The resignation of renowned breast cancer specialist surgeon Professor Carol-Ann Benn from the Helen Joseph Hospital has fuelled concerns about the loss of expertise for the public health sector amid existing pressures on cancer services in Gauteng. Concerns have also been raised about what some labelled an unconducive workplace culture and worsening working conditions at the hospital.
Some hospital insiders called the environment toxic with patriarchy and petty hierarchies. This, compounded with ongoing operational challenges, is having a dire impact on staff retention and the quality of patient care.
Benn's last day at the clinic at the end of September brought to a close a 17-year-long relationship with the public health facility. Volunteers from the not-for-profit Breast Health Foundation which Benn is a founding director of, have backed her decision and have also ended their services at the hospital.
"The Breast Health Foundation's decision to withdraw services in solidarity with Professor Benn comes after months of trying to address barriers to the provision of quality patient care and a lack of support from senior management," its statement read.
Louise Turner, chief operations officer at the Foundation, says after an initial phone conversation there have been no further discussions on a way forward to restart their services there. The Foundation had five patient navigators and three volunteers based at Helen Joseph Hospital (HJH). Navigators guide patients through their journey from diagnosis to treatment, help to link them to services, and to advance them along long cancer treatment waiting lists. They also offer psycho-social counselling and become a practical support net. Spotlight previously reported on their work here.
MEC @NkomoNomantu has now moved to @HelenJosephHos for an unannounced oversight visit. The MEC is currently doing a walk-about at the Breast Clinic and the Accident and Emergency area #GrowingGautengTogether pic.twitter.com/yO6WxXSqiX
-- Gauteng Health (@GautengHealth) October 17, 2022
'It is only one employee who has resigned'
Responding to the concerns raised, the Gauteng Department of Health, however, says no patients will be affected negatively by the exodus of Benn and the Foundation and that the clinic remains fully operational.
Spokesperson for the department, Kgomotso Mophulane, says, "The Breast Clinic is not closed at Helen Joseph Hospital. It is only one employee who has resigned but the clinic continues to have other specialists who run the clinic."
Mophulane says that the Breast Health Foundation does not have a formal agreement with the department of health and that "existing agreements with other facilities such as Charlotte Maxeke Johannesburg Academic Hospital (CMJAH) continue".
If the shoe doesn't fit
Benn has straddled public and private healthcare throughout her 30-year career and she remains head of the Netcare Breast Care Centre and continues to lecture at Wits University's department of surgery.
"My patients have taught me so much over the years," says Benn. "Leaving Helen Joseph after 17 years has been a struggle. There was harassment and an obstructive workplace culture that made our daily working lives impossible, but I can't spend my time getting into trouble for trying to find solutions. And if my patients have to face so much to survive, then I can survive this too."
Benn says she's "stepping outside to find solutions". She says her next focus is to find ways to reform access for cancer treatment on lower-level medical aid schemes without massive co-payments and her work in the public sector continues. Benn says she is managing her existing Helen Joseph patients at her practice at Milpark Hospital and says she's already had positive advances to set up a "patient-centered unit for equitable care for public patients within the private sector" that will be ready to launch within the next few weeks.
Getting a #cancer diagnosis can be devastating. READ how cancer survivor and cancer patient navigator Ouma Mamatela supports cancer patients in navigating the public healthcare system in @GautengHealth. @SECTION27news @DrMokgethi @HelenJosephHos @Cancer_ZAhttps://t.co/HteWD0K00O
-- Spotlight (@SpotlightNSP) July 20, 2022
"I don't fit the shoe of government but I'm leaving to innovate in other ways because no one should be turned away from a specialist unit because they don't have the money or because they don't live in a catchment area."
According to Helen Joseph Hospital CEO Dr Relebohile Ncha, Benn had raised issues of "challenges she had with her supervisor, which is one of the clinical managers. Unfortunately, these issues were brought forward at the time of her resignation and therefore there was no time to redress [sic] the issues raised directly with her."
Ncha adds that the labour relations department would have dealt with the "workplace relationship challenges". She also says the psychology department will provide counselling for cancer patients in the absence of the Foundation.
According to Ncha, the system in place remains that new patients are seen on a Tuesday for diagnosis and are "booked within a week" for further treatment. Ncha says there are currently between 400 and 550 outpatients and between 20 and 30 patients booked for surgery per month. She also says there are no oncology specialists at Helen Joseph Hospital, as this care is referred to CMJAH.
A long history
According to Turner, the Breast Health Foundation over the years has helped turn the clinic into a hub of excellence. "So much of what is in the clinic we raised money for - from painting the walls, décor, to the chairs and furniture in the counselling rooms."
Turner says they've helped around 200 000 patients to be "navigated" through the maze of cancer diagnosis and treatment at the facility and around 10 000 people who were diagnosed with cancers were supported through their journey of ups and downs of cancer treatment.
