Epilepsy in Ghana: Let’s collaborate, crusade and fight it till the end

“Before I got married to my wife 11 years ago, I've heard people telling me all kinds of nasty things. Not to talk about the discouragement I even got from my church leaders.

But I said to myself, since I'm even called Thomas, I'll try and play the doubting Thomas in the Bible just to doubt the things they were saying.

So I challenged myself I’m going to be the different one among all the Thomas’s at least to prove to the world that persons with epilepsy deserve the right to be happy and to be cared for and that’s why I’m living with this challenge. I thank God we’ve been very successful to be able to go out and talk to a lot of people about this condition", Thomas Larbie, an advocate for epilepsy revealed.

“I’ve realized that the condition is not the problem but the behavior of people surrounding the condition. It is the people around us that make the condition a problem. I remembered in my school days growing up as a child and what happened was, we dreaded this disease and we run away from the person who gotten the seizure. It happened just in our classroom when one of our colleagues was gripped by a seizure. What we all did was to run away immediately including even the teacher who was teaching us and no one dared to come close to him. In those days we were told that even if the person's saliva touches you, ah! you will definitely contract the disease.

As I grew old, I sometimes feel very sympathetic with people living with it”, said Sheik Aremeyaw Shaibu,Spokesperson of the National Chief Imam.

"Twice I used to get seizures, sometimes 10 times in a month. I started getting this attack at a tender age of 7 years. It was very difficult moments for me. Sometimes I asked myself if I could ever get married to any man with this disorder.

Most people hold the view that those of us living with this condition would never give birth to children, so I was worried but I was shocked when I got pregnant and I could boast of 2 beautiful children who are boys”, Josephine Kwagbenu, a resident of Keta and a person living with the epilepsy condition narrated.

These are real life experiences shared by some experts, advocates and victims which vividly pointed out to how the public portray and relate with people living with the epilepsy condition.

Among all the experiences shared pointed out to misconception and stigmatization as dominant factors militating against the survival and freedom of people living with epilepsy.

Epilepsy is a chronic disorder of the brain characterized by recurrent seizures. It is one of the world’s oldest recognized conditions. The disease affects people of all ages and often has no identifiable cause.

According to WHO, more than 65 million people worldwide are living with epilepsy, making it one of the most common neurological diseases globally.

The median incidence per 100, 000 population per year is higher in low-and middle-income countries than in high-income countries.

It has been estimated that nearly 80% of people with epilepsy live in low-and middle-income countries.

Epilepsy accounts for 0.6% of the global burden of disease, a time- based measure that combines years of life lost due to premature mortality and years lived in less than full health.

In 2015, epilepsy caused more than 10 million “disability-adjusted life years” (DALYs) and ranked second only to stroke among other selected neurological diseases in terms of years of potential life lost.

It has significant economic implications in terms of health-care needs, premature death and lost work productivity.

In Ghana, a country of 27 million people, about 270 000 people live with epilepsy; however, only 15% of them are receiving treatment and care, resulting in an epilepsy treatment gap of 85%.

Epilepsy is identified by the national health authorities in Ghana as a high priority in 2011 and the most prevalent neuropsychiatric condition seen in rural health clinics and among the top five medical problems in the country.

Ghana's bane revolves around many disturbing factors with the greatest among being a very high treatment gap with managing patients with epilepsy.

As part of efforts to close the gap and curb the disease, the Ministry of Health(MOH) in collaboration with the WHO launched the “Fight against epilepsy” initiative in Ghana in 2012(WHO Programme on reducing the epilepsy treatment gap 2012-2016).

The goals of the five-year project were to improve the identification and management of people with convulsive forms of epilepsy within the existing primary healthcare system and to develop a model of epilepsy care at the community level that could be scaled up nationwide.

It equally seeks to reduce stigma, raise awareness and train non-specialist healthcare providers and overall increase access to quality care.

The project was implemented gradually across five regions comprised of 10 districts and 55 hospitals and clinics.

Its components included developing a strategy for delivering epilepsy care, training healthcare workers and volunteers, raising awareness and educating the public, particularly at the community level, engaging traditional and faith healers and strengthening, monitoring and evaluation of epilepsy.

Over the five years’ period, 29 specialists, including neurologists and psychiatrists, were trained to become trainers and supervisors in epilepsy care management while 690 non-specialist primary healthcare providers, including CPNs, general practitioners and nurses, were trained to diagnose and treat epilepsy.

In addition, 770 CHWs and volunteers, including traditional and faith healers, midwives, teachers, nongovernmental organization staff and other health staff, were trained to detect possible cases of epilepsy, to assist in acute seizure episodes and to refer cases for further medical care.

Also, community awareness was raised through multiple channels, including mass community meetings, FM radio broadcasts, newspaper articles and health education sessions.

