Charlene Sunkel was 19 years old when she was first diagnosed with schizophrenia but says it took her nine years before she got the right medication. Before she found medication that worked for her, Sunkel said she suffered adverse side effects and was admitted to hospital. She says being admitted to hospital was a wake up call.

Now, Sunkel has devoted her life to advocating for people living with mental disorders. As the advocacy and development programme manager for the South Africa Federation for Mental Health, Sunkel recently conducted community workshops in the Northern Cape to educate patients and families.

Community health workers based at the Lehnoloholo Adams Clinic in Douglas, Northern Cape have said that many families in the rural areas in which they work continue to mistakenly believe mental illness is a curse.

In a small study conducted among about 80 people living with mental illness in the North West, the international academic consortium Programme for Improving Mental Health Care (PRIME) found that patients reported being denied food, tied to trees and being forced to work without pay because of their mental illness by family and community members.

But families have a crucial role to play in supporting those living with mental health issues, cautioned Sunkel who added that not only support but living a healthy lifestyle have helped her adhere to her daily treatment.

Progress on national health strategy remains unclear

Sunkel is also part of the recently created Rural Mental Health Campaign, which released a report in October detailing the challenges rural mental health patients face, including stigma.

[quote float= right]75 percent of people who experience symptoms of mental disorders do not access mental health care services… people avoid seeking help because they fear being stigmatised and being discriminated against”

“I feel ashamed of my diagnosis and the severity of it,” said a North West patient named Jill who asked not to be identified in the report. “People see mentally ill people as being mad and (as people who) should be locked away in an institution”.

According to Sunkel, stigma remains a leading barrier to care.

“Statistics indicates that 75 percent of people who experience symptoms of mental disorders do not access mental health care services,” she wrote in a commentary for the report. “This is not necessarily because services are not available… people avoid seeking help because they fear being stigmatised and being discriminated against.”

No one knows how many South Africans are living with a mental disorders but the county’s only nationally representative survey completed on 2004 on found that about 17 percent of those surveyed had experienced a mood, anxiety or substance use disorder in the previous year.

In 2013, South Africa adopted its first officially endorsed national policy for mental health. Attending the South African Federation for Mental Health’s recent workshop in Douglas, National Department of Health Deputy Director for Mental Health and Substance Abuse Dudu Shiba said she welcomed similar initiatives that not only empowered people living with mental illness but also educated people on the national policy.

However at a recent Johannesburg meeting of the campaign, Sunkel noted that two years since the national policy was adopted, little is publicly known about what has been done to implement it in provinces around the country.

“There’s inconsistencies across provinces in how they are monitoring the implementation of the strategy,” said Garret Barnwell, a clinical psychologist with the campaign. “There’s still a lot to be done in regards to reporting and there’s not a lot of feedback to the public.”

The campaign has recommended not only better tracking of policy implementation but also the integration of mental health services at the primary health care level and within HIV services.

An edited version of this story was published on Health24 and the SowetanLive

• Read more mental health coverage from Health-e News
• Never miss a story. Sign up for our free, weekly newsletter