AOD SECTOR
Summary of findings from forum held 6 November 2014.
The Drug and Alcohol Office, in partnership with the Western Australian Network of Alcohol
and Other Drug Agencies and the Western Australian Substance Users’ Association wish to
thank Professor Margaret Hamilton (forum facilitator) and the 70 participants who attended
the forum and contributed and shared their ideas. This report provides the key themes that
came from the group discussions.
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Contents
Appendix One – Presentation by Professor Margaret Hamilton ................................................. 21
Appendix Two –Presentation by Carina Calzoni, Clear Horizon WA. ....................................... 27
Appendix Three - Summary of feedback. ....................................................................................... 29
The role of consumers is acknowledged as essential to informing AOD service delivery, policy and planning. For the purpose of this document, a consumer is:
an individual currently or previously engaged in services
an individual who currently or previously have used AOD but are not engaged with services
an individual who may be concerned about their AOD problems and contemplating action, yet are unsure about accessing services
a family member or significant other who is impacted by an individual’s use of AOD.
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1.0 Introduction
It has long been recognised that consumers make a valuable contribution to the
planning, implementation and evaluation of health services, including alcohol and
other drug (AOD) services. There is also strong support from consumers and service
providers in Australia to improve consumer involvement at a higher level including
policy and strategy development, planning, monitoring and evaluation.
Evidence shows that consumer involvement can contribute to a range of positive
outcomes including development of state and national policies and strategies, as
well as services and programs that appropriately reflect the needs of the populations
they are intended to serve. Currently in Western Australia, AOD service providers
are at varying stages in relation to working to involve consumers of their services in
their organisation.
In 2014, the Drug and Alcohol Office (DAO) contracted an independent consultant,
Clear Horizon WA, to conduct research with 53 consumers and their families and 37
service providers. The research aimed to determine current levels of consumer
involvement broadly in the AOD sector, barriers to implementation and also how
consumer involvement could be improved in the sector. Consumers reported that
there is limited experience of engagement in strategic policy and planning at the
organisational/sector level. Consumers report that most activity relates to individual,
survey style feedback regarding service delivery. While consumers are keen to be
involved, they also report barriers to being involved. Service providers also reported
some of the barriers they face with regards to involving consumers, as well as an
overview of current activities.
Following this research, on 6 November 2014, DAO in partnership with the Western
Australian Network of Alcohol and Other Drug Agencies (WANADA), and the
Western Australian Substance Users’ Association (WASUA) held a forum of 70
consumers to discuss ways to improve consumer involvement in the alcohol and
other drug (AOD) sector. The forum aimed to validate the previous research findings
with a broader group of consumers and to determine priorities for implementing
future consumer involvement strategies.
Consistent with the research conducted by Clear Horizon, the forum found that
consumers have a strong interest in participating in a range of activities in the AOD
sector, from involvement in individual treatment planning to input in policy and
planning at the sector level. Some of the key findings identified through the forum
included:
Desire for more opportunities for consumers to be involved in strategic policy
development and planning, as well as the ability to provide meaningful feedback
at the organisational level.
Support for consumers through training (co-designed by consumers and service
providers), up-skilling and peer support to enable more people to participate.
The need to break down barriers for consumers to give feedback at the service
level, including the opportunity for consumers to provide meaningful, confidential
feedback to their service provider.
Opportunities for consumers to be involved at all levels of the AOD sector need to
be ongoing, rather than ‘one off’ and more consumer voices need to be heard at
all levels.
The need to develop strategies to reduce the stigma associated with being an
AOD user.
The forum identified that most consumers are familiar with suggestion boxes or
feedback forms that are provided at the service level. However, a common theme
was that these processes can often be ‘one-way’ and without knowing what has
happened as a result of providing feedback, the process loses meaning.
The forum also identified a range of barriers for consumers who wish to participate in
consumer involvement processes. The barriers included access and a lack of
consideration for other commitment requirements through to expressing the need for
support, training and mentoring to be able to participate. A key theme raised by
consumers throughout the forum was the stigma experienced by AOD users which
was commonly raised as a barrier to participation.
Consistent with research, the findings of the forum also demonstrate that there
needs to be a comprehensive range of strategies in place to progress activities to
involve consumers in the AOD sector and that one strategy will not be effective in
isolation.1
Following the consumer forum, a session was held with AOD service providers and
an update of the key points raised by consumers was provided, as well as an
overview of the principles of consumer involvement.
