On Tuesday 3rd November, the Director of Non-Communicable Diseases at Sierra Leone’s Ministry of Health and Sanitation announced that it is planning to make epilepsy a health priority. The announcement took place at the start of a two-day training workshop for health workers – organised by Medical Assistance Sierra Leone, in collaboration with the Epilepsy Clinic – Connaught Hospital and the Epilepsy Association of Sierra Leone.
For me personally, this was a hugely important moment.
That’s because my daughter is one of the world’s 50 million epilepsy sufferers. It started when she was a tiny, bubbly two-year-old and has dominated her life. I’ve written more about epilepsy than any other subject – every day for 17 years in private emails, letters, diaries and medical forms, amounting to millions upon millions of words.
No government funded treatment for people with epilepsy in Sierra Leone
My daughter’s condition is unusually complex. In the UK, she receives the extensive medical care she needs. If we lived in Sierra Leone, it is unlikely she would still be alive. You see although between 100,000 and 120,000 men, women and children suffer from epilepsy in Sierra Leone, there is no national epilepsy plan. There is no government funded treatment for people with epilepsy, and not enough health professionals have the training to recognise, diagnose and treat the condition.
Instead medical care for people with epilepsy in Sierra Leone is led by a tiny team of dedicated professionals. It is largely funded by charitable donations and medical treatment is only available to 10% of those who so desperately need it.
Enduring traditional treatment
The frustrating thing about this terrible neglect is that, with the right medication and treatment, 70% of epilepsy sufferers could become seizure-free. Instead, figures show that almost three quarters experience alternative/traditional treatment within the community.
The Epilepsy Association of Sierra Leone (EASL) works with communities and schools to increase understanding of epilepsy and encourage people to seek proper treatment. Max Bangura, Director of EASL lists the types of treatment that epilepsy sufferers receive from traditional healers: “Oral concoctions which can be toxic, scarification, intense fumigation which can lead to respiratory problems, charm necklaces, and forms of sexual or physical assault.”
The terrible misconceptions that are part of the problem
A major reason for this failure to seek proper medical treatment is that epilepsy is widely believed to be a curse rather than an illness. Max Bangura says: “Epilepsy is considered to be caused by demonic possession, or witchcraft or to be an atonement for sins of the forefathers.
“People also wrongly believe it is contagious – they think if you step on the spit of someone with epilepsy you could contract the illness. As a result it is shrouded in secrecy and considered to be shameful. Marriages break up, children drop out of school, people leave work or are discriminated against because of the condition. It destroys people’s lives.”
Children with epilepsy are particularly vulnerable and mortality rates are high, due to the condition and associated neglect.
The return of Dr Radcliffe Lisk brought hope
It wasn’t until 2010, when Dr Radcliffe Lisk, a Sierra Leonean-born consultant neurologist working in the UK, took an unpaid sabbatical to set up the country’s first epilepsy clinic, that epilepsy sufferers in Sierra Leone were at last able to receive proper medical care and hope for a better life.
Just two neurologists serving the whole country
With support from the UK charity Medical Assistance Sierra Leone, Dr Lisk has established a network of epilepsy clinics across the country and ensured that hundreds of our health workers have been trained to recognise the condition, carry out emergency treatment and refer complex cases. Dr Lisk was joined last year by Dr Alusine Jalloh – Sierra Leone’s first and only Paediatric Neurologist.
“In 2010 we were able to set up a clinic at Connaught and provide diagnostic services like an EEG. Before that there was no clinical work at all,” Dr Lisk recalls. “From there we gradually expanded into the provinces and now we operate an epilepsy clinic in all districts. We make sure that the clinics are integrated into Ministry of Health facilities. This helps sustainability. In Makeni we work with the Loreto Health Services who have been supporting epilepsy patients with medication for over 30 years.”
Dr Lisk and his team have also formulated epilepsy treatment guidelines for all doctors. These are currently with the pharmacy department and will be issued soon, providing a protocol for the management and guidance of epilepsy in non-specialised health centres.
Training to diagnose and treat epilepsy in children is urgently needed
Although so much has been achieved, there is still so much left to be done.
Dr Jalloh wants to organise training specifically for epilepsy in children. “Children are different from adults,” he explains. “The presentation, diagnosis and treatment of epilepsy in children is different from adults. You cannot consider a child as a small adult. We need to orientate health workers to identify specific childhood problems.”
Whether this training goes ahead or not depends on funding. In fact, all of this vital work for people with epilepsy in Sierra Leone is funded through charitable donations and there is rarely enough to go around.
Dr Lisk tells me that the funding used to provide a small stipend to the community social workers has come to an end. Charitable donations also pay for the anti-epileptic drugs prescribed by the country’s epilepsy clinics, but the price of a key anti-epileptic drug used for patients in Sierra Leone has increased substantially and there are not the funds available to cover it.
A donation could give one more person the chance for a normal life
With the support of Medical Assistance Sierra Leone, Dr Lisk, Dr Jalloh and the rest of the dedicated team have brought hope to thousands of sufferers.
There are still many thousands out there who need support. Epilepsy has devastated far too many lives already in Sierra Leone, a donation to Medical Assistance Sierra Leone could help give one more person a chance of living a normal seizure-free life.
To donate, please follow the link below: