From bedside to boardroom, clinicians can be frontline activists in patient advocacy to improve the SA health system.
The Steve Biko Centre for Bioethics and the Wits School of Clinical Medicine’s recently hosted their annual patient advocacy webinar. With a diverse panel of experts, including a whistle-blower, an academic department head, a former healthcare manager, and a lawyer specialising in healthcare. The thought-provoking online seminar delved into the crucial role of advocacy in healthcare and how clinicians can make a significant impact on patient outcomes and health services.
“We live in a time when health systems are becoming increasingly dysfunctional, and as patients and health professionals we are all suffering the consequences of that disintegrated health system,” said facilitator, Prof Haroon Saloojee (Wits School of Clinical Medicine), explaining why the webinar topic – Clinician advocacy for better patient care and improved health services – was so pertinent.
WHY HE CHOSE TO STAND UP
Dr Tim de Maayer became a well-known name when the paediatrician and gastroenterologist exposed the shocking state of children's healthcare at the Rahima Moosa Mother and Child Hospital in an open letter to the administrators published in the Mail & Guardian.
“I've been there 14 years as a consultant, and I've seen things slide every year, every month, and every day, and that's extremely upsetting,” Dr De Maayer said explaining what motivated him to write the open letter.
“Firstly, in terms of the care that we could deliver, about 10 years ago if I wanted a CT scan I would go down and speak to the CT scan people and we'd get a CT scan. We haven't had a CT scanner for most of this year and most of last year, we still don’t have one at this stage.
“We’re constantly running short of supplies,” Dr De Maayer said explaining he’d just scoped three children with varices who needed bands which the hospital didn’t have, even though he’d ordered them in March. “That's the sort of thing we're up against. We ended up treating them with secondary treatment that we shouldn't be having to use in kids that are at risk of bleeding to death.
“So, the letter was not a spur of the moment thing, it's something that we've been discussing at our consultant meetings for years,” he said, detailing how he consulted people before writing the letter. “Overall, the feeling was that I was going to upset some people, they’d rattle their cages and then everything would go quiet again.
“We've been taking things to management for years. I am very grateful to Prof Ashraf Coovadia (chief specialist and head of department of Paediatrics and Child Health at the Rahima Moosa Mother and Child Hospital) for the work that went ahead of it, because in the end, that legally put me on a much better footing in that he and several of the other heads of departments at Raheem Moosa wrote many letters detailing our problems and sent those letters to all the people that needed to know about them. We didn't get a response, but it allows you to say we did try the proper channels to raise our concerns, and nothing happened. Prof Coovadia also put an electronic database in place where people can lodge complaints when there's critical shortages or incidents that happen. All of that has an electronic trail. The CEO at the time and the superintendents, etc, all got copies of those and obviously needless to say, nothing changed.
HAS IT CHANGED ANYTHING?
“I think a little bit,” Dr De Maayer said. “Our CEO eventually got relocated, but I'm sure at some stage she'll be coming back. I think the biggest impact of that has been the Ombuds report, identifying the problematic way that senior officials are appointed in the Gauteng Health Department. In our case, and this is all in the report, it was specifically against the advice of her referees. So even her referees told the hospital not to hire her, but she
“So that's one consequence. The Ombuds Report clearly spells out what we should be looking for in a CEO, and who we should be giving the job to. Whether that's going to change the situation on the ground, I'm not too sure.”
On a positive note, Dr De Maayer said Raheem Moosa Hospital has been excluded from loadshedding, “but when there's an area power failure, our generators still don't manage.” The hospital also got a second borehole following his letter. “So now most of the time we've got water, but unfortunately, when something like the shut down a month ago happened, there's just not enough borehole water going into the reservoir, so we still run dry, and we have no toilets to use on those days.
“So, the CT scanner hasn't changed, the consumables haven't changed, the staffing hasn't changed, we are still not a tertiary hospital. If you look at the list of recommendations from the Health Ombud, very few of them have materialised and I fear that even if they do, we're talking about one hospital where someone spoke up. We know the situation is the same or similar in most Gauteng hospitals, so that certainly hasn't changed and I don't think that will change.
So, was it worth writing the letter?
“I would do it again,” Dr De Maayer said emphatically. “Hopefully it will allow people to do similar things, to stand up, to advocate, and to do whatever it takes to ring the alarm bells. I think as physicians, yes, we’re primarily clinicians, but equally so we are responsible to advocate for our patients and do what we can to improve things, and that surely includes speaking out when human rights are trampled on.
WHAT SHOULD PEOPLE IN SENIOR POSITIONS BE DOING?
