Sham Shad Nalugya and her babies during the interview. PHOTO/ANDREW SSENONO KAGGWA
Sham Shad Naluggya is a bubbly journalist with Bukedde TV and a mother of twins. Last year, though, she almost lost her life while in labour, an incident she blames on the psychological torture she went through when she was misdiagnosed three times.
“In February last year, I started feeling sharp pains in my abdomen. I took painkillers, but the agony persisted for two weeks. That is when I visited a hospital in Kabowa, Kampala, and after a raft of tests, the doctor told me my left kidney had been damaged by an infection. He put me on medication immediately,” she says.
The mother of twins says she cried the whole night wondering how she was going to navigate the treatment for kidney failure.
“My partner tried to console me, saying his father had died of kidney failure and I did not have the symptoms. But, I believed the doctor and was convinced I was sick. So, I started taking the medication. After two weeks, I still had stomach pains. I informed the doctor, who told me to continue taking the medicine. The pain would go away,” she says.
On her partner’s insistence, Naluggya visited a Chinese hospital in Naguru, where she was tested again and informed that her kidneys were damaged. This time, the medication they gave her cost Shs1m.
“My partner advised me to go to Mulago National Referral Hospital. I went and after the tests, the doctor said there were no signs of kidney failure. However, he diagnosed me with gastric ulcers and prescribed medication worth Shs150,000. I bought this medication at a pharmacy outside the hospital and began taking it immediately,” she says
Three weeks later, there was no change in her situation. If anything, she was ill and now hated the smell of medication.
“In April, my aunt took me to a clinic and asked the doctor to perform a pregnancy test. The test came out positive. I was two and a half months pregnant with the twins, yet all along I thought I was treating kidney failure and later, non-existent gastric ulcers,” she reminisces.
A growing concern
Cases of incorrect diagnosis, delayed diagnosis, or failure to diagnose medical conditions that result in patient injury, are on the rise today. Misdiagnosis not only jeopardises the well-being of individuals but also raises pressing questions about patient rights and the overall integrity of the healthcare system.
Dr Martin Ssendyona, the acting commissioner of the Standards, Compliance, Accreditation and Patient Protection department at the Ministry of Health, lays the blame on the lack of proper medical equipment.
“Misdiagnosis often occurs because of a lack of access to advanced diagnostic tools and technologies. Many rural clinics still rely on basic methods, which cannot offer accurate diagnosis," he says.
Dr Andrew Kazibwe, the head of medical services at The Aids Support Organisation (TASO) Entebbe, says arriving at a medical diagnosis is a complex process that requires history taking, physical examination and investigations (laboratory, radiology).
“The competence of a medical worker to interpret what they gather from those three steps depends on their level of training, experience, patient characteristics and working environment. Regarding history taking, both the patient and clinician need to be open with each other and have adequate time for the interaction,” he says.
Dr Kazibwe adds that if the patient withholds some information from the clinician, as usually happens, the latter is bound to make a wrong diagnosis.
“Consider a 16-year-old female who is engaging in unprotected sex, and comes to the hospital with complaints of vomiting every morning for three days. If this patient lies to the doctor about her sexual history, the doctor may misdiagnose the cause of the patient's symptoms,” he reasons.
For the physical examination, the setting needs to be appropriate so that the patient is comfortable with exposing parts of their body. For investigations, the medical worker needs tools, and the skill to use them effectively. These tools include weighing scales, blood pressure machines, stethoscopes, ophthalmoscopes, and a fetoscope, among others.
“A physical exam is usually guided by findings from history taking. So, an error in history taking may lead to an error in the physical examination. The investigations are highly dependent on the level of facility. Not all tests can be done at all sites. Some equipment is so expensive to acquire and maintain that few facilities in the country have them,” Dr Kazibwe says.
With the constant changing of the human body, what could have been a correct diagnosis a day before, can turn into a wrong diagnosis the next day.
“For instance, an uncomplicated urinary tract infection yesterday could become Reiter's syndrome tomorrow. Therefore, to assure proper diagnosis of medical conditions, it is important that medical personnel are properly trained, licensed, supervised and equipped,” Dr Kazibwe adds.
He calls for a functional referral system so that lower-level healthcare workers can link patients to specialist care when required.
Dr Cissy Kityo Mutuluuza, a public health specialist at the Joint Clinical Research Centre (JCRC), says in Uganda, one of the most misdiagnosed diseases is malaria.
“Malaria is commonly mistaken for common viral infections because it is highly prevalent and shares the same symptoms such as fever, chills, and fatigue. Also, tuberculosis (TB) can be confused with other respiratory infections or chronic illnesses, leading to delays in accurate diagnosis. Rheumatic fever can be misdiagnosed as other febrile or rheumatologic conditions due to its diverse symptoms,” she says.
