Consumer-Survivor Participation
Mental health reform provides a unique opportunity for system improvements, a chance to change the status quo and to set new and innovative ways for the design and delivery of mental health services. One necessary innovation in system design is maximizing consumer-survivors' voice in the process and to have consumer-survivors positioned as a full and equal partners at all levels of mental health service provision, planning, evaluation and systemic advocacy. The Psychiatric Patient Advocate Office (PPAO) is supportive of maximizing the consumer-survivors' input and in finding new ways to include this valuable and important perspective. The PPAO has identified some issues below that will assist service providers and the mental health delivery system towards a more progressive and client-centred system that is accountable to the people that it services.
Review of Policies and Procedures
Facilities must review all policies and procedures to ensure that they have a client-centred approach with the aim of developing best practices with respect to client involvement as an equal partner in the treatment process. Such a review must include consumer-survivors, their families, facility staff, advocates and any one else interested in ensuring that all policies and procedures are from a client-first perspective.
Client Involvement and Participation in Care Planning Meetings
The PPAO supports the involvement of clients in any and all meetings that involve their care and treatment and where decisions will be made that impact on the client's life. Many facilities hold care planning meetings amongst the staff and then invite the client in at the end of the meeting to hear about what decisions have been "made" and to inquire about the wishes of the client. This paternalistic approach to care provision in many ways violates the rights of clients and perpetuates the best interest decisions making processes of another era. It is not progressive or responsible and it serves to undermine the inclusion of the client in the process. Treatment teams must invite the client to the care planning meeting, and allow them to decide whether they choose to attend the meeting or not. However, the option of attendance must be the client's decision solely and there must be recognition by care teams that the client is responsible for their own wellness and recovery.
Tokenism and the Consumer-Survivor Perspective
Involvement of consumer-survivors must extend far beyond tokenism to real, true and fair representation where their input will be valued, respected and incorporated into the decision making and review processes of the facility. Some facilities have a couple of consumer-survivors involved in the process but they tend to rely too heavily on these individuals, leading to burnout, or to overwhelming them with meetings (for which many are not compensated) and competing priorities. Facilities as well must move towards compensating consumer-survivors for their input based on their first hand and direct experience. These individuals can help facilities bring about system changes and help mitigate sub-standard or paternalistic care and treatment.
A Greater but Equal Voice
If at the end of mental health reform clients do not have an equal voice in how the system operates, how it provides services and how it supports the decisions of the client, then mental health reform would have been a failure. It would be a failure if the system and service providers fail to recognize the autonomy and worth of every individual, if clients' wishes and decisions are not respected and if service provision is not more individualized. Individual care must allow the client to have a choice in who provides the service to them, where it is provided, to have options and choices, and are able to take responsibility for their own wellness and recovery. Anything less would mean that mental health reform hasn't been about reforming the service delivery system, challenging old attitudes or creating a legacy of client-centred care and support services.
Patient and Family Councils
The PPAO's position is that psychiatric facilities must have patient and family councils that are fully funded and fully autonomous. The councils will ensure that both the client and the family perspective is advanced at all levels of the organization and that they will have adequate funding to be able to provide service to their respective constituencies. Provision of both councils will provide the clients with a sense that there are people at the facility that have had the same or similar experiences and that they can approach them to talk to. Both councils must have autonomy so that they simply do not become an agent of the facility but rather have some independence and an arms-length relationship with the service provider. Patient Advocates will not duplicate the work of the councils but will instead complement and supplement their work through networking and referrals. This will allow patients to have a choice in who provides them with service and options for issue identification and resolution.
Involvement at All Levels of Organization
Involving consumer-survivors at all levels of a psychiatric facility's operations can only strengthen the provision of mental health services by increasing its accountability to the people that it serves, the development of quality service standards and in finding new and innovative ways of service provision from a client first perspective. Consumer-survivors must be involved in board of director decisions, facility committees, hiring processes, program development and evaluation, review of service delivery standards, quality assurance and risk management programs and hospital accreditation if the system is to develop greater sensitivities to and acceptance of the consumer-survivor perspective.
