A multi-stakeholders research partnership

1. A multi-stakeholders research partnership Prof. Shula Ramon 10th July 2009 The Emilia Project (www.emiliaproject.net) Anglia Ruskin University and the Mental Health Recovery Centre, University of Hertfordshire Shula.ramon@anglia.ac.uk s.ramon@herts.ac.uk

2. The Emilia Project The EMILIA (The Empowerment of Mental Illness Service Users: Lifelong Learning and Action) project aims to reduce the social exclusion of its participants , and to enhance their social inclusion. It is an EU framework 6 Integrated project, funded for 54 months, which began in September 2005 and it due to be completed by February 2010.

3. The Social Exclusion of People with the lived experience of Mental Ill Health Despite efforts in Europe to enhance social inclusion of mental health service users they still remain a highly socially excluded group (MHE 2007). The social context, process and barriers experienced by service users are major contributors to their social exclusion (Davidson et al. 2001a), Self-discrimination and self-stigmatisation are also major factors in social exclusion (Corrigan, 2005; Mezzina, et al. 2006).

4. Towards Social Inclusion Involvement in formal learning such as that provided by EMILIA can enable a person with mental health problems to feel less marginalised, fulfil their goals, gain life meaning, widen their social network, improve their employment prospects, and be a valuable member and contributor to society (Griffiths, 2006). Davidson et al (2001b) identified three dimensions of social inclusion: experiences of friendships, feeling worthwhile through meaningful activities, and hopefulness. The EMILIA project provides opportunities for development in each of these three areas. The connection to the new meaning of recovery from mental illness, defined here as the ability to live well with the illness and to live beyond the illness (Davidson et al, 2003)

5. The role of Life Long Learning and of the Learning Organisation The EMILIA project explores the use of lifelong learning as a means of achieving improved social inclusion of mental health service users with enduring, long-term mental health difficulties. The main aims of the this action research project are to improve the way in which service users can experience greater participation and inclusion in the delivery of services, training, employment, and unpaid meaningful activities, as well as to enable the organization to provide such opportunities. These aims require considerable change by both service users and the organizations (Gould and Baldwin, 2004, Senge, 1994). The key role of the learning organization in securing the achievement of the project�s goals.

6. Demonstration sites and collaborating centres within Emilia There are eight demonstration sites within Emilia, seven mental health services and one university based inThe sites are located in Athens (Greece), Barcelona (Spain), Bodo (Norway), London (UK), Paris (France), Zealand (Denmark), Tusla (Bosnia) and Warsaw (Poland), thus covering Southern, Central and Northern Europe. The sites are assisted by several collaborating centres (Middlesex University, Department of Nursing Science, Tampere University in Finland, Faculty of Social Work Ljubljana University in Slovenia, School of Education, Aarhus University in Denmark, Karolinska Institute, Sweden, Department of Psychiatry, Vilnius University, responsible for managing different work programmes across sites .

7. Together, sites and the collaborating centres have to: 1. Define priority areas of either educational or service development in which service users could be more involved 2. Create occupational opportunities in the demonstration sites which vary from full time work to sessional input, for mental health service users in these designated priority areas for service providers either in user-led services or in mainstream services 3. Create a strategy for the demonstration sites designed to assist them to implement these occupational roles, including the development of support strategies for service users in the new roles 4. Create a tailored lifelong learning development plan for service users in the demonstration sites to assist them to acquire the skills and knowledge for these new roles

8. 5. Develop a series of accredited training packages which the sites can choose from in order to assist service users in their learning development 6. Develop learning pathways to enable service users to gain academic credits and awards according to their level of ability, based on the learning undertaken 7. Systematically evaluate this process as to the degree to which this strategy is effective in achieving social inclusion for the service users concerned 8. Disseminate findings across Europe.

9. The project has recruited at the baseline point (Time 1, T1) 206 service users. The inclusion criteria entail being diagnosed as having either schizophrenia, schizoaffective or bi-polar disorder and being a service user for at least three years. Each participant was offered training related to personal development and planning, employment and recovery, as well as opportunities for unpaid and paid activities mainly within the demonstration sites themselves.

