WHO Information

Kit on Epilepsy
What you can do
The technical information contained in The WHO Global Information
Kit on Epilepsy originates from World Health Organization sources.
All reasonable precautions have been taken by the World Health
Organization to verify the information contained in this document.
However, the published material is being distributed without warranty
of any kind, either expressed or implied. The responsibility for the
interpretation and use of the material lies with the reader. In no event
shall the World Health Organization be liable for damages arising
from its use.

© World Health Organization 2015

All rights reserved.

Contents
Acknowledgements 2

Abbreviations 3

Introduction 4

Epilepsy: A Public Health Issue 10

Infographic 16

WHO Programme on Reducing the Epilepsy Treatment Gap:

An Overview 18

Ghana 20
Mozambique 22
Myanmar 24
Viet Nam 26

Reducing the Epilepsy Treatment Gap:

What You Can Do 28

Information for Policymakers 29

Information for Specialist and Non-Specialist Health-Care Providers 30
Information for People with Epilepsy and their Families 31
Information for NGOs 32
Information for the General Public 33

WHO Programme on Reducing the Epilepsy Treatment Gap:

Implementation Approach 34

References 38

WHO/MSD/MER/15.7
Acknowledgements
The Global Information Kit on Epilepsy was made Thank you to colleagues from the WHO Department
possible through the contributions and review of of Mental Health and Substance Abuse for additional
many people. reviews and advice. Acknowledgement and thanks
are extended to Erica Lefstad, who designed the
This document was authored by Tarun Dua (WHO), document and created the infographic.
Alexandra Wright (WHO), Brooke Short (WHO) and
Caroline-Anne Coulombe (The Centre for Authentic We gratefully acknowledge the financial contribution
Communication). of the Sanofi Espoir Foundation and UCB.

We thank members of the WHO Programme on

Reducing the Epilepsy Treatment Gap for their
contributions and review:

Ghana Fight Against Epilepsy Initiative

Cynthia Sottie, Edith Andrews Annan, Akwasi Osei,
Albert Akpalu, Sammy Ohene, Patrick Adjei, Peter
Yaro, Amina Bukari, Chief Coker Asiam, Philomena
Nkansah, Confidence Brown, Charles Vigbedor, Issah
Musah, Theophilus Gaisie, Daniel Asiedu, Justina
Awaworyi, Cephas Anorku, Samuel Boaten.

Mozambique Epilepsy Programme

Lídia Gouveia, Paulo Andrassone, Palmira Santos,
Raquel Mahoque, Vasco Cumbe, Celiano Manuel,
Amina Arial António.

Myanmar Hope for Epilepsy Initiative

Win Min Thit, Nyan Tun, Pe Thet Htoon, San Oo,
Seinn Mya Mya Aye, Maung Maung Lin.

Viet Nam Fight Against Epilepsy Initiative

Luong Ngoc Khue, Tran Quy Tuong, Truong Le Van
Ngoc, Bui Thi Thu Ha, La Duc Cuong, Tran Trung Ha,
Lam Tu Trung, Lai Duc Truong.
 Global Information Kit on Epilepsy 3

Abbreviations
AEDs – Antiepileptic drugs

IBE – International Bureau for Epilepsy

ILAE – International League Against Epilepsy

LAMICs – Low- and middle-income countries

mhGAP – Mental Health Gap Action Programme

mhGAP-IG – Mental Health Gap Action Programme Intervention Guide

NGOs – Nongovernmental organizations

WHA – World Health Assembly

WHO – World Health Organization

WHO/MSD/MER/15.7
Introduction

The treatment of epilepsy has long been neglected in public health

programmes despite its high disease burden, the major impact on
the people it affects, and the existence of inexpensive and cost-
effective treatment. Access to treatment for those in need is crucial:
up to 70% of people with epilepsy could be seizure free if they
received treatment with oral antiepileptic medicines.

Not only is it essential to ensure that those in need be able to access

this treatment, access to information about epilepsy is equally
important. People with epilepsy and their families often suffer from
stigma and discrimination because of the lack of knowledge and
understanding about the condition.

In 2015, the World Health Assembly (WHA) adopted a resolution

on epilepsy, WHA68.20, which urges coordination action at the
country level to address its health, social and public knowledge
implications. The resolution highlights the need for the WHO to help
strengthen countries’ capacities to address epilepsy and facilitate
resource mobilization. This resolution is a powerful tool to assist
countries implement effective actions to improve medical and social
services for people living with epilepsy, promote public awareness
about epilepsy and allocate resources towards epilepsy research.
The Global Information Kit on Epilepsy has been developed as part
of the WHO Programme on Reducing the Epilepsy Treatment Gap to
support implementation of WHA68.20 recommendations. It pro-
vides general information about epilepsy, an overview of current
pilot projects as examples of what can be achieved, and actions
that can be taken by specific stakeholder groups with reference to
WHA68.20. The intended audiences for the Global Information Kit
on Epilepsy are policymakers, specialist and non-specialist health
care providers, people living with epilepsy and their families,
nongovernmental organizations (NGOs) and the general public.

The epilepsy “treatment gap” is the percentage of people

with epilepsy whose seizures are not being appropriately treated
at a given point in time.

WHO/MSD/MER/15.7
Epilepsy. Treat it. Defeat it.

Epilepsy is a chronic disorder of the brain characterized by recurrent

seizures. It affects people of all ages and often has no identifiable
cause. More than 50 million people worldwide have epilepsy, and nearly
80% live in low- and middle-income countries (LAMICs). Every year, an
estimated 2.4 million people are newly diagnosed with epilepsy.

Epilepsy can be treated

Epilepsy treatment is inexpensive and is effective for controlling seizures in 70% of all cases.
Despite this, about three fourths of people living with epilepsy in LAMICs do not receive the
treatment they need.

Why is this the case? In most LAMICs, antiepileptic medicines are frequently unavailable. In these
countries, there are also very few health care providers who have the appropriate training to
recognize, diagnose and treat epilepsy. Furthermore, lack of knowledge or misperceptions about
epilepsy may affect health-seeking behaviour. People with epilepsy may not access treatment
from health care facilities and instead might seek help from other sources that may be ineffective.
They also may not seek regular follow-up care or adhere to medications as prescribed.