While there are currently service providers who are actively engaging consumers to
inform a variety of strategies at the service level, the forum showed that there is a
need for greater consumer involvement in the AOD sector generally. Previous
research shows there is support from the sector to build on and progress current
initiatives. However, ensuring appropriate supports are in place for both consumers
and service providers requires further planning and consultation and it must be
acknowledged that progress will need to occur over a period of time.
1 Hinton 2010, Voices on choices – working towards consumer-led alcohol and other drug treatment, Anglicare Tasmania.
5
strategy development);
research which may include co-design of materials and interview questions by
researchers and consumers, as well as peers conducting the research.
representing or informing representation on sector-wide state and/or national
planning, policy and strategy development.
Throughout this report consumer involvement may be referred to as consumer
participation or consumer engagement. For the purposes of this report they all have
the same meaning, and the area that they refer to (i.e. service or sector level) will be
made explicit.
Consumer involvement in treatment and service planning, policy development and
evaluation of services is important for all health care services, not just the AOD
sector. Not only is consumer involvement an ethical and democratic right, it also
helps to improve outcomes for consumers and make services more responsive to
the needs of consumers.2
At the service level, consumer involvement covers a number of processes from
seeking consumer feedback through surveys, suggestion boxes, focus groups and
forums, consumer participation in resource development, staff selection and training
as well as consumers involved in decision making and setting strategic policy.
Consumer involvement at the sector/state/national representative level
Findings from four Australian studies looking at consumer involvement in the AOD
sector show that the area needing most action is in relation to consumer input into
the development of AOD policy.3 Consumer involvement at the AOD sector level
enables state and national policies and strategies to take into account the
consumers’ perspective; ensure strategies are more relevant; decrease likelihood of
unintended adverse effects, stigma and discrimination; and greater response from
consumers when implemented.
2 Commonwealth Department of Health and Aged Care 2000, Improving health services through consumer participation – a
resource guide for organisations. Consumer Focus Collaboration. 3 Professor Margaret Hamilton. 6 November 2014 – see Appendix 1.
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Support for Consumer Involvement
At a national level, the National Drug Strategy 2010-2015 outlines that the three
pillars of demand, supply and harm reduction are to be supported by consumer
participation (for example including consumer representatives on working parties and
attendance at forums). Acknowledging that all AOD consumers are different, the role
of consumers in designing treatment services is also raised in the Strategy.
To inform consumer involvement at the service level, a survey by the Australian
Injecting and Illicit Drug Users League (AIVL) aimed to measure the levels of
consumer involvement activities across a range of AOD service types in Western
Australia, Victoria and New South Wales. The survey found that many services
undertake processes to seek feedback from consumers in the style of
questionnaires, suggestion boxes and focus groups. While the survey found that the
majority of service providers and consumers were interested in promoting consumer
engagement mechanisms, the survey also found a number of gaps in consumer
involvement processes including:
a lack of understanding among service providers about the intent of consumer
involvement activities
activities
a low level of consumer involvement in decision making; and
low consumer awareness of consumer involvement activities or complaints
processes.4
The consultation undertaken by Clear Horizon for DAO in 2013 shows that current
levels of consumer involvement are largely consistent with the findings of the
previously mentioned AIVL study. Consultation with service providers shows that
they are keen to progress activities to involve consumers in the design of their
service, as well as to engage consumer representatives in meetings and other
activities. However, service providers report a number of barriers to engaging in
consumer involvement activities, including (but not limited to) resourcing constraints,
fear that activities would appear tokenistic, concern for consumers’ well-being and
lack of managerial support.
Agencies seeking accreditation against a number of standards are required to
demonstrate activity regarding consumer involvement. The WANADA Standard on
Culturally Secure Practice is one such set of standards which outlines seven
performance expectations, each with a series of associated essential and good
practice criteria. Three of the performance expectations directly relate to consumer
involvement including:
4 Hinton 2010, Voices on choices – working towards consumer-led alcohol and other drug treatment, Anglicare Tasmania.
7
Defining and understanding the target community – the agency understands the
cultural needs of its community
Rights and responsibilities – the agency recognises consumers as ‘health
consumers’ with related rights and responsibilities
Consumer-focussed practice – the agency encourages consumer participation
and considers feedback from consumers on an ongoing basis to inform planning
and development of non-discriminatory practice.5
However, low awareness of consumer involvement activity (as reported by
consumers through both the qualitative research conducted by Clear Horizon and at
the forum) suggests that consumers are not engaged in a meaningful way.
