In the complex world of healthcare, a diagnosis is more than just a medical label; it is often the crucial first step toward healing, recovery, or managing a serious illness. Yet, for far too many, this vital step is fraught with delays and inaccuracies, leading to devastating consequences that ripple through lives and strain already overburdened systems.
Imagine the anxiety of waiting for test results, the hope for a clear path forward. Now imagine that path obscured by uncertainty, by symptoms dismissed or mistaken for something less serious. This isn’t a rare occurrence; it’s a pervasive challenge within healthcare today.
When dealing with serious illnesses, particularly cancer, getting a fast, accurate, and timely diagnosis is absolutely imperative. It’s the bedrock upon which the best possible chance of survival rests. Catching cancer at an early stage means less invasive treatment options and a higher probability of successful outcomes.
The statistics underscore this stark reality. Lung cancer, tragically, was the deadliest form of cancer worldwide in 2016, claiming 1.71 million lives. It was also the third most common cancer overall. The difference a timely diagnosis makes is immense; over a third of people diagnosed with lung cancer early survive for five years or more, a stark contrast to the grim statistic of only 5 in 100 for those diagnosed much later on.
This trend isn’t confined to lung cancer alone. The same critical window exists for prostate and breast cancers, two other incredibly common forms of the disease. For prostate cancer, a stage I diagnosis boasts a one-year survival rate of 100%, which unfortunately falls to 85% for a stage IV diagnosis. While 85% might sound hopeful, that 15 – percentage – point difference represents lives and families affected, highlighting the power of early intervention.
The picture is similarly compelling for breast cancer. A stage I diagnosis again sees a 100% one – year survival rate, dropping significantly to 63% for stage IV diagnoses. These figures are not just numbers; they represent the tangible impact that the timing and accuracy of a diagnosis have on a person’s future and their fight against disease.
Despite the critical importance of early detection, current screening methods often fall short. They can be inaccurate and, unfortunately, prone to human error. This is vividly illustrated in breast cancer screening, where routine mammograms lead to around 7 in 100 women being called back for further tests.
From that group called back, about 8 in 1000 will ultimately be diagnosed with cancer. This translates to a false positive rate approaching 90% – a staggering number. While it’s acknowledged that a high rate of false positives is preferable to missing a cancer (false negatives), this alarming figure undoubtedly plunges individuals into one of the most stressful periods of their lives while they anxiously await the results of additional testing.
The situation with lung cancer screenings is much the same. CT scans used for detection have a 36% false positive rate. Biopsies, which are more invasive, still carry a significant false positive rate of 27%. Beyond the immense stress and anxiety inflicted by these misdiagnoses, they also burden the healthcare system, costing millions each year in wasted time, resources, and equipment, further straining an already pressurized system.
Compounding the challenges for lung cancer is the fact that traditional X – rays are frequently inadequate for early detection. This isn’t due to negligence by healthcare providers but rather the inherent limitations of technology that was pioneered in the 19th century. The lack of resolution in these images makes it nearly impossible to spot the tiny cancer nodes that can later develop into serious tumours, missing the crucial window for early diagnosis.
The consequences of false positive screenings are unfortunately twofold: they are expensive for the healthcare system and a significant source of emotional turmoil for patients and their loved ones. Worryingly, research by the American Association for Cancer Research has shown that false positives are commonplace and become even more likely when an individual undergoes multiple screenings over time.
Current cancer screening methods rely heavily on human interpretation and decision – making, whether it’s analyzing blood tests, biopsies, CT scans, or X – rays. False positives, leading to misdiagnosis, can and do occur as a direct result of human error within this process, adding another layer of complexity to the diagnostic journey.
From the perspective of the individual patient and their family, the disruption caused by false positives is immense. While healthcare systems strive for thoroughness, the lengthy diagnostic process itself can breed anxiety, leading people to fear the worst, even if the initial finding is ultimately incorrect. This emotional toll is significant, not to mention the impact inaccurate diagnoses have on the healthcare budget and the potential for delayed or incorrect treatment affecting survival rates.
Tragically, these delays and inaccuracies aren’t just statistical occurrences; they have profound human costs. The story of Jennifer Roscoe is a heartbreaking example. At just 38, this mum died from an aggressive brain tumour, glioblastoma, which was initially mistaken for migraines caused by a sinus infection.