Epilepsy can be defeated

To support countries to defeat epilepsy, the WHO Programme on Reducing the Epilepsy Treatment
Gap focuses on expanding the skills of non-specialist health care providers to diagnose, treat and
follow up with people with epilepsy. The Programme engages in health systems strengthening,
helping to increase sustainable access to antiepileptic medicines and reinforcing referral systems. It
also raises awareness about epilepsy among policymakers, health care providers, people living with
epilepsy and their families, NGOs and the general public. Pilot projects for the Programme have
been initiated in four countries: Ghana, Mozambique, Myanmar and Viet Nam.
 Global Information Kit on Epilepsy 7

Challenges and gaps in epilepsy care:

1. Still considered a low priority in many countries.

2. Limited capacities of health care systems and inequitable distribution of resources.
3. Lack or severe shortage of appropriately trained staff.
4. Inadequate access to affordable medicines.
5. Societal ignorance and misconceptions.
6. Poverty.

Together we can succeed

The World Health Organization has long recognized that epilepsy is a major public health
concern. It has been working with many partners and stakeholders including WHO Collaborating
Centres, nongovernmental organizations such as International League Against Epilepsy (ILAE)
and International Bureau for Epilepsy (IBE), and many others to support countries to reduce the
epilepsy treatment gap.

The World Health Assembly’s adoption of the epilepsy resolution (WHA68.20 – ‘Global burden
of epilepsy and the need for coordinated action at the country level to address its health, social
and public knowledge implications’) presents a historical opportunity to improve epilepsy care
worldwide. WHA68.20 highlights the need for governments to formulate, strengthen and
implement national policies and legislation to promote and protect the rights of people with
epilepsy. It also emphasizes the importance of training of non-specialist health-care providers as
key to reducing the epilepsy treatment gap. The resolution, with coordinating support from
WHO, calls all countries to action on the following:

  Strengthen effective leadership and governance;

  Improve provision of epilepsy care;
  Integrate epilepsy management into primary health care;
  Increase access to medicines;
  Support strategies for prevention of epilepsy;
  Increase public awareness and education;
  Strengthen health information and surveillance systems;
  Improve investment in research & increase research capacity.

WHO/MSD/MER/15.7
WHO's Work on Epilepsy
The Global Campaign Against Epilepsy: Out of the Shadows was
established in 1997 as a partnership between WHO, the International
League Against Epilepsy, and the International Bureau for Epilepsy. ILAE
member organizations consist of professionals concerned with medical
and scientific aspects of epilepsy, while those of IBE are concerned with
social aspects and the quality of life of people with epilepsy.

This campaign raises general awareness and understanding about epilepsy and supports
governments in identifying needs and promoting education, training, treatment, services,
research and prevention in their countries.

As part of the Global Campaign Against Epilepsy: Out of the Shadows, projects were carried
out in the following countries: Argentina, Brazil, People’s Republic of China, Georgia, Pakistan,
Senegal, Timor Leste and Zimbabwe. Some of these projects resulted in the integration of
epilepsy care into countries’ primary health care systems.

The WHO Programme on reducing the Epilepsy Treatment Gap builds upon these previous
collaborative projects.
 Global Information Kit on Epilepsy 9

Out of the Shadows: China

Demonstration Project

From 2000 to 2004, the Global Campaign Against Epilepsy: Out of the
Shadows conducted a demonstration project in The People’s Republic of
China (China), where epilepsy prevalence is approximately 4.6/1000.

The project was carried out in six provinces to test the feasibility of diagnosing and treating
epilepsy at the primary health care level, using the first-line medication phenobarbital.
During the project’s implementation phase in 2002 to 2004, 2,455 patients with convulsive
epilepsy were treated out of the 66 000 people who were screened. Educational activities
on epilepsy for the general public, patients, and their families were conducted via media
channels (TV and newspapers) and aimed to show the general community that epilepsy is
treatable. The results were conclusive:

  34% of the patients were seizure-free within one year and another 34% had their
seizures decreased by over 50%;

  After 2 years of intervention, which included antiepileptic medication and education, the
treatment gap in the project area of the participating provinces decreased by 12.8% from
62.6% to 49.8%, a statistically significant reduction;

  It is possible for trained primary health care physicians to diagnose and treat people with epilepsy,
and this care model can be successful in significantly reducing the epilepsy treatment gap.

Thanks to this demonstration project, the government has supported the scale-up of the
project to cover 75 million people in 18 provinces, who now have better access to epilepsy
diagnosis and treatment. As of 2012, over 24 000 public health workers have been trained in
epilepsy management and nearly 200 000 people have been screened for epilepsy.

WHO/MSD/MER/15.7
Epilepsy:
A Public Health Issue
 Global Information Kit on Epilepsy 11

Quick facts

1 Epilepsy is a chronic disorder of the brain

that affects people of all ages.

2 More than 50 million people worldwide

have epilepsy.

3 Nearly 80% of people with epilepsy live in

low- and middle-income countries.

4 With daily, inexpensive antiepileptic medicines,

70% of people with epilepsy can be seizure free.

5 About three fourths of people living with epilepsy

in low- and middle-income countries do not get the
treatment they need.

6 People with epilepsy and their families often

suffer from stigma and discrimination.

WHO/MSD/MER/15.7
Epilepsy is a medical disorder

 Epilepsy is a neurological disorder that affects

people in every country of the world. It is one
of the world’s oldest recognized medical
conditions.

 Epilepsy is defined by two or more un-

provoked (spontaneously occurring) seizures
occurring at least 24 hours apart.

 A seizure is a temporary disturbance in the

brain’s electrical activity.

