Transcript of IMPROVING CONSUMER INVOLVEMENT IN THE AOD SECTOR …
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.
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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.
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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.
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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.
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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.
11
19
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.
30
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