10. The evaluation component a.Evaluation of service users� views of changes in their lives has to take place in each phase of the project, divided in real time by three (t1 � baseline, t2 � 10 months follow up, t3 � 20 months follow up). It takes the form of an interview with 3-5 key informants and a self-report by all others, which asks them about changes in relation to training, employment, social network, mental health, medication, self confidence, old and new opportunities and obstacles, goals for the coming year, what they can do for themselves, support they may need and from whom. b.Quantitative measures of outcomes and wellbeing include the administration of the SF36 and of the CSSRI (client socio-demographic and social research inventory) c.Measures of organisational change include repeated focus group sessions with the core group of the project in each sites, observations of key meetings and documentary evidence.

11. The Complexity of the project The complexity of this project is derived from: The high number of participants; The variability in context and focus of the participants The different roles of sub-groups of participants While sharing an end goal, its meaning cannot be assumed to be the same for all of the participants Diversity in vested interests All participants also work with other partners, who may/may not share the same beliefs, and can prevent the Emilia member from achieving their/the project�s goals The need to meet and achieve objectives acceptable to the EU

12. Typical tensions and conflicts Not doing things on time � impact on others Expressing oneself sharply Not listening Pretending to listen while being busy with other matters Real differences re approaches to key issues Under-spending or overspending the grant Misreporting for the EU, especially financial forms Between service providers and researchers Between sites and centres People who do much less then others A formal dispute

13. Formal strategies Strategies to cement the partnership: formal and informal Focus on communication: Periodical face to face meetings Shared website Frequent use of chatroom meetings Shared conference presentations Shared written summaries; reports to the EU Shared publications

14. Leadership structure Overall co-ordinatoor Work packages led by a named person; The group of work packages leaders; The team working within a work package; The communication between the work package team and the other project participants

15. Work division Periodisation of meeting objectives: EU deliverable reports Feeding to the report The language used in the reports Local research workers Central research workers

16. Informal Strategies A shared history Membership in Enter: A cartel of applying partners Affinities: personal, regional-cultural, professional, ideological Conflict resolution strategies

17. Learning from users reports Steps towards achieving this objective: Translation by local researcher Coding by local researcher within an agreed template Collating all local responses (central) Preparing site summaries (central) Preparing an overall summary (central) Sharing findings with all sites Sites differ in terms of the depth of the data collected and the depth of the initial local analysis, as well as to an extent in the emphasis on some issues and not on others (e.g. need to have more income; wish to stay at the day hospital expressed by only one site while the rest focused on finding jobs).

18. Mainstreaming Ethnicity and Gender Developing and evaluating audit and action cycles for mainstreaming ethnicity and gender This objective came as part of the EU framework 6 requirements, and has been taken out of framework 7. Increasing equality in terms of ethnicity and gender makes good sense for the population using mental health services given its high level of social exclusion, and the evidenced relationships between some types of discrimination and mental ill health (e.g. domestic violence). However, mainstreaming is perceived by mental health providers (and educators) as an imposed requirement which is unrelated to their focus or what the client wants/needs, a �politically correct� demand. Thus those responsible for meeting this objective find themselves as the odd ones out from the very beginning, even among colleagues who in principle understand why there is a need for such a requirement.

19. Audit and Action Cycles We attempted to tackle it by constructing with two pilot sites audit tools for staff and for users about the impact of ethnicity and gender issues in their everyday working/living, followed by site action plans. Staff in some sites objected strongly to being asked any questions about these issues and viewed this as an intrusion, while others simply said as little as possible, especially about ethnicity. Nevertheless a number of issues were identified in each site as worthy of investment in further training, changes in service provision and policy. A follow up of what has been achieved and what remains to be achieved demonstrates the usefulness of this pragmatic yet flexible approach; its pros and cons. One site claimed initially that given the laws of that country there was nothing which was in need to development or change re either ethnicity or gender. When the worker left and a new one was appointed this issue was re-visited and a number of targets were identified. A module on domestic violence was specifically developed centrally to enable staff members to stop referring clients with this issue elsewhere before trying to work with them within the service.

20. In summary: There are no textbook solutions as to how to ensure that Emilia, as an organisation created for a limited time only, will function well The existence of a core of people who have worked together before helps as well as hinders the functioning of the organisation The bonding has to take place fairly quickly, but also to remain at a superficial level Talking about football Walking on eggshells Finding a soul-mate The unifying objectives Learning to work with the unexpected