Copyright: MOH/L. Gouveia

 Having one seizure does not mean a person has
epilepsy: 1 out of every 10 people will have one
seizure during their lifetime but do not have  The risk of premature death in people with
epilepsy. epilepsy is up to 3 times higher than it is for the
general population.
 Characteristics of seizures vary and may include
convulsions of the body and limbs, loss of aware-
ness or consciousness, and irregular sensations
(including vision, hearing and taste). Epilepsy is prevalent all over the
world, but more so in low- and
 People with epilepsy are at higher risk for middle-income countries
physical problems like fractures or burns, as well
as higher rates of other conditions like anxiety and  Nearly 80% of people living with epilepsy
depression. live in LAMICs.

 Two-thirds of newly diagnosed cases of

epilepsy are in LAMICs, where there is a
higher risk of conditions that can lead to per-
manent brain damage.

Left: Boy in Myanmar being treated at participating clinic

Above: family in Mozambique at participating health-care facility;
Right: Reading an epilepsy project brochure in Myanmar;
Far-righnt: Patients with epilepsy in Myanmar wait to be seen at
participating clinic Copyright: DOH/San Oo
 Global Information Kit on Epilepsy 13

Epilepsy can be treated, but - A ccessing antenatal and perinatal care,

many lack access to treatment which can reduce new cases of epilepsy
caused by complications at birth like lack of
 With regular treatment, 70% of people with oxygen or trauma.
epilepsy will be seizure free. Most of them can - E limination of parasites that cause central
stop taking antiepileptic medicines after two nervous system infections (for example
years without seizures, however some may neurocysticercosis).
require treatment for longer. - E ducating people about how to avoid infec-
tions in tropical areas.
 In many LAMICs, antiepileptic medicines are - P reventing stroke.
often not available, so even if people seek
treatment they cannot receive it.
Human rights of people with
 In some countries in Africa it is estimated that up to epilepsy are not always respected
90% of people living with epilepsy go untreated.
 In some countries, community perceptions and
certain legislation reflects centuries of misun-
Epilepsy can be prevented in derstandings about epilepsy. As a result, peo-
some cases ple with epilepsy and their families often expe-
rience social exclusion and discrimination.
 Many of the causes of epilepsy are prevent-
able, and the health and social sectors of  National legislation based on internationally
countries should be supported to reduce new accepted standards on human rights can help
cases of epilepsy. For example: prevent discrimination and rights violations against
- Preventing head injury, which is the most effec- people with epilepsy. It can also improve access
tive way to prevent post-traumatic epilepsy. to health care services and raise the quality of life
for people living with epilepsy and their families.

WHO/MSD/MER/15.7
 Epilepsy Myths
Debunked
Myth 1: Epilepsy is contagious.
Fact: Epilepsy is not contagious. You cannot get epilepsy from
another person in any way.

Myth 2: Epilepsy is caused by spiritual possession or punishment.

Fact: Epilepsy does not have any spiritual or supernatural cause.
It is a medical condition, a chronic neurological disorder that can
happen to anyone.

Myth 3: People with epilepsy cannot work.

Fact: People with epilepsy can and should be supported to work.
However, jobs that have a higher risk for injury should be avoided,
including those involving heights, heavy machinery or fire.

Myth 4: People with epilepsy cannot get married or have children,

and if they do then their children will also have epilepsy.
Fact: People with epilepsy can get married and maintain stable,
supportive relationships. Epilepsy is not transmitted from parents to their
children. Women with epilepsy can have healthy pregnancies, however
they should consult a trained health care provider if they are pregnant or
planning to become pregnant.

Myth 5: Children with epilepsy cannot go to school.

Fact: Children with epilepsy should not be prevented from going to school.
They are not a danger to other children. Teachers should be educated about
epilepsy and what to do in the event of a seizure.

Myth 6: People with epilepsy cannot participate in recreational activities.

Fact: People with epilepsy can safely participate in recreational or sporting
activities if their seizures are under control. Activities involving heights or water
require specific safety considerations.

Right: Woman with epilepsy and her daughter in Mozambique

Copyright: MOH/L. Gouveia ique
WHO/MSD/MER/15.7
WHAT IS epilepsy?
NEUROLOGICAL
INFECTIONS STROKE

GENETIC
HEAD BASIS
INJURIES

A NEUROLOGICAL CONDITION BRAIN

characterized by recurrent seizures TUMOURS

CAUSES
Seizures are due to BRAIN DAMAGE

brief disturbances in the

FROM PRENATAL OR
PERINATAL CAUSES

electrical functions ?
UNKNOWN

of the brain
IN MANY CASES
CONTAGIOUS
Epilepsy affects people of all ages

What is the IMPACT of epilepsy? 3– 6

TIMES
50 000 000
GREATER
RISKOF PREMATURE
More than 50 million people are living with epilepsy globally
DEATH

80 %
live in low-
and middle-income
countries
75 %
DO NOT RECEIVE
TREATMENT

CAUSES OF
TREATMENT GAP:
- lack of trained staff
- poor access to anti-epileptic medicines
SOCIAL
- societal misconceptions FAMILY WORK
STANDING
- poverty
- low prioritization for the treatment of epilepsy
 Global Information Kit on Epilepsy 17

What is the SOLUTION?

70%
NORMAL LIVES
Epilepsy can be treated with inexpensive With such treatment 70% of people with
and effective anti-epileptic medicines. epilepsy can lead normal lives.

WHO can do WHAT?

PEOPLE WITH LEARN ABOUT

EPILEPSY AND THEIR EPILEPSY
FAMILIES

SEEK
TREATMENT

THE PUBLIC

POLICY
MAKERS

ENSURE ACCESS TO
EPILEPSY TREATMENT
IN COMMUNITIES

HEALTH-CARE
WORKERS
PROMOTE
PUBLIC
AWARENESS

COMMUNITIES
EDUCATE
AND NGOS AND TRAIN

WHO/MSD/MER/15.7
The WHO Programme on
Reducing the Epilepsy Treatment
Gap: An Overview

The WHO Programme on Reducing the Epilepsy Treatment Gap

is piloting an improved model of epilepsy care in four countries:
Ghana, Mozambique, Myanmar and Viet Nam.

