Timor-Leste: Better epilepsy services means better care

November 2013

After successful pilot projects, the Ministry of Health in Timor-Leste aims to expand the delivery of mental health services through community health workers.

“ I had an epileptic fit in school a few years ago. My teacher sent me home and told me not to come back until I was better,” recalls Melino Joao Mendoza, a 20-year old epilepsy patient who lives in a rural area in Aileu, a district south of Timor-Leste’s capital Dili.

A nurse explains to an epilepsy patient how to take his medication, Timor-Leste
WHO/M-A. Heine

Epilepsy is a chronic disorder of the brain characterized by recurrent seizures – the result of excessive electrical discharges in parts of the brain. In most cases, epilepsy can be successfully treated with anti-epileptic drugs.

But for a long time, Timorese patients could not obtain epilepsy medicines, particularly if they lived outside the capital. There were three fundamental problems:

  • the lack of trained health workers in rural areas;
  • the absence of medicines; and
  • the prevalence of stigma, fear, misunderstanding and discrimination.

“We knew from experiences in other countries such as Bangladesh, Bhutan and Myanmar, that building the capacity of community health workers is key to improve mental health services for people living in remote villages.”

Dr Jorge Mario Luna, the WHO Representative in Timor-Leste

Timorese with “Bibi Maten”, the local name for epilepsy, were banned from work or school, ostracised by their communities, and sometimes even confined indoors by their families.

When Timor-Leste became a sovereign state in 2002 after its long struggle for independence, the new government had to rebuild the medical infrastructure. Ten years later, the country had developed a national mental health strategy and established community-based mental health services. But not all conditions and areas were covered.

Community health workers key

Data from the WHO South-East Asia Region indicated that up to 95% of people with mental and neurological disorders who live in rural and remote areas of Timor Leste were not getting treatment. In 2011, the Ministry of Health and WHO reacted by setting up pilot projects in three districts. The Government of Thailand provided crucial support in the form of a long-lasting stock of Carbamazepine, a standard anti-epileptic drug.

“We knew from experiences in other countries such as Bangladesh, Bhutan and Myanmar, that building the capacity of community health workers is key to improve mental health services for people living in remote villages,” says Dr Jorge Mario Luna, the WHO Representative in Timor-Leste. “So we trained health workers and also started to work with volunteers to create awareness on epilepsy in the community and refer suspected cases to health posts for treatment.”

People with epilepsy are treated at the health centre in Aileu, Timor-Leste
WHO/M-A. Heine

Two years ago, in Lequidoe, a sub-district of Aileu and home to just over 7000 people spread across seven villages, 22 patients were being treated for epilepsy. Almost 50 more were neither diagnosed nor treated. Of those receiving treatment, only a handful took medication on a regular basis. By the end of 2012, newly trained community health workers were able to provide almost half of the people diagnosed with epilepsy with regular treatment. In other districts, the results were similarly encouraging.

Country-wide expansion of mental health services

The Ministry of Health now aims to expand the delivery of mental health services through community health workers to the whole country.

“People used to be afraid of people with epilepsy and called them ‘crazy’ because they didn’t know about epilepsy,” recalls Manuela Antonia Jimenez, a 57-year old clinical nurse in Lequidoe, who participated in the training. “Now there is information, medication and treatment and this helps families and patients to live a normal life.”

Melino was one of the patients who was diagnosed with epilepsy and subsequently received medication under the pilot project. After a long break, he has been able to return to school and will soon receive his high school diploma.

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