Focussing on the question of what practical things doctors can do in terms of raising issues, without sounding alarmist, without necessarily going to the press, but trying to make some meaningful changes, Dr De Maayer’s boss, Prof Coovadia said: “One of the things that we've implemented at Rahima Moosa is the electronic database where people can lodge major incidences, critical shortages, etc. We have major incidences daily across the province in terms of what things are not working right, whether its electricity, water, supplies, equipment breaking down, lack of drugs, the list goes on.
“My view years ago was to document these things, bring it to management, and keep pushing management on whether they're escalating it up to the central office because, I think that's our responsibility, that's our role, and that's exactly what we did. But beyond just reporting, we then as heads of department started writing reports of what we were experiencing and sending it to managers. Essentially to document the real inadequacies of our system and not just report on it, but also propose solutions. Some of those are straightforward, you need to fix procurement, you need to fix infrastructure, you need to hire more staff where you can, etc, and call for meetings.
“I think the frustration that many of us face today is the nature of the engagement with our seniors at the provincial offices. There just seems to be no sense of accountability to clinicians, to the senior staff in hospitals, whether it's doctors, nurses, social workers, etc, to say we hear your frustrations, and this is what we are doing about it.”
Prof Coovadia explained that when there's a problem at a hospital, typically what happens is some senior politician comes to the hospital, does a walkabout, feels like they've got the solutions to the problems and then tells the hospital managers like the CEOs what to do. “But very little or no engagement with senior clinicians who've been in the services for decades to find out what is happening on the ground and what could work, sadly to the detriment of all of us. That lack of engagement is at the root of our problems in this province.”
WHAT SHOULD UNIVERSITIES DO?
“We’ve got leverage, said Prof Coovadia, “this is a province that has several teaching hospitals, several thousand joint staff, and we need to keep reminding the Gauteng Department of Health that these staff do not only belong to the Gauteng Department of Health, but are jointly employed and are responsible and accountable to the university. The university and the province must run these teaching institutions together. One body alone cannot do it.
“Too often the university has been quiet about these things and not stood up as they should about the decay and the degeneration of all our public hospitals, not just the teaching hospitals, and that's a disappointment. I would like to see the university play a much bigger role in standing up to protect our institutions.
“The only other thing I'll say is that I also feel the National Department of Health are not playing their part. They’re witnessing what's happening at Gauteng Health and unfortunately are not intervening at a rate that they should,” Prof Coovadia concluded.
LESSONS FROM THE PAST
Chief operating officer at Wits Health Consortium, Sagie Pillay has served many roles before including that of CEO of the Charlotte Maxeke Johannesburg Hospital. “There are some important lessons that come out of our work with HIV in the early days and how clinicians took the lead to start establishing sites for patients to get access to care. Despite what was happening around us, we found ways in which both managers and clinicians could work together to set some of these up programmes, obviously together with support from all leadership from organisations like RAP (Resource Access Programme), Section 29, TAC (Treatment Action Campaign), and civil society in general.
Describing the current environment as troubling, Pillay said: “No one seems to want to listen anymore. I'm not getting the sense that current teams are in fact engaging clinicians in a way that they could in fact develop realistic budgets, and then make compelling cases for the sort of budgets that are needed.
Recalling the robust discussions that took place between the different parties at the Truth Market Inquiry (TMI) when they wanted to reduce support for the NGOs that were functioning the TMI, Pillay remarked that, “often, people like me and others didn't quite understand where things fitted in. So, the first issue is working together, and I think that even in the current crisis, it is possible for clinical heads and clinicians to work together with hospital executives to ensure that we can develop a budget. But this won’t happen until we bring clinicians directly into the planning process. And it's not going to happen if chief executives and their clinical teams are sitting in offices far away from what happens at a clinical level.
Pillay expressed that he didn’t believe there was currently a shortage of money, but rather a difficultly with fraud and corruption. “As a former chief executive and currently trying to work with the faculty to support the province, and the teaching hospitals in particular, to optimise their budgets, we can't ask for more money until we have a clear sense of what's happening with the current funding that's available. Management is a collective responsibility and should never be a top-down approach.
But he expressed hope as he believes the upcoming elections offer an opportunity for some of big changes to happen.
HEALTH ADVOCACY AND SUCCESSFUL COLLABORATIONS
“There's a lot to be disheartened about at the moment, particularly in the province of Gauteng but across the country really,” said health rights lawyer, Sasha Stevenson (executive director of Section 27). “But health advocacy really has made a difference in SA too and has led to lasting impacts.”
PATIENT ADVOCACY IS CRUCIAL, BUT WHAT ARE YOUR RIGHTS AS A CLINICIAN?