Building on previous WHO collaborative projects to reduce stigma and

improve access to treatment, this model combines several innovative
strategies and demonstrates how WHA68.20 recommendations can
be systematically and effectively implemented at a country level. It
expands the skills of primary care, non-specialist health care providers
to diagnose, treat and follow up people with epilepsy; it mobilizes
NGOs, community groups and volunteers to raise awareness about
epilepsy and support people with epilepsy and their families; and it
assists with health systems strengthening to ensure sustainable access
to antiepileptic medicines, reinforce referral systems, and enable
better monitoring of epilepsy within health information systems.
 Global Information Kit on Epilepsy 19

Community durbar in Ghana to

create community awareness about
epilepsy; Photo: Ghana team
Copyright: MOH/GHS/Dr. A. Osei

"Epilepsy. Treat it. Defeat it." Specific objectives of the

Programme
Epilepsy is treatable with inexpensive and effective
medication, and in most cases, people receiving 1. T o strengthen policy and governance for
treatment can lead a normal life. The slogan of the delivery of epilepsy care and services.
WHO Programme on Reducing the Epilepsy Treat-
ment Gap reflects that treating epilepsy means not 2. T o promote training of all professional health-
only defeating the disorder, but also defeating the care providers, making them competent in
stigma and inaccurate beliefs associated with it. diagnosing and treating epilepsy.
Everyone has a role to play in treating and defeating
epilepsy. 3. T o develop epilepsy information, education
and communication campaigns to improve
Overarching goals of the awareness among the public and community
Programme groups.

  Persons living with epilepsy have better access 4. T o integrate provision of care and services for
to essential treatment and the epilepsy treat- epilepsy within the primary healthcare system.
ment gap is reduced.
  There is increased awareness about epilepsy 5. T o enhance the capacity to monitor and
and less stigma associated with the condition. evaluate epilepsy care and treatment.
  Persons living with epilepsy and their families
have an improved quality of life.
  Policies for sustainability of the epilepsy pro-
gramme are developed and implemented.

WHO/MSD/MER/15.7
 Ghana

In Ghana, it is estimated that 250,000 people live with epilepsy

and the disorder is considered one of the top five burdensome
medical problems in the country. Despite the fact that epilepsy is
easily and affordably treatable, more than 85% of people with
epilepsy in Ghana do not receive the treatment they need because
of a lack of appropriately trained health service providers, difficulties
accessing medicines and because epilepsy is highly stigmatized.

In 2012, and in collaboration with the Ghana Ministry of Health,
the WHO Programme on Reducing the Epilepsy Treatment Gap in
Ghana, entitled Ghana’s Fight Against Epilepsy Initiative, commenced.
Successful pilot projects were implemented in two districts, one in the
Northern Region and the other in Ashiedu-Keteke sub-metro, located in
the Greater Accra Region. Since then, Ghana has continued to scale up
the project to include another nine more districts from three additional
regions. As of 2014, the project covers more than 1.15 million people.

After adapting mhGAP resources to local needs, healthcare providers,

including physicians, nurses and midwives, have been trained in epilepsy
management. Additionally, regular meetings with community leaders
have been held in participating districts to increase public awareness
about epilepsy and its medical treatment. Awareness raising materials, such
as posters, pamphlets and flyers have also been developed.

In Ghana, stigma and discrimination are major obstacles for the early identi-
fication, treatment and social integration of people with epilepsy: a large
majority of the population believes epilepsy is caused by evil spirits. Because
of this the Ghana project team have also included traditional and faith healers in
their model of care, since they are often the first port of call for epilepsy care. The
project team have invested time into increasing the understanding of epilepsy and
its medical nature within communities with great success.

Since availability of antiepileptic medicines remains an issue in community

health facilities, the Ghana team have been working to create a consistent, sus-
tainable supply of essential antiepileptic medicines throughout its districts. This
includes the development of national epilepsy guidelines and integrating epilepsy
care within the national mental health care framework. Monitoring and evalua-
tion of the project began in 2014.
 21

Ghana:
A Calling to Treat Epilepsy

Thirteen years ago, Stephen Kontoh got a call. But this was no ordinary
call: it was a call from God to become a spiritual leader. So he stopped
farming cocoa and selling timber and became a faith healer who treats
people with physical, mental and spiritual ailments.

Today, Stephen oversees all faith healers in Kotokye’s top faith healer has become involved
three districts of Ghana’s Central Region. He in the initiative, learning that epilepsy is a non-
runs a prayer camp in Kotokye, Central Ghana, contagious, chronic brain disorder that requires
where he sees people with various illnesses. He treatment with antiepileptic medications. Stephen
claims to heal people who have had strokes, now refers people with epilepsy from his prayer
have problems with alcohol consumption, dia- camp to the nearby community health clinic, and
betes, infertility, and other health issues. It is is an example of how educating traditional and
said he even cures blindness. faith healers can help reduce stigma and discrim-
ination against people with epilepsy.
Stephen’s prayer camp is only 20 metres away
from a community health clinic where the
Programme on Reducing the Epilepsy Treatment
Gap is being implemented by Ghana Health
Services and WHO. As part of the project, several
community volunteers who work at the health
clinic have been trained to raise awareness about
epilepsy and support people living with it.

Copyright: MOH/GHS/Dr. A. Osei

WHO/MSD/MER/15.7
 Mozambique

In Mozambique, it is estimated that 260,000 people live with

epilepsy and that approximately 85% of people living with epilepsy
do not receive the treatment they need. The WHO Programme
on Reducing the Epilepsy Treatment Gap in Mozambique, entitled
Mozambique’s Epilepsy Programme was initiated in 2013. It is
coordinated by WHO and managed by the Mozambique Ministry
of Health. As of 2014, the project covers approximately 3.4 million
population in five provinces: Gaza, Nampula, Niassa, Sofala and
Zambezia.

The Mozambique team have translated & adapted mhGAP training

manuals for the training of doctors, nurses, midwives and psychologists.
This has better equipped district clinics identify, diagnose and treat
people living with epilepsy. mhGAP resources have also been adapted
for use at community leader and volunteer training sessions, which
have been carried out at each province. Traditional and faith healers,
as well as religious leaders from the Christian, Hindu and Muslim faiths,
have been involved in many of the trainings and educational sessions,
and can now identify and refer people they believe may be living with
epilepsy to medical services for treatment.

