By Emiene Erameh
In 2022, Deborah Monari began to experience persistent and severe headaches and being a health worker, her first port of call was a hospital in her country, Kenya. She went on to undergo several rounds of misdiagnosis after visiting over 8 hospitals and in spite of the consultations, her situation kept getting worse. This forced her to seek a different opinion outside Kenya and she traveled to India where she was properly diagnosed with a brain tumor.
She was scheduled for surgery immediately because doctors in India told her the tumor was growing rapidly.
”It is not that they were not qualified, I think they were just negligent. I was betrayed by the doctors and medical professionals who dismissed my symptoms as panic attacks and other unrelated conditions,” she said of the doctors in Kenya, ”because the same imaging which was used to arrive at the accurate diagnosis in India is the same that was used in Kenya.”
Upon recovery and return after her successful treatment, Deborah started the crusade to advocate for the establishment of Patients’ Rights Committees in Kenyan healthcare institutions as a way of addressing the challenge of misdiagnosis and malpractice, negligence and disregard for patients’ rights in the country and also embarked on a massive media campaign to educate Kenyan citizens of their rights as patients.
Her campaign, according to her, a proposal borne out of her experience, is against the backdrop of statistics which show that the Kenya Medical Practitioners and Dentists Council (KMPDC) had received 106 complaints of alleged medical negligence in 2022 – an almost 20% increase in the number of cases reported the previous year. It is also important to note that there are no conclusive statistics on the current state of matters due to underreporting and non-documentation of such instances.
Furthermore, a recent survey in 2024 by Nguvu collective in 27 counties across Kenya indicated that 83 percent of respondents had undergone a form of obstetrics violence which is a direct violation of their rights. 94 percent of these women did not report the incidents.
‘Nguvu’ means power in Swahili and the organisation says they draw their inspiration from the ‘fundamental conviction of the power of a collective of women change leaders to make big long-lasting changes in how things work.’
The World Health Organisation (WHO) defines quality of care in the health sector as “the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with evidence-based professional knowledge.” According to the WHO, there is clear consensus that quality health services should be: effective by providing evidence-based health care services to those who need them; safe by avoiding harm to the people for whom the care is intended; people-centred by providing care that responds to individual preferences, needs and values, within health services that are organised around the needs of people; timely by reducing waiting times and sometimes harmful delays for both those who receive and those who give care.
Statistics by WHO show that one in every 10 patients is harmed in health care. The world health body further noted that ‘patient harm potentially reduces global economic growth by 0.7 per cent, while the indirect cost amounts to trillions of dollars yearly.’
Ms Monari’s experience is a direct anti thesis of the WHO’s standard of quality of care within the health care system where a patient is expected to be treated with dignity and a response to individual needs. The healthcare institution simply failed her and this made her determined in her goal to ensure that patients are treated better.
“It is evident that there is a lack of conclusive statistics on patient complaints following violations of their rights, indicating a critical need for accountability and improved resolution mechanisms. As a healthcare professional, advocate for patient rights, and survivor of dismissal misdiagnosis within Kenyan institutions, I am compelled to address the pressing issue of malpractice, negligence, overall disregard patients’ rights,” Ms Monari explained in the document stating why she embarked on the crusade.
IMPACT OF THE CAMPAIGN
From 2022 when she started the campaign, Ms Monari has reached over 8, 000 people online and offline with her campaign. Additional data from the Nguvu collective shows that a successful national online advocacy campaign, garnered support from 6,355 individuals.
She launched a petition to collect signatures in order to galvanize government to act. Ms Monari also takes her advocacy to communities where she volunteers with Benacare Kenya which provides free medical services to underserved communities in Kenya. She has over 10 publications which have been widely read and which educates citizens on their rights as patients and has appeared on many radio stations as part of her campaign. She also engages health workers to avert themselves to the fact that patients have rights and to understand that consequences should exist for violation of those rights.
“In evaluating my progress in this advocacy journey, success is evident in the level of awareness raised and the support received. As well as support from the Cabinet Secretary for Health,’ she said.
HOW HAVE CITIZENS BENEFITED?
Sara Oero a health worker, said the awareness she has got from the campaign has made her more careful and mindful when dealing with patients and she ensures that she constantly double checks in order not to make mistakes considering the fact that she is dealing with human life.
Ms Oero recounts an incidence of malpractice where a doctor left a tourniquet in for too long which led to insufficient blood supply to the arm leading to dead tissue which ultimately led to the amputation of the arm. She stressed that a patients’ rights committee would have been able to investigate that incidence and ensure justice for the patient and also guarantee that health workers know that they can be held to account.
Another health worker, Daisy Claudia, said Ms Monari’s work has inspired and educated many patients to demand accountability when accessing health care services. It has also led to the installation of a hotline number in the facility where she works which enables patients to channel their complaints. According to Ms Claudia, “with the campaign health workers in my facility are more mindful and ensure that patients are part of the process and their opinions are taken into consideration during consultation.”
Ms Maryam Muthoni is a patient who was at the receiving end, and she said her experiences with healthcare providers in Kenya were quite unsatisfactory before Ms Monari started her advocacy.
“Her initiative has empowered me to become informed about my rights as a patient, I’m able to recognise violations and advocate for myself and even family members during healthcare experiences. I also feel like I’m contributing to change by supporting her initiative to push for the establishment of patients’ rights committees in healthcare institutions in Kenya.”
According to Ms Muthoni, ‘the unsatisfactory outcomes before are better managed now as a result of her advocacy.
“I remember feeling helpless when facing inadequate treatment. But through her initiatives, I now feel empowered to advocate for my rights as a patient. I find that I now get better healthcare experiences and outcomes because I participate more in my healthcare plans.”
Abel Omenge agrees with Ms Muthoni that Ms Monari’s advocacy has had a positive impact on how he accesses healthcare as he is more aware of his rights. “The awareness for has been eye opening because I can easily spot negligence or where the healthcare system is going wrong and it has helped me to speak up not only for myself but also speak up for others whenever the healthcare system is failing me, or someone close to me.
“it has a positive impact because it makes people to be aware of what to expect when they are accessing healthcare services considering that many people still have little knowledge about healthcare services, they usually just go and blindly follow instructions. But the advocacy has shed a lot of light on what patients should be getting from health care providers.”
Mr Omenge said another part which is often overlooked which the advocacy has exposed is the area of health insurance which he was not aware of before.
He said as a result, he was kicked out of his mother’s insurance plan and had to have access to healthcare delayed by 2 days which could have resulted in serious complications for him because he was refused treatment even after he had shown the required proof that he was a student. Mr Omenge said because of the knowledge he now has this is not likely to happen to him again.
MAJOR CHALLENGE
While public advocacy has been successful, the bid to have a Patients’ Rights Committee set up has not been as effective.
‘A major challenge is the fact that healthcare in Kenya is decentralised and so I have been meeting different government officials, but they have not been able to ensure that the bill is passed and mandate that health care providers have this committee in their facilities,’ she said
Ms Monari says reaching the key decision makers has been tough, while identifying the particular government official who can ensure that the committees is set up for every healthcare centre in Kenya is taking longer than expected.
This story has been made possible through collaboration with the Nigeria Health Watch with support from the Solutions Journalism Network, a non profit organisation.