer representatives. There also appeared to be a greater level of understanding among those consumer representatives that had participated in consumer participation training provided by the local peerbased drug user organisations.
In some cases, the interviews also created confusion for some consumers as it became apparent that service staff had told consumers the interviews were about the services they attended (and not the consumer participation demonstration project). For the most part, this meant that those consumer participants believed that service 'evaluation' — not evaluation of the demonstration projects — was the premise of the interview. This highlights the low profile that the demonstration projects had within some services and concomitantly points to the lack of knowledge and awareness about consumer participation processes in general.
Tending to fall into two categories, there were a few consumers who had a good awareness of both consumer participation and representation, and then a much larger proportion of service consumers who lacked clear knowledge of consumer participation. The significant gaps between the two groups of consumers indicate differences in how the demonstration projects were communicated to various consumers, and also suggest the need for capacity building and training to improve communication, confidence and trust among both staff and consumers. Service consumers' awareness and comprehension of consumer participation, as well as their willingness to participate in the process, appeared to correlate with both project progress and with the degree and type of training provided by services. In particular, consumer confidence in the project seemed to increase among those services where some training had been provided by the local drug user organisation either alone or together with another local consumer advocacy group.
This suggests that future consumer participation projects could significantly benefit from a number of key actions including the utilisation of training for consumers and staff from the early stages of project planning. Further, such training should be conducted with both staff and consumers with the help of local drug user organisations and other appropriate advocacy groups. This training should include understanding consumer participation and identifying its value and benefits, different approaches/ models of consumer participation, recognising the knowledge and skills that consumers possess, and how services and consumers can work together to support consumer involvement.Top of page
6.2.3 Support for consumer participationAs with the findings from the TSU Project: Phase One, staff showed overall support for consumer participation, albeit at generally low levels (AIVL, 2008, p.14). When asked, the most common examples of consumer participation activities that staff were aware of included: client satisfaction surveys, consumer councils or committees, and suggestion boxes. Very few staff interviewed indicated support for consumer participation at higher levels, such as service planning committees and staff recruitment panels. Reluctance to endorse consumer participation was especially high when it involved decisions that could have potential impacts on staff (i.e. work appraisals, recruitment, etc). This is also consistent with the finding from the TSU Project: Phase One (AIVL, 2008, p.57).
A small number of staff directly involved with consumer participation projects stated that some staff were opposed to the concept of consumer participation, which in some cases caused problems with the demonstration projects. One staff member was quoted as saying he believed 'white-anting' took place as well as an overall reluctance to take on board the project aims. The influence of service staff on the success of consumer participation and the significant barriers that negative staff attitudes can have on consumer participation outcomes is well documented in the literature in relation to drug treatment and other areas of health service delivery (Patterson et al., 2009, Goodwin and Happell, 2007: Roper and Happell, 2007). At both the baseline and evaluation interviews a number of staff stated they felt 'disengaged' with the projects and were being asked to carry responsibilities for projects that had been developed without their input or approval. Given that there are existing concerns within some services about some staff being opposed to the inclusion of consumer participation activities, services should place a high priority on ensuring all staff are engaged appropriately in the planning and development phases of consumer participation projects (Patterson et al., 2009). Staff should also be provided with appropriate training and support in consumer participation and project planning.
While both the TSU Project: Phase One and Phase Two findings reflected a very low understanding of consumer participation among service consumers, once the concept and practice of consumer participation was explained, consumers generally expressed a high level of support for consumer participation (AIVL, 2008, p.86). Further, consumer projects conducted within drug user organisations have demonstrated that when educated about consumer participation in drug treatment services, consumers do develop the confidence to participate and have perspectives to offer that can lead to improvements in both policy and service delivery (Thompson, 2002). Given the absence of base-level knowledge of consumer participation among most consumers interviewed, the consumer interviewer explained consumer participation to consumers as being a form of advocacy, representation and participation in drug treatment. Some consumers misunderstood consumer participation to be more of an individualistic issue (i.e. what they could get for either the services or themselves, such as access to more take-away doses in pharmacotherapy programs and plasma televisions in residential rehabilitation services).
