The first clinical epilepsy service in Sierra Leone
In February 2010, Medical Assistance Sierra Leone and Consultant Neurologist Dr Lisk of Basildon Hospital with the Epilepsy Association of Sierra Leone established the first functioning clinical epilepsy service in Sierra Leone. There was no such facility in the country. A network of sixteen clinics are now established across the country. Over 5,000 people are now registered and receiving treatment for epilepsy through this initiative, and MASL is providing three of the four anti-epileptic drugs used in this programme. A national education and awareness-raising programme brings forward patients for treatment and enables the provision of support and advice through an Epilepsy Support Worker based in each district of the country.
Consultant Neurologist Dr Lisk carries out an EEG on a patient at the Connaught Hospital, Freetown
An ambitious training programme led by Dr Lisk and the Epilepsy Association of Sierra Leone is underway, involving hundreds of health workers in government hospitals and clinics across the country. This training programme will enable frontline health workers to diagnose and treat epilepsy within the community. More complex cases will be referred to Freetown where the National Epilepsy Hub led by Dr Lisk will carry out further tests with the EEG machine and offer a range of treatment options. The project’s partnership with Basildon & Thurrock NHS Trust enables health professionals from Sierra Leone to spend time with a UK epilepsy service, observing clinical practice and participating in training. Nurses and doctors from Basildon Hospital also visit the project, learning from colleagues in Sierra Leone.
Epilepsy rates are high in Sierra Leone due to birth trauma, meningitis & malaria; local studies suggest rates as high as 2%, equating to as many as 120,000 people. There is still little understanding of epilepsy, especially in rural areas: it is rarely diagnosed, medication is scarce and sufferers often face devastating social exclusion, with profound educational and livelihood consequences, contributing significantly to their poverty. Children with epilepsy are extremely vulnerable; mortality rates are high, due to the condition and associated neglect.
Misunderstandings about the condition, how it is caused and how it may be treated often leads to discrimination. People very often experience isolation and exclusion from their families and their communities (click here for an article in the journal Epilepsy Professional by Sarah Snow and Dr Lisk on establishing the Freetown clinic). A key component of this initiative is awareness-raising, aimed at promoting the fact that epilepsy is a medical condition and help is available for all.
Burns from open fires are common amongst patients attending the epilepsy clinic. Women are particularly badly affected because of their household responsibilities.
With the right type and dosage of anti-epileptic medication, about 70% of people with epilepsy can have their seizures completely controlled. We have numerous examples from the clinics of patients in their thirties and forties who have had seven or eight seizures a day all their life – and who are now seizure-free as a result of medication. Treatment is transforming people’s lives: most of those who attend the clinic have never been to school, have no source of income and do not have children. Their lives have been lived predominantly in social and economic isolation. Many patients presenting at the clinics have extensive burns and project partner the Epilepsy Association of Sierra Leone (EASL) reports that large numbers of its membership have sustained injury through an epileptic seizure, with burns from open cooking fires being the greatest danger.
A child sleeps on the floor of the EASL clinic after experiencing a prolonged seizure. This patient has severe epilepsy and has around 15-20 seizures a day. This was the family’s first visit to a clinic.
We are however reaching just 5% of those who require treatment. Detailed data collection at the epilepsy clinics (Jalloh, Lisk et al, 2011) show the urgent need for increased clinical support, alongside effective awareness-raising. The average person waits 6.5 years from their first epileptic seizure before seeking medical attention. A total of 48% of school age children stopped attending school due to their epilepsy. Over half (54%) believed that epilepsy was caused by demons or bad spirits. As well as causing dangerous delays to treatment, such beliefs can lead to harmful alternative treatments and depression and associated mental health problems for those affected.
Our aim is for everyone in Sierra Leone to have access to the anti-epileptic medication that they require.
There is an urgent need to maintain and expand the programme, including our commitment to supplying anti-epileptic medication for patients; this range of medication is not available in Sierra Leone and is not being provided by any other organisation.
