Supporting Consumer, Carer and Community Participation in Central West Gippsland February 2008
. Acknowledgements This Kit has been developed by the Central West Gippsland Primary Care Partnership Community Participation Working Group, using the combined skills and knowledge of Working Group members, consumers and the former Community Advisory Council. Other resources have also been drawn on, including the Guide to Consumer and Carer Participation developed by Kilmany UnitingCare for the East Gippsland and Wellington Primary Care Partnerships, which drew heavily on documents prepared by the International Association for Public Participation, New South Wales Health, South Australian Human Services and LaTrobe University amongst others. Particular thanks are given to Banyule Nillumbik Primary Care Alliance for permission to make use of their Consumer Participation Resource and Training Kit for Service Providers. As organisations, we continuously use terms such as continuous quality improvement and best practice, but these terms are meaningless if consumers and carers cannot get the quality services they need. The most 2
effective way to find out what they need is to ask them. This kit forms part of our commitment to effective community participation. Central West Gippsland Primary Care Partnership 2008 3
Contents PURPOSE OF THIS KIT 5 WHY INVOLVE CONSUMERS AND CARERS? 6 WHAT IS A CONSUMER? 7 WHAT IS CONSUMER AND CARER PARTICIPATION? 7 FACTORS TO CONSIDER WHEN ENGAGING MEMBERS OF THE COMMUNITY 8 HISTORY OF CONSUMER PARTICIPATION IN THE PARTNERSHIP 9 ACHIEVEMENTS OF THE COMMUNITY ADVISORY COUNCIL 9 CURRENT COMMUNITY PARTICIPATION ACTIVITY 11 ROLE OF THE CENTRAL WEST GIPPSLAND PCP 14 RESOURCES TO SUPPORT CONSUMER AND COMMUNITY PARTICIPATION 15 CONSUMERS AND CARERS CHARTER 16 PROTOCOL FOR ACCESSING CONSUMER GROUPS 18 CONSUMER REIMBURSEMENT POLICY 20 COMPONENTS FOR INCLUSION IN AGENCY POLICIES 22 COMMUNITY PARTICIPATION TRAINING WORKSHOPS 24 AUDIT TOOLS 25 OTHER RESOURCES 26 REFERENCES 28 4
Purpose of this Kit This Kit has been developed by the Central West Gippsland Primary Care Partnership for use by primary health and community service agencies in Baw Baw Shire and Latrobe City to enhance the quality and effectiveness of the engagement and participation of consumers, carers and the wider community at any level of their organisational processes. The Kit includes: Principles behind consumer and community engagement. A brief history of the original CAC and its achievement. The role of the PCP including keeping and maintaining registers of consumer contacts and existing groups and the processes for accessing these registers. Consumers and Carers Charter. What constitutes a reasonable request of a consumer consultant and what they can expect to hear back. Information for Policy Development in regard to payment/gifts/reimbursements for costs incurred in participating in consultations; consent and privacy. Information regarding researching and obtaining evaluation processes and Audit Tools. Local training opportunities. A list of available resources held by CWGPCP. It is not intended that this Kit be strictly adhered to, or be the only resource used to guide community participation processes. The information and resources are for the use of member agencies and can be modified to suit specific needs as required. There is a wealth of information regarding consumer participation readily available and member agencies are encouraged to seek out further information. Some useful websites are provided at the back of the document, however this is by no means an exhaustive list. CWGPCP staff are also available to support member agencies, providing a key role in capacity building and organisational workforce development. 5
Why Involve Consumers and Carers? Participation in our own treatment, and planning for health and community services that affect us, is a democratic right, and improves the control that people have over their own lives. Research shows that how people participate in and experience services, and get feedback from them, improves service quality and is an essential component of accreditation. Participation in health care decisions also improves health outcomes, due to the additional knowledge, skills and changing attitudes and behaviors gained by consumers and carers, or by achieving better compliance with the advice of service providers. Evidence also shows that views of politicians or central bureaucrats have been softened or changed by hearing anecdotes and experiences of community members, by the force of numbers at public meetings, and by advocacy for the needs of particular population groups. The International Association for Public Participation (IAP2:2000) developed seven core values to assist organisations in making better decisions that reflect the interests and concerns of potentially affected people. They are: 1. The public should have a say in decisions about actions that affect their lives. 2. Participation includes the promise that the public s contribution will influence the decision. 3. The participation process communicates the interests and meets the process needs of all participants. 4. The participation process seeks out and facilitates the involvement of those potentially affected. 5. The participation process involves participants in defining how they participate. 6. The participation process communicates to participants how their input affected the decision. 7. The participation process provides participants with the information they need to participate in a meaningful way. It is vital to the integrity of the process of participation that practitioners: Are responsive to consumer and carer concerns and suggestions. Encourage actions that bring trust and credibility to the process. Encourage the disclosure of information relevant to consumer and carer understanding of issues. Advocate for an open process, not for a particular interest, party or project outcome Provide opportunities for consumers and carers to influence decisions. Make commitments in good faith. Support the practice of consumer and carer participation. Those seeking additional detail on evidence based participation practice are advised to refer to the Resource section at the end of this document. 6
