A new report published on Tuesday 4 March 2014 by Mind and the McPin Foundation brings together the experiences of mental health charities and user groups from across the world for the first time. 'Driving Change' is based on the experiences of 19 mental health non government organisations (MHNGOs) from as far afield as Uganda to Australia. It highlights the incredible job that MHNGOs do in supporting people with mental health problems, sometimes in countries where shocking human rights violations such as chaining or stoning someone with a mental health problem are still commonplace.

The report was prepared following the 'World Innovation Summit for Health' held in Doha in December, an initiative of the Qatar Foundation. It showcases how MHNGOs are developing innovative mental health solutions, embracing new technologies to give people with mental health problems a voice and campaigning for fair human rights legislation and its proper implementation.

Interestingly in some regions it is families and user led groups that are leading the way in developing creative mental health services and education campaigns, particularly in countries where there are barriers to establishing any NGO sector. Using their own lived experience they are making a real difference to their communities. At the other end of the spectrum, large national charities in high income nations are playing an important role in influencing Government policies and driving societal changes in attitudes towards mental health.

No matter the scale of the NGO operation or wherever they are in the world, this report finds similarities in the core concerns these organisations face, including:

  • Stigma and discrimination and how this can be as bad as the illness itself. It can prevent people with mental health problems from seeking help when they need it and impact their life chances.
  • Human Rights abuses and fighting for the rights of people with mental health problems who are often marginalised and excluded from society. For some NGOs these are extreme human rights violations such as shackling, starvation and denying access to any basic mental health help and support. For others it might be repealing or refining existing mental health laws.
  • Lack of funding for mental health which means there aren't appropriate facilities and services to refer people to.
  • Limited, unstable funding for MHNGOs hindering their ability to support the communities they serve and meet their aspirations.
  • A shortage of trained mental health staff, for example in Indonesia there is only one psychiatrist for every couple of hundred thousand people.

Founder and Research Director of the McPin Foundation and author of this report Vanessa Pinfold said:
"User and carer-led mental health NGOs large and small are committed to changing the way responses to mental health problems are delivered across the globe. They are well placed to lead transformations in how mental health problems are viewed and addressed because they place people with lived experience and their families at the heart of their work. They are motivated to find practical solutions that fit the local context and all emphasise basic human rights - the right to work and provide for your family, to feel safe and to contribute as a valued member of the community.

It is not easy and in many countries there are limited resources for mental health NGOs with charities run by committed volunteers who want to 'drive change' so that other families and individuals do not experience the same hardship and treatment as they have endured. Raising the profile of this group of innovators is the goal of the 'driving change' report. We hope that this work is one step to building greater profile for their work both in the UK and abroad. There is commitment among the contributors to the report to support each other through skill sharing and ideas creation to address their isolation and raise awareness of the importance of values driven mental health NGOs as central partners in a global vision for better mental health".

Mind's Chief Executive Paul Farmer said:
"This first report since the 'World Innovation Summit for Health' in Doha shows us the valuable contribution that mental health voluntary organisations and user led groups are making right around the world. I'd like to thank all the organisations and individuals that took part, enabling us to showcase this impressive collection of experiences.

MHNGOs are often closest to the issues so are well placed to be at the forefront in establishing creative and responsive mental health services. We have seen great examples where people are utilising their own personal experience to establish peer support services that benefit others.

Governments would benefit from actively engaging these groups and learning from their experiences when developing their mental health strategies. By coming together to share their knowledge, MHNGOs have the power to transform mental health services across the globe for the better.

Case studies

Charlene Sunkel, Central Gauteng Mental Health Society, South Africa:
"We empower service users not to accept any abuse inflicted on them, and make them aware that there are policies and legislations that could protect their rights. Then we've also got quite a bit of focus on human rights that involves access to health care and all kinds of life opportunities, like employment and education."

Kanyi Gikonyo, Users and Survivors of Psychiatry, Kenya:
"One of our newest peer support groups was born out of the issue of accessibility due to the long distances that had to be covered with implication of transport costs to the County Support group. That led also to a revelation that the extra cost on bus fare also impacted their already limited purchasing power to access hospital care, some for medical review or monthly injection and refilling of prescriptions at the hospital located in the town area far from their residences. The group have also engaged their local county government to bring the health services to their locality.

USP Kenya's role is to provide technical support to enable the group to become a duly registered group in the respective community. They could then propose to the hospital to arrange clinical days that take medical services for mental health conditions closer to the locality of the persons who require the service. From a policy perspective they have done that for diabetes, hypertension and other chronic and Non-Communicable Diseases (NCD)".