In Western Australia, consumer involvement in other sectors, such as the mental
health sector is reported as being established at the sector level, although gaps still
remain. However, there is a broad view that the AOD sector is being ‘left behind’.
While it is acknowledged that there are similarities between some mental health and
AOD consumers, there are also clear differences between AOD and mental health
consumers and service provision, and different considerations in sector planning and
policy development that have been highlighted in a number of forums.
In the context of the amalgamation of the Drug and Alcohol Office with the Mental
Health Commission, there is a strong call from the AOD sector for the development
of mechanisms to promote AOD consumer involvement. Learnings from other
service sectors in Western Australia can be applied to the AOD sector. For example,
the mental health and disability service sectors have peak consumer advocacy
organisations to promote and support consumer interests and involvement. These
bodies are independent of government and service delivery and seek to empower
consumers to have a greater voice in their respective sectors.
5 WANADA 2012, Standard on culturally secure practice (alcohol and other drug sector), 1
st edition 2012.
Developmental Disability WA (DDWA) is a systemic advocacy body representing
families, organisations and individuals concerned with the rights and needs of people
with intellectual and other developmental disabilities. DDWA provides a coordinated
and united voice advocating for the right of people with disabilities and for the
provision of the opportunities, support and services they and their families require.6
The role of the DDWA is to:
Independently represent the collective views of members on matters relating to
developmental disability to Government.
Provide a forum for members to discuss and share information relating to the
needs of people with developmental disabilities.
Provide members with an information service on matters relating to
developmental disability.
Advocate on behalf of people with developmental disabilities and their families on
issues that impact on the care, health, safety and welfare of people with
developmental disabilities.
What makes for good consumer involvement?
There are a number of underlying principles that have been identified in existing
frameworks and research papers that are considered ‘best practice’ for consumer
involvement activities (not limited to the AOD sector). Many of these considerations
were raised by consumers at the forum as being a priority for activities in Western
Australia and include consideration of the following factors:
Participation results in cultural, sector and organisational change, it is a
reallocation of power between “experts” and consumers.
Participation is built from the bottom up and is supported from the top down.
Multiple strategies ensure a range of people are able to participate at the service,
organisational and sector level. This includes support for consumers as well as
education and support for people working within the sector.
Involvement of consumers, including family members and significant others, is
promoted from the start of a process and at all levels of the organisation or sector
initiative.
Consumers and people working within the sector are supported appropriately to enable effective and sustainable participation
Advocacy from individuals and organisations who are independent of the health system is an essential component of quality improvement activity.8,9,10
6 Developmental Disability WA 2014 Annual Report available at ddc.org,au/constitution-annual-reports/
7 DAO, WANADA and WASUA wish to acknowledge the expertise of Developmental Disability WA and Ms Taryn Harvey.
8 Commonwealth Department of Health and Aged Care 2000, Improving health services through consumer participation – a
resource guide for organisations. Consumer Focus Collaboration. 9 NSW Health 2005, Consumer Participation in NSW Drug and Alcohol Services – Guide, Mental Health and Drug and
Alcohol Office.
The existing research and consumer-based organisations provide guidance as to
how efforts can be directed in Western Australia to bridge the gap in consumer
involvement in the AOD sector. However, it is clear that there are a range of factors
to consider in the planning and implementation phase to ensure that consumers and
service providers have the appropriate supports available.
3.0 Forum Overview
The forum was independently facilitated by Professor Margaret Hamilton. Professor
Hamilton has national research experience in the area of alcohol and other drugs
and has previously worked on projects to improve consumer involvement in the AOD
sector. To set the scene and to explain the purpose of the forum, Professor
Hamilton gave an overview of the forum and spoke about:
the role of consumers in helping to make better services and a stronger AOD
sector for the future.
that there is an increasing interest in involving consumers in AOD planning and
policy and the way in which services are provided.
consumer involvement being broader than just an individual’s personal
experience.
the need for AOD consumers to have their voice heard clearly, and not only
through other sectors.
Professor Hamilton also outlined the amalgamation of DAO with the Mental Health
Commission and added the importance of ensuring that the views of AOD
consumers are heard and acknowledged into the future. A common theme raised at
the forum by consumers was the differences between AOD and mental health
consumers and the need for AOD consumers to have a separate voice.
Acknowledging the overlap between mental health and AOD issues was also raised.