What is a Consumer? We are all consumers of services. The terms consumer and carer are used throughout this Kit, but could be replaced in different sections by carer, patient, client, citizen, community or stakeholder. Community participation is another term used in the Kit as this can be quite different to consumer and carer participation and implies participation by members of the community in a broader sense, i.e. not just those with a direct connection to a service. What is Consumer and Carer Participation? Consumer and carer participation is either voluntary or paid participation by consumers and carers, in formal or informal planning, delivery, implementation, and evaluation of all activities associated with health and community services, as well as all processes which affect the lives of consumers and carers, through sharing of information, opinions and decision making power (Adapted from the Mental Health Council of Australia 2002). In determining community participation strategies, many sub-groups will exist in one geographic area and different engagement strategies will be needed. How you plan to engage indigenous groups, young people, those people who are homeless or those with a disability will require different strategies to maximise the process. To achieve effective consumer, carer and community participation it is recommended that persons employed within the primary health and community service sector be excluded from specific consumer participation projects, or serving as consumer representatives, because they already have access to the decision making process. It should be noted that consumers and carers have different needs, expectations and skills in participating in primary and health care services. Some may have skills and be willing to be involved at a corporate governance level by being appointed as members of Boards of Management. This will involve them in strategic planning and policy development. Others may have no particular interest in governance, but want to ensure that the way they or a family member were treated in an organisation doesn t happen again, through a change in service policy. Others may want to be involved for their own personal development. There will also always be those who are not interested in participating in any way other than to receive a service. It is important to begin the participation process with people who are already willing to be involved. Participation can occur through a variety of means. It may be via attendance at a public meeting, focus group or annual general meeting; it may be by completing a satisfaction or other survey; it may be through a telephone or personal interview; it may be through evaluation after attending a particular program, or even a personal discussion after a complaint. It is important to note that the process of engagement is more important than some of the content, and therefore consumers and carers should be involved in all stages of development to ensure processes are optimised. When working with consumer and carer groups it is important to clarify what will happen with any information obtained. This is to ensure that all who are participating understand how their views and comments will be used, and so that they do not have incorrect expectations. If obtaining views about a particular issue, and there are one or two solutions that would not be acceptable, participants should be made aware of this at the start of the discussions. It is also important to provide feedback at a later date about how the public participation process impacted on the program or issue being consulted on. 7
Factors to Consider when Engaging Members of the Community Before beginning to engage members of the community in any process, consider what methodology is to be used and whether issues such as child care needs, transport, and remuneration, either monetary or other need to be addressed. Whilst needing to reflect agency budgets, it is important acknowledge the time, cost and effort of participation by members of the community. Consideration also needs to be given to whether the information being sought is required from a consumer or a carer, often their perspectives/needs/issues are not the same and therefore it will be inappropriate to gather information for one from the other. Other strategies to consider when engaging members of the community could include partnering with other agencies to gather information/feedback. 8
