HEALTH | EPILEPSY | MUKIZA

KAMPALA - The number of people with epilepsy is increasing in Uganda, but the quantity of medicines given is not sufficient to help them control seizures, a study reveals. 

 Dr. Nelson Mukiza, a public health specialist, researcher and mental health enthusiast in particular epilepsy, says the medicines may be available but the quantities are not enough to manage the patients. 

 “The main issue is that there is not a very good way of quantifying the data. We are using estimates, and quantifications based on other criteria other than the actual number of patients coming in for care,” Dr. Mukiza, who led the study and presented findings said. 

The study by the Epilepsy Support Association Uganda (ESAU) conducted in June and July last year at Butabika and Mulago national referral hospitals, Jinja regional referral hospitals, Budondo and Buwenge Health Center IVs mainly looked at availability of Anti-epileptic drugs (AEDs). 

It was released in October last year.

The health facilities are among the top five for people with epilepsy and have the highest number of patients. 

Found to further affect the availability of drugs was healthcare providers who do not know about managing epilepsy. “When the medicines are brought, they do not know how to use them,” Dr. Mukiza said. 

“Many times, the planners choose not to procure the medicines because they are not going to be used,” he added. 

“The picture we found reflects what is in other parts of the country, districts and regions. Perhaps it could be worse because our study areas where urban and they have alternatives such as private healthcare which is not in rural areas.” 

He explained AEDs control some of the symptoms such as seizure, mental health activity, intellectual capability the medicine tries to normalize the lives of people with epilepsy so that they can go on to live productive lives. 

Epilepsy is a neurological condition characterized by unprovoked seizures happening more than once in a space of 24 hours, Dr Hillary Kuteesa a Psychiatrist working at Butabika hospital explains. 

“For the epileptic person there is that sense of uncertainty over when the next seizure will come and where it will find them. 

“This is a disease that is prone to be stigmatized because the seizures come anywhere, anytime, most times unannounced and you can’t do anything about it. 

“It gets people into embarrassing situations sometimes sadly they fall into fires and burn, fall into water and drown, fall in traffic get hit by a car, it is not a very good experience,” Dr Kuteesa explained. 

Epilepsy can be inherited, Dr Kuteesa explains. “You will find a history of it in the family but there those that happen because of events around pregnancy. 

 “During pregnancy a mother may get an illness that affects the child especially the growth of the nervous system. It may lead to epilepsy.” 

Then there those cases that happen as a result of events that surround delivery, or birth related events such as prolonged labour, infections in pregnancy, and traumatic delivery, “all increase risk of getting epilepsy later in life,” Dr Kuteesa said. 

Early childhood illness is another cause of epilepsy. “For example, when a child gets meningitis, infection of the brain, trauma to the brain, all that multiple the risk of someone getting epilepsy. These are those causes we can identify,” he explained. 

“But there are times someone is well, perhaps a teenager in their 20s and they start having seizures yet we cannot find out why. 

“It is not that they are drinking alcohol, they have not had any head injuries, suffered any illnesses but they start having seizures. We identify this form of epilepsy as primary epilepsy because no underlying cause can be identified whereas secondary epilepsy is the form where we can identify the cause,” Dr Kuteesa explained. 

The numbers

It is estimated that the number of people with epilepsy in Uganda so far is close to a million people. But the figure could be much higher, according to Dr Kuteesa. 

“When you sit at any mental health facility you find more than 50% of the people brought for care have epilepsy. How about those who are still being hidden in homes, even shrines? They are very big numbers. 

“The fact that many people hide or are not aware of the fact that they have epilepsy. They do not seek care in health facilities; hence the data is not captured.” 

“Epilepsy is a disease that causes a lot of stigma, there is fear for the family, implications on marriage, recreation, or even getting an education and also impact on the kind of work one will do. It creates a lot of restrictions on the person. But there is hope,” Dr Kuteesa. 

“There is treatment, when we give treatment and the treatment is adhered to, and also optimized we tend to find significant recovery for most of the people. They are able to do most of those things that they couldn’t do while the seizures were raving them. 

“This is where we want to put our drive that we know that there is evidence that the treatment works but the treatment is not available in the hospitals. 

“When treatment is available it is for a short period of time. As a result, they ration the drugs because if they give everyone a full dose there will be no drugs to go around. They end up giving people half the dose so that everyone can at least get some medicine,” Dr Kuteesa said. 

He says with the recent COVID-19 problems, and high cost of transport, the patient will not come back to look for or get more drugs instead they end up fitting more. 

“We also have the challenge of the patient even If the medicine is given sometimes the patients themselves perhaps have not understood how to take them. When they take them wrongly it does not help the cause for which they were given,” Dr Kuteesa said. 

The Challenge 

One of the reasons is that the management of epilepsy in the healthcare structure has been put under mental health and is treated by mental health care workers who sometimes tend to be few in the facilities. 