Following Professor Hamilton’s overview, Carina Calzoni from the research company
Clear Horizon WA spoke about the research that the company previously conducted
with consumers and service providers on behalf of DAO. Carina spoke about what
the company found from talking to a range of consumers, family members and
service providers in relation to consumer involvement.
These presentations can be found in Appendix One and Appendix Two.
Participants then worked in small groups to discuss topics and questions with key
themes summarised below. The summaries aim to capture the key topics raised by
all of the groups.
10
National Mental Health Consumer and Carer Forum 2010, Consumer and Carer Participation Key Issues and Benefits.
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4.0 Workshops
The first workshop session sought to validate the findings from the research
previously conducted by Clear Horizon and to provide participants with the
opportunity to contribute additional information to the findings.
4.1 Workshop Session One
In the first workshop session, Professor Hamilton asked participants to think about
the research previously conducted by Clear Horizon. The following questions were
asked:
Do you agree with current levels of consumer involvement in the AOD sector as
previously reported by consumers and service providers?
Do you agree with the barriers (to being involved as a consumer) that have
previously been identified? Are there any others to consider?
Question 1: Do you agree with current levels of consumer involvement in the
AOD sector?
The forum participants worked in small groups to discuss their previous experiences
of consumer involvement in the AOD sector. The groups discussed whether they
agreed with the current levels of consumer involvement as reported by participants in
the Clear Horizon research.
Consistent with the Clear Horizon research findings and other previously published
research, the forum participants agreed that consumer involvement activities with
AOD consumers are largely focussed around suggestion boxes, questionnaires and
feedback forms at the service provider level. Participants agreed that feedback forms
can feel tokenistic and provide limited opportunity for meaningful feedback,
particularly if the purpose of the form or questionnaire is not made clear, or if
information about what has happened as a result of providing feedback is not
provided.
Some participants raised that they had also been involved in university research
projects and focus groups. Only a few people mentioned that they were consumer
representatives on service provider reference groups.
Similar to the Clear Horizon research, there was no mention of involvement in high
level AOD policy and planning processes by the forum participants. Participants
noted that more collaboration is needed between policy makers and consumers and
felt that in many cases, opportunities for involvement are not brought to the attention
of consumers.
Participants noted that more consumers need to be involved as their voices are not
often heard. More involvement was seen to be needed at the individual level; (for
example when developing a treatment plan and avoiding a one size fits all approach)
at the service development level (provide feedback on hours of operation, services
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available); and also at the higher organisational and sector level in policy and
planning (ability to provide feedback on government policy).
It was evident that overall, most consumers do not have an awareness of what their
treatment agency is doing to involve consumers in the design of their service and
there was a strong interest to know what individual agencies are currently doing.
However, the low level of consumer awareness does not imply that service providers
are not currently engaging consumers and it is acknowledged that a requirement for
service accreditation includes expectations regarding consumer involvement and
community consultation.
Forum participants also acknowledged that at some times, it is not always possible
for people to provide feedback, particularly taking into account different stages of
treatment.
Other key points raised as summarised by Professor Hamilton were:
there is a clear desire to involve consumers in AOD policy and planning at all
levels.
AOD consumers are diverse and a range of views need to be represented.
the views and needs of family members can sometimes be different to the
individual.
consumers want input in the development of individual treatment plans.
people need to be assured of confidentiality. Space to provide honest and open
feedback is important.
it’s important to understand the context in which people are giving feedback –
people might not always be in the right frame of mind.
Question 2: Do you agree with the barriers that have been identified?
Forum participants largely agreed with the barriers that were presented in the Clear
Horizon research regarding involvement in consumer activities. In addition, each
table was also asked to record any other barriers that have previously or could
potentially prevent consumers from being involved in a range of activities. The
barriers that were identified by participants at the forum have also been reported in
other research reports regarding consumer involvement, both specific to AOD
consumers and also broader health care settings and are summarised below.
One of the biggest barriers identified by participants (based on previous experience
or in contemplating involvement in future activities) was the stigma and
discrimination experienced by AOD users, which was consistent with the Clear
Horizon research. Media portrayal of AOD issues was raised by forum participants
as a key contributing factor in generating wider community views towards AOD
consumers. Participants raised the need to provide education to the whole of
community as well as specified professions (including GP’s and pharmacists) to
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reduce stigma. Furthermore, participants raised that previous experiences of stigma
can lead to a lack of confidence when considering participating in future
opportunities.