History of Consumer Participation in the Partnership The Central West Gippsland Primary Care Partnership has been committed to community participation since it s inception in 2000, and to this end agreed in the latter part of 2000, after a thorough exploration of options, to recommend a model of consumer and community participation based around a Community Advisory Council. The CWGPCP Community Advisory Council (CAC) was established in December 2001 to facilitate an increase in consumer and community participation and information exchange with the health and support sectors. It consisted of seven (7) members - three (3) residents from Baw Baw Shire and three (3) residents from Latrobe City, and a Chair appointed separately. Members were selected on the basis of their capacity to represent the views and experiences of the community. The CAC was guided by a Steering Committee made up of representatives from Primary Care member agencies including the West Gippsland Healthcare Group, Latrobe Regional Hospital and Latrobe Community Health Service. (Initially GARSS were also involved). The CAC provided an ongoing structure to facilitate consumer input to the PCP using a variety of methods as well as fulfill the functions proposed for community advisory committees in the acute sector (West Gippsland Healthcare Group and Latrobe Regional Hospital). There was a core membership as well as an extended membership, depending on the work to be undertaken and the methodology. This model was considered to provide a pooling approach for resources, both consumer and organisational resources. The CAC could be commissioned by the primary care or acute care sector, or individual providers to undertake a variety of tasks. The three large acute and community health organisations within the PCP pooled resources to support the work of the CAC in the form of a community development worker. The Terms of Reference of the CAC were to: Invite the active participation of the community in the development, implementation and review of Primary Care Partnerships. Maximise exchange of information between the community and primary health care and acute providers. Advise and facilitate feedback between the community and service providers on the appropriate structures and processes necessary to ensure effective community participation in service planning and delivery. Undertake commissioned work for a range of organisations including the acute and primary health care providers. The CAC met monthly initially. The first three months were devoted to orientation of the service system across the two municipalities and the opportunities for community involvement. The CAC met with the Boards of the West Gippsland Healthcare Group, Latrobe Regional Hospital and Latrobe Community Health Service. It received presentations on the Burden of Disease, the PCP and its member organisations and the Proposal for the redevelopment of the Traralgon Hospital Site. Achievements of the Community Advisory Council The CAC was involved in the following activities: Working with the two Hospitals to prepare Hospital Quality of Care Reports for 2002. (Boards are required by DHS to report annually to their communities on the quality of care delivered within their institutions). Support of the submission to the Hospital Admissions Risk Program (HARP) by 9
LRH. This program is aimed at reducing emergency presentations to hospitals. Preparation of a Consumers and Carers Charter of rights and responsibilities, for adoption and use by all members of the Primary Care Partnership. This would mean that regardless of which service a person used, they could expect to be treated in the same respectful way. (This is included in the 2 nd section of this Kit) Contributing to the WGHG Master-planning process. Provided feedback to the PCP s Mental Health Priority Groups & Outcomes process. Other activities included participation on working groups including: CWG Fluoridation Committee. Traralgon Hospital Site Working Party. WGHG Accreditation Committee. WGHG Brochure Review. PCP Strategic Planning Day June 2004. WGHG Consumer Participation Audit. WGHG Accreditation Review. A review of the community participation processes of the CWGPCP was undertaken in 2005, involving a public forum, interviews with members of the CAC and input from member agencies. As a result of that review a new Community Engagement project was established, seeking to increase understanding regarding community participation by member agencies, and to provide a range of tools, training and other supports leading to an increase in participation by consumers, carers and members of the broader community. 10
Current Community Participation Activity The following excerpts give an overview of activities in consumer and community participation among member agencies of the PCP Community Participation Working Group as of 2007-08. For further information regarding any of these activities please contact the CWGPCP office for contact details. Latrobe Community Health Service As part of its Quality arm, Latrobe Community Health Service currently uses consumer surveys, telephone interviews and/or meetings with participants of groups/programs as part of a regular internal program review process. Three major program areas are reviewed each year as part of this process. Issues not directly related to the specific area being reviewed occasionally emerge during interviews; these are passed on to appropriate people/agencies for follow up. Whilst there is no formal procedure in place regarding this matter, it is considered an important part of our overall consumer participation strategy. A formal complaints and compliments program is also in place and information provided through this process also forms part of the consumer participation activities at LCHS. Latrobe Regional Hospital Latrobe Regional Hospital has a Community Advisory Committee (CAC) to reflect community views to the Board of Directors and the Executive of the Hospital. The CAC consists of seven community members and two Board Directors and meets six times each year. The Latrobe Regional Hospital Diversity Taskforce is a subgroup of the Community Advisory Committee. The Hospital s Customer Services Department receives, monitors and responds to