While improvements in service facilities are neither unrealistic nor unreasonable, consumer driven changes to clinical procedures and policies are more complex, particularly when governed by external authorities, such as area health services, government policy, etc. Nevertheless, this confusion highlights the importance of managing the expectations of consumers, particularly those expectations that are beyond the scope of the project, and that such management is an important part of consumer participation initiatives. The central importance of organisational context issues, including the full engagement of management and the establishment of mechanisms to manage the expectations of and provide timely feedback to consumers, has also been highlighted in a recent consumer involvement study in the United Kingdom drug system (Patterson et al., 2009).
A number of consumers interviewed did not see the value of either consumer participation or consumer representation. Instead, they maintained that the skills and experience required to undertake consumer participation and representation was more in the area of staff expertise and/or knowledge. This was due either to people thinking that they were not capable of making decisions regarding their own treatment (self-perceived deficits), or that staff were simply more capable of making these decisions on their behalf. While this could imply a good level of trust between those consumers and staff, it also highlights power and empowerment issues between staff and consumers in drug treatment settings.
It remains unclear whether such trust is a product of positive client-staff relations or, conversely, a reflection of high levels of disempowerment among consumers. It is acknowledged that some consumers do not wish to be involved in consumer participation, preferring instead to focus on their treatment and/ or because they have other priorities and commitments (AIVL, 2008, p.62). However, the issues raised here highlight the important role of staff in empowering consumers to further consider and/or take up participation opportunities. These issues and others relating to power and empowerment will be discussed in more detail in section 6.5.
While the issue was identified earlier in relation to staff awareness of consumer participation, evaluation interviews with staff indicated that another reason for lack of support for consumer participation may have been attributable to a lack of inclusion in the planning of demonstration projects. Some staff (both those with direct involvement in the projects and more general staff) stated that projects had been commenced without their knowledge. As a result, some expressed a lack of ownership over the projects and described feeling resentful due to having no inclusion in the beginning yet being expected to undertake much of the groundwork for the projects. Staffing and resourcing limitations notwithstanding, such problems could be avoided in the future by ensuring all staff are informed of potential projects at the planning stages.
As noted elsewhere in this and the previous chapter, successful consumer participation requires considerable effort and commitment from the service, staff and consumers. Without an adequate understanding and appreciation among key stakeholders of the value and benefits of consumer participation, it is unlikely that the requisite level of commitment to support a successful project will follow. For this reason, future projects should ultilise the experience and expertise of local drug user organisations to provide training to dispel negative misconceptions about consumer participation, including fear and misapprehension for both consumers and staff and to identify the positive impact that consumer participation can have on in the treatment context. Indeed, the National Treatment Agency in the United Kingdom has speculated that the unique expertise and experience of drug user groups may be central to achieving desired outcomes in relation to user involvement in drug treatment settings and, in any case, that users have the right to be involved (National Treatment Agency, 2002).Top of page
6.2.4 Valuing consumer participationWhile staff in both the TSU Project: Phases One and Two interviews seemed to show support for consumer participation projects (AIVL, 2008, p.15), it is less clear whether there was an equivalent level of support for the 'value' of consumer participation. Some staff stated they believed it to be an essential need of their services (i.e. 'You can't call yourself a community service if you don't have community involvement'), however these opinions were not reflected across interviews with all staff. The evaluation data reflects a lack of a realistic appreciation of the level of work and the organisational infrastructure needed to implement their projects in line with the project plans submitted by services. Although some services appeared to commence and implement projects well in the early stages, in most cases there did not seem to be adequate contingency planning in relation to how they would respond to unforeseen problems and developments. For this reason, it was a combination of unrealistic expectations, inadequate project planning and support, and lack of contingency planning that resulted in the projects falling short of their planned outcomes. It remains arguable whether this lack of planning and, ultimately, progress represents a case of poor project planning or a more fundamental devaluing of consumer participation in this context. It is likely the answer to this question will differ across the services involved.