At the service level and consistent with the previous research, participants
expressed concerns about their views remaining confidential. Many people noted
that a barrier to giving feedback was not knowing how the information would be
used. The fear that feedback could negatively impact treatment was also a common
theme raised by the forum participants. However, in some instances, participants
raised that the opportunity to provide meaningful face-to-face with service feedback
would be useful and empowering. Confidentiality concerns particularly when living in
smaller communities, was also raised.
Participants also spoke about not bothering to provide feedback at the service level
as when they had in the past, nothing had happened as a result. Participants raised
that it was important for the reason for providing feedback to be clearly stated upfront
and equally for service providers to give feedback about what has happened as a
result. Staff changeover and lack of consistency was also a barrier for feedback to
progress and be implemented.
Participants also raised that feedback forms aren’t always ‘user friendly’, don’t
provide an opportunity to give meaningful and detailed feedback. Some participants
had concerns that the form might not be read or go anywhere.
The power imbalance between consumers and service providers was also raised as
a barrier for consumers. Participants raised that the consumer voice needed to be
equitable with service providers and that in the past, services had been unreceptive
to feedback and complaints.
Another barrier raised was the use of jargon instead of plain language and
information overload. Low levels of literacy was also seen to be a barrier for some
people.
The need to acknowledge personal circumstances and that it is not always ‘the right
time’ for people to be involved was also raised by participants. Similarly, other
commitments can often be a barrier for people who wish to provide input into
different processes.
A key barrier for the forum participants included not being aware that there was an
opportunity to be involved and that consumers can be a part of a range of processes,
particularly at the policy and planning level.
Participants also spoke about the barriers that are faced when accessing treatment
services which included:
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Services being understaffed and under-resourced and not being able to keep
pace with demand, resulting in waiting lists.
Services not meeting the needs of consumers.
Handballing between services instead of a ‘no wrong door’ approach.
Not enough services for women and children.
No smoking policies deterring from accessing treatment.
Little consideration of complex trauma needs.
Service hours not being accessible and not practical with other commitments.
Not enough information being readily available about different services.
Not enough assistance for basic needs for people to access services eg access
to public transport.
Price of methadone being too expensive.
Services not working with Aboriginal people in a culturally inclusive way.
4.2 Workshop Session Two
The second workshop sought to identify the suggestions and priorities for improving
consumer involvement in the AOD sector. Professor Hamilton asked each group to
brainstorm a list of ideas about how consumer involvement can be improved.
Once each group had come up with as many ideas as they could, each table was
then asked to identify their top three priorities to share with the broader group.
Professor Hamilton asked each table at a time to contribute a priority and then asked
the following tables to keep adding to the list until all priorities had been raised and
written down.
Through the sharing of ideas, it was evident that a lot of the groups had nominated
similar priorities. A lot of support and enthusiasm was shown for the potential range
of opportunities that could be implemented to improve consumer involvement. The
collective priorities that were raised in the group discussion are listed below. The
priorities relate to consumer involvement as well as broader actions for the AOD
sector.
Ensuring more consumers are involved and more voices heard – access
consumers through existing groups.
General community awareness programs to reduce stigma of being an AOD
service user.
Use everyday language – avoid jargon when engaging with consumers.
Involve GPs in gaining access to consumers.
Develop consumer networks that can be consulted on specific issues, are
solution focussed and include follow up.
Increase the range and number of treatment services available including
residential rehabilitation services for Aboriginal people.
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Involve consumers in the development of information and education materials.
Inform service providers of outcome from forum and follow up with levels of
consumer involvement activity.
Develop AOD consumer participation policies.
Recognise the difference between mental health and AOD sectors and
consumers; acknowledge where they connect and where they don’t.
Share positive stories to reduce stigma and give hope.
Establish formalised complaint mechanisms.
Maintain the tempo and fund a specific role to keep activity progressing.
AOD organisation boards must have consumer members.
Ensure ways to maintain confidentiality throughout consumer involvement and
feedback processes, particularly to avoid fear of changes to treatment received.
Independent evaluation/satisfaction surveys of services.
In addition to the strategies listed above, the key themes to emerge from the
priorities and the suggestions recorded at each table are as described in more detail
below. These themes are also largely consistent with principles of existing
frameworks and research guiding best practice in relation to consumer involvement
in general health care settings and also within the AOD context.
Increase the number and range of opportunities for consumers to be involved
in the delivery of AOD services, policies and programs. This also requires
increasing awareness of these opportunities on an ongoing basis and as they
arise.
Make sure consumers know where to provide feedback.
Provide case studies of what has worked well.