compliments, complaints and other patient feedback received regularly through surveys and suggestion schemes. The Hospital also participates in the Victorian Patient Satisfaction Monitor, a comparative survey of samples of recent patients from across Victorian public health services. Latrobe Regional Hospital Mental Health Services employs both consumer and carer consultants who are key to ensuring effective communication between consumers, carers and clinicians. The consultants participate in the evaluation of clinical services, selection of staff, educating community groups and health professionals about the needs of consumers and carers in the mental health service system as well as providing one-onone support for clients and carers. West Gippsland Healthcare Group West Gippsland Healthcare Group formally re-established its Community Advisory Council late in 2006. All areas of the Baw Baw Shire are represented on the Council which meets monthly. In particular, the Council offers layman s comments on publications (for example written health information) and policy documents and contributes to the writing of the Quality of Care report. It also contributes to the development and monitoring of the organisations cultural diversity plan. Other consumer participation strategies used at WGHG include undertaking specific program surveys and organisational wide patient satisfaction surveys (which are benchmarked statewide). The community is invited to participate in the strategic planning process through focus groups, aged care forums etc. Current in-house groups provide information and feedback on particular program areas and groups. 11
West Gippsland Healthcare Group reports back to the community through the annual Quality of Care report Gippsland Accommodation and Rehabilitation Support Service GARSS Inc recognises the value of consumer participation. GARSS has consumer representation on the Board of Management and has also developed Consumer Representative positions. Consumer Representatives are elected by their peers to represent consumer views. The Consumer Representative positions are invited to attend bi-monthly consumer forums, participate in program evaluation and planning days, and sit on working parties and project groups both with the organisation as well as across the Psychiatric Disability Rehabilitation Support Service (PDRSS) sector in general. GARSS also encourages general consumer feedback through the bi-monthly consumer forums and regular evaluation surveys with service-users. Central West Gippsland Division of General Practice General Practitioners, Practice Managers, Practice Nurses and GP clients of the More Allied Health Services Counselling Program are the Division s primary consumers. Consumer Participation takes the form of Board membership; program committees and consultations; weekly fax newsletters and feedback; regular gatherings of specific consumer groups; surveys; and workforce support interviews, follow up and review. Latrobe City Council Latrobe City Council is committed to engaging the community through consultative decision making processes across all areas of its responsibility and sphere of influence. It has a responsibility to ensure there is adequate consultation and opportunities for people to communicate with Council about issues of concern, or present a view on things that matter to the community. Community participation, including consumer participation, is seen as vital to underpinning democratic governance and informed decision making. It is within this broad framework that Latrobe City facilitates and encourages interaction with consumers. Latrobe City s Community Engagement Policy and Strategy is a handbook for Council and community members to use as a guideline in their dealings with one another. It suggests the most suitable communication methods for differing circumstances, identifies some useful communication tools, provides handy checklists and outlines an ongoing process of feedback and evaluation. It also outlines prerequisites for effective community engagement, which include adequate and fair opportunities for participation, clearly stated goals, adequate time and opportunity allowed for public consultation, prompt and effective Council feedback, and finally, follow through. Latrobe City s Community Engagement Policy and Strategy has been developed in order to provide community members with a clear understanding of the avenues available for communication between themselves and Council. Specifically, it identifies the varying levels and types of engagement to suit particular circumstances and encourages the use of creative and innovative community and consumer engagement processes. Council has well established practices of seeking consumer and community input and feedback through a wide variety of means, such as through membership on various committees and working groups for planning, project, policy and program development and operation, including service reviews. It also respects and works with existing community structures and organisations, establishing strong partnerships. 12
Baw Baw Shire Council The Baw Baw Shire Council has embarked on a number of community consultation activities to support its overall community engagement initiative. The Community Connect project is working with 18 of the towns and communities in the Baw Baw Shire during 2007 and 2008 to develop individual community plans. This involves community workshops, community surveys and active project working groups to work on projects identified. Council also facilitates the Towns and Rural Communities Network meetings which are held quarterly between council and members of core community groups to disseminate information, discuss issues and provide a forum to identify and target shire-wide issues. The Community Development division also facilitates a Community Engagement Steering Committee which has both internal and external agency support to share information about community engagement activities. As part of this committee, the Shire is in the process of developing a Community Engagement Framework for all community consultation and engagement activities. 13