Stigma and discrimination not only prevent people with epilepsy from
seeking treatment but can also prevent them from leading meaningful lives.
A number of community awareness activities and products have been
developed by the Mozambique team, including an epilepsy education booklet,
brochures, fact sheets, and flyers. These have been disseminated to people liv-
ing with epilepsy, medical clinics, the general public, traditional and faith
healers, NGOs and schools.

Mozambique have strengthened policies and systems related to the supply

of medications across the country; this has included many antiepileptic medica-
tions. Similarly, the Mozambique team have advocated for many antiepileptic
medications to remain on the country’s essential medicines list. This has led to
improvements in medication availability and distribution, so people living with
epilepsy can now access antiepileptic medicines at community clinics and rural
areas. Drafting of a national epilepsy care model is under-way, which will integrate
epilepsy care within mental health services at the primary health care level.
Monitoring and evaluation of the project began in 2015.
 23

Mozambique: The Journey

to Epilepsy Care and Treatment

In a country where more than one quarter of a million people live with
epilepsy, seeking and receiving care and treatment for the condition can
be a long and complex journey. Maria Augusta Alves Vilas Boas, a nurse
at the Ituculo Health Centre, in Monapo district of Nampula province in
Mozambique, has witnessed this journey for over 6 years.

Epilepsy care was part of Maria Augusta’s study The Mozambique Epilepsy Programme team, part
curriculum to become a nurse in Portugal and she of the WHO Programme on Reducing the Epilepsy
completed an internship in a psychiatric hospital. Treatment Gap, has therefore involved traditional
She feels confident to diagnose and treat the con- and faith healers and religious leaders from the
dition. The last time the district’s health care facili- Christian, Hindu and Muslim faiths in the initiative.
ties had antiepileptic medicines available, she was The project team is also training healthcare work-
able to provide care for people with epilepsy even ers and advocating for an improved scheme that
without the support of a psychiatric technician. will ensure the regular availability of basic antiepi-
leptic medicines. This means that nurses like Maria
Most of the time, however, antiepileptic medi- Augusta, and other health care providers, will be
cines are not readily available in public health cen- able to offer safe and effective epilepsy treatment
tres in Mozambique. The absence of basic medi- in the future, improving the journey to health of
cation in the public sector prevents health care people with epilepsy in Mozambique.
providers like Maria Augusta from prescribing
conventional medicine, or in some cases even
drives them to discredit the effectiveness of the
same. Maria Augusta also knows that when med-
ication is available, many patients often do not
take it regularly as prescribed.

A lack of antiepileptic medicines is not the only

challenge Maria Augusta faces in Mozambique’s
official healthcare system. Too often, she has seen
parents of children with epilepsy turn to medical
care only when traditional healers either failed to
improve their child’s condition or worsened it.
Why? In Mozambique, many people think epi-
lepsy is the result of witchcraft.

Copyright: MOH/L. Gouveia

WHO/MSD/MER/15.7
 Myanmar regions
Non-matching

Myanmar country
Non-matching

Myanmar

Epilepsy is one of the most common neurological disorders in

Myanmar and ranks third among the neurological diseases seen
in tertiary health centers. The Myanmar Hope for Epilepsy Initiative
is a collaboration between the WHO Programme on Reducing the
Epilepsy Treatment Gap and the Myanmar Ministry of Health.

After initiating the project in two pilot townships, Hlegu and Hmawbi,
in 2013, the project has expanded to an additional three townships:
Lewe township in the Nay Pyi Taw region, and Thanlyin and Kawhmu
townships in the Yangon region. The Myanmar Ministry of Health has
approved plans for further project expansion in 2015, with the township
of Nyaungdon in the Ayeyarwady region, and the townships of Thaton
and Kayikhto in the Mon region having been chosen. A particular aim of
the 2015 scale up will be to link and integrate the project with non-
communicable disease programs already established in these areas. This
expansion will take the project beyond the original pilot regions of Nay Pyi
Taw and Yangon, and cover a total population of approximately 1.4 million.

The Myanmar project team have developed two manuals for the clinical
management of epilepsy in Myanmar. These manuals have been integrated
into medical officer, nurse and community volunteer trainings which have
been conducted at each participating township to diagnose, treat and follow-
up people living with epilepsy. Voluntary health workers have been trained to
recognize epilepsy and play an active advocacy role in the community, includ-
ing regularly meeting with people living with epilepsy, their families, and the
general public. Communications materials, including posters, brochures and
videos have been developed with the purpose of raising awareness about
epilepsy within communities and reducing stigma surrounding epilepsy. A
national epilepsy day has also been created to promote awareness across the
country each year.

Myanmar’s approach has involved liaison and advocacy to amend policies and
increase the availability and accessibility of antiepileptic medications. This has
included provisions for the local production of phenobarbital within Myanmar. The
Myanmar project team remains committed to working with government and other
partners towards scaling up the project nationally, to ensure access and sustainability
of care for all persons living with epilepsy within Myanmar. Monitoring and evaluation
of the project began in 2015.
 25

Myanmar: Ma Nwe Nwe: Wishing

They Had Known Earlier…

Ma Nwe Nwe Yee works in a Buddhist nunnery near the little village of Bo
Daw Na Gone in Hlegu Township, Myanmar. She helps the nuns with their
chores so she can pay for her daily antiepileptic medication.

The 18-year-old orphan has been suffering Ma Nwe Nwe’s seizures have decreased con-
from epilepsy since childhood. She was forced siderably since she started her daily medication.
to leave primary school because of her frequent Had she and her grandmother known about
seizures, memory loss and learning difficulties, epilepsy and had the seizures been medically
and she has stayed at home with her grand- treated earlier, Ma Nwe Nwe could have
mother ever since. Ma Nwe Nwe’s grandmother continued her schooling and created a better
tried many of the traditional healing methods life with her grandmother.
but none of them helped her granddaughter.
The seizures continued, and so did the isolation. Although Ma Nwe Nwe’s health has improved,
she still struggles: Myanmar does not have a
Last year, Ma Nwe Nwe’s life changed radically. health insurance scheme and her work at the
On a field visit to Hlegu Township to raise nunnery barely covers the cost of her daily
awareness about epilepsy, medical students medication.
met the orphan. They referred her to a nearby
health facility, where she was enrolled in the
Myanmar Epilepsy Initiative, part of the WHO
Programme on Reducing the Epilepsy Treat-
ment Gap, and prescribed daily antiepileptic
medication.