Hold regular and more forums – including on specific issues and by relevant
target group (eg alcohol, illicit drugs, Aboriginal people, young people, homeless
people).
Let consumers know that their involvement is required and important.
Provide better mechanisms for consumers to have a voice; for example a website
with no login/identity.
Establish newsletters that consumers can contribute to.
Establish working groups in local hubs so that people can contribute close to
home.
Let people know how they can put their hand up to be a consumer
representative.
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Ensure a broad representation of consumers and a diverse range of people
speaking.
Give service providers information about upcoming opportunities to pass onto
consumers.
Service providers to hold forums at the agency level to feed into larger
processes.
Provide consumers with a sense of responsibility – encourage involvement in
programs with tangible outcomes and achievements.
More consumer led processes and engage consumers as speakers.
More involvement.
Consumer involvement activities regarding the AOD sector should be
independent to government and funded service providers.
More education and prevention activities in schools to reduce problems.
A system-wide attitudinal change to consumer involvement is required.
Suggested strategies:
There needs to be a fundamental attitude change – acknowledge the expertise
and experiences of consumers and their families.
Consumers to inform development of consumer participation position papers on
topics such as peer workers, engaging consumers in staff selection processes,
consumer engagement positions.
Increase and support AOD consumer input into relevant policy and broader
issues than AOD (for example general health issues, homelessness).
Consumers to be involved in ‘setting the agenda’ - not trivial topics.
Demonstrate solutions, success and hope.
Reclaim consumer ownership.
Dissolve hierarchy.
Consumer culture supported by government.
Consumers are an underutilised resource.
Provide support to make it easier for consumers who want to be involved.
Suggested strategies:
Provide funding for and develop a joint training package for consumers and
service providers.
Peer support and mentoring.
Develop strategies to build self-esteem and have a buddy program to provide
training to consumers who want to be involved.
16
Promote cultural awareness so that Aboriginal people feel more comfortable to
participate.
Involve more young people and/or engage people who are trained in speaking
with young people.
Consumer liaison officers to act as a mutual advocate to bridge the gap between
stakeholders and service providers.
Acknowledgement of consumer time through payment, recognition of skills and
contribution.
Supervision and support so that consumers can participate.
Give as much notice as possible and provide information prior to an event,
including awareness of sector specific language.
Provide a safe space.
Ensure facilitators/people engaging with consumers have appropriate skills to ‘do
no harm’.
Increase participation by reducing stigma and by promoting inclusion
positivity and hope.
Suggested strategies:
Develop statewide media strategies to remove the stigma experienced by people
affected by AOD use.
Reduce stigma by having champions that speak about AOD issues and combine
with mental health sector when relevant.
Work with media to reduce sensationalising AOD use and related problems.
Promote positive stories and encourage hope through the media.
Reduce discrimination between licit and illicit drug use.
Work with pharmacies to reduce discrimination (for example be served in turn
and not have to wait) and establish a register of ‘AOD friendly’ pharmacies.
Flexibility in job roles and criteria to increase access to employment (for example,
criminal record screenings can increase stigma in the workplace).
Information pamphlet on consumer participation at each agency.
Ensure accountability
Suggested strategies:
Establish a structure to provide regular feedback to consumers.
Service providers to provide a report at the end of each year to validate that
consumer involvement has occurred.
Evaluation of consumer activities to make sure consumers have the opportunity
to have an equal say.
Following through with consumer suggestions.
Publish results of consumer satisfaction surveys.
Develop a system that allows consumers to give services a satisfaction rating.
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Suggested strategies:
Service providers able to make referral to another agency if they don’t provide the
relevant services.
Better training among general practitioners to refer people to AOD services.
Introduce consumer ratings of AOD services.
Better promotion of services.
Recognition that one model doesn’t fit all.
Increase family member’s awareness of places they can go for support.
5.0 Summary and recommendations.
The forum identified that consumer involvement in the AOD sector is in the early
stages of development and there is a long way to go in changing the culture to
ensure that consumers are supported to actively participate at all levels and that a
range of short-term and long-term strategies need to be progressed to support
consumers and service providers going forward. It was evident that while participants
had varied experiences in relation to consumer involvement there was a strong
desire for more engagement, opportunities and action in the area.
Feedback received from the consumer forum participants was positive overall and
the importance of the forum in bringing consumers together was noted. In their
feedback, participants noted the respect shown at the group discussions which
allowed for open and honest information sharing. Participants also noted that they
would have liked more time for discussion and information sharing as opposed to
presentations, as well as to have seen consumers involved in the delivery of the
forum (see Appendix Three for feedback summary).