Role of the Central West Gippsland Primary Care Partnership The Central West Gippsland Primary Care Partnership has been committed to community participation since it s inception in 2000. Initially consumer and community participation was based around a Community Advisory Council model. Following a review in 2005, a new Community Engagement project was established, seeking to increase understanding regarding community participation by member agencies, and to provide range of tools, training and other supports leading to an increase in participation by consumers, carers and members of the broader community. The Central West Gippsland Primary Care Partnership is committed to community, consumer and carer participation in practice. PCP staff are available to support member agencies, providing a key role in capacity building and organisational workforce development, with a range of resources including: Facilitating a Community Participation Working Group. Preparing, circulating and regularly reviewing and updating a Consumer Participation Resource Kit. Developing and maintaining a Register of Consumer Groups which, with due process, may be accessed by member agencies when planning, implementing or evaluating programs. Policy and procedure development, support and advice. Providing training workshops for member agencies and others. Support in the design, implementation and analysis of evaluation processes and strategies. Access to a skilled focus group facilitator. Coordinating an annual issues forum. One off assistance with running focus groups or evaluation. Distribution of relevant resources. To this end, the PCP has put together the resources in the next section for the use of member organisations. These may be added to from time to time as new trends and issues emerge or as other strategies are developed by the Working Group. 14
Resources to Support Consumer, Carer and Community Participation 15
Consumer and Carer s Charter The following Charter was developed by the original Central West Gippsland Primary Care Partnership Community Advisory Council. It is as relevant today as it was when it was introduced to the PCP in 2002. CONSUMER AND CARER S CHARTER FOR PRIMARY HEALTH CARE IN LATROBE CITY AND BAW BAW SHIRE STATEMENT OF PURPOSE The aim of this charter is to make the community aware of its rights and responsibilities when dealing with the health system. VISION, MISSION, COMMITMENT & GOALS The Primary Care services of the Latrobe and Baw Baw LGAs pledge their commitment to: 1. Working together to build sustainable relationships with each other and the communities of Baw Baw and Latrobe. 2. Further enhancing the creation, maintenance and restoration of the health and well-being of our community; 3. Providing appropriate training for health personnel, including education on health and human rights; and 4. Finding new ways to improve the consumer focus of health services, particularly in relation to access to health services. RIGHTS Health consumers have a right to - Be treated with dignity and respect; Be treated fairly and ethically; Have their cultural background, gender and age taken into account in the provision of services; Confidentiality and privacy; Comprehensive information, education, training and support to understand the health problem and treatment options; Communication with health care providers, particularly when decisions must be made about treatment, care and rehabilitation; Treatment or be given reasons for refusal of treatment and referral to alternative services; Treatment that is timely, appropriate and delivered according to professionally accepted standards; Refuse treatment as permitted by law or seek a second opinion; Complain and/or praise each service; Expect that each service will be part of an integrated network that provides continuous care; and Live, work and participate in the community to the full extent of their capabilities. 16
Carers of others also have a right to - Place limits on the care s availability to the consumer; and Receive help when the process of caring causes difficulties. Communities (including consumers and carers) have a right to - The highest attainable standard of health; The highest attainable quality of health services Receive information and education on health issues that affect the community; Expect that services will continually strive to develop programs that meet the community s changing health needs ; and Contribute and participate as far as possible in the development of health policy, provision of health care and representation of health consumer interests. RESPONSIBILITES Health consumers and carers have a responsibility to - Respect the rights and needs of others; Co-operate in treatment, care and rehabilitation plans; Show consideration to staff and other consumers, to keep appointments wherever possible and to inform providers in advance if they will not be able to do so; Provide all information that may be relevant to treating their condition, including changes to their condition, medication used and other service providers involved; Ask for information if they do not understand what they have been told; Accept the