WHO/MSD/MER/15.7
 Viet Nam

In Viet Nam, it is estimated that 350,000 people live with

epilepsy. Despite the fact that epilepsy is easily and affordably
treatable, more than 75% of people living with epilepsy in Viet
Nam do not receive the treatment they need because of a lack
of trained health staff, difficulties accessing medications, and
because epilepsy is highly stigmatized.

Having commenced in 2012, the Viet Nam’s “Fight Against Epilepsy

Initiative” is a collaboration between WHO and the Viet Nam Ministry
of Health. Pilot project provinces have included Ban Ninh, Hung Yen
and Phu Tho and a total population coverage of 2.9 million. Further
scale up is planned for 2015 to include the Ha Nam province.

The process used to implement the project has required regular

advocacy meetings between WHO, the Ministry of Health and provincial
psychiatrists to explain the project model in depth and demonstrate
how non-specialist health care providers can help reduce the workload
of specialist health care providers.

In Viet Nam, stigma and discrimination are major obstacles for the early
identification, treatment and social integration of people with epilepsy.
Therefore, project activities have included communications and education
sessions about epilepsy. Health care workers have been trained to educate
patients and communicate with them effectively and compassionately,
and conduct community meetings in an effort to raise awareness about
epilepsy among the general public.

Viet Nam’s approach includes extensive work on the development of guidelines

and frameworks, including the integration of the project with established non-
communicable disease programmes. Similar to other country approaches, there
is a major focus on training health care workers in epilepsy management. This
capacity-building of human resources helps to ensure the sustainability of the
project. Monitoring and evaluation of the project began in 2014.
 27

Viet Nam: Improving Epilepsy

Awareness and Care

Epilepsy can be caused by a number of health problems, such as genetic

factors, brain damage caused by infection, complications at birth, brain
injury, parasites, alcohol or other substances. More often than not, however,
epilepsy does not have a visible or identifiable cause. In many places in Viet
Nam, the existence of such a spontaneous and invisible condition is explained
by beliefs of ghostly influences, or madness. These superstitious beliefs and
other myths, for example that epilepsy is contagious and hereditary, are
important causes of stigma, which has serious social repercussions.

Dr Tran Quy Tuong is Deputy Director of the Med- The Viet Nam Ministry of Health are committed
ical Service Administration at the Viet Nam Minis- to bringing greater understanding about epilepsy
try of Health, and a staunch advocate for mental and increasing epilepsy management capacity at
and neurological health. “The Ministry of Health the district and commune levels. Collaborating
has long been motivated to help combat the with WHO as part of the WHO Programme on
superstitions surrounding epilepsy and address the Reducing the Epilepsy Treatment Gap, a new
country’s epilepsy treatment gap”, states Dr approach for epilepsy is being carried out and will
Tuong. “Fifteen years ago, epilepsy was identified provide evidence for the Ministry of Health to
as one of the top two priorities in a nation-wide change strategies for epilepsy management.
programme to address mental health and neuro-
logical disorders. Today, most people with epi- To dissipate the belief that people with epilepsy
lepsy in Viet Nam are able to access treatment if are possessed by ghosts, healthcare providers
they live in large urban areas, which are served by have been trained not only on the management
central or provincial level healthcare facilities”. of epilepsy, but also on how to communicate
about epilepsy in their communities. They are
However, a challenge remains in rural areas, engaged in distributing information and commu-
where people with epilepsy are still frequently not nication materials to communities at district and
diagnosed or treated at the commune health sta- commune levels.
tions, district health centres or district hospitals,
because of a lack of qualified health professionals. “Local government also plays a big role in
It is often in these areas where myths about epi- engaging the community, raising awareness
lepsy and discrimination towards people with epi- and providing social support to families and
lepsy are most persistent. patients with epilepsy”, says Dr Tuong. By raising
awareness about epilepsy at the community
level, discrimination against people with epilepsy
may become a thing of the past.

WHO/MSD/MER/15.7
Reducing the Epilepsy
Treatment Gap: What You Can Do
The objective of the Global Information Kit on Epilepsy is to provide
easy-to-understand information about epilepsy to key stakeholder
groups. While information is important to increase knowledge, actionable
information is critical to effect sustainable change. This “What you can
do” section offers concrete, practical actions for policymakers, specialist
and non-specialist health care providers, people with epilepsy and
their families, NGOs and the general public.

Some of the suggested actions are simple and can be taken at the
individual level, whereas others require collective involvement. When
undertaken, all the actions reflect a commitment to defeating epilepsy
and reducing the unacceptable and preventable treatment gap. WHO
invites international, regional, national and local partners from within
the health sector and beyond to engage in, and support, the implemen-
tation of WHA68.20 actions and will continue to lead and coordinate
support for countries in addressing the global burden of epilepsy.
 Global Information Kit on Epilepsy 29

What You Can Do

Information for Policymakers
Epilepsy is a serious public health issue that imposes an enormous physical, psychological,
social and economic burden on individuals, communities and countries. This burden is in
part due to stigma and discrimination directed at people with epilepsy and their families,
preventing them from being educated, working and impeding their overall quality of life and
productivity. Available and accessible, treatment for epilepsy is cost-effective and can be
provided within the existing healthcare system of any country.

Strong policies and orchestrated support can set the foundations that effectively and
sustainably help reduce the epilepsy treatment gap.