Jennifer’s GP initially prescribed beta blockers for what was believed to be a recurring sinus issue. However, the medication had no effect. Her symptoms escalated, including numbness on her left side, vomiting, and blurred vision, leading to an emergency hospital visit where an MRI finally revealed the tumour.
Despite undergoing surgery, radiotherapy, and chemotherapy, Jennifer passed away. Her husband, David, spoke movingly of his “inspirational” wife, emphasizing her passion for raising awareness about brain tumours and sharing her journey. Their ability to tick off bucket list items in the couple of years following her initial treatment highlights the precious time gained, but the later recurrence underscores the relentless nature of the disease.
Jennifer had expressed frustration over the lack of funding and research for brain tumours, undertaking challenges even while battling the disease to raise funds. David continues this fight, highlighting that brain tumours are indiscriminate and the lack of government funding for research is “shocking.”
Another young life cut short is that of British teenager Jac Sexton. At 19, Jac began experiencing dizziness and slurring his speech, symptoms initially dismissed by a doctor as an ear infection following a bout of glandular fever. It was a devastating misdiagnosis.
Jac was eventually diagnosed with a high – grade glioblastoma on his brain stem, a highly rare and aggressive form of cancer. The location made it impossible to treat it as a regular cancer, requiring an intense course of radiotherapy. Despite a remarkable, unexpected recovery after a medical emergency, the tumour remained and tragically claimed his life.
Jac’s family, including his uncle Rhydian Sexton, spoke of his incredibly positive attitude throughout his treatment, describing him as “Sassy Jac” who touched many lives. They are now determined to share Jac’s story and continue fundraising, remembering his character and fight.
The dangers of misdiagnosis extend beyond cancer. Joe DuPont, a fit 28 – year – old man from California, experienced a terrifying ordeal when doctors at UCLA hospital mistook his sepsis for anxiety and a skin infection and sent him home. Sepsis is an extreme, life – threatening response to infection where the body attacks itself, potentially leading to organ failure and death.
Joe initially noticed red splotches that started oozing. When they didn’t go away, he sought medical help. Despite his alarming symptoms, doctors attributed the rash to anxiety and a skin infection, prescribing antibiotics and steroids. He had mentioned feeling a bit anxious, but didn’t expect it to be central to his diagnosis.
Shortly after returning home, his condition rapidly worsened. He experienced violent leg shaking, intense chest pain, blurred vision, and felt fluid spreading throughout his body. By the time he returned to the emergency room, he was so weak that he could barely walk.
An EKG revealed an erratic heartbeat and fluid buildup around his heart. This was followed by a severe cardiac arrest, with his heart rate plummeting dangerously low. Further tests confirmed he had endocarditis, an inflammation caused by infection reaching the heart, which can lead to heart failure – exactly what he was experiencing.
Joe DuPont is incredibly fortunate to be alive, using his experience as a powerful cautionary tale. He warned on X, “Misdiagnosis can be lethal,” and stressed, “The doctors didn’t follow protocol at all. Big issues.” Sepsis is a major cause of death and hospital readmissions, making Joe’s story a critical reminder of the need for vigilance.
Adding another critical dimension to the issue of misdiagnosis is systemic bias. A growing body of research highlights how “implicit bias”—unconscious prejudices—contributes to disparities in medical treatment. As Linda Blount, president of the Black Women’s Health Imperative, puts it, “We want to think that physicians just view us as a patient, and they’ll treat everyone the same, but they don’t. Their bias absolutely makes its way into the exam room.”
Gender is one of the most pervasive implicit biases in the medical system. Women are more likely to wait longer for a health diagnosis and, worryingly, more likely to be told their symptoms are “all in their heads.” This isn’t just frustrating; it can be lethal.
Estimates suggest that diagnostic errors cause between 40,000 and 80,000 deaths in the US alone each year. For conditions like brain tumours, while diagnosis itself should be relatively straightforward (requiring imaging if symptoms are concerning), delays are common.
A report by the Brain Tumour Charity found that nearly one in three UK patients visited a doctor more than five times before diagnosis, and nearly a quarter weren’t diagnosed for over a year. Women, along with low – income patients, experienced even longer delays, being more likely to wait over 10 months and make more than five doctor visits.