Early symptoms of HIV can be non-specific or mimic other conditions, leading to misdiagnosis or delays in testing. In some cases, patients may present with opportunistic infections before the disease is diagnosed. Typhoid often presents with symptoms such as fever, abdominal pain, and gastrointestinal issues, which can overlap with other infectious diseases, leading to misdiagnosis.
Leprosy, endometriosis, cancers, autoimmune and rare diseases are many times misdiagnosed.
Impact on patients
Because of her trauma during the two months, she was taking medication for diseases she did not have, Naluggya hated the smell of medicine.
“I did not attend any antenatal clinic for the duration of my pregnancy because I hated the sight of hospitals, doctors and nurses. Towards my due date, I felt my blood pressure rising but I did not go to hospital. It was only when I felt it was too high that I visited a clinic. After the test, the doctor did not communicate the results to me. He just referred me to Kawempe Hospital, advising that I should go there immediately,” she says.
Naluggya only went to the hospital after hours of a friend, who is a doctor, cajoling her after reading her results. She had preeclampsia, a serious blood pressure condition.
“Those misdiagnoses tortured me. I did not want to go to the hospital. I did not even take the iron supplements that pregnant women are supposed to take. I had a premature delivery through caesarean section,” she says.
The ramifications of misdiagnosis are profound. For patients, it can mean unnecessary treatments, delays in receiving the correct care and worsening of their condition.
For instance, a patient initially misdiagnosed with malaria might continue to suffer from a more serious illness such as typhoid or tuberculosis, which could lead to severe complications or even death.
Fifteen-year-old Alexa Namakula was misdiagnosed with dermatitis. Her mother, Mary Nakimbugwe, a resident of Kigoma in Wakiso District, took her to several hospitals, acquiring a load of creams and ointment to help clear the bumpy and itchy skin.
“We applied the creams and ointments as directed by the health workers, but her condition just worsened. I gave up on her until one day, I met a woman who referred me to a doctor. The doctor diagnosed Lupus disease that needed immediate medical attention because it had started affecting the functioning of my daughter’s heart,” she says.
Lupus is an autoimmune disease in which one’s immune system attacks its tissues and organs.
Remedies
Recognising the gravity of the situation, various organisations and government bodies are working to improve diagnostic accuracy. The Ministry of Health is collaborating with international partners to enhance training programmes for healthcare professionals and to improve the infrastructure in rural clinics.
“Initiatives such as telemedicine programmes are also being championed to bridge the gap between remote areas and specialist care. By using digital technology, patients in underserved regions can consult with specialists without having to travel long distances,” Dr Kityo says.
In addition, non-governmental organisations such as Médecins Sans Frontières are providing mobile clinics equipped with basic diagnostic tools to reach remote communities. These efforts are helping address some of the immediate needs but face challenges related to funding and sustainability. Public education campaigns can help raise awareness about patient rights and encourage individuals to seek timely and accurate medical care.
“It is important that patients or their caretakers get a second opinion to confirm a diagnosis. Have a good relationship with the doctor and make frequent visits to the health centre. This will enable your doctor to notice any changes in your health even when you do not tell him or her,” Dr Ssendyona advises.
He also calls on doctors to keep patients’ records, saying a patient has the right to request an exact photocopy of the medical records because they are not to be kept by the doctor or employer.
Why keep records?
“Ethically, the records can save a doctor in the case of a misdiagnosis that caused harm. He must defend himself with written notes about the patient and why he chose a particular treatment option. The misdiagnosed patient also has the right to seek redress through the Uganda Medical and Dental Practitioners’ Council, Uganda Healthcare Federation, Allied Health Professionals Council, Uganda Nurses and Midwifery Council or the court,” he says.
He adds that the responsibility of a doctor stops at the prescription. If the patient did not take the medicine as instructed, they are to blame. There are tendencies of some private healthcare institutions to give care that may not be required by the patient to milk money out of them.
“There are standards that these institutions must uphold. According to the Patient’s Charter, patients have the right to transparency in fees, access to their medical records, a referral for a second opinion, the ability to refuse treatment, and a safe and secure environment. If a medical facility is unable to provide the necessary treatment, it must, to the best of its ability, refer the patient to another facility where they can receive appropriate, timely, and quality medical care,” says Dr. Ssendyona.
Uganda's Patient Rights and Responsibilities Charter, 2019 outlines the fundamental rights and responsibilities of patients within the healthcare system.
“In the end, safeguarding patient rights and addressing the misdiagnosis crisis are not just medical imperatives but fundamental ethical responsibilities. By working towards a more transparent and efficient healthcare system, Uganda can hope to honour and protect the rights of its patients, ensuring that their health and well-being are placed at the forefront of medical care,” Dr Kityo says.
Addressing misdiagnosis requires a multifaceted approach. Investments in healthcare infrastructure, improved training for medical professionals, and increased availability of diagnostic tools are crucial. Public awareness and education about the importance of accurate diagnosis can also play a role in reducing misdiagnosis rates.
