Partnerships for better mental health worldwide: WPA recommendations on best practices in working with service users and family carers

During the last years, several countries (including USA, UK, Ireland, Australia, New Zealand, and Canada) have embraced recovery-orientation as a guiding principle of their mental health policy 1. Key to this development is a partnership approach between mental health experts and users of mental health services and their families and friends. Service users and their families have an important role in advocacy in order to enhance the reputation of mental health expertise and services as well as that of people with a lived experience of mental ill health. In recent years, service users and carers have been involved positively in a range of activities including advocacy for support for research, care and social inclusion, and self-help projects. The WPA has cooperated on several levels with different user and carer organizations, as with trialogic symposia at congresses and affiliated memberships, with encouraging results. Efforts in several countries to change community attitudes and improve mental health care in partnership have produced resolutions and guidelines, but their wide use and the structural changes they call for are yet to be achieved 2. The founders of WPA included among its aims an important role as a voice for the dignity and human rights of patients and families 3. Subsequently, the WPA has developed ethical guidelines for psychiatric practice, including the Madrid Declaration 4, which sets out standards for respecting patients, treating them as partners in the therapeutic process, and safeguarding human dignity and legal rights. In 2008, a Task Force on Best Practice in Working with Service Users and Carers was established by WPA President M. Maj under the leadership of H. Herrman to support the WPA Action Plan for the years 2008 to 2011 5 and one of its goals: “To support international and national programmes aiming to protect the human rights of persons with mental disorders; to promote the meaningful involvement of these persons in the planning and implementation of mental health services; to encourage the development of a person-centred practice in psychiatry and medicine; and to promote equity in the access to mental health services for persons of different age, gender, race/ethnicity, religion and socioeconomic status”. The WPA invited service users and family carers to join the Task Force, recognizing their essential contribution to improving mental health in any country. The Task Force had a remit to prepare recommendations for the international mental health community on best practices in working with service users and carers. The Task Force defined the primary need to develop a unified approach to advocacy for mental health and human rights at country and international levels. Adequate support for mental health services and improvement of mental health in any population require a united voice. Achieving this will need support for the capacity of each group to work effectively in partnership. As service users and family carers typically lack the power to interact equally with professionals and government decision makers, assistance in developing this power is mutually important for them and for the WPA and the wider international mental health community 2. A literature review on service user and carer involvement in improving mental health was carried out. The brief was to identify and summarize existing research and guidelines relating to collaboration between mental health professionals and service user/family/carer stakeholders in the areas of policy, practice, research, evaluation, training, education, fighting stigma and discrimination, and joint lobbying for resources to support good practice in research, care, rehabilitation and social inclusion. The literature review methods included: searching databases, and making links with service user and carer organizations, and with national and international mental health bodies and other entities that involve and promote the rights of people with disabilities. The results of the review are set out in the following paragraphs in terms of the key themes found in the literature. Terminology is an important aspect of working in partnership, as it enables clarity about who should be involved, how those people and groups see themselves and their respective roles, and the forms and levels of involvement, and where and how it happens 6,7. Terminology for each stakeholder group can be controversial even among the group concerned, for instance, whether people want to be called “consumers”, “service users”, “patients”, “clients” or “survivors” differs from one person and group to another, as well as causing controversy among the other groups. Similarly, people who are involved as family members may want to be called “carers” or “caregivers” or simply “family” or “friends” 8. Partnership is defined as a collaborative relationship between users, carers and clinicians. Forms of partnership can range from information giving to service user- or family/carer-run services, and include various types of collaboration 9,10. The forms and levels, from informing to power-sharing and leadership by families and service users, must be a key aspect of guidelines, as clarity about what is on offer or available is an essential aspect of setting out the terms for partnership 11. Sites for partnership include personal care at the basic level 12, all the way through local, regional, national and international sites where involvement can happen. Each site can have its own levels 13,14. For instance, at the site of the person, someone can be informed of his/her choices, supported to make choices, or given the resources to buy his/her own services. At the national site, people can be informed of decisions made, consulted at an early stage via surveys, invited as members onto national committees, or given funding to develop their own national programmes. Other criteria for partnership include the type of service, or the diagnostic group, when partnership is focused on particular aspects of psychiatric work, for instance on developing new community services for people diagnosed with personality disorders 15. This begins with setting goals, and proceeds through all the actions to specify how the work will proceed, how to monitor and evaluate the work and use what has been learned to inform future work. The review identified a range of work in which service users and families have been involved, including training and education, advocacy, research and evaluation, planning, management, and service provision 16,17,18. Clarity on the aims, objectives, processes, outcome measurement and learning from doing are relevant to each of these and help assure success and longevity 7. The review showed that the same barriers to partnership emerge repeatedly in the literature 19,20, while actions and systems that support involvement are also becoming clear. Partnership can be hindered by lack of clarity on the issue of representativeness or accountability 21. Lack of commitment by service providers, planners and professional staff is often shown in “tokenism” – i.e., low numbers involved, poor support in terms of funding and access to resources, or lack of support and training for the stakeholders 9. Everyone needs training in how to work together. Another typical barrier relates to policy and strategy. Organizations need a clear policy about partnership, and staff should be aware of existing policies and how to implement them. Differing