They are the only ones with the knowledge, so if one goes for study, the facility will pick someone from the general pool to come and manage the condition. That’s when the issues come in because they do not know the medicine but have to cover for the knowledgeable people who are away, Dr. Mukiza said. 

Way forward  

Dr. Mukiza says the Ministry of Health should address the human resource gap which has been a major issue. He says there is need to provide more training to make sure all health providers can manage epilepsy at all levels of healthcare. 

“If epilepsy is going to be managed under mental health, then we need adequate staff there because they constitute the largest number of patients with mental health diagnosis. 

“The numbers have to be increased of the people managing the patients because they come every month. They have planned visits. It is Known how many people will come in a next month. Plan for the health workers,” he said. 

Dr. Mukiza says the budget too for epilepsy drugs must be increased. “The budget ceiling is currently low. There is rationing of medicine and medicines that are used regularly like paracetamol (common Panadol) and anti-malarial’s take the lion’s share of the budget that the lower health facilities have. 

“They only have a small amount of money to purchase one or two AEDs regardless of the number of patients they have at the facility. It is a major gap that the Ministry of Health needs to address by increasing the budget to ensure medicine is there,” he said. 

The study also recommended routine training of all health works not just mental health workers to manage epilepsy. “We are trying to integrate and ensure epilepsy is managed by everyone (health workers),” Dr. Mukiza said. 

“However, there will be need for Continuing Medical Education (CME) for the health workers to ensure their competencies are maintained and improved. 

“Introduce and teach them about something they manage continuously. Epilepsy has not been in those learning sessions we want to have it there on a routine basis. 

“The recommendations are achievable, even though they may need some policy changes,” he said. 

In terms of increasing funding to purchase adequate AEDs, Dr Mukiza said there is need to improve data collection at health facilities. 

“We need to quantify our actual needs. The reforms are with reach but need a little more work so that the gatekeepers handling epilepsy have the actual backing to implement the changes. They are doable.” 

Dr Kuteesa says there is also need to conduct more sensitization of the public to understand epilepsy. 

“We want to spend a bit of time doing more sensitization to the masses to let them know what epilepsy is, that there is treatment, show them where they can get the treatment. 

“Even if the AEDs are not sufficient there have been efforts to make them available. 

We at least have medication in regional referrals, health centers IVs, IIIs, up to II. 

“We have tried to make sure there is some medication thanks to the efforts of the Ministry of Health. We intend that everyone who has epilepsy is on treatment. It is not good that some people are not on treatment. 

“We would want more people involved in sensitisation efforts including Non-governmental Organisations to make sure we are moving toward this direction of helping vulnerable people. 

“We are asking that more advocates come in. It is hard to be the advocate, the clinician and advisor on policy. We need more hands and working together towards reducing the burden of epilepsy in Uganda. We can do it,” Dr Kuteesa said. 

“We need just need to streamline the system of doing this. Put a system of how to report. Part of the problem that has been highlighted in this study is that the reporting is problematic. 

“About four years ago we had medicines such as phenobarbital and phenytoin but they are not budgeted for. 

“At the facilities where they are, they ended up not focusing on them and some of them were returned reasons being scarcity of knowledgeable human resource and infrastructure to manage them. The issue of human resource is very important,” Dr Kuteesa said. 

However, he emphasized that availability of drugs is key. “The study found shortage of epilepsy drugs but it takes consistent availability of drugs to manage epilepsy,” Dr Kuteesa said. 

Moses Okello, the Chairperson ESAU agreed there is need to have adequate AEDs to treat epilepsy. 

But he says to address the drug shortage there is need to have accurate data. “We need a serious data base, there is no accurate data collected in different districts especially for people with epilepsy so that when it comes to procurement and budgeting, they are cared for.” 

Health Ministry Intervention 

The Ministry of Health is already updating essential medicines list and implementing reforms in Human Resource, the Acting Assistant Commissioner Mental Health and Control on Substance Abuse in the Ministry of Health Dr Hafsa Lukwata Sentongo said. 

According to Dr Sentongo neurologists revised the treatment protocol which the Ministry of Health agreed to. “Treatment is changing and has been put in the Uganda Clinical guidance as recommended and revised,” she said. 

“Also improved is the Mental Health Gap Action Programme (mhGAP) on epilepsy that has improved treatment. 

“Also received was the greenlight to train health workers to use the electroencephalogram (EEG) to improve service delivery 

“It is an important thing in order to identify what kind of epilepsy someone has, which ever type it needs to be known and treated correctly. 

“The EEG is available in all regional hospitals but the problem is we have no people who are trained to use the probe,” Dr Sentongo said. 

She commended mental health professionals and psychiatrist for taking the lead in treating people with epilepsy. 

“But we need to borrow good practices such pill count, some people don’t know that the AEDs they are taking are insufficient. 

“This in addition to creating awareness, and finding out what other treatment practices are. For example, what are the herbalists doing? These are conversations needed. 