Overall, 1386 community awareness-raising activities were conducted, with an estimated total audience of 96 094 people.

As everything that has a beginning equally has an end, so it is with the five-year WHO/Ministry of Health’s “Fight against epilepsy” initiative project in Ghana which came to a successful end in 2016, recorded positive results and awaiting an extension for coverage of the entire country going forward.

Commenting on the success of the project, the Minister of Health, Kwaku Agyeman-Manu said, “Despite many challenges associated with the limited number and capacity of the workforce, the absence of national policies, high levels of stigma and discrimination, the project provided treatment and care to over 2700 people with epilepsy that had not been diagnosed before the project.

According to him, with 21 315 consultations, over three-quarters of the patients managed in project reported significant improvements in their quality of life.

Mr. Agyeman-Manu also averred that the unwavering commitment and focus of the Ghana epilepsy project team shows that demonstration projects such as the Fight against epilepsy can significantly increase access to high-quality care and hence reduce gaps in epilepsy treatment.

He also indicated that the successes chalked by the entire team during the five-year project also demonstrate the feasibility of extending the management of epilepsy from pilot sites to an entire country, from countries to regions and from regions globally.

At the end of every meaningful project, publications are made to give an account of how the it was conducted, its achievements including the way forward so it is with the “fight against epilepsy initiative” project which served as a ‘messiah’ to many unfortunate Ghanaians living with epilepsy.

To cap it all, the Mental Health Authority, in collaboration with the World Health Organization (WHO), on Thursday, September 9, 2018 launched the much awaited report on the five-year project, a 52 pages’ book dubbed “fight against epilepsy” initiative in Ghana.

The publication was coordinated by Tarun Dua (Programme Manager) under the overall direction of Shekhar Saxena (Director, Department of Mental Health and Substance Abuse, WHO headquarters). It was written and edited by Cynthia Sottie (Ghana Health Service); Edith Andrews Annan (WHO Ghana); Caroline-Anne Coulombe (Centre for Authentic Communication, Canada); Brooke Short, Capucine de Fouchier, and Meredith Fendt-Newlin (WHO headquarters).

The publication also benefited from review and advice from colleagues at the WHO Regional Office for Africa and Department of Mental Health and Substance Abuse, WHO headquarters.

It seeks to raise awareness and educate the general public on the true facts about epilepsy and the urgent need for improved treatment, better care and greater investment in research.

It also outlines efforts made to integrate epilepsy cases in primary health care in Ghana and ensure community participation.

Mr. Kinsley Aboagye Jedu, Deputy Minister of Health speaking at the launch of the report maintained it encompasses the successes achieved in the fight against epilepsy initiative in spite of the teaming challenges the ministry and the preventive agencies in Ghana are faced with.

He noted that 2,700 new cases of people living with epilepsy were diagnosed and treated during the project, and it further recorded significant improvement in the quality of life of over three quarters of patients under the project.

In his statement, Dr Owen Kaluwa, WHO, Country representative appealed to government to endeavor to integrate epilepsy management into primary healthcare and promote community involvement in the management and social integration of people living with epilepsy, as well as help allocate more resources for its care and treatment.

He called on the Ministry of Health to scale up the initiative to other regions and districts and improve the availability of antiepileptic medicines, which was a major challenge during the project implementation to those who require them.

He applauded Sanofi Espoir Foundation for the financial contribution towards the success of the five-year project.

Dr. Kaluwa, expatiating on the epilepsy, noted it is the most common serious brain disorder worldwide, and despite being one of the world’s oldest known medical conditions, public fear and misunderstanding about it persists, making people reluctant to talk about it.

According to him, its reluctance leads to lives lived in the shadows, discrimination at workplaces and communities, and lack of funding for new therapies and research, adding that, for such people, the misconception and discrimination can be more difficult to overcome than the seizures themselves.

He said about 50 million people worldwide have epilepsy and most of them live in resource poor regions, saying that, every year 2.4 million people are diagnosed with it, and in Ghana, it is estimated that it affects about one to two per cent of the population.

In his estimation, the condition can easily and affordably be treated with inexpensive daily medication that cost as little as US$ 5 per year and a majority of people affected can live normal lives when they get treatment.

He commended the Ghana Epilepsy Project team for their commitment towards the success of the project, which also demonstrates the feasibility of extending the management of epilepsy from pilot sites to the entire country.

The team members include Akwasi Osei, Amina Bukari, and Chief Coker Asian from the Mental Health Authority. The rest are Albert Akpalu, Sammy Ohene and Patrick Adjei from the Korle Bu Teaching Hospital. It also comprises Philomena Nkansah, Confidence Brown, Charles Vigbedor, Issah Musah, Theophilus Gaisie, Daniel Asiedu, Justina Awaworyi, Cephas Anorku, Samuel Boateng, Haruna Ibrahim, Afrifa Gaddiel Nkum and Cindy Tetteh-Ocloo from the Ghana Health Service. Finally, Peter Yaro from the Basic Needs, Ghana(NGO).