consequences of their decisions; Observe the policies of each service provider. Communities (including carers and consumers) have a responsibility to - Treat all people, regardless of their health status with dignity, respect and fairness; Be accepting of community based programs of care, treatment, rehabilitation, employment and accommodation for people with health problems; Provide information about factors in their local communities that they see as priorities in the development of healthy communities; and Take opportunities to participate in decisions about the health system and the health of the community. CLOSING COMMITMENT All Primary Health Care services in the Latrobe and Baw Baw LGAs give a commitment to work according to values contained in this Charter. HOW TO PROVIDE FEEDBACK OR COMPLAIN ABOUT SERVICES? Each service has a system in place ask at reception for details. If you are dissatisfied with the response that you receive, a written complaint can be made to: Health Services Commissioner 440 Collins Street Melbourne Vic 3000 Telephone 03 96700766 HOW TO CONTACT US? This charter was produced by the Community Advisory Council on behalf of the Central West Gippsland Primary Care Partnership You can contact the CWGPCP on 5127 9156 or email cwgpcp@cwgpcp.com.au 17
Protocol for Accessing Consumer Groups Central West Gippsland Primary Care Partnership member agencies have committed to a Community/Consumer Participation Strategy that embraces the philosophy that consumers, carers and community members have an integral role to play in the design, development and evaluation of programs and activities carried out for their benefit or on their behalf. To this end a register of contact groups across the catchment area is maintained at the PCP office to be accessed by member agencies as required for the purposes of planning, development and or evaluation of programs. Individual names, localities or any other personal information will not be included to ensure privacy. The PCP undertakes to update the register annually. The PCP Manager or their nominee will be the designated person to contact in regard to requesting contact information from the register. A record of contacts will be kept, both for evaluation purposes and to reduce duplication. What is a reasonable request? It is reasonable to ask a contact person what the most appropriate method of engaging with the particular group of people they are involved with/have knowledge of is, and to request that they intercede on your behalf with this group to establish contact. In certain circumstances these people may be able to provide individual comment on behalf of that group, for example answering a specific question if only a general opinion is wanted. What the participant/group will get back When working with consumer and carer groups, you need to clarify what you will do with any information obtained. This is to ensure that all who are participating understand how their views and comments will be used, and so that they do not have false expectations. If you are obtaining views about a particular issue, and you are aware there are one or two solutions that would not be acceptable, or outcomes that are not possible, you should make participants aware at the start of the discussions. You also need to ensure that you provide feedback at a later date about how the public participation process impacted on the program or issue you were consulting on. Process The agreed process for accessing the register is as follows: 1. Prior to contacting the PCP to request information from the register the worker will first establish whether other sections of their organisation requires information from the same group of people and if so will compile a list of questions. 2. The member organisation will contact the PCP and identify which particular group(s) they wish to access. 3. They will be provided with the name(s) of the relevant agency contact people. The contact details provided are for use for that particular instance and are not to be used at another time without permission nor are they ever to be given to a third person. 18
4. The agency contact person will then liaise with the potential consumer consultant(s), requesting their assistance and providing them with clear information regarding the reason for the contact, what information is being sought and from whom, what it will be used for and the expected outcome. 5. The requesting organisation will be guided by the agency contact person as to the most appropriate way to engage with the particular consumer group. Methods may include: - Direct contact with group members - Facilitation by the agency contact person on your behalf - Requesting a consumer consultant to gather information from a wider group - Distribution of surveys to the group - Use of the PCP to facilitate a focus group - Inviting representation on an agency committee. 6. The reimbursement policy of the Central West Gippsland Primary Care Partnership will be adhered to by any member agency seeking to access information from consumer groups or individual members of the community via this register. (see policy following), OR Where relevant, compliance with any protocol in place in the contact agency/group, such as consent and privacy, payment, travel re-imbursement etc. will be adhered to by any worker seeking to gather information from consumers. 19