“We have always said the medicines are not there but how frequently are the medicines not available? Is it once in a while? Annually? Or chronically? 

“How many people are sharing that one tin of AED for two months? How much more tins do we need? that can be an indicator for us to know how to plan and cover the gaps,” Dr Sentongo said. 

She disclosed that the Ministry of Health also did a forecasting training for healthcare workers. “This was a missing link the healthcare workers do not know how much of the medicine will be required in particular months so they learnt to forecast. 

“We have revised the Uganda Clinical Guidelines to provide better treatment. We provide the medicines, however little we have also opened up for private practice and seeing newer medicines coming in. 

“We are happy neurologist and psychiatrist are able to prescribe these medicines for those who can afford them, reducing on the burden on medicines found in public service, leaving them for those who cannot afford. 

 “The Medicine list was improved. Even the level of care and availability of other vital medicines. All that is needed is to inform people.” Dr Sentongo said. 

She disclosed that they are discussing inclusion of counselors and psychologists in public service as government to care for people with mental health problems including epilepsy. 

“People continue to be stigmatized or stigmatize others due to lack of knowledge (information). 

“People do not understand even the diseases themselves or their condition so they should be educated to understand the illness, informed about the illness, tell them what to expect, what to do, what not to do, so that people just don’t learn about it with time. 

“Also, there are other comorbidities like depression so having this team is important to manage the condition,” she said. 

“We know very well epilepsy is a multisectoral issue it can not only be managed in the ministry of health we need everyone to join hands. 

We should have a multisecotral discussion on issues related to mental health specifically epilepsy,” Dr Sentongo. 

She disclosed that the Ministry of Health got information that there are increasing requests for epilepsy medicines in different parts of the country. 

“There is something happening in the communities many people are getting convulsions but we are not sure whether it's epilepsy because there are no funds to investigate. However, we have seen the numbers are higher than the previous years and that needs to be dealt with,” she said. 

The danger that looms 

For drugs not to be sufficiently available for persons with epilepsy, it has endangered them because when u have the condition, drugs are needed, Sarah Nekesa, the Executive Director Epilepsy Support Association Uganda (ESAU) said. 

She also says the other challenge is in non-qualified personal. “They have contributed to epilepsy becoming a worse chronical disease because once someone has epilepsy and it is mismanaged at a health center life will never be the same again. 

“We have that gap; we know in Uganda there are very few psychiatric doctors. Also, epilepsy is mostly understood by neurologist who are also very few about 12 in total in the country. 

“The treatment and management gap for persons with epilepsy has worsened the condition, some people are given over dosage, some under dosage, others do not even know what to do with the patients when they come to them for care. 

“We have tried to do refresher trainings for the health workers in the places that we work in however the reports and conversations we have with persons with epilepsy is that they get the stigma,” she said. 

“Even when approaching a health facility, they do not know if they are going to be well managed or not, so they resort to get traditional care because they get the attention and care which is not the same when they go to some of the health facilities because they have been mismanaged in many health care places. 

“It has contributed to adherence issues; people fear to come and approach health practitioners for medication or even when they need psychosocial support because this health practitioner has nothing to offer or tell them, or sometimes, they are very rude. 

“They tell us sometimes they prefer a traditional healer who will sit down with the them and discuss these issues but they are derailing them further into problems.” 

"A seizure it not demonic or witchcraft but purely a medical condition supposed to be managed in healthy facilities with qualified health practitioners, and epilepsy cannot be transferred from one person to another even if someone is having a seizure, help the person. 

“We want to see the recommendations from the study implemented soon. We have tried to engage the Ministry of Health and MPs to improve budget allocation to mental health, specifically epilepsy. 

“The faster it is done the better because medication will be there, and personnel to handle the condition trained. If government can do this in the next budget it will help,” 

According to the Epilepsy foundation, missed medicines can trigger seizures in people with both well-controlled and poorly controlled epilepsy. 

Missing doses of medicine can lead to falls, injuries and other problems from seizures and changes in medicine levels. 

Also, status epilepticus a medical emergency said to occur when a seizure lasts too long, or when seizures occur close together and the person doesn't recover between seizures, can happen and lead to death if the seizures aren’t stopped. 

Recently, the World Health Organisation published an epilepsy technical brief, which outlines actions for policymakers and healthcare planners to reduce the burden of epilepsy in countries through finding and prioritising the most effective solutions in a wide range of societal sectors. 

It calls for bringing the disease out of the shadows to provide better information and raise awareness about epilepsy and to strengthen public and private efforts to improve care and reduce the disease’s impact.

Anyone can develop epilepsy. It is advisable to seek immediate medical help if the seizure lasts more than five minutes, if the breathing or consciousness doesn’t return after the seizure stops, if a second seizure follows immediately or if one has a high fever.

It is also a medical emergency if one experiences a seizure for the first time, the seizure occurs in a pregnant woman, a diabetic or if you have injured yourself during the seizure, the seizures continue in spite of the anti-seizure medication.