The discussions at the forum built on previously conducted research commissioned
by DAO. However, the workshop discussions reinforced that there are a lot of
strategies that need to be in place to support consumers, no matter how they wish to
be involved. Providing support in the form of training, resources, peer engagement
are needed to enable this to happen.
Addressing and breaking down barriers such as stigma, not feeling empowered and
fear of feedback not being anonymous and potentially impacting treatment needs to
be looked at over time. Community awareness of AOD issues to reduce stigma and
promotion of connection to community was a commonly raised theme.
A project to identify strategies to reduce stigma and discrimination experienced by
AOD users has commenced in Western Australia. While this is a long-term strategy,
18
it is anticipated the outcomes of this project will contribute to consumers feeling
empowered, which links to the objectives of consumer involvement processes.
A key finding from the forum was that consumers wish to have a stronger voice,
individually and collectively. Building the capacity of individuals to participate in
processes was a key theme throughout the forum. It was raised that AOD
consumers are diverse, with unique circumstances changing at any time. Similar to
other sectors, a consumer body could provide skills to consumers to take action
around the issues relevant to their own and family circumstances, as well as provide
a collective representative voice on broader issues.
A strong theme to emerge from the forum was the need for an attitudinal change to
consumer involvement and to give consumers a sense of ownership and a role in
‘setting the agenda.’ As raised by Professor Hamilton at the forum,
recommendations from four Australian studies looking at consumer participation in
the AOD sector show that the area needing most action is in relation to consumer
input into the development of AOD policy.11 A collective consumer voice through the
establishment of a consumer body, independent of government and service delivery,
could facilitate greater consumer input into AOD sector policy and planning.
Ongoing consultation with consumers and service providers is necessary to continue
with progressing actions in the long term, however the following recommendations
propose a way forward in working towards meaningful consumer involvement within
the AOD sector.
progress strategies.
Ongoing opportunities through forums, targeted meetings and events are essential to
ensure that strategies to improve consumer involvement meet the needs of key
stakeholders, primarily consumers. These need to continue.
As mentioned throughout the report, there is a considerable amount of planning and
consultation required in working towards greater consumer involvement in the AOD
sector. This forum demonstrated the value in bringing consumers together to share
and plan ideas and to promote connectivity and inclusion.
Recommendation Two: Develop a common set of principles.
It is recommended to work with consumers, service providers and policy developers
to develop an agreed set of principles upon which to base activities for progressing
consumer involvement in the AOD sector in Western Australia.
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Research shows that there are a number of underlying ideas and principles that
should underpin consumer involvement, many of which were discussed at this forum
including but not limited to establishing trust, respect, support and accountability. 12
Recommendation Three: Ensure appropriate support mechanisms to break
down barriers.
Appropriate mechanisms need to be established to support consumers to participate
and remove barriers. These supports are identified by research and best practice
guides as essential to the process.13
The forum demonstrated that consumers are willing and keen to participate in a
range of activities in the AOD sector. However, it is important to first and foremost
‘do no harm’. The list of barriers identified by consumers, (which are consistent with
other research) demonstrates the need for appropriate supports and structures to
encourage and assist consumers to participate. However, planning and consultation
needs to occur to ensure that the strategies are appropriately developed. Strategies
to break down barriers may occur in the short and long term.
Recommendation Four: Develop training for consumers and service providers
to participate in processes.
Training and up-skilling for consumers and also service providers was identified at
the forum as an essential strategy to improve and encourage consumer involvement.
Planning for the development of a training package (based on the key principles and
in consultation with service providers and consumers) will be a key strategy in
progressing.
Recommendation Five: Understand the current context.
It is recommended that this be achieved through a survey of policy developers and
service providers, and consultation with consumers. The information gathered can
then be used to inform consumers with an overview of where the sector is currently
at regarding consumer involvement.
While the previously conducted Clear Horizon research project identified general
themes relating to consumer involvement activity across the sector, it is important to
get specific information from policy makers and service providers to map what is
currently happening in relation to consumer involvement activities to enable an
evaluation of strategies applied.
12
Commonwealth Department of Health and Aged Care 2000, Improving health services through consumer participation –
a resource guide for organisations. Consumer Focus Collaboration. 13
NSW Health 2005, Consumer Participation in NSW Drug and Alcohol Services – Guide, Mental Health and Drug and Alcohol Office.