As a policymaker, this is what you can do:

  Consider undertaking a situation analysis to   Carry out strategies to make antiepileptic
find out more about the burden of epilepsy medicines more available, accessible and
and the health service needs for epilepsy care affordable.
in your country.1
  Strengthen health information and surveil-
  Integrate epilepsy management into primary lance systems to better capture data on epi-
health care in your country. In order to help lepsy in your country.
reduce the epilepsy treatment gap, non-spe-
cialist health care providers should be trained   Implement the WHO Programme on Reducing
and supported so that epilepsy can be diag- the Epilepsy Treatment Gap in your country by
nosed and treated in primary health care first piloting it in a particular area and then
settings. scaling up nationally. Contact WHO to talk
about how you can implement the Pro-
  Formulate, strengthen and implement effec- gramme in your country.
tive and inclusive national health policies and
legislation that protect the human rights of
people with epilepsy. Ensure that local and
national stakeholders, including people with
epilepsy and their families, become involved
in these policymaking plans.

What will you do today?

1) Tools for conducting training in epilepsy management, situation analysis, awareness-raising about epilepsy, and monitoring
and evaluation are available from WHO upon request.

WHO/MSD/MER/15.7
What You Can Do
Information for Specialist and
Non-Specialist Health Care Providers

With appropriate training and supervision it is possible for non-specialist health care providers
to manage epilepsy in primary care settings. This helps to shift the burden of epilepsy away from
specialists and hospitals, and back into the community where health facilities are more accessible.
It is important to recognize that all health service providers have an essential role to play in
bringing treatment to the millions of people with epilepsy.

As a non-specialist health care As a specialist health care provider,

provider, this is what you can do: this is what you can do:
  Learn more about epilepsy and the associated   Help increase awareness and reduce stigma
burden in your community. about epilepsy by participating in events that
increase community awareness, for example
  Identify and collaborate with other health care school visits or community gatherings.
providers or community groups who can help
advocate for and support people with epilepsy.   Train and supervise non-specialist health care
providers to diagnose, treat and follow-up peo-
  Request and participate in training on epilepsy ple with epilepsy, including when to refer if
management if you do not feel confident assess- necessary.
ing and treating epilepsy.
  Advocate to high-level policymakers for
  Advocate to administrators and policymakers for increased access to treatment for people with
the integration of epilepsy treatment and care epilepsy, including making essential antiepilep-
into the primary healthcare system of your region tic medicines available through the national
or country. health insurance system.

What will you do today?

 Global Information Kit on Epilepsy 31

What You Can Do

Information for People with
Epilepsy and Their Families

Epilepsy is a medical condition that can be treated in most cases. Having epilepsy is
not shameful; people with epilepsy have the same range of abilities as anyone else and
can lead meaningful lives.

Unfortunately, many people don’t yet understand that epilepsy is a non-contagious

medical condition that can affect anyone, and which is not caused by evil spirits or curses.
People with epilepsy can be productive members of the community, and can work, get
married and have happy, healthy families.

As a person with epilepsy or a family member of a person with epilepsy,

this is what you can do:
 If you have epilepsy, seek treatment. In most  Ensure that your family can help and
cases, epilepsy is easily and affordably treated support you. Talk to them about what you’ve
with daily oral antiepileptic medicines. learned about epilepsy and ask them to talk
to healthcare providers or community groups
 Learn more about epilepsy and talk to your for support.
health care provider about available treatments
and support groups.  Find out if there are other people with
epilepsy who live near you, and how you can
 Find out if there are community support groups support each other. Consider starting your
or NGOs near you who can help you learn own support group and become a champion
more about epilepsy and provide support. You for epilepsy awareness! You can also reach out
can also ask a health-care provider to give you to NGOs and ask them to help you raise
information about these groups. awareness and reduce stigma about epilepsy
in your community.

What will you do today?

WHO/MSD/MER/15.7
What You Can Do
Information for Nongovernmental
Organizations (NGOs)
The lack of understanding around epilepsy causes unnecessary suffering for people living with
epilepsy and their families. NGOs and other community groups can help relieve this suffering by
providing information and support to people with epilepsy and their families, and by raising
awareness about the disorder in their communities.

As an NGO, this is what you can do:

  Get informed. Learn more about epilepsy and   Implement support programmes to help peo-
the associated burden in the communities you ple with epilepsy and their families to be fully
work in. Learn more about the WHO Pro- integrated into the community, including in
gramme on Reducing the Epilepsy Treatment professional and social capacities.
Gap and how it might help.
   Activate your networks and lobby administra-
  Help reduce stigma by organizing education tors, policymakers and other stakeholders to
and awareness-raising activities for the com- learn more about epilepsy and establish
munity and health service providers. appropriate national policies.

What will you do today?

 Global Information Kit on Epilepsy 33

What You Can Do

Information for the
General Public
Epilepsy is the most common serious brain disorder worldwide and can affect anyone.
Epilepsy is not contagious.

People with epilepsy are normal people whose brain, for a variety of medical reasons, has
unusual electrical activity that causes physical symptoms and seizures. People with epilepsy
and their families should be included in the community and recognized as contributing
members of society. By learning more about epilepsy, you can help reduce the misunderstandings
about the condition and the discrimination that is directed towards people with epilepsy
and their families.

As a member of the general public, this is what you can do:

  Learn more about epilepsy. You can go to   Lobby administrators, policymakers and
page 9, the WHO website2 or talk to a trained other community members to learn more
health care provider at your community medical about epilepsy and the WHO Programme on
facility. Reducing the Epilepsy Treatment Gap.

  Help reduce stigma by talking openly about   Get involved with epilepsy-focused
the facts of epilepsy with your family, friends community groups or NGOs to support
and community, and by supporting people their advocacy efforts.
with epilepsy to attain the highest possible
quality of life.

What will you do today?

2) [Link]

WHO/MSD/MER/15.7
The WHO Programme on
Reducing the Epilepsy Treatment
Gap: Implementation Approach
Building on previous WHO collaborative projects and the evidence-
based methods of the WHO Mental Health Gap Action Programme
(mhGAP), the WHO Programme on Reducing the Epilepsy Treatment
Gap is showing great promise in increasing access to treatment for
hundreds of thousands of people living with epilepsy.

