The type of treatment service and its influence or impact ran through almost every issue and theme in regards to consumer participation. Among the different service types there were very different ideas on who consumers are and should be from both the consumer and staff perspective. Some of the reasons for this situation related to the different models of care, treatment environments and service philosophies among each of the services. For example, within residential rehabilitation, abstinence was the end ambition or goal. Similarly, in detoxification facilities, short-term medication was offered with abstinence presumed afterwards. In pharmacotherapy settings, however, the underlying premise of treatment is one of harm reduction that does not necessarily assume or exclude total cessation of or abstinence from illicit/licit drug use.
6.3.1 Pharmacotherapy services
6.3.2 Residential rehabilitation services
6.3.3 Detoxification/withdrawal services
6.3.1 Pharmacotherapy servicesAt baseline and evaluation the pharmacotherapy services were the ones that had taken steps to engage drug user organisations in the training for their demonstration projects. It appeared they were more accepting of the role of drug user organisations, in general, and the principles underpinning them. This apparent acceptance most likely related to the fact that these services and the drug user organisations shared a support for the philosophy and practice of harm reduction; unlike other services where promoting harm reduction (and therefore the potential of continued drug use — illicit or licit) would conflict with organisation's core values. It is also the case that these services had some degree of existing relationship with their local drug user organisation, which is likely to have created a platform upon which to base involvement in the consumer participation demonstration projects.
Overall, the consumer participation projects in pharmacotherapy services involved consumers to a greater degree and were also more supportive of consumer participation in general. Consumers interviewed from these services generally exhibited a higher knowledge of consumer participation, more direct involvement in service projects, and showed confidence (more so at baseline than at evaluation) in their ability to represent other consumers within the service. The findings also suggest that there was a direct correlation between the degree of project progress and training provided by the local drug user organisations.
In some instances, both baseline and evaluation interviewees stated that they were content to allow staff to speak and/or act on their behalf as they believed that staff not only knew what was best for them but had their best interests at heart and were far more likely than consumers to do an effective job of representing consumer needs and issues. While this apparent level of trust could on the one hand be a sign of the quality of the relationship between staff and consumers, on the other it could be a sign of almost total consumer disempowerment or at least resignation. It was not clear through interviews how this situation had been allowed to develop. For example, it was unclear whether it had come about through 'empathetic' staff actively speaking on behalf of consumers, thereby removing the need for consumers to speak or take action on their own behalf, or whether consumers had actively given up their right to speak or take action — or a combination of both. It is also possible that a situation like this could develop if staff did not have the confidence in consumers to represent themselves effectively, were concerned about consumer 'vulnerability' and/or if staff did not believe consumers would be interested in taking part in consumer participation activities — a view also supported in the findings of the TSU Project: Phase One (AIVL, 2008, p. 14).
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Whatever circumstances have given rise to this situation, it is one that needs to be redressed in the best interests of both consumers and staff. The very nature of pharmacotherapy services can militate against the empowerment of consumers and towards the formation of highly dependent relationships. There is strong evidence that many pharmacotherapy consumers will experience multiple treatment episodes across many years (ANCD, 2009). In this regard, it is important that staff do not enable or facilitate (even inadvertently) consumers taking a passive role in relation to advocating for and representing their treatment needs and issues. If, as the evidence suggests, consumers are likely to be spending long periods of time in treatment and moving between treatment services, they need to be supported to develop the skills and confidence to respond effectively to a variety of treatment contexts. Regardless of whether consumers express the view that they are happy with the service and do not need to have avenues to represent their needs and issues, staff should initiate steps to empower consumers and support them to make their own independent decisions and develop their confidence to represent themselves effectively.
As mentioned above, pharmacotherapy service settings by their very nature have consumers who are highly dependent on the medication they are prescribed. While consumers may have a willingness to engage in consumer participation, some, indeed many, may be acutely aware of risking losing access to take-away doses and even their place in a treatment program itself by saying and/or doing something that is perceived by staff or the service as 'wrong' (i.e. being critical of services or staff or being labelled as a 'trouble-maker'). Whether this is a real or perceived fear of consumers, it is still a fear that may inhibit consumer involvement. Such fears were also confirmed in the responses from consumers in the TSU Project: Phase One (AIVL, 2008, pp.54-56). However, there are many practical steps that can be taken by staff and services to address such concerns or at least to reduce the likelihood of them resulting in consumers choosing not to participate. For example, providing opportunities for consumer participation away from clinical interactions (such as a separate room for consumers to meet privately) will support more confidentiality and allow interaction to take place away from the immediate clinical environment.
