SUPPORT-SYSTEMS (49) Q3 Examples of civil society organisations and health policymaking (7) The role of people with lived experience

25 May, 2022

Dear HIFA Colleagues,

Besides civil society involvement in health policy making as Goran reported about the introduction of the Mental Health Act in Iraq/Kurdistan, using evidence to implement health policy is another area where CSO engagement with health policy processes is worthwhile. As earlier discussed, similar to the experience of South Africa's Treatment Action Campaign that employed a combination of human rights education, treatment literacy, demonstration, and legal approaches to help poor people with HIV to become their own advocates, personally and socially empowered; persons with psychosocial disorders along with their caregivers in West Africa have likewise using related methods been supported to organise themselves into Self-Help Groups that not only service as a platform for peer advocacy and psychosocial support but also as forum for livelihood activities.

In scaling up mental health services in the sub-region, people with lived experience of mental health problems and psychosocial disability are at the centre of all community mental health care activities, from planning to decision-making, implementation, delivery, and monitoring. Organisations working with these groups do not see inclusion and participation as an add-on but consider them as ‘basic rights’ as defined by the Convention on the Rights of Persons with Disabilities (CRPD). As such, actions towards attaining inclusion have been directed at supporting and building capacity (e.g., training, self-care, media engagement) of people with lived experience, and adapting processes to fit their needs. Trained as champions, people with lived experience have become powerful advocates for change and for helping others understand mental health and disability, using social contact in public places - markets, churches/mosques etc., and in their communities - for community sensitisation and advocacy for reduction of stigma and discrimination.

Apart from being organised at community and district levels, networks of mental health self-help groups have been established at sub-national and national levels in some countries. In addition to providing mentoring support for frontline groups, the alliance of mental health self-help groups is able to engage with high-level mental health policy making, as well as keep mental health on the development agenda through sustained advocacy.

Two examples: (i) In Nigeria, the Mental Health Advocacy Initiative (MHAI) in Benue State operates at state-level [https://www.mhinnovation.net/blog/2017/mar/13/voices-field-mental-health..., while (ii) In Ghana, the Mental Health Society of Ghana (MEHSOG) [https://www.mehsog.org<https://www.mehsog.org/>] is a national organisation.

Best, Tarry

HIFA Profile: Tarry Asoka is a consultant in health and development based in Nigeria. Besides assisting clients to meet their corporate objectives, Tarry is keen on searching for and implementing innovative solutions that address critical challenges that confront the world in health and development. He has experience with civil society participation in health policy processes in Anglophone West Africa (Ghana, Liberia, Nigeria, Sierra Leone, and The Gambia). In Nigeria, he has provided mentoring support and help to channel resources to the lead CSO (Health Reform Foundation of Nigeria � HERFON) both as UK DFID (now FCDDO) Health Adviser over a 5-year period and later as an Independent Consultant. Tarry is a member of the HIFA working group on SUPPORT-SYSTEMS.

https://www.hifa.org/support/members/tarry

https://www.hifa.org/projects/new-support-systems-how-can-decision-makin...

Email address: tarry AT carenet.info