Peer Support Workers
The introduction of Peer Support Workers (PSW) on Assertive Community Treatment Teams (ACTT) and Program of Assertive Community Treatment Teams (PACT) is a positive step forward. In order to be effective, the PSW must be integrated fully into the team, be treated as an equal member of the team and be compensated at a level that reflects their expertise and what value added services they provide to the team. The PSW will be able to complement and augment the services offered by the team by providing self-help and empowerment expertise, by being a role model to clients and by advancing and promoting client self-determination, autonomy and decision-making.
The introduction of Peer Support Workers is considered to be innovative by some professionals and some may find the inclusion of the PSW as a team member to be unorthodox or threatening. Teams must be encouraged to talk through these issues, to confront their concerns and to look for ways that the PSW can be included as a full member of the team. Proactive attention to these issues will make the team stronger and may in fact lead to the provision of more client-centred care as this perspective will be part of every team discussion through the expertise shared by the PSW. Teams that are progressive, responsible and interested in providing client-centred care have embraced the PSW position and have in good faith worked to resolve any issues that arise, to the benefit of their team and the clients that they serve.
For the PSW model to be successful, there must be an open and honest discussion with the team in advance of the hiring of a PSW. This will allow time for the team to confront any misgivings, biases, or to consider the logistics of such a model. This discussion will increase the likelihood that the PSW position will be successfully implemented and accepted by the team.
Supporting Consumer-Survivor Learning and Involvement
Some facilities have established consumer-survivor initiatives and have encouraged their involvement in various capacities. However, corresponding supports are necessary to increase the chances of these initiatives being successful and having a positive outcome. Instead some have suggested that they have received little "value for money" or that the initiatives were disappointing or missed their opportunity to have an impact at both the micro and macro level or in promoting and sustaining change. This may be more of a reflection on the facility than on the initiative itself.
Facilities must provide adequate supports to these initiatives and allow the consumer-survivors involved to determine the level of support or involvement that they need from the facility. To do less means that facilities are paying lip service to these initiatives but have failed to demonstrate full commitment by investing in infrastructure and human and financial resources. Possible supports that could be offered by facilities include: information and technology supports, communications supports, policy education and development, designing empowerment models that will facilitate the work of the consumer-survivor initiative, having a transparent and accessible complaint resolution mechanism in place and other supports that they identify when articulating their learning and support needs. Other supports that could be offered by the facilities could also include a liaison person between the hospital and the consumer-survivor initiative, the establishment of an advisory council to oversee the work on the initiative or to provide resources and expertise that is external to the facility. The reliance on these supports would diminish over time as the consumer-survivor initiative would develop their own expertise, systems and supports.
Facilities tend to evaluate the effectiveness of these initiatives by how much tangible work they produce. However, they are less likely to take into account the less tangible things such as positive attitudinal changes amongst the staff, the erosion of negative institutional culture or the positive changes that occur at all levels of the organization because of the involvement of patient councils and empowerment facilitators.
Involving Consumer-Survivors in Staff Training and Education
Staff training and education is very important to changing institutional culture, to challenge staff of finding new and innovative ways to provide care and treatment and to ensure that client-centred care best practices are identified, implemented and evaluated. It is important for facilities to provide on-going in-service training that challenges the staff to provide better care and to be responsive to the needs of each individual client. Staff training and education that does not include the client perspective and which does not include clients in the delivery of the training program is perhaps lacking in it's full potential of challenging staff to incorporate this other perspective into their learning. Otherwise, staff education is simply from the care provider perspective, it is only one perspective and needs to be balanced with the other prevailing perspectives.
Stigma Reduction and Public Education Campaigns
Consumer-survivor participation in the design, implementation and provision of stigma reduction and public education campaigns is essential if these initiatives are to be successful in providing a consumer-survivor viewpoint and the shared experiences of those who have lived the experience. This viewpoint will provide the appropriate balance between the caregiver and the client, the professional point of view and that of the consumer-survivor and will
