1. Organising for self-advocacy in mental health: Lessons from 5 African countries Presentation Health, Community and Development Special Session on Global Mental Health, June 28 th, 2010, Institute of Social Psychology, LSE, UK Authors:Sharon Kleintjes, Alan Flisher, Crick Lund (Univ. of Cape Town) Leslie Swartz (University of Stellenbosch)

2. Background Stigmatising attitudes and beliefs ascribe incapacities Reduce social, political and economic opportunities and influence (1) detract from policy and practice in the service of supporting user recovery (2) Limit support for user impact on their own and others’ recovery through self-help initiatives (3) Meaningful collective action by users……“representative networks of engagement” (4) User networks in Africa Zambia, Uganda, Tanzania, Kenya and South Africa (5) WHO Afro regional audit of mental health resources currently underway (1) Kakuma, et al, 2010; Katontoka, 2007 ;Kelly, 2006, Thornicroft et al 2008 ; (2) Borg & Kristiansen, 2004,;DPSA, 2000,;Farcas et al, 2005; (3) WHO, 2008’; (4) HASCAS, 2005, Simpson & House, 2002, Tritter and McCallum, 2006).; (5) Katontoka, 2007)

3. Focus of Presentation What can we learn from the experience of current user organisations in Africa? – The organisations :Who are they? – Establishing the organisations: Why did they start up? – Activities of the organisations : What do they do? – Membership of the organisations: Who participates? – Key challenges : How do they address barriers to the organisation’s work?

4. Methods Semi-structured telephonic interviews with 6 key informants involved in mental health user organisations in 5 countries Ghana Kenya Rwanda South Africa (2) Uganda Guiding questions, and direction from respondents Verbatim transcription, thematic analysis using NVIVO software Respondent verification (underway)

5. Who are they? GhanaKenyaRwandaSouth AfricaUganda Date 20052007 U: 2008 C: 2007 2000 Initiators (staff) 3 users (users) 6 users, carers (1 post, volunteers) 3 users (volunteers: users, carers) U: Users (users) C: SAFMH/User (1 post, volunteers) group of users (4 post secretariat) Members (location) Users (Capital) Users/carers (urban and rural) Users and carers (urban and rural) U: Users (Capital) C: Users in 1/9 provinces; national group 9/9 provinces Users/carers (18/80 districts, rural and urban)

6. Why did they get started? GhanaKenyaRwandaSouth AfricaUganda Needs based Experience Member enquiry Experience Member enquiry Experience Member enquiry U: Experience Member enquiry C: Local NA Member enquiry through structures Vision And Obj. Rights protection Destigmatisation Information Empowerment (voice) Rights protection Destigmatisation Information Skills Building Service provision Rights protection Destigmatisation Information Empowerment (voice) Service provision Rights protection Destigmatisation Information Empowerment (voice) Skills building Promote mental health A voice for users Advocate for holistic care Sustainable Livlihd. Supporter WNUSP (set up –moral support) BN (technical, funds) WHO (media funds) PANUSP & BN (set up); BN (groups, tech, funds PANUSP – (moral support) African Decade (regional development) U: WNUSP (technical, moral) African Decade C: SAFMH (technical, funds, post) Ministry of Health, International DPO (funds, tech support) BN

7. Who participates? The organisation should be user- led..build user role models We as service users understand our issues and needs more...service users are more at ease listening to another service user…(Organisation ) is a service user movement, a service user should drive the movement…. Carers are key supporters of recovery. Empathic professionals, volunteers, NGOs, FBOs, non-user paid staff for administration, training, skills building, service provision. …if you are leading a particular group where there are some other people involved other than users, then you…know you can lead again outside. And that’s why we have some of our members who have gone outside and…contested for leadership outside our organisation

8. What do they do? GhanaKenyaRwandaSAUganda Advocacy XXXXX Self Help XXX X (user carer team XX Health services X (user and carer team) x Other Services xX Psychosocial Support PeerX (user and carer team) X (user and carer as team U: Peer C: X X Policy/Leg xxX