If you want to reduce the epilepsy treatment gap in your country

and help improve the quality of life of people living with epilepsy, you
can also implement the WHO Programme on Reducing the Epilepsy
Treatment Gap.
 Global Information Kit on Epilepsy 35

Method
The overarching goal of the WHO Programme on Reducing the Epilepsy Treatment Gap is to
improve the quality of life of patients living with epilepsy and their families and assist in reducing
the epilepsy treatment gap. The foundations for project implementation and its activities are built
on the following components:

Get started
Identify the burden of epilepsy in your country context, as well as the key stakeholders who will
need to be contacted and engaged. Critically consider the overarching objectives for the project:

1. To strengthen policy and governance for delivery of epilepsy care and services;
2. To promote training of health care providers, making them competent in diagnosing
and treating epilepsy;
3. To develop epilepsy information, education and communication campaigns to improve
awareness among the public and community groups;
4. To integrate provision of care and services for epilepsy within the primary health care
system; and
5. To enhance the capacity to monitor and evaluate epilepsy care and treatment.

A) Gather information and conduct a situation analysis

A situation analysis provides a thorough understanding of the needs and resources available
related to epilepsy in the country, and the coverage and quality of essential treatment. It helps
identify any strengths and weaknesses of the current system and any barriers to expanding ser-
vices. Human, financial and material resources will also be identified. Normative situation analysis
templates are available from WHO for national, regional, district and facility level analyses. It is
encouraged that these templates be adapted to the local context in which they are being used.

B) Form a national coordination committee

A national coordination committee takes on various responsibilities related to the implementation of
the project. Examples of committee members include: Ministry of Health representatives, neurology
or mental health specialists, WHO Country Office representatives, and Chief Pharmacists or Medical
Officers. The committee uses consensus building and participatory processes to make decisions.

WHO/MSD/MER/15.7
C) Develop an action plan
An action plan should be developed at the beginning of the project to outline the overarching
activities and timelines, including which areas of the country will pilot the project. Updated and
detailed action plans should also be developed periodically, for example annually, to guide the
yearly activities and progress. The action plan should reflect the overall objectives of the project,
should be reviewed regularly, and adapted if necessary.

D) Adapt and prepare to use normative protocols and tools

for implementation of activities
A number of normative tools and protocols have been developed by WHO to facilitate various
country-specific activities and are available for free. These include training materials for epilepsy
management; a communications strategy to enhance visibility of the project and awareness-
raising; and a monitoring and evaluation toolkit for assessing epilepsy care and treatment. These
can be adapted to the local context or used as examples in the development of new tools and
protocols.

E) Build national capacity through training

Training in the WHO Programme on Reducing the Epilepsy Treatment Gap is carried out
in three tiers.

  Training is conducted with neurologists and mental health specialists to become “trainers” and
“supervisors” for non-specialist health care providers, for example general physicians or nurses.
  Training of the non-specialists in epilepsy management is carried out, to improve the delivery of
epilepsy services and care in primary health care facilities.
  Training of community-based health workers, community groups and volunteers is conducted
to provide them with skills to recognize, refer and support people with epilepsy and their
families.

Training and reference materials have been developed by WHO for all three tiers of training and
are freely available upon request. The technical aspects of each training are based on the WHO
mhGAP Intervention Guide for Mental, Neurological and Substance Use Disorders (mhGAP-IG).

 Global Information Kit on Epilepsy 37

F) Raise awareness
A main barrier to reducing the epilepsy treatment gap in low- and middle-income countries has
been the stigma that surrounds the condition. Therefore, raising awareness and educating the
public about epilepsy remains a key priority. This includes learning more about people’s current
attitudes and knowledge about epilepsy, developing key messages which address any knowledge
gaps, and creating communication materials that are pointed, relevant, and practical for use by
their intended audiences. Engagement with stakeholders at international, national, and local lev-
els is also critical to ensuring the sustainability of the Programme.

G) Strengthen the health system

Several actions should be taken to help strengthen the health system to improve provision of
epilepsy care. National policies and legislation should be reviewed to include consideration of care
for people living with epilepsy, and should be formulated, strengthened and implemented to
promote and protect the rights of people with epilepsy. Activities to support the availability of a
strong and functional referral system should be carried out. Strategies should be formulated and
implemented to make antiepileptic medicines more available, accessible and affordable. Health
information and surveillance systems should be strengthened to ensure the collection, routine
reporting, and analysis of epilepsy data.

WHO/MSD/MER/15.7
References

1. World Health Organization. (2014). EB136/13 Secretariat Report: Global burden of epilepsy
and the need for coordinated action at the country level to address its health, social and
public knowledge implications. Geneva. World Health Organization. Accessed 5 Aug 2015 from
[Link]

2. World Health Organization. (2015). WHA68.20 Global burden of epilepsy and the need for
coordinated action at the country level to address its health, social and public knowledge
implications. Geneva. World Health Organization. Accessed 5 Aug 2015 from
[Link]

3. World Health Organization. (2015). Fact Sheet No. 999: Epilepsy. Geneva: World Health
Organization. Accessed 3 September 2015 from [Link]
fs999/en/

4. World Health Organization. (2009). Epilepsy Management at Primary Health Level in rural
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Follow up study of the WHO Global Campaign Against Epilepsy Demonstration Project in rural
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Neurosurgery, 12(5), 530-535.

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In Engel, J., Pedley, T. eds. (2008). Epilepsy: A comprehensive textbook. Philadelphia: Lippincott
Williams & Wilkins.

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Epilepsy & Behaviour, 12(4), 540-546.

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Africa. Acta Tropica 87(1), 149-159.

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Care in Europe. Netherlands: World Health Organization Regional Office for Europe.
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10. Kwan, P., Sander, J. (2004). The natural history of epilepsy: an epidemiological view.
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WHO/MSD/MER/15.7
Contact information
Department of Mental Health and Substance Abuse
World Health Organization
Avenue Appia 20
CH-1211 Geneva 27
Switzerland

Email:
mhgap-info@[Link]

Website:
[Link]/mental_health/neurology/epilepsy/en/