The above issues raise questions about the motivations of services in applying for the TSU Project demonstration project funding. Notwithstanding the low levels of funding available to support the demonstration projects, with the demonstration of consumer participation increasingly being included in service accreditation processes within the AOD sector, it is not unwarranted to ask whether services might apply for available funding for consumer participation projects with the main aim of meeting service accreditation requirements. This is particularly the case where meeting such requirements is increasingly linked to levels of funding and, therefore, staff and service opportunities. In this context it is not difficult to envisage a devaluing of genuine consumer participation policies and practices in favour of more perfunctory approach of 'ticking the boxes'.
Alternatively, the underperformance of the demonstration projects could also be interpreted as an issue of core versus non-core business. In this scenario any 'additional project' would suffer from a lack of attention and commitment because it was not designated as 'core' business and incorporated into position descriptions, business plans, etc. Once again, the level of funding AIVL was able to make available for the demonstration projects may have contributed to the relative deprioritising of the projects. The idea of consumer participation not being 'core' business was certainly raised in the evaluations by staff and some consumers.
Regardless of whether the demonstration projects seemed to suffer due to ulterior motives related to accreditation standards or an undervaluing or deprioritising of consumer participation, or some of both, the pathway to addressing the problem of project underperformance is essentially the same. Although the reasons why the projects did not achieve their full outcomes is very important (particularly the unique reasons for each service), it is also reasonable to state that the full value of consumer participation will not be recognised until it becomes a 'normal' or required practice within each service. In this regard, it is recommended that the core requirements and policy frameworks for drug treatment services are amended to support and embed active consumer participation at all levels of organisation. This process could start to foster a higher level of interest and participation from staff and perhaps counter negative staff attitudes. It could also serve as a precipitator for making more service resources available for consumer participation activities.
6.2.5 Who is a consumer?The determination of 'who is a consumer?' in relation to consumer participation is not an issue that can be surmised easily or universally agreed upon. While in lay terms it can be defined as someone who buys and/or consumes merchandise or services, in treatment settings there are many varied opinions as to where this begins and ends, and also what characteristics make a 'good' consumer representative. The study findings in both the TSU Project: Phases One and Two reflect that different treatment settings can influence a variety of beliefs among both staff and consumers in relation to 'who is a consumer'. In addition to this, there were also differences in opinions in relation to what constitutes a 'current user' and an 'ex-user', what roles past consumers can have in consumer participation, what constitutes 'stability' for consumers (often stated as a 'required' characteristic for being a consumer participant) and, finally, who should represent consumers in general. Each of these complex and multifaceted issues will be explored in turn below in the context of the findings of the demonstration projects.Top of page
6.2.6 Current users and ex-usersMuch like defining who is a consumer in the context of consumer participation, the question of what constitutes a 'current user' and an 'ex-user' varied greatly among and across those interviewed at baseline and evaluation. Far from viewing this as a single continuum where a person is a 'current' or 'active' drug user then progresses to abstinence thereby becoming an 'ex-user', the concept of the 'current user' and the 'ex-user' had very different meanings for both staff and consumers across the different types of treatment services. For those in residential rehabilitation and detoxification facilities, 'ex-users' appeared to be those who had engaged in treatment and remained abstinent from drug use. Coupled with this sentiment was the opinion that ex-use (or abstinence) must be followed by a significant amount of time free from drug use. While acceptable 'times' of abstinence were not stated specifically by either staff or consumers, it seemed necessary for one to be 'drug free' for a significant period of time. Among certain service types and some staff and consumers, the presence of 'stability' in one's life was often indicated as being a good sign that someone was 'drug free'. The concept of stability and how it was perceived by both consumers and staff is discussed in detail in section 6.4.
Within pharmacotherapy settings, distinguishing between 'current' and 'ex-users' was not as clear-cut as within residential rehabilitation services nor was it considered a necessary prerequisite in choosing 'good' consumer participants. Moreover, consumers held the view that people still on treatment (i.e. pharmacotherapies such as buprenorphine and methadone) were better suited to being consumer participants than those who were not. The main reason provided for this view was that people not currently in treatment were too far removed from the drug-using community and thus unable to accurately relate to those in current treatment. It is also worth noting that many consumers in these settings were of the opinion that staff who were 'ex-users' were much more effective in relating to service users needs than 'non-users' who they believed had gained their knowledge primarily through 'textbooks' as opposed to lived experiences.