But she says it was clear the workplace environment had become increasingly untenable for Benn and also the Foundation's team. According to Turner, Benn was being summoned to meetings constantly from the hospital floor to answer for her decisions and was criticised and undermined for veering off administrative procedures.
"Professor Benn's approach has always been about putting the patient first. She has used her own money to buy things like surgical drains or surgical gloves so that she could do her work. She always made a plan, including squeezing in surgeries and she did accept patients who do not fall into the Helen Joseph catchment area because of their need to access services. But senior management would make her life hell unnecessarily over this," she says.
'a family of survivors'
Patient navigator for the Breast Health Foundation Ouma Mamatela was a patient of Benn in 2016 before she joined the Foundation. She says patients at HJH are now paying the price for "egos and mismanagement".
"It's going to be very, very hard for patients who expect to find the navigators there to hold their hand through everything. We built up a family of survivors. I am still waking up very early on Tuesdays and Thursdays because those were the days I knew I was getting up to serve our patients at Helen Joseph," says Mamatela.
She adds that Benn's out-of-the-box thinking, accessibility to patients, and transparency in the way she worked irked senior male managers and doctors.
"Professor Benn is one person who speaks to everyone. She doesn't make herself untouchable. I want to say to those managers that they need to put their egos aside because it is the patients that need quality care the most who are suffering," she says.
'you can feel that it's different now'
Twenty-six-year-old *Thandiwe was one of Benn's last patients at Helen Joseph. Her mother *Thawe says that she and her daughter have experienced both kindness and professional care from Benn and the Foundation and have also borne the brunt of bureaucratic pettiness and outright bullying from senior clinical management at the hospital.
Thawe asked for their identities to be protected, fearful of being victimised at the hospital.
Thawe tells first how her family's world came to a crashing halt when Thandiwe found a lump in her breast in July this year. Thandiwe, who was living in the North West province at the time, had a biopsy done at the Moses Kotane District Hospital but says she never received her results.
Being unwell she couldn't keep her job and eventually came to Johannesburg to be with her mom. Thawe's employer donated R10 000 towards her daughter's treatment.
"When I asked in the office and googled about where I could get help, the name that kept coming up was Professor Benn's so we decided to use the money to do another biopsy and to see Professor Benn at her private practice in Milpark.
"When we saw the Prof she was so kind and informative. She explained everything and gave us some peace even when she confirmed that Thandiwe was cancer-positive. When it came time to pay, she realised that we didn't have medical aid so she told the receptionist not to charge us anything," says Thawe.
Benn told them to come to her clinic day at Helen Joseph so the next steps of surgery could begin. Benn also advised plastic surgery at the same time as the removal of the cancerous lump would significantly reduce the size of Thandiwe's left breast.
On the clinic day, Thawe says they waited for hours but she adds, "Everyone from the Foundation was friendly and explained what was happening. When it's like that you accept that you have to wait."
But then Thawe was told her daughter would not be admitted for surgery and that her case was being referred to Charlotte Maxeke Johannesburg Academic Hospital instead.
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"Another doctor took Thandiwe off the surgery list and sent a junior doctor to us with the referral letter without any explanation," she says.
At Charlotte Maxeke, she says Thandiwe was sent from department to department and could not get admitted there either. Eventually, a desperate Thawe returned to Helen Joseph to demand an explanation.
"I was taken to see these three men in the clinical manager's office. They showed no empathy - they just didn't care. They just kept saying 'wrong catchment area', that they could not do the plastic surgery at Helen Joseph, and that Benn should never have told us to come to Helen Joseph," she says.
Thawe and Thandiwe stayed in contact with Benn. Mother and daughter kept fighting and eventually took their complaint to hospital CEO Ncha. Only then was Thandiwe's surgery approved.
She says Benn kept her promise to operate on Thandiwe and also made arrangements with a plastic surgeon from Charlotte Maxeke to help with the reconstructive surgery for Thandiwe.
"I cannot find the words to thank Professor Benn for all she did to save my daughter's life," Thawe says.
But she says since Benn and the Foundation's exodus at the end of September, "it's been a mess at Helen Joseph". She accompanied Thandiwe to have a drain removed and her bandages and dressings changed at the beginning of October. "All those ladies in pink that used to help us were gone. All the patients were just sitting without knowing what was happening and no one telling us anything. When we eventually saw a doctor she said she didn't know how to remove the drains. She took some photos of Thandiwe and told us to come back the next day.
"I had to change Thandiwe's bandages myself and tell the nurses how to tape the drain. You can feel that it's different now without Benn and the navigators," she says. Eventually, they were forced to go to Charlotte Maxeke where the plastic surgeon that operated on Thandiwe helped to remove the drain properly.
"It's been hell at HJH - I worry for what will happen to other women who cannot fight like we did," she says.
Dozens of Helen Joseph patients have also since weighed in via social media in support of Benn and the Foundation, sharing their stories and also their deepening worries about what comes next for their treatment.
**Patients needing to get in touch with the Breast Health Foundation can continue to do so via their support line on 0860 283 343.
*Identities withheld.