One woman in the report recalled a GP making fun of her for suggesting her headaches could be a brain tumour, recounting being repeatedly given antidepressants and analgesia instead of being taken seriously. Ordering imaging requires a doctor to be sufficiently concerned, and it takes doctors longer to reach this point for women.
The tendency to attribute women’s physical complaints to mental illness, such as anxiety, depression, or stress, has deep roots in the history of ‘hysteria.’ This mythical female disorder, once blamed on a ‘wandering womb,’ has persisted in medicine as the concept that the unconscious mind can ‘produce’ physical symptoms, albeit under different names like somatisation or ‘medically unexplained symptoms.’
This historical concept carries a high risk of misdiagnosis. British psychiatrist Eliot Slater warned in 1965 that labeling symptoms as ‘hysteria’ often closed the door on further investigation when, in fact, an underlying physical cause remained. Follow – up studies on patients diagnosed with ‘hysteria’ in the 1950s revealed that years later, over 60% were found to have organic neurological diseases, including brain tumours and epilepsy, and some had died.
Given this history, it’s unsurprising that women are especially likely to have their symptoms dismissed as psychological. Studies have shown that one characteristic making a patient vulnerable to a psychogenic misdiagnosis is being a woman. While women do have higher rates of mood disorders like depression and anxiety, the difference in prevalence might be partly due to overdiagnosis in women and underdiagnosis in men.
Some studies in the 1990s suggested that a significant percentage, as high as 30 – 50%, of women diagnosed with depression were misdiagnosed. Furthermore, depression and anxiety can themselves be symptoms of other underlying physical diseases that frequently go unrecognized in women. And, ironically, the stress of living with an undiagnosed, untreated illness can absolutely induce depressive reactions in patients.
Once a psychological disorder is noted in a patient’s chart, it can unfortunately increase the likelihood that any future physical symptoms will be automatically dismissed as psychogenic, creating a barrier to effective care. Consider the woman with a history of depression whose worsening abdominal pain was dismissed for three years as menstrual pain, even though she had a family history of colon cancer and later experienced rectal bleeding.
It was only when she insisted on a colonoscopy that stage – three colon cancer was discovered. Just a few months more, and it would have progressed to stage four, becoming incurable. Her story highlights how pre – existing psychological labels can dangerously overshadow physical symptoms.
The challenges can be compounded when other biases intersect. Jackie, a woman of colour, shared her decade – long journey seeking a diagnosis for chronic kidney problems, fevers, fatigue, and severe pain. She saw multiple doctors, was told “there was nothing wrong,” and was prescribed antidepressants based on the assumption that her issues were psychological.
Jackie recounted experiences where doctors were dismissive, telling her she was “just hysterical” or, particularly in emergency rooms, accusing her of “drug seeking.” As a woman of colour, she faced additional layers of bias; there is robust evidence showing that patients of colour, especially black patients in the US, are undertreated for pain.
A meta-analysis found black patients were significantly less likely than white patients to receive pain medication, including opioids. Experts point to false stereotypes about black patients being more likely to abuse painkillers, despite evidence to the contrary. Concerningly, this disparity extends even to children, suggesting deep-seated implicit biases.
A study revealed that some healthcare providers hold false beliefs about biological differences between races, such as believing black skin is thicker, and that those who endorsed such beliefs were more likely to underestimate black patients’ pain and undertreat them accordingly. Jackie’s eventual diagnoses of endometriosis and lupus, years into her struggle, underscore the critical importance of finding healthcare providers who listen and investigate, free from bias.
The greatest danger in having symptoms dismissed as ‘all in your head’ is that doctors may stop looking for any other explanation. This is particularly challenging for patients with rare diseases, who average over seven years to receive a correct diagnosis, visiting numerous doctors and receiving multiple misdiagnoses along the way.
A survey of rare disease patients in Europe showed that those who were initially misdiagnosed experienced longer diagnostic journeys. Critically, receiving a psychological misdiagnosis extended the time to a correct diagnosis by a factor of 2.5 up to 14 times, depending on the disease. Given women’s vulnerability to psychological labels, it’s unsurprising they reported significantly longer delays than men for conditions like Crohn’s disease and Ehlers-Danlos syndrome.