While the question of when a current user becomes an ex-user remains a murky one, it is undoubtedly one of the most contested issues in relation to effective consumer representation. It may be that there is a call for different 'types' of consumer participants within different treatment settings. For example, people on pharmacotherapies representing others in the pharmacotherapy setting, and current and/or past consumers of residential rehabilitation and detoxification services representing those within their relevant settings.
Finally, a related issue that emerged during the baseline and evaluation interviews was that of the role of 'ex-user' staff member. As identified in the findings, a staff member at one service claimed that at least 70% of their current staff were ex-users. While this issue potentially raises questions about staff identity and allegiances, particularly on more 'sensitive' issues of service policy and practice, the more important issues in relation to consumer participation are those of relative role and power. While staff members in treatment services with personal drug use and/or treatment histories undoubtedly bring a different experience than staff without this background, it does not necessarily follow that staff with direct personal experiences can simply 'replace' the need for input from current treatment consumers. There are a number of reasons for this, including the fact that one could be a staff member who is an ex-user who has never been in treatment or in that type of treatment and therefore have little more to offer than other non-using staff. Perhaps more importantly, however, is the fact that being a staff member (even one with a 'past') is not the same as being a consumer of that or any other treatment service. Staff are appointed in a professional capacity. Their role and power within the service is very different to that of a current consumer. The other issue that is very important in relation to 'ex-users', particularly those on staff, is that of 'community connectedness', which is explored below in relation to 'past consumers'.Top of page
6.2.7 The role of past consumersIn both the baseline and evaluation interviews for the TSU Project: Phase Two, the role of past consumers in treatment services was acknowledged as being important for consumer participation. Much like the issues 'who is a consumer?' and 'users versus ex-users', there were mixed opinions on what the role of past consumers should be, and who was more appropriate for consumer participation roles. Staff at both baseline and evaluation were reasonably consistent in their belief that, while past consumers should definitely have a role in consumer participation, the level and extent of this role was limited to what would be classed as 'low-level' consumer participation, that is non-decision making roles. Limiting the role of past consumers is also consistent with the view put by many staff in both baseline and evaluation interviews that it was not the role of consumers (presumably past or current, although this was not specified) to have significant input into service planning and delivery or general organisational decisions; least of all those processes that directly affect staff, such as staff appraisals.
Opinions on the role of consumers also differed greatly among consumers interviewed, though more so across different services and individuals, rather than over time (thoughts were fairly consistent across both baseline and evaluation interviews). Again comparable to the responses in the TSU Project: Phase One, some consumers were uncomfortable or reluctant with the idea of consumers having a role in their own treatment, believing that this could have negative repercussions for them with their service provision or that they were not knowledgeable enough or confident to represent consumers effectively (AIVL, 2008, p.62). Others held the belief that consumers should be entitled to have input into their treatment and were the most suited to 'knowing' what other consumers wanted and/or needed.
Although there could be disadvantages to involving past consumers in consumer representative roles, particularly the potential for them to be 'out of touch' with the issues or what is happening in services at that time, the advantage is that it could be a way to address the very real concern raised by consumers above about negative repercussions for their treatment. If you are not currently a consumer but someone with past consumer experience you may have a good understanding of the issues facing consumers without having anything 'to lose' by having to raise 'difficult' issues or criticisms of the service.
In many ways, whether this is a viable option or not will depend on the level of 'community connectedness' for each past consumer. If a past consumer continues to be part of local drug user and/ or consumer treatment networks or has personal connections with people on treatment programs, their understanding of and capacity to represent the issues and needs of current consumers could be much greater. Alternatively, being removed from direct experience with treatment services over a long period of time or having only ever been involved in one type of treatment service may mean the individual is unable to adequately represent consumer issues regardless of whether they have ongoing connections or not.
The complexities of this issue are also reflected in the consumer data. In many instances, consumers at both baseline and evaluation held similar views about the importance of including past consumers in consumer participation. Consumers of residential rehabilitation services at baseline and evaluation were more likely to believe that past consumers were more suited to consumer participation due to their 'stability'(i.e. further removed from 'chaotic' lifestyles and more able to commit to involvement at this level). Likewise, consumers from detoxification facilities also believed 'stability' or being 'clean' (complete abstinence from drugs) was important for consumer participation — thus the emphasis of past consumers being more suitable.