Highlighting that patient advocacy by clinicians together with civil society and patients is one of the things that really can and has made a difference, Stevenson stressed that there is constitutional permission for patient advocacy.
“Sections nine, seven, 16, and 19 of The Constitution say variously, that the state is obliged to respect, protect, promote, and fulfil the rights in the Bill of Rights. So, it places that obligation directly on the State and requires that those working for the State are in compliance with that.
“There's the right to freedom of expression, which of course also applies to healthcare workers. And importantly, there's also a political right to campaign for a cause. And that's not just to attend a political rally, but it's to advocate for a cause that's important to you. So those are all rights in The Constitution that permit this kind of patient advocacy,” Stevenson explained.
The health system also has provisions and guiding documents that are very permissive of patient advocacy. “The Ethical Rules of Conduct for practitioners registered under the Health Professions Act says that ‘a practitioner shall at all times act in the best interest of their patients and maintain the highest standards of personal conduct and integrity’. If that doesn't require that you advocate for your patients, I don't know what does,” stressed Stevenson.
“The World Medical Association said medical practitioners have an ethical duty and a professional responsibility to act in the best interest of their patients. This duty includes advocating for patients both as a group and as individuals.
“The public service regulations, which are often cited by officials and people not wanting patient advocacy, to say that the regulations prohibit advocacy by clinicians on behalf of their patients. But really what they say is that healthcare workers are expected to raise problems first with their immediate supervisors, and that they're not to criticise government policy irresponsibly in the public domain. There's a big difference between irresponsible critique of public policy and patient advocacy. So, in that way, the regulations really don't prevent advocacy by clinicians,” Stevenson said.
“And finally, of course, there's the Code of Conduct for the public service, which says that an employee in the course of his or her official duties shall report to the appropriate authorities any fraud, corruption, nepotism, maladministration, or other act, which constitutes an offense, or which is prejudicial to the public interest. “So again, there's this impetus, this obligation to speak out,” said Stevenson. However, Stevenson acknowledged that it's often hard to do and healthcare workers face very real concerns with many healthcare workers having bad experiences. “People do face real risks when they try and advocate on behalf of their patients. So, we have this balancing act.
“In law there is some protection, it's not ideal, it's not great protection, but it does exist, and comes in the form of the Protected Disclosures Act.
“The Protected Disclosures Act protects any employee, contractor, or intern who speaks up against criminal acts or against failure to comply with legal obligations, dangers to health and safety, and discrimination. It also protects you if you speak up about somebody trying to hide any of these kinds of rights violations.”
Meant to protect against occupational detriments, the Protected Disclosures Act is about employees and employers and the relationship between the two. “It's supposed to protect you against things like being fired, being suspended, being demoted, or being otherwise disadvantaged. It's very broad wording, so anything that can disadvantage you in your work environment you should be protected against if you're disclosing criminal acts or failure to comply with legal obligations, etc.
“Any provision of a contract of employment that’s contrary to the Protected Disclosures Act is invalid,” said Stevenson. “You can't have a contract of employment that says you're not allowed to speak up, that in itself is invalid.
While the Protected Disclosures Act sets up a process that's meant to try and encourage disclosure within the system before going outside of the system, Stevenson explained that there are provisions for if you're unable to do so or fear the consequences.
“The second step is disclosure to a legal advisor. So, you're allowed to go to a lawyer,” said Stevenson. “The third step is disclosure to a regulatory or independent body that is specifically allowed and provided for.
“And the fourth is general protected disclosures. That's to the outside world, but it includes the public protector or the Human Rights Commission, it includes the media, or organisations like Section 27 or advocacy organisations. Those disclosures are protected where the impropriety is exceptionally serious.
Where you’ve already disclosed to your employer, but there's been no action taken within a reasonable period, where you have reason to believe that evidence will be concealed, or where you have reason to believe that you'll be subjected to an occupational detriment.
“Really importantly, the Protected Disclosures Act allows you to disclose outside of the employer-employee situation,” explained Stevenson, “which is what we've seen from many people.”
HOW TO PROTECT YOURSELF
According to Stevenson, safeguarding yourself during disclosures, patient advocacy, or speaking out – especially externally – involves two key steps.
Firstly, demonstrate that you've raised the concern internally. Secondly, unite with fellow healthcare workers and patients. This unity offers personal protection and showcases both the issue's scale and your system support.
Outside the system, securing ample assistance is crucial. Stevenson highlighted the value of civil society support and collaborating with patient groups. Many willing organisations are eager to collaborate with healthcare advocates.
“Although they are far from perfect, there are legal protections for healthcare workers who speak out. But there are also allies in the system and outside of the system to provide support for healthcare workers that want to advocate for patients, to provide that bolstering,” Stevenson concluded.