Consumer Reimbursement Policy Please note: Individual agency policies; where existent; regarding consent and privacy, payment, travel re-imbursement etc. will be adhered to by any worker seeking to access consumer groups. Where there is no policy, or where relevant, compliance with any protocol in place in the contact agency/group, such as consent and privacy, payment, travel reimbursement etc. will be adhered to by any worker seeking to gather information from consumers. If neither organisation has a current consumer reimbursement policy, the following will be used. Background Consumer Engagement and Participation is a strategy of the Department of Human Services and of the Central West Gippsland Primary Care Partnership. The goal is to capacity build PCP member agencies to undertake consumer engagement as part of their planning, implementation, evaluation of service program provision, policy development and governance, with appropriate reimbursement for consumer input. As consumers, carers and community participation becomes more integrated into the planning of health and community services, more demands are being made on these groups. Consumers know about change management, about systems, about evaluation and their contribution and expertise needs to be remunerated (Department of Human Services, 2001, p53). And payment underpins respect for work done, can stimulate performance and accountability, indicates the seriousness with which the contribution is taken and tells the representative that participation is valued (Spinks, 2001, p68). Purpose To acknowledge the contribution, expertise and expense of participation for consumer and carers through reimbursement for participating in organisational processes. Implementation While needing to reflect agency budgets, consumers should generally receive minimum payment of $25 per hour of participation. Child care and travel costs should also be covered; the latter at the recommended rate per kilometre for use of a private car or through full reimbursement of public transport costs. 1. Consumers are to complete the Reimbursement Application form as provided by the relevant organisation. 2. Claimants are to expect up to 14 days to receive reimbursement. Non cash assistance can also be provided by the use of an agency car for consumer and carer activities, and use of facilities such as computers, telephones and photocopiers. Training for consumers and carers using existing organisational staff can be a significant non cash acknowledgement of contribution. Expected Outcome: Consumer engagement and participation in organisational and program planning, implementation and evaluation. 20
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Components for Inclusion in Agency Policies The following components have been adapted from the Mental Health Council of Australia - Consumer and Carer Participation Policy Template (2002) and could be included in organisational policy development or review. 1. The policy on consumer and carer participation should have a clear statement of purpose. 2. It should be grounded by a set of principles that reflect the value the organisation places on consumer and carer participation. For example: Consumers and carers have a right to participate, and have a direct and active role in all processes that affect their lives. Consumers and carers with appropriate skills and expertise should be appointed to represent the interest of consumers and carers. Priority should be given to the appointment of consumers and carers who are members of groups able to provide support and a network for consultation. A single person should not be appointed to represent the views of both consumers and carers. Both a consumer and a carer representative are required to represent the views of each respective group. Participation of consumers and carers is an essential component of continuous quality improvement. Communication links between the organisation and consumers and carers are effective two way processes. Information is shared and exchanged with consumers and carers to enable effective participation. Opportunities are provided for the ongoing support and relevant training and education for consumers and carers, to assist in their effectiveness as consumer and carer representatives. Consumers and carers must be aware that responsibilities are associated with participation, primarily the active contribution to quality improvement processes. 3. The Policy should articulate the organisation s position in relation to consumer and carer participation in: Strategic Planning for the organisation. Service Planning. Service Delivery. Service Implementation. Service Evaluation. Health Decision Making. Resource Allocation and Development. 4. The Policy should state: The responsibilities of all parties in implementing the policy. That terms of reference and roles and responsibility statements will be developed for specific participation processes. 22
What measures will be taken to monitor the policy s implementation. When the policy will be reviewed. How the policy will be evaluated. 5. The Policy should state whether costs will be met for consumer and carer participation, for such things as sitting fees, travel expenses and child care expenses. 23