Those from pharmacotherapy settings were a lot less likely to hold the belief that a consumer participant should be a past consumer; though some consumers did not seem completely opposed to this concept. There was a general support for keeping people within the service engaged (which implied current users and/or people on pharmacotherapies) in consumer participation as it was stated that people who were on treatment would have more of a personal and immediate understanding of other consumers' experience in treatment. For some in this setting 'past consumers' literally meant 'past' — that is, no longer a consumer and therefore not representative of current consumers and related issues.
While the comments above illustrate wide-ranging views among current treatment consumers on the role of consumer representatives and what constitutes consumer representation, it is clear that many believed 'current treatment consumers' had a valued and important role in consumer participation. The issue of 'stability' was raised either directly or implied through other terminology (such as the need to be 'able to fully commit to consumer participation'). To some extent, this implied that many people believed or assumed 'stability' to be a continuum on which consumers consistently 'improved' (i.e. more time passed equalled more stability). Much like 'who is a consumer?', the issues surrounding 'stability' are neither easily surmised nor clear-cut; this is also discussed in more detail throughout the following sections.
The central issue proposed here is that more than stability and ex-use or current use, 'connectivity' with the community represented should be the principal measurement or guidance that determines a person's suitability for consumer representation and participation. Connectedness to community or a person's acceptance within drug user/treatment consumer networks results in an awareness of the current and relevant issues and experiences for current treatment consumers. If people are too far removed from users and treatment consumer networks then they are not sufficiently 'connected' to represent these issues for consumers. This is an issue repeatedly discussed within the peer education literature — that the acceptance by the target group is the key characteristic of a peer (AIVL, 2006). The literature in relation to hepatitis C peer education and treatment support also highlights this concept with peers stating that their most trusted and credible source of information and support is through other peers and drug user organisations (Norman, J et al., 2008 and Richmond, J. 2010).
In the final analysis, it will be important to carefully weigh the pros and cons of considering the use of past consumers for representative roles as this could easily act as just another barrier to current consumers developing the confidence to represent and address their own issues and needs. Ultimately, if current consumers are expressing concerns about repercussions or their own capacities to take on representative roles, perhaps it is better for services to tackle the underlying causes of these reservations rather than seeking to avoid them by using non-consumers (such as family members or carers — no matter how well meaning), past consumers or even staff with past using or treatment experiences to undertake the role. In the end, the focus must be on what best meets the needs of current service consumers not whatever is easiest for the service and its staff.Top of page
6.2.8 Who should represent consumers?Although it was raised somewhat unexpectedly, the issue of a small minority of consumers that people in treatment for alcohol use were somehow a better-quality person or more suitable for undertaking consumer representative roles than those seeking treatment for illicit drug use issues is a matter that warrants further discussion. Setting aside the merits or otherwise of the views expressed, the issue highlighted by these comments is the importance of considering relationships between consumers. In planning for and conducting consumer participation, it is not just about the relationships between staff and consumers or about the nature and structure of the service. Complex relationships among consumers within services and across services are also central to making consumer participation work.
The wide-ranging views expressed by both staff and consumers on critical issues such as identifying who has the 'right' to represent consumers, who would make the 'best' consumer representatives and inter-related issues of power and trust indicate the centrality and importance of diversity to consumer participation in this setting. In particular it indicates a need to ensure a 'valuing' of diversity and of the associated principles of self-determination and community connectedness. Attitudes and assumptions of staff in relation to both consumers and other staff, and the attitudes and assumptions of consumers towards both staff and other consumers, highlight a need to provide training and education to challenge negative stereotypes and dispel myths and poor attitudes before meaningful consumer participation can even begin.
