What is service user involvement about?
The Patiens’ Rights Act promises rights for users of health services, and states in § 3-1 that:
“The patient is entitled to participate in the implementation of his or her healthcare. This includes the patient’s right to participate in choosing between available and medically sound methods of examination and treatment. The form of participation shall be adapted to the individual patient’s ability to give and receive information. If the patient is not competent to give consent, the patient’s next of kin is entitled to participate together with the patient. If the patient wishes other persons to be present when health care is provided, his or her wishes shall be accommodated as far as possible”.
The background for service user participation came from the Universal Declaration of Human Rights in 1948, which established people’s rights to dignity and self-determination in society, their own lives and health. Protests against malpractice in psychiatry and the formation of the first user organizations are among the things that have led the area in the years to come, and given more government initiatives and guidelines.
Guidance on rehabilitation, habilitation, individual plan and coordinator, chapter “Participation, information and communication” states that the starting point for service user involvement is: “The principle that those affected by a decision, or those who are service users, are influenced by the design of the services … Respect for the individual’s self-determination, legal certainty and autonomy is the basis for patient and service user participation » (Norwegian Directorate of Health, 2017). Service user will be involved in choices and assessments throughout the process: planning, design, practice and evaluation, and the service must facilitate for best possible involvement and influence.
Plan for service user involvement- Goals, Recommendations and the National Escalation plan for Mental Health (Norwegian Directorate of Health, 2006) states that the service user perspective is about different degrees of service user participation: service user orientation, service user participation and service user management. Service user orientation implies that professionals engage in the service user’s situation and think as a service user, or that the service user is informed about the services and the staff’s decisions. Service user participation means the service user is actively involved in designing the service with professionals, and that their opinions have a real effect on the decisions taken. Service user management is when service users are in control of the service.
Erfaringskompetanse.no states that professionals represent general and scientific knowledge, but are no experts on the subjective, and define service user knowledge as “the knowledge of lived life”. In collaboration with author Heidi Westerlund, NAPHA and Erfaringskompetanse.no have compiled the booklet “Mer enn bare ord?” [More than just words?] (Westerlund, 2012), where they try to give an understanding of the words and concepts in mental health work and what lies behind them. They state that service user involvement is about a transfer of experience-based knowledge from service user to service provider. It is emphasized that participation must be a continuous form of work.
Researcher Marit By Rise et al. have through interviews with service users, service user representatives, health professionals and managers searched for how service user involvement is understood and what it means. Based on this, service user involvement is defined as: “Mutual respect and recognition – Dialogue with information exchange – Decisions based on shared understanding” (Rise, 2011).
There is a general consensus that service user participation is an important principle, and there are several reasons for it:
- Provides better services with higher service user satisfaction; increased accuracy in the design and implementation of health services. Service users are the ones that experience the help, and therefore often have the best suggestions for developing the services that provide the best possible help. It also provides better communication and can provide better relationships, which is a prerequisite for good treatment. Service user involvement is necessary in order to map the needs and challenges and to ensure good services.
- Self-value for the service user. Receiving help on your own premises through your own choices and resources, and to be listened to with respect, provides a fundamental dignity. This can have a motivational, mastering and therapeutic effect that reduces helplessness and contributes positively to a recovery process. It also gives more participation in decision making and thus greater satisfaction with the decisions taken.
- In a democratic perspective. The fundament of our society is built on the idea that everyone is an expert on themselves and their own lives. Nothing about us without us.
- Statutory rights and guidelines that require the service user participation.
Service user participation temporarily includes extensive ethical challenges, which deal specifically with power relationships legitimacy of service user knowledge. Professor Dagfinn Ulland asks the question: whose knowledge is valid knowledge? He points out power and powerlessness in relationships, our language, different understanding of each other and situations, the duty of health professional and researcher, interpretations as well as the context and impact of culture. (Ulland, D. (2017). “Kunnskapssyn og etikk innen psykisk helsearbeid”. Utvikling og bruk av kunnskap i psykisk helsearbeid, konferanse i Trondheim).
Plan for service user participation- Goals, recommendations and measures in the National Escalation Plan for Mental Health (Norwegian Directorate of Health, 2006) states that the evaluation of the National Escalation Plan for Mental Health 1999-2006 (Ministry of Health and Care Services) shows that there is insufficient work with service user participation.
The Centre for Care Research, in Service user participation in mental healthcare- summary of knowledge (Klausen, 2006) has looked at the needs and challenges in this field, and points out that more systematic work is needed in implementing service user participation in practice. More emphasis is needed on participation and routines for effective cooperation in the individual plan and in transitions between the health care services at hospitals and the municipal health services, especially for the group of people with mental health and substance abuse problems. There is a need for hiring more people with lived experience/peer support workers, which is a relatively new area in the field where it is necessary to agree on the requirements for the position and what the role entails, in order to further develop good learning pathways, hiring routines and position in the service. In research, there is a challenge involving service users from the beginning of projects, and more focus on involvement of service users as active participants is needed; co-researchers whose service user knowledge is legitimized.
Where to find service user participation?
We can divide this into two areas; Individual level and system level.
The Regulations on Habilitation and Rehabilitation, Individual Plan and Coordinator Section 4 state that “The municipality and regional healthcare shall ensure that the individual patient and service user can contribute to the implementation of their own habilitation and rehabilitation offer … Implementation means planning, design, practice and evaluation “.
Plan for service user participation- Goals, recommendations and measures in the National Escalation Plan for Mental Health (Norwegian Directorate of Health, 2006) presents the following goals on individual level:
- Service users have an influence on their own treatment
- Service users trust their own therapist/ service provider and experience being met with respect
- Service users in need of long term and coordinated services have Individual Plans (IP)
- Service users receive sufficient information
- Next of kin are cared for
- Service users are offered training in self-help, management and establishing a network
The plan says something about where this should happen:
- Information and communication
- Contributing to the content of the treatment
- Face-to-face relationships
- Client- and result controlled therapy
- Mutual trust between service user and service provider
- Help in your own home
- Individual Plan
- Liability groups
- Coordinated services
- Patients under forced psychiatric healthcare
- Service user participation via guardian, assistant or proxy
- Administrative procedures in mental health work in municipalities
- Training to strengthen coping skills for service user and next of kin
- Recommendations to the services
It is emphasized in Service user participation in mental healthcare – Summary of knowledge (Klausen, 2006) that the information must be adapted to the individual person and situation, and that good relationships are a prerequisite, which is about meeting the service user face-to-face on a regular basis. It is also emphasized that the services must have routines that ensure the safeguarding and regular evaluation of these rights, and active cooperation with the healthcare services and its employees.