6.3.2 Residential rehabilitation servicesSome staff interviewed from residential rehabilitation services believed that the environment and setting of their services were by nature conducive to consumer participation. The shared living environment and duties (such as cleaning and cooking, etc.) meant that consumers participated in service programs and had input and contribution into how they 'lived'. Many staff argued that the very nature of therapeutic community-based residential rehabilitation fosters almost constant consumer participation. While it is possible to identify processes and activities to support this case, it is also possible to point to factors that might question whether it is appropriate to label all activities within the residential rehabilitation context 'consumer participation'. This theme was also explored in the TSU Project: Phase One where describing ongoing involvement in practical operational issues (such as work schedules, menu planning and cleaning) as 'consumer participation' was questioned. While it was recognised that such activity could be useful in building a foundation for future consumer participation, the absence of 'choice' (in that consumer involvement in practical operational tasks is not optional but a compulsory part of one's therapy) led to a questioning of whether certain activities should really be characterised as consumer participation in their own right.
At both baseline and evaluation the residential rehabilitation service was less likely to engage the local drug user organisations in their consumer participation project than the pharmacotherapy projects. Despite the fact that AIVL directly facilitated connections between the service and the local drug user organisation, neither the service nor the drug user organisation actively pursued this relationship beyond these initial meetings. Further work needs to be done to better understand why neither party attempted to continue the dialogue and whether this related to a lack of resourcing, philosophical differences or other factors. The evaluation of the demonstration projects has shown the important value of involving drug user organisations in consumer participation initiatives and resolving potential barriers to collaboration.
In the residential rehabilitation project, communication between staff members about the project appeared to breakdown with some staff not knowing what 'project' had been done, or who was managing the project. Likewise, communication between staff and consumers was also limited. Many consumers were not aware that the demonstration project was being run, with most consumers stating in interviews that they were told they were participating in a 'service evaluation' rather than an evaluation of the consumer participation demonstration project. At baseline and evaluation, consumers in the residential rehabilitation site were also less likely than pharmacotherapy consumers to believe they were capable or suitable to be consumer representatives. Many stated they would prefer staff to make these decisions or, at the very least, have long-term residents (people who had been there longer) as consumer representatives. While there were some opportunities for 'senior' or long-term residents to participate in certain aspects of service decision-making and planning, similar opportunities for new or younger residents were not particularly evident.
As identified in relation to the pharmacotherapy services above, regardless of whether consumers express that they are happy with a service and do not need to have avenues to represent their needs and issues, it is important that staff initiate steps to empower consumers. This should include supporting consumers to make their own independent decisions, and to develop their confidence to represent themselves effectively. The fact that the majority of consumers interviewed at evaluation were not aware of the consumer participation demonstration project serves to underline the urgency of this issue. In therapeutic community-based residential rehabilitation services, in particular, there also needs to be discussion about the nature of consumer participation in this environment and whether it can really be claimed, as it currently is, that compulsory participation by residents in the 'day-to-day running' of the service (such as cooking, cleaning, etc.) equates with meaningful consumer participation as defined in other areas of health service delivery. It is recognised that levels and models of consumer participation vary between service types and even between different residential rehabilitation services. In this regard there is a need for a better articulation of the models of consumer participation being adopted in various treatment contexts and the rationale underpinning these approaches.Top of page
6.3.3 Detoxification/withdrawal servicesAs with the other treatment settings, consumers from the detoxification service also showed an initial lack of knowledge of consumer participation. After the concept was explained, many still expressed less interest in participating in consumer participation and less enthusiasm for the general concept. Most were more willing to let staff make treatment or service decisions on their behalf, and also tended to state that if there were to be consumer representatives they should be 'ex-users' or 'stable'.
Similar to the other projects, the demonstration project at the detoxification service also experienced difficulty in meeting stated project goals and outcomes, and did not engage the local drug user organisation in their project. A significant issue in interviews with both consumers and staff was that of how to maintain consistency in consumer participation when consumers are only based at services for a relatively short period of time (on average one week) and are also very likely to be quite ill for a large proportion of this time. Given these circumstances alone, it would be very difficult to have meaningful engagement, training and an ongoing presence at services. For future reference it would be advantageous to examine ways in which these obstacles may be overcome. In particular, this is one service environment where the concept of accessing 'past consumers' of the service may have some application.
It should also be noted that detoxification services are also environments where fixed concepts such as 'current user', 'ex-user' could be problematic and act as barriers to consumer participation. The main reason for this is that consumers access detoxification services for many reasons, including for court references, wishing to take a temporary break from licit or illicit drug use, wishing to detox from only one substance while continuing to use others, as an entry requirement for a residential program, while waiting for a place on a pharmacotherapy service, etc. This diversity also means that strict definitions of current or ex-user are unlikely to resonate with current or past consumers of detoxification services and could act as significant barriers to a group that is already difficult to engage in consumer participation.