objectives among stakeholders can create barriers to successful partnership working 22,23, and the literature review showed a range of objectives each group may bring with them to the process. Service users and patients may be concerned with basic facilities and treatments, human rights and choices, while families also seek better care for the person cared for, plus the right to be more involved in care, and more help for themselves. Staff concerns can range from concern about what is expected of them and how to add involvement to their other duties, to overall service improvement and meeting targets. Managers may be concerned with costs and government objectives. Commissioners have to balance public concerns with choice and rights, and governments want to deal with issues of concern to the electorate. The review identified several aspects of good practice in involvement of service users and families, including the following: involvement from the outset in new ventures and in changing existing services; awareness of cultural issues that relate to different groups within the population; addressing stigma and discrimination among public and staff; clarity and honesty about what is possible, what is expected, what is not possible; ensure that involvement is not tainted with coercion, control or manipulation; ensure there is a genuine willingness to instigate change; a range of involvement methods and opportunities to suit needs and abilities; accessibility issues addressed (practical and financial); giving more control of involvement budgets to service user/carer groups; support and supervision available and regular for persons involved; support and finance to enable representativeness and accountability to wider groups; capacity building for service users/families/public; staff training in involvement good practice; involvement championed and supported from the highest levels downward; support for staff to do involvement work; clear involvement policies that are “owned” and understood by all stakeholders; monitoring and evaluation of involvement and dissemination of results; involvement being valued and being seen to be valued by service providers and planners. The literature review identified examples of successful partnerships. Service users and carers are involved in training mental health workers in the UK 17. Service users are involved in monitoring of services or developing outcome measures in some countries 24,25. In many countries, service users and carers sit on committees to plan and manage services 26, though family involvement on committees is less frequent 27. Consumer consultants are successfully employed in Australia 20,28. Trialogue (regular discussion meetings outside work environments between stakeholders) is another method that has been found effective in Germany and Austria 29,30. Guidelines for partnership working have been developed in some countries 11,31,32. The first meeting of the Task Force was held in Vienna in March 2010. Before the meeting, members were asked to rate and comment on the relevance and importance of the themes drawn from the literature. The Task Force drew on the literature survey and this thematic analysis, as well as best practice examples in their own countries and personal experiences of mental health systems and practice. The meeting set an example of partnership and cooperation, bringing together a range of stakeholders. One person took part from India through a Skype connection. Over two days, the group brought together a range of knowledge and ideas, debated the issues, and drew shared conclusions that were set out in the first version of the ten recommendations. Two methods of consultation were developed. The first was an online survey of service users and carers and the WPA Board and Council members. In the second, the Task Force sought to consult ordinary people who are service users and carers. C. Underhill and S. Raja, special advisers to the Task Force from BasicNeeds, offered this organisation's experience of grassroots consultation to reach people with personal experience of mental illness in Kenya, Laos and Sri Lanka. The consultation was designed to enable people in remote areas and those who could not read to be consulted. B. Davar coordinated a series of micro-consultations with organizations and one individual expert in four cities in India. The Task Force also consulted the WPA Committee on Ethics and invited the Chair and an additional member, who is also an officer of the World Association of Psychosocial Rehabilitation, to attend the Task Force as special advisers to consider amendments to the WPA's Declaration of Madrid. Individual experts were contacted by e-mail and invited to complete a short electronic questionnaire. For the survey of service users and carers, a consultation list was drawn up. Some people included were leaders in non-governmental organizations (NGOs) working in the mental health field. Other organizations and individuals were identified from the literature review. Each of the Task Force members had a contribution to make in terms of individuals, groups and networks that could participate in the consultation. Expert stakeholders were sought in every country where the Task Force group members had contacts, which included most of the world's continents. Since there were no resources for translation, participants had to be English-speaking. The decision was taken to consult individual experts, as consulting members of organizations could take too long. However, one organization, the European Federation of Associations of Families of People with Mental Illness (EUFAMI), was able to consult its membership. Each of the ten recommendations was the subject of a question. Respondents were asked to rate agreement with the recommendation, and were also given space for an optional comment. The eleventh question was an open invitation to list additional topics. The survey was circulated in June and July 2010 and responses returned in August. Among the 151 service users and carers who were invited to participate, 126 responded. There were 24 responses from 30 members of the WPA Board and Council. The results were presented and discussed at the second meeting of the Task Force at the WPA International Congress in Beijing in September 2010. A series of consultations with users and carers participating in BasicNeeds’ field programmes was held in three A of users and carers in in Sri and in from In Kenya, consultations were also held with existing national organizations of service users, the of Kenya, and The Users and of where participants were drawn from and In Sri and Kenya, discussion were developed on the recommendations for use in the In a discussion was developed which had as to the at the In a consultations with organizations and one individual expert were carried out in four cities in India and In the following the outcome of the survey each of the ten recommendations in March 2010. Service user and carer that rights are the for partnerships. However, there were about the of human rights. Some even is attitudes and should be of the that is as and were concerned that of human rights in some countries people with a psychiatric from some Some that human rights have to be set when someone is in a Respondents from the WPA Board and Council that human rights are a for practice, but some that was more important rights. Some that health and are rights, and this could will when Service user and carer that collaboration is policy and practice will be on a by government and service Since mental health is a service users need to