Spokesperson for the National Chief Imam, Sheikh Aremeyaw Shaibu who chaired the occasion that brought together participants from all walks of life in the health sector, advised families, communities and the general public to show love and care to people living with the disorder.

Chief Executive Officer(CEO) of Mental Health Authority, Dr Akwesi Osei, in his speech commended the WHO, DFID including other partners for choosing Ghana among the four countries worldwide who benefited from the project.

He stated that epilepsy is not a mental illness therefore anyone living with it should not be taken as a mad person but to respected and treated with care just like any other patient.

Dr Akwesi Osei was elated to see Ghana’s treatment gap of 85 percent (indicating 85 per cent of people who lived with the condition without access to proper care) reduced to 60 percent due to the success of the project.

Delivering a speech at the launch, Team Leader for Social Sectors at DFID Ghana, Jemima Gordon-Duff noted DFID has a keen interest in the area of mental health care with the aim of ensuring that no one is left behind in accessing healthcare.

According to her that commitment has been demonstrated in so many ways in Ghana especially during the execution of the "fight against epilepsy" initiative in Ghana project.

In her presentation on the topic “Epilepsy, treat it, defeat it”, WHO Programme Manager at the Dept. of Mental Health and Substance Abuse in Geneva, Dr Tarun Dua, revealed the prevalence of epilepsy in sub-Saharan is estimated at 9.39 per 1000, nearly three times higher than the prevalence found in high-income countries.

She indicated that “epilepsy disproportionately affects children and adolescents”, adding a study in five countries of Africa (South Africa, Tanzania, Uganda, Kenya and Ghana) found that 51% of the people living with epilepsy evaluated were children and 69% of seizures began in childhood.

She added that premature mortality due to epilepsy is higher in Africa compared to other countries as shown in studies from rural Kenya and South Africa.

Touching on the outcome of the five-year project, Dr Dua indicated that Ghana’s Fight against epilepsy initiative demonstrates that there are simple, cost-effective ways to treat epilepsy in low-resource settings at the community level.

She averred that the strategic model integrated in Ghana’s primary health care services was shown to be affordable, accessible and provide good quality care for people with epilepsy and their families.

According to her, the many lessons learnt during the execution of the project will be used to further inform the WHO Programme on reducing the epilepsy treatment gap and can feasibly be scaled up to strengthen other health systems globally.

According to her, only 13% of countries in the African region, 0% countries in South-east Asia region reported having legislation on epilepsy.

Data available showed that problems across neurological diseases, not only epilepsy, (65%) report the inclusion of neurological disorders in the general health policy, equivalent to 36% of all WHO Member States. (57%) of 118 responding countries, neurological disorders are included within the national mental health policy. Only 46 countries (38%) report dedicated or specific policies on neurological disorders, this affects help-seeking and access to treatment and care for epilepsy.

Epilepsy has severe social implications on people living with it. What makes it a dreaded condition to manage is not the difficulties to overcome the seizures themselves but the discrimination and social stigma surrounding it worldwide which are identified as the major gaps.

It appears there's some glimmer of hope for Ghana as far as defeating epilepsy from the knowledge acquired out of the five-year project if not all, thankfully through the unwavering support of the WHO, DFID, the Sanofi Espoir Foundation, the Ministry of Health, Ghana Health Service and other partners involved in the mental healthcare delivery systems.

Yes, knowledge they say is power and applying the right knowledge leads to obtaining the desired results.

I hold the view that for Ghana to achieve the desired result would require us all to implement the project goals clearly stated in the fight against epilepsy initiative report which include developing a strategy for delivering epilepsy care, training of healthcare workers and volunteers to handle epilepsy care, raising awareness and educating communities against epilepsy, engaging traditional and faith healers in the fight and strengthening the monitoring and evaluation system of epilepsy initiatives in the country.

I believe with the application of the above principles would amount to nothing but total defeat of the epilepsy which would also require us all; stakeholders, including the government and communities on board to put their efforts together towards achieving result.

The WHO and its partners have demonstrated unwavering support towards the fight in their quest to intensify the global call for people living epilepsy to get treatment, support and care.

It is our time as citizens, nation, stakeholders, government, communities and individuals to demonstrate our commitment and support the cause in equal measure to end this fight.

The WHO programme on reducing epilepsy treatment gap has it slogan which goes: “Epilepsy: Treat it. Defeat it”.

The slogan indicates that the aim is not only to treat the disorder but also to defeat the stigmatization and inaccurate beliefs associated with it.

I believe we should all be inspired by the WHO slogan as a nation but our version of the slogan should be: “Let’s collaborate, crusade and fight it(epilepsy) till end”.