Chapter Name: South African Chapter of the ILAE
Report By: Dr. Rajeshree Govender

Publications:

Nil

Summary of Activities:

The year 2020 ended on a high note when Professor Jo Wilmshurst was elected as Regional chair for ILAE-Africa for the 2021-2025 term of office.

We supported the ILAE’s submission to the 73rd World Health Assembly in November 2020 appealing for the development of the Intersectoral Global Action Plan on Epilepsy and its synergies with other neurological disorders by submitting a letter of support to the South African minister of health and the WHA.

Jo and Gail have joined a National Epilepsy Task Force with aims to address the lack of availability of certain essential drugs and the treatment gap, national health care plans for epilepsy management and the training and education of health care workers and educating the public in awareness of epilepsy.

An exco meeting was held at the NASA congress in March 2020 which was the first to be held in many years. Plans were made for meetings to be held in 2020/2021 and we discussed the possibility of a bid for a future ILAE congress in South Africa. We discussed the growing of our ILAE chapter with increased membership coming from adult neurologists and neurophysiologists and uniting different groups

Paediatric Epilepsy Training (PET) courses:

A number of Paediatric Epilepsy Training 1 (PET 1) courses were held throughout the country. The PET course is an initiative of the British Paediatric Neurology Association (BPNA). Courses held in South Africa that were organised by the SA faculty:

• PET 1 Course - Pretoria-Dr Elsa Lubbe was the faculty chair and there were 38 attendees.
• PET 1 Course- Cape Town-Dr Sharika Raga was the faculty lead and there were 32 attendees.
• PET 1 Course- Bloemfontein- Dr Elmarie van Rensburg was the faculty lead and there were 26 attendees

International PET courses organised by SA Faculty:

• Namibia: This course was chaired by Gail Scher and there were 17 attendees. ILAE supported the training of doctors from Zambia
• Mauritius: A very successful meeting organised by the South African faculty was held in Mauritius for the first time in 2020. This meeting was held on 6-7 March 2020. Gail Scher was the faculty lead and there were 35 attendees.

Other activities:

The Paediatric Neurology and Developmental Association (PANDA)- SA is a national body of paediatric neurologists/ developmentalists and other health care workers involved in the care of children with neurological and developmental problems. Activities held by PANDA in support of epilepsy training/ teaching included:

1. PANDA Weekend November 2019- Cape Town. The annual PANDA weekend took place at the Sports Science Institute. The focus was on Paediatric Strokes, however many aspects of paediatric epilepsy were discussed
2. In line with the move toward virtual meetings PANDA has also started monthly Webinars presented by trainees in Neurology/ Neurodevelopment. These meetings also cover epilepsy topics.
3. Jo and Gail ran an educational webinar aimed at Paediatricians and general practitioners on epilepsy and paroxysmal non-epileptic events. This was interactive with enthusiastic audience participation and Jo’s videos and teaching was a huge success.

Challenges:

SARS COVID 19 pandemic
The COVID 19 pandemic has further impacted access to care. Patients are defaulting appointments due to the fear of going to a health facility. The majority of our patients do not have access to technology that will facilitate teleconsults as they live in rural areas with no internet access.

The pandemic has also resulted in shortages of medications across the country due to international supply issues. Lamotrigine is an example.
Specialist services such as EEG clinics, refractory epilepsy clinics and epilepsy surgery programs have been put on hold during the past year either because of lockdown restrictions or the redirecting of services during the pandemic.

Medication
We have limited and erratic access to anti-seizure medications especially in the public sector. There are frequent shortages of drugs that are available. Epilepsy surgery as an option for treatment is limited to a few centers due to lack of skills and resources.

Chronically – long-term challenges (e.g. access to EEG, skilled clinicians, cost of interventions and medications).

Investigations:
There are few specialist centers that are dedicated to management of epilepsy. Diagnostic investigations such as EEGs, video-EEG telemetry, neuro-imaging, genetic testing and metabolic investigations have limited availability nationwide. This impairs diagnosis in many patients undiagnosed or hampers appropriate and directed therapy.

Management:
There are limited number of medical personnel trained to manage epilepsy and allied staff to provide the appropriate support or perform required investigations.

Managing Co-morbidities:
There are limited number of educational psychologists, social workers and special needs schools for the many children with co-morbid learning and behavior problems. Many patients are managed in psychiatric departments- further stigmatizing a diagnosis of epilepsy.

Future Plans:

We are working to strengthen ties and hold combined meetings with adult and paediatric neurologists

The webinars hosted by the Paediatric Neurology and Developmental Association will resume on 27 January 2021.

The COVID 19 Pandemic, permitting, a weekend meeting is planned for 20-21 March 2021

Officer Election Date: Jan 2022