Community Participation Training Workshops As part of its commitment to Community Participation, the Central West Gippsland Primary Care Partnership offers workshops to member agencies. Either or both of the workshops may be appropriate, based on where agencies currently are on the community participation journey. Other workshops may be developed according to need. The workshops may be offered to individual or groups of agencies, for Board/Committee members, consumers and carers, managers, all staff or any combination that an agency thinks is appropriate. Workshop one is pitched at those who are new to the concept of community participation. An overview of the workshops is provided below. Each of them can be tailored to suit an individual agency s requirements. 1. What is consumer/community participation and why do it? Core Values of Consumer Participation Who are Consumers? What is Consumer and Carer Participation? Principles of Consumer Participation The Participation Continuum Benefits of Consumer Participation Evidence Supporting Consumer Participation in Health Current Consumer Participation Activities Audit Tools 2. Planning for Consumer/Community Participation Recap Workshop 1 (if appropriate) Current practice/strengths/gaps (Feedback from Audits) Organisational consumer participation policy Consumer Participation Strategies and Tools Action plan development Monitoring and evaluation techniques Where to from here? A follow up workshop may be desired as part of the monitoring and evaluation process. 24
Audit Tools A wide range of Tools for assessing organisational capacity for consumer participation and capacity building generally is available through the PCP office. The Banyule Nillumbik Primary Care Alliance (BNPCA) in its Resource and Training Kit for Service Providers, details five tools as follows: 1. Organisational Capacity Assessment This Tool enables an organisation to audit its current consumer participation focus. 2. Consumer and Carer Organisational Checklist This Tool provides a quick overview of the current achievement of the organisation with respect to the participation of consumers and carers in service delivery, planning and management. 3. Attributes of a Consumer Focused Service Checklist This Tool is designed as a checklist for service providers who undertake consumer assessment/care planning activities, to determine how consumer focused their service is. 4. Community and Consumer Participation Audit Tool for Hospitals This Tool was designed by the National Resource Centre for Consumer Participation in Health for hospital staff to gain an indication of the level of commitment to community and consumer participation in their hospitals. 5. Primary Health Care Assessment Tool This Tool is designed to assess levels of consumer and carer participation in health services in the primary care sector. In addition, many organisations have already developed audit tools, for both the community and acute sectors and have made these available on the Internet. 25
Other Resources The Central West Gippsland Primary Care Partnership has a range of materials available for borrowing by member organisations, including: Department of Human Services (2006) How to develop a community participation plan, Participation indicators, Doing it with us not for us Community advisory committee guidelines www.health.vic.gov.au/consumer Swinburne Institute for Social Research (2005) Community Consultation and the hard to Reach Concepts and Practice in Victorian Local Government West Gippsland Healthcare Group, A Tool Kit on Consumer Participation for Staff (2006) heather.gillespie@wghg.com.au Health Issues Centre, a range of journal and other publications www.healthissuescentre.org.au www.participateinhealth.org.au A range of Audit Tools for organisations wishing to map consumer participation internally. Other useful resources can be found at: Mental Health Council of Australia (2002) Curriculum Development Education Packages, MHCA, Canberra www.mhca.com.au Mental Health Council of Australia (2004), Consumer and Carer Participation Policy, MHCA, Canberra www.mhca.com.au Mental Health Council of Australia (2000) Enhancing Relationships between Health Professionals and Consumers and Carers, MHCA, Canberra www.mhca.com.au National Resource Centre for Consumer Participation in Health (2002) Consumer Participation in Australian Primary Care, A Literature Review, Latrobe University, Bundoora (now accessed through Health issues Centre website or www.participateinhealth.org.au ) Web Pages Cochrane Centre www.som.fmc.flinders.edu.au/fusa/cochrane/cochrane/powershr Commonwealth Department of Health and Aged Care www.health.gov.au/hsdd/nhqp/consumer/consumer www.health.gov.au/acc/whoswho/orgs/consumer www.health.gov.au/hsdd/nhpa/pubs/consumer -an extensive manual and tool kit. 26
Consumers Health Forum www.chf.org.au International Association for Public Participation www.iap2.org lists core values and ethical statements relating to participation, as well as an excellent tool kit New South Wales Department of Health www.health.nsw.gov.au/pubs South Australian Community Health Research Unit www.dhs.sa.gov.au/sachru The Gilmore Center (Charles Sturt University NSW) www.csu.edu.au/research/gilmore/interest Banyule Nillumbik Primary Care Alliance (BNPCA) Consumer participation resource and training kit for service providers, www.bnpca.org.au/partnership/participate Department of Human Services Victoria www.health.vic.gov.au/consumer 27
References Department of Human Services (2001) Guidelines for Community Advisory Committees Project Report, Victorian Government Publishing Service, p 53 Spink, J (2001) To Pay or Not to Pay That is the Question, News Journal of The Health Issues Centre Inc, September (68), Health Issues Centre Inc, Latrobe University Victoria pp12-17 Walker C & Whohlers M (2001) a Model of Payment to Consumers, Carers and Community Representatives, News Journal of The Health Issues Centre Inc, September (68), Health Issues Centre Inc, Latrobe University Victoria pp 18-20 South West Primary Care Partnership (2001) Primary Care Partnership South West Consumer Reference Group, Sitting Fees and Travel Assistance; PCPSW, November 2001, Victoria Banyule Nillumbik Primary Care Alliance (BNPCA) Consumer participation resource and training kit for service providers, March 2003 28