A group of public and private sector specialists offered their time and skills to epilepsy patients at Groote Schuur Hospital last week, providing pro bono life-changing surgeries aimed at preventing future seizures.
In state hospitals, where there are always resource constraints and high patient loads, it is not uncommon for patients to wait long periods for procedures, particularly if they require elective rather than emergency surgeries.
In response, reports Daily Maverick, some doctors are going above and beyond to help ensure greater equitability in access to care, which is what happened on 21 February, when specialists from the public and private sectors united for the epilepsy drive that provided relief for two patients who had been waiting for surgery for two years.
The Restoring Independence through Surgery for Epilepsy (Rise) initiative aims to provide ring-fenced epilepsy surgery theatre lists at the hospital – for adults with drug-resistant focal epilepsy.
“Epilepsy is the second-most-common neurological condition after stroke, but there’s still all the stigma associated with it… While epilepsy surgery is not an option for everyone, if you carefully select your patients, it really offers them a lot of opportunities… We’re hoping to build momentum, make it sustainable here,” said Dr Aayesha Soni, the specialist adult neurologist and epileptologist who spearheaded the Rise initiative.
The non-profit Gift of the Givers provided funding for the project, which was used to pay the nursing staff, but the specialists in neurology, neurosurgery and anaesthetics from Groote Schuur and the private sector provided their skills pro bono.
The surgery, called an anterior temporal lobectomy, cures epilepsy in up to 85% of the patients who undergo it, according to Dr Sally Röthemeyer, head of the neuro-oncology and functional neurosurgery unit at Groote Schuur Hospital.
“That is huge. That is really fighting odds,” said Röthemeyer, who was the lead neurosurgeon for the procedures on Saturday.
Momentum for change
The Rise initiative is linked to an epilepsy surgery programme started by neurologists Professor Lawrence Tucker and Dr MV Gule at Groote Schuur in 2020. It aimed to create a high-throughput centre for anterior temporal lobectomies for patients with temporal lobe epilepsy, making the hospital the first public health facility in South Africa to offer the procedure to adult patients more regularly.
Soni worked with this team as a neurology registrar before completing her training at the hospital in 2024 and travelling to Canada for a fellowship opportunity focused on epilepsy.
Since 2024, constrained resources in the public health sector have made it increasingly difficult for the Groote Schuur epilepsy surgery programme to provide procedures for eligible patients, leading to a years-long wait for those on the list.
Röthemeyer said the surgeons’ challenges were two-fold:
A high patient load at the hospital, with streams of people coming in every day needing urgent, emergency surgeries; and
The resource constraints from stringent national and provincial budget cuts over the past two years, resulting in operating lists being slashed.
“We have ongoing operating list cuts every week that affect all surgeons, because there’re still budget cuts happening in the background, and because of a shortage of nurses at this hospital.
“But the sick patients are still coming in. Patients with brain tumours, brain cancer, urgent neurosurgery conditions are coming in every day and requiring surgery. So, we’re on the back foot. We’re not proactive, we’re reactive. We are always trying to absorb the work and make a plan to operate when there are no lists.”
This leads to long waits for patients requiring elective surgeries – planned, non-emergency medical procedures.
When Soni returned to South Africa, she landed a post in the private sector, but also took up pro bono work at Groote Schuur and started looking for ways to kickstart the provision of epilepsy surgeries again.
The Heads of surgery, neurosurgery and anaesthetics at the hospital were supportive, but highlighted the challenge of limited theatre lists. Soni’s efforts to co-opt Gift of the Givers and anaesthetists from the private sector allowed the idea of running an additional day of surgeries on a Saturday to take shape.
“It was amazing how everything came together… Within a week actually, Gift of the Givers was on board; the anaesthetists found me,” said Soni.
“In South Africa, if people are willing to always overcome the obstacles, then they make things happen. And that’s also amazing. It’s one of the reasons I came back.”
Parallel streams for patients
The significance of Saturday’s epilepsy surgery initiative was that it created a parallel opportunity for patients who had been sidelined by the constraints in the state system, Röthemeyer said
“There was a fantastic response from medical professionals who could help. My anaesthetic colleagues jumped on this… Nursing was also extremely willing – and this is scrub sisters who are short-staffed and already working hard during the week, but now they’re coming in on a Saturday, during family time, to get this work done. It’s incredible.”
Dr Naeem Kathrada, head of the Gift of the Givers medical team in Cape Town, said the organisation had provided about R20 000 in funding for the project. Since the Covid-19 pandemic, which worsened backlogs for certain medical procedures in government facilities, the NPO has been involved in various efforts to facilitate catch-up surgeries at Groote Schuur Hospital.
“We’ve got an excellent relationship with the hospital because the CEO, the managers and Professor Lydia Cairncross, who is head of surgery, have bought in completely to the project,” said Kathrada.
Both Soni and Röthemeyer expressed their hope that the Rise initiative could be made sustainable beyond the pilot project, with epilepsy surgeries provided to patients in need every few months.
“We could start off about twice a year, so every six months, and then tailor it to need and capacity. It’s a great initiative, it shows goodwill. It achieves a lot for patients who really deserve the surgery, and it continues to create that parallel service space where good services are offered in a stressed system, as well as that parallel teaching and training and super-specialised skill space. I would like it to continue into the future,” said Röthemeyer.
See more from MedicalBrief archives:
Groote Schuur team changes lives with epilepsy surgery
Epilepsy surgery benefits long-term survival – UK study
SA woman specialist is first adult epileptologist in the country