ensure the service they is of persons as There were concerns that power between patients and service providers can make genuine collaboration Respondents from the WPA Board and Council there should be more genuine but concerns about who be to ensure genuine of those who most mental illness and their families, and needs and Service user and carer called for of the contribution of support and service in and improving service There were concerns that there should be organizations to the of service users and carers and where possible, them each Respondents from the WPA Board and Council that support for service users and organizations is with some about which organizations be supported and their aims and objectives, and that for different and is Service user and carer that mental health is a aspect of health and called for a a on of mental working also in that support the of and However, included the that some people not want to participate, and also that community psychiatry could be to with psychiatric a on Respondents from the WPA Board and Council that there is need to governments and to the population about mental and that mental health where basic needs for and are However, concern was that on wider mental health not help people with mental Service user and carer is an important principle and there should be funding to ensure people could participate to make a included the that involvement be service and not make a to service There was concern that service users and carers should not be seen as and that groups invited to be involved should be of funding from the Respondents from the WPA Board and Council that professional organizations should be in their to non-governmental organizations and service and Service user and carer that involvement needs to be not that people need to to their own care and and to be able to take for their own There was concern about who the decision about and about of between service users and family members. members were concerned they are often out. Some service users whether collaboration was when can be The consultation found that service users and carers see access to and with service providers as important to their for Carers they need support to deal with as see collaboration between service users, carers and as important and want to ensure that there is more to patients their Service user participants in the micro-consultations in India on their for involvement in their own to be to by and to for for that and and want to be offered to or with members in India concern that people with mental illness services other health groups. are held in but this their power and they should take care about the of their members also want more and Respondents from the WPA Board and Council that collaboration is important but that this not require all three members of the and may at as community in groups of with this Service user and carer its importance given new and as and community care which are changing and care in some Some service users to the way to enable new of mental health from their members also for a role on their contribution to There was a that could also be Service user and carer that should and include improvement in the of included that there is too on which may not be for it was out that people need to from the of and in The consultation found that users and carers want and work opportunities as these are important which can enable people to manage their illness and to to their family and social being able to participate in and community members in India more community in with and in Respondents from the WPA Board and Council that social and of mental health are However, some there is a need to the balance right between psychiatric and the provision of and and some a concern that there is a to the of mental and these as of Service user and carer that this is and that fighting stigma and discrimination is However, there were concerns that there are and power as well as of between the groups that make this collaboration There were about work, which has been seen as when by governments or by the in rights and is as a for which to The consultation found that service users and carers it is important to and their as well as about mental health and the needs of families, and about of and of Service user and care carers with but also that in some it services and to Carers that they could also be employed in mental health service However, in developing countries there is a way to to these One person drew to the new giving rights to and that this is a new Respondents from the WPA Board and Council with some including a concern that of people with mental health in mental health service provision could to At the second meeting of the Task Force in the recommendations were discussed in the of the consultation were The new version was by the WPA Committee and on the WPA In consultation with the Task Force, the WPA Committee on Ethics a on of the recommendations that is as an additional for the Declaration of Madrid. will be presented to the WPA in 2011 for The consultations produced groups in the international mental health community on the ten basic recommendations. This is a in is not that are found in individual and group on the of as access to and the right to among to the that mental health countries and and to a in between service users and family members even with The recommendations can encourage groups in each country or to work together in areas of and and other to the topics. This is by the work of the WPA Committee on a that is to to WPA the of these recommendations in the Declaration of the ethical guidelines for psychiatric practice. The Task Force not include members from a of important countries and including and in the and with the resources the survey was carried out in This was by the grassroots In future it will be important to develop this aspect of the work, and to involve all The Task Force to seek support for a series of activities that will promote these in countries a series of best practice examples of addressing each of the is a This a of the of and also a to to successful The Task Force will also encourage the development of country that examples and to example may be the development of a in a country to create a between users, carers, professionals and including leaders of to enhance the in various also be as by recent experience in The WPA could also consider a to for with service users and carers and the guidelines, At the international it will be important for professional bodies to consider how to promote the involvement of service users and carers in congresses and are being developed for some of these that will in in and countries designed to recommendations and create new networks to encourage partnership and collaboration between stakeholder groups. Working with one or two countries in a more way to create guidelines on the recommendations and these experiences is a and way to the work in this The Task Force has three members with a as service user S. and three with a as family carer H. and S. and with the WPA Austria H. Australia S. H. and The members were as individuals, several also leadership in relevant C. and of and S. Raja, of and Practice for BasicNeeds, are special as are two members of the WPA Committee on its Chair S. and The of Mental and of the World is by its experience and The all who in the online those who coordinated and in the consultations coordinated by in Kenya, and Sri and by B. Davar in in Kenya, M. and in Sri and C. in Association for on and M. World for

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