9. What has kept them going? GhanaKenyaRwandaSouth AfricaUganda Membership Passion for change Needs met Passion Passion and needs met Passion for change Needs met Self care for leadership Team of user leaders Prof. support staff Peer support Buddy system Peer support Prof support staff Registration XNGO X X NGO X

10. What has kept them going? GhanaKenyaRwandaSouth AfricaUganda Funding membersdonormembers NGO Donor and members Communication Technology Local area Email Website email Groups Website Email Home visits Meetings U: Website, email, local meetings C: Face-book Email Local meetings teleconferencing Org into local, regional, national associations Pace of development Resources permit local only As resources permit Grow slowly but surely U: Prevent burnout C: Resign from other positions 18 of 80 districts in 10 years Challenge of rural development

11. Addressing challenges: Sustained involvement Select focus, build diverse organisations : Ghana and South Africa - Advocacy Initially we were thinking if there was only one national movement, that their voices will be strong. …later on we thought about it and we said no, there could be three or four organisations that is fighting for the same cause, but there are various ways in which we will do it. Innovative ways to resource : : Uganda We have also a number of volunteers. We specifically target university graduates who come here as volunteers non-user support : Kenya There are times where a service user has a key office and cannot cope with the burden of the work and the caregiver has been of much help….

12. Addressing challenges: User driven In(ter)dependence Partnerships supporting self sufficiency …he was representing psychiatric users Africa on the African Decade. When PANUSP was established he stepped down, so …I went into the board of the Decade Empathic allies & build user participation into institutional culture and operating frameworks There’s a given percentage of office bearers who must be users, but also.. a culture must be cultivated where users enjoy certain rights within the organisation…. we have been very careful with the kind of service providers and professionals we engage with…

13. Addressing challenges: Capacity development Assess needs and plan for required capacity I: So you'd like to remain a project of (supporting NGO) so that you can build the skills that you need to launch an independent organisation….R: That's correct. Mentoring, training, peer and professional training Let me just mention, (user member) came in with a great wealth of organizational experience and stuff and she gave me a vision of how it could be possible to pitch ourselves as an advocacy movement. Capacity through exposure, exchange I find exposure quite important … when some of our members, or myself, or some of our staff, interact with international bodies…but we also need such forums here in Africa….to review our own situation from our own point of view as Africa...

14. Addressing challenges Afro-centric development Acknowledging diversity In the US and in Europe…people with disabilities…are being taken care of in maybe institutions and assisted housing …they want to be independent, not be dependent on their family…For us in Africa, the family unit is everything. Now that is why we are not able to separate from the family and the caregiver because they are integral part of the service user’s life…In Africa we have to have our own situation in perspective before we roll out our advocacy agenda. Dialoguing re diversity …people from the West are talking of people who have survived the services. In Africa …it’s very few who can get to those services... there are so many interesting things to brain storm about…so that we can become one global unified movement which is very relevant to the needs of people of the world.

15. Addressing challenges Afro-centric development Developing a regional identity within a global network … it is a challenge being a member of PANUSP, they are in different countries, sometimes it’s a challenge how we meet and to push an agenda forward. But…being under an umbrella of a regional and global organization, it gives the organization mileage. Building regional capacity for support Organising is key. Let’s look at the Ghana conference for example.. Nigeria, they sent five users to Accra and then Ghana has a very powerful user movement like Uganda….We at PANUSP and people who have experience…doing this organizational building stuff, we can support and help, advise, you know

16. Lack of sustainable human and financial resources a key constraint …. …you have the same people operating on country, global, continental level and where our energies go has been very hard especially with no funding and re-sourcing. Promoting local self sustaining project development W hen they are ready they begin collecting money from themselves...and also… within the community …in South Africa…users…are getting this grant and …they…collect this money and then they begin loaning it out themselves…. and they start small projects…. Addressing challenges Resources for development