As the authors of the Eurordis report stated, “Being a woman should have no influence on a physician’s clinical ability to diagnose a disease… It is, therefore, difficult to accept that overall women experience much greater delays in diagnosis than men. The more rapid diagnosis of men illustrates that the capacity to do so exists.” The system, it seems, is capable of faster diagnosis, just not always for everyone.
Another area of significant concern involves the increasing role of Physician Associates (PAs) within the healthcare system. While PAs can play a supportive role, the British Medical Association (BMA) has issued strict guidelines urging that PAs be barred from diagnosing patients due to patient safety fears and their training differing significantly from that of a doctor (two years post-graduate training on top of a degree, compared to medical school).
The BMA’s “traffic light system” proposes banning PAs from complex or life-threatening procedures, Mental Health Act assessments, directing prescriptions, being involved in end-of-life paperwork completion (beyond support), discharging patients independently, and being used interchangeably with doctors on rotas. These calls come after several high-profile cases of patient harm and even death following consultations with PAs.
Tragically, Emily Chesterton, 30, died from a blood clot after a PA dismissed her symptoms as anxiety. She believed she had been seen by a GP. Norman Jopling, 79, suffered a serious brain bleed after a PA mistakenly told him his painful headaches were nothing to worry about. His wife accused the NHS of “trying to cut corners” by allowing PAs to perform tasks they aren’t qualified for.
While PAs are currently allowed to take histories, perform exams, analyze tests, and make diagnoses (under supervision), they cannot prescribe drugs or refer for procedures. The government’s plan to significantly increase the number of PAs in the NHS from 3,200 to 10,000 (and Anaesthesia Associates from 180 to 2,000) to plug workforce gaps has raised considerable alarm among critics who fear patient safety is being compromised.
Amidst these challenges, there is also hope and the promise of innovation. Nanoparticle Biomarker Tagging (NBT) technology represents a exciting step forward in diagnosis. This technology offers the potential for quick, accurate, and cheap diagnosis with a huge reduction in false positives compared to older methods.
NBT technology works by analyzing a patient’s breath to detect unique biological markers indicative of specific illnesses, like lung cancer. These distinct compounds are exhaled during normal breathing. By identifying these biomarkers, the technology creates a highly accurate biomarker profile.
This advanced method leads to a lower incidence of false positive or misdiagnosis, offering a more reliable result. Crucially, it allows for diagnosis to take place within approximately 10 minutes at the point of care. Imagine the relief and reduction in anxiety that comes with eliminating the long, agonizing wait for results that is currently so common in cancer detection.
Each form of cancer and illness creates its own distinct biomarkers not typically found in healthy individuals. NBT’s ability to detect and identify these unique compounds in breath opens up a new frontier in non-invasive, rapid, and accurate diagnostics, offering a glimpse into a future where misdiagnosis is far less prevalent and timely intervention becomes the norm.
The stories of lives altered, or tragically cut short, by misdiagnosis serve as a powerful call to action. From the anxiety caused by false positives in cancer screening to the devastating consequences of dismissing serious symptoms as anxiety or stress, often compounded by systemic biases related to gender, race, and socio-economic status, the challenges are multifaceted and deeply ingrained.
The concerns raised about the scope of practice for non-doctor roles further highlight the complexities of ensuring patient safety within a strained healthcare system. Yet, the promise of innovative technologies like NBT reminds us that progress is possible, that more accurate and timely diagnoses are within reach.
Addressing the issue of misdiagnosis requires a comprehensive approach: improving current screening methods, increasing awareness among both patients and providers about the potential for bias, ensuring appropriate training and clear boundaries for all healthcare roles, and investing in and adopting promising new diagnostic technologies. It’s about ensuring that every individual, regardless of who they are or where they seek care, is seen, heard, and accurately guided toward the help they need, ensuring that getting it right the first time becomes the standard, not the exception.
Ultimately, this isn’t just about healthcare policy or technology; it’s about trust, peace of mind, and the fundamental human right to timely and accurate medical care. It’s about preventing needless suffering and death, and building a system where a diagnosis truly lights the path to healing, not leaves individuals lost in the dark.
Related posts:
The emotional impact of false positive cancer diagnosis
Heartbreak as mum dies of brain tumour mistaken for a sinus infection
Doctors told me I had anxiety and sent me home early — I had a deadly condition