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Recommendation Six: Work towards consumers being involved at all levels.
Throughout the Forum, the need to have consumers involved at all levels was
raised. A number of strategies were raised to achieve this, including consideration of
establishing a consumer body within the AOD sector.
Working towards consumers being actively engaged at all levels (from service
delivery through to sector policy and planning) is important to ensure the best
outcomes for consumers, services and the sector as a whole.
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References
Hinton, T., Voices on choices: working towards consumer-led alcohol and drug treatment, ed. T. Anglicare. 2010, Hobart: Anglicare Tasmania.
Clarke, M. and R. Brindle, Straight from the source: a practical guide to consumer participation in the Victorian alcohol and other drug sector. 2010, Carnegie, Vic.: Association of Participating Service Users.
NSW Health, A guide to consumer participation in NSW drug and alcohol services. 2005, Sydney: NSW Health.
Western Australian Network of Alcohol and other Drug Agencies (WANADA), Standard On Culturally Secure Practice (Alcohol and other Drug Sector). 2012, Perth: Western Australian Network of Alcohol and other Drug Agencies (WANADA).
Treloar, C., et al., Evaluation of consumer participation demonstration projects in five Australian drug user treatment facilities: the impact of individual versus organizational stability in determining project progress. Subst Use Misuse, 2011. 46(8): p. 969-79.
Australian Injecting and Illicit Drug Users League (AIVL) 2008, Treatment Service Users Project final report, Australian Injecting and Illicit Drug Users League (AIVL), Canberra, http://www.aivl.org.au/files/AIVL%20_TSU_200804.pdf .
Australian Injecting and Illicit Drug Users League (AIVL) 2011, Treatment Service Users Project: Phase Two final report, Australian Injecting and Illicit Drug Users League (AIVL), Canberra, http://www.health.gov.au/internet/main/publishing.nsf/Content/needle-tsu2
Hinton, T 2010, Voices on choices: working towards consumer-led alcohol and drug treatment, Anglicare Tasmania, Hobart, http://www.anglicare- tas.org.au/Research/ServiceDevelopment/ConsumerEmpowerment.aspx
Brener, L, Schultz, L, Schultz, M, Treloar, C & Wilson, H 2011, Network of Alcohol & Other Drugs Agencies (NADA) Service User Participation Scoping Study, LMS Consulting Sydney, www.nada.org.au/media/17047/lms_final_report_2011.pdf.
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Appendix Three - Summary of feedback.
Participants were invited to provide feedback about the forum and to provide
suggestions for improvement. A summary of feedback is provided below. 14
Question One – As a result of today’s forum, are you aware of more ways that consumers can have a voice in planning, policy and the way in which alcohol and other drug services are provided?
YES – 53 NO - 8
Question Two – Did you have the opportunity to share your ideas?
YES - 61 NO - 1
Summary of comments:
While the comments were overall positive, some people commented that the forum could have been improved by having more opportunity for discussion, more time for participants to have their say and less time spent with presentations.
Many participants raised the respect shared by participants and the opportunity for everyone to have a say in the group format was noted.
Participants were encouraged by the honest and open discussion that took place and felt the forum was a step in the right direction to having greater consumer involvement.
14 Not all responses equal the total number of forms received (total of 62 forms received).
Question Three – Was the information provided to you before the forum useful?
YES - 55 NO - 4
Summary of comments:
The extent to which the pre-forum information was useful varied for participants. Some commented that it was extremely useful, some to a certain extent and some not at all.
A comment was provided that it would have been useful to have a better idea of who was involved (the types of services represented, the agencies that were in attendance).
Question Four – Was the forum well organised
YES - 61 NO - 1
Summary of comments:
Participants commented the forum was planned well, allowed for friendly and open discussion.
However, participants again mentioned that they would have liked more opportunity for workshops, less time spent on presentations and to have had a consumer speak at the beginning of the forum.
A suggestion to better establish ground rules for asking questions at the beginning of the day was also raised.
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Question Five – What was the most useful part of the forum?
(Could select more than one option).
Question Six – Is there anything else you would like to say about the forum
Summary of discussion:
Hold more forums more often.
Would like to know how the results will be used and what impact the forum will have on policy and service provision.
The workshops discussions were valuable and enjoyable.
Would like to continue to be involved in more opportunities.
Provide child care to encourage more women to attend.
Have smaller group sizes to encourage more discussion.
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Presentation by Carina Calzoni