17. Addressing challenges Sustainable resourcing Technical support which builds self reliance From international and local NGOs…. An organization must be two or three years old, must have audited accounts…we didn’t have those qualifications. So…we have done some joint proposals with Basic Needs… … to get the experience and also the capital to… get along with our work From international and local DPOs… members…staff, they have visited (organisation’s country), we have had staff from (supporter organisation) visit about three times….I also went to (supporter organisation) and worked for two weeks and…I got to know how they conduct their business

18. Addressing challenges Ministerial support In line with government obligations under the UNCRPD ….Include in existing funding opportunities Where we have consumer movements…some of this international co-operation that our government has... developmental programmes…should …start supporting mental health ….Broker financial and technical support R: Users…contacted…a person who was co-ordinating matters in mental health….they worked together...and she also got … what at first was a project officer, and then…a programme officer, a co-ordinator then director. She also linked them with the mental citizens of (international DPO funder/supporter)

19. Addressing challenges Ministerial support … provide/help source funding for training and skills development …of recent we have worked with members from the Ministry …we have discussions with them which we hope will mature into intensive training of volunteers…so we are growing like that …..Ensure access to decision-making fora …people are not very committed to provide feedback because in the inputs that we've provided we always ask that they get back to us…and give us feedback, but they never do. ….Via user lobbying R: I think the norm should be that there should be consultation. I: From government of users? R:Yes…we want to be heard and then make sure that government recognises the fact that users also have a voice…the onus now is on us to find ways of penetrating to be heard and to be seen.

20. What lessons from the experience of current user organisations in Africa ? A rights based framework for development UNCRPD: Article 29 UNCRPD : state parties should guarantee that “persons with disabilities can effectively and fully participate in the conduct of public affairs, without discrimination and on an equal basis with others” Concerted lobbying by users needed Destigmatisation, inclusion in civic, economic, political social life Diversity in building user organisations “Organising is key” Afro-focus in building local/regional /international agenda. action, membership Development focus – partners to focus on building opportunities for sustainable participation Government : Support access to development opportunities : Funding, decision-making, capacity Local/International donors/DPOs/NGOs: Build local/regional capacity –funding, technical, exchange User organisations : regional and country level self-sufficiency and mutual support : ? PANUSP

21. References Borg, M. & Kristiansen, K. (October 2004). Recovery-oriented professionals: Helping relationships in mental health services. Journal of Mental Health 13(5), 493-505. Disabled People South Africa. (2000). Pocket guide on disability equity. An empowerment tool in support of The Africa Decade of Disabled Persons: 1 January 1999 – 31 December 2000, DPSA, Parliamentary Office, Cape Town, South Africa. Farcas, M., Gagne, C., Anthony, W., & Chamberlin, J. (April 2005). Implementing recovery oriented evidenced based programs: Identifying the critical dimensions. Community Mental Health Journal, 41(2), 141-158. HASCAS. (2005). Making a real difference: Strengthening Service User and Carer Involvement in the NIMHE (Final report), NIMHE, National Health Services, United Kingdom. Kakuma, R., Kleintjes, S., Lund.C., Drew, N., Green, A., & Flisher, A. (2010). Mental Health Stigma: What is being done to raise awareness and reduce stigma in South Africa? African Journal of Psychiatry., 13, 116-124. Katontoka, S. (September 2007). User networks for Africans with mental disorders. The Lancet, 370 (9591), 919-920. Kelly, B.D. (2006). The power gap: Freedom, power and mental illness. Social Science & Medicine, 63, 2118-2128. Simpson, E.L., & House, A.O. (2002). Involving users in the delivery and evaluation of mental health services: systematic review. British Medical Journal, 325(7375), 1265 (4). Thornicroft, G., Brohan, E., Kassam, A., & Lewis-Holmes, E. (2008). Reducing stigma and discrimination: Candidate interventions. International Journal of Mental Health Systems, 2(3), 1-7. Tritter, J.Q. & McCallum, A. (2006). The snakes and ladders of user involvement: Moving beyond Arnstein. Health Policy. 76, 156–168. United Nations. (2006). Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, 13 December 2006, United Nations World Health Organisation. (2008). The World Health Report 2008. Primary health care: Now more than ever. Geneva: World Health Organisation. Thank you for your attention