However, the data shows that many of these attitudes and values are deeply held and are unlikely to be changed through training and education alone. Indeed, other areas of research have shown that changing entrenched negative attitudes, particularly those of health care professionals towards people who use or have used illicit drugs, needs more than training and education to achieve genuine change (Treloar, C and Hopwood, M., 2004). Consumer participation in the general health context has also shown that it is the creation of opportunities for staff and consumers to engage outside of the usual clinical environment — an environment that has often reinforced rather than challenged poor attitudes — that, over time, can help both staff and consumers to understand each other's values and skills (Alexander and Hicks, 1998). While we are not aware of research into strategies for changing negative perceptions and stereotypes held by consumers about other consumers, it is reasonable to assume that opportunities for further engagement and consultation could also assist consumers to better understand and appreciate each other's contributions.
Addressing a broad diversity of views in relation to 'who' should represent treatment consumers will also require the development of fair processes to allow different groups of consumers to form their own networks and identify representatives that they believe best represent their issues and needs. This includes ensuring that current service consumers are part of developing any criteria for consumer representative positions and/or proposals for consumer participation activities. This allows for self-determination and for consumers to be part of the defining processes by which their needs and issues will be addressed. There will be a need for flexibility, to refine approaches or make mistakes and start again. Opening genuine communication between staff and consumers about the characteristics of an effective consumer representative allows for the exploration of issues that, for the most part, did not seem to be discussed in the demonstration projects.
This apparent lack of focus on some of the more formal aspects of consumer representation and participation within the projects has resulted in a situation where this report is unable to do more than raise a range of extremely important yet highly complex and inter-related issues in relation to consumer identity and representation in drug treatment settings. For example, the distinctions raised above in relation to alcohol treatment consumers versus consumers of illicit drug treatment services raises the possibility of consumers being inappropriately represented 'within' a single service or 'across' services. This could occur by people who use or have used different drugs to some or even most of the consumers in a particular service or cluster of services being selected to represent 'all' consumers, and perhaps lacking the requisite knowledge and/or experiences to understand and articulate what others want/ need for their own treatment.
The data also raises the possibility of current consumers being represented by people who are possibly too far removed from (or not at all connected to) the issues of relevance (i.e. non-drug users or ex-drug users representing current treatment consumers). Finally, the issue of staff with past using or treatment experience being a 'substitute' for current consumer representatives was also raised by the data. It is unfortunate that the important issues raised by the concept of 'staff consumer representatives' — including that of self-identity, role definition, professional boundaries and power ¬— were not sufficiently explored by any of the projects. It is arguable that these issues were beyond the scope of this project but, equally, the fact that they were raised within the context of projects on consumer participation does potentially bring them within the project's scope.
So what then can be said about the above issues and what they mean for 'appropriate' consumer representation? For the reasons already outlined above, 'connectedness' to one's network or community is probably the most powerful asset a consumer representative can possess. Community connectedness is also likely to be the most effective way to address the complex representative issues raised across the evaluation data. Taking this approach avoids getting caught in either circular or dead-end discussions about who is a consumer, when does someone become an ex-user, can past consumers represent current consumers, does drug of choice matter, etc. Ultimately, by reviewing one's connectedness to people currently using and in drug treatment, a consumer representative can assess and, importantly, be assessed as to whether they can effectively represent the issues and needs of a particular group of treatment consumers. The necessity of this two-step process of not only self-identifying as a peer or consumer but being identified and accepted by others as their peer or fellow consumer is well documented in the available literature (AIVL, 2006). It also goes some way towards addressing many of the issues and questions outlined above from the data.
Treatment consumers have the right to be represented by people who have a genuine interest in and commitment to consumer participation and the skills needed to represent and advocate for the relevant consumers. However, this can only occur in practice when consumers are genuinely supported to implement or be part of fair processes that are inclusive, consultative and designed to meet the actual rather than perceived issues and needs of treatment consumers. This includes supporting consumers to drive processes to elect consumer representatives by seeking the support of local drug user organisations in training and ensuring processes to allow consumer representatives to consult with other service consumers. It also means ensuring that consumers have genuine input into the decisions made and activities undertaken. Consumer representatives identified, selected, trained, supported and managed by staff and services alone may result in a form of consumer participation that is considered easier for the staff and service concerned, but it is unlikely to result in meaningful consumer participation or in an 'appropriate' consumer representative.