What Is Diagnostic Delay?

A diagnostic delay ‘occurs when a patient seeks medical treatment for symptoms, and yet the condition causing those symptoms go undiagnosed for an unreasonable amount of time. Often this may result in the condition worsening into a serious illness or disease. A delayed diagnosis might be the result of certain symptoms being overlooked or dismissed by the physician, or when the physician fails to order follow-up testing to fully evaluate the patient.’[1] This post discusses how my 11-year diagnostic delay for my facial pain has come about from clinicians overlooking clinical evidence and choosing not to act.

Overlooked Evidence

A painful aspect of my quest to find a resolution to my facial pain has been clinicians overlooking clinical evidence that has detected abnormality. There are some conditions that doctors struggle to diagnose due to a lack of unequivocal evidence. Endometriosis and fibromyalgia are two examples of such diseases. In my case, however, there has been a lot of clinical evidence that has pointed to an irrefutable clinical problem. All of the clinical evidence and pathology found points to infection as the likely cause of my facial pain. However, medical professionals have disregarded this evidence. Four infectious disease consultants found clinical signs of infection in blood tests but have taken no action. Dental radiologists detected salivary glandular malfunction and parenchymal damage but have not taken action beyond temporary glandular wash-outs. One NHS Trust and my GP have recently turned a blind eye to an abnormal MRI neck scan.

My medical condition is not ‘atypical facial pain’ or ‘chronic pain.’ Clinicians have detected lots of pathology. There is something that is causing my facial pain. However, if clinicians keep ignoring the clinical evidence, they will never identify an aetiology. Aside from infection or inflammation, what else could cause the following:

• Raised neutrophils, white blood count, ESR and haemoglobin count
• The levitator on my left eyelid to collapse
• Glandular malfunction and parenchymal damage
• Reactive lymph nodes
• Enlarged masseter muscle
• Unexplained abnormality in my buccal fat pad
• I respond to antibiotics, and no other medication?

Referral Tennis

My diagnostic delay has played out via a long game of referral tennis. Clinicians have passed me onto their colleagues instead of dealing with the problem themselves. It’s a Merry Go-round. My GP will refer me to a specialist in secondary care. The consultant sees me. He/she does a scan. He/she will then refer me to their colleague at another hospital. That hospital normally sends it back. They may give me one appointment, but then they close my case. The process starts again. The time scales are ridiculous. I can wait up to four months from the point that the GP refers me to a consultant to when I see a consultant. The time scale is the same when a consultant refers me onto his colleague. Eight months can pass. In those eight months, I am living with worsening pain.

It seems that clinicians think that referring me on to colleagues amounts to ‘action,’ when it actually amounts to delay-in-action. I cite an example; in July 2022, an Ear Nose and Throat consultant did an MRI scan. He wrote to me to tell me that they found an abnormality in my buccal fat pad and that he had sent my case up to a different department at another hospital. That hospital sent it back, telling the referring consultant that the ‘ball is in his court.’ The ball was batted off-pitch. I am not a tennis ball. I am human being. This is a human life not a game.

Apathy

The tone of the referral letters is apathetic. ‘Please will you review this lady, who has a history of unexplained facial pain.’ The next consultant greets me with a furrowed brow. I spend an hour explaining what my symptoms are. He takes notes and does what the preceding consultant did. He refers me on to one of his colleagues.

Diagnostic errors or delays (DEODs) remain an understudied threat to patient safety, occurring in up to 20% of patient-clinician encounters. A DEOD has been defined by the National Academy of Medicine (NAM) as a failure to establish an accurate explanation of the patient’s health problem or to communicate that explanation to the patient and within the health record.⁷ Singh classified DEOD, more recently as “missed opportunities” to make a diagnosis.^8’[2]

Diagnostic Delays in Infectious Diseases

M. Suneja conducted a survey to examine diagnostic delays in six infectious diseases. ‘The objective was to understand the frequency of diagnostic delays commonly seen by infectious disease consultants and to examine contributing factors for these delays.’ [3] The results showed that the main causes of delay when diagnosing an infectious disease were:

• Diagnosis not being considered initially
• The appropriate test not being ordered
• Unusual clinical presentation
• Not consulting an Infectious Disease Consultant early enough.

A Missed Opportunity

I saw the first infectious disease specialist 3 years into my illness. It was in 2016. I saw him at a large NHS teaching hospital in London. He did some blood tests. They showed that my neutrophil count was high. I was also under the care of the ophthalmology team and oral maxillofacial surgeon at the same NHS trust. Ophthalmology diagnosed my left ptosis and told me the levitator had collapsed. The oral maxillofacial surgery team found that my left parotid gland was not functioning properly. They treated my glandular malfunction with regular wash-outs.

This was a perfect opportunity for all three departments to collaborate, examine the collective evidence, and act, but the ophthalmologist discharged me from his care. The oral maxillofacial surgery department did the same and the ID consultant referred me to a chronic fatigue specialist and discharged me from his care. This was insane. ‘Common causes of raised neutrophilia are infection and inflammatory conditions.’ [4] Raised neutrophils, along with a collapsed eyelid levitator and a malfunctioning salivary gland, pointed to an obvious cause of infection or inflammation. This was a missed opportunity. Ophthalmology, oral maxillofacial, and infectious diseases, together, could have sorted this.

A well-functioning interdisciplinary team can facilitate a timely and accurate diagnosis and should be leveraged for this purpose.[5]

 Patient Despair

Having no diagnosis denies the patient access to correct treatment and leaves the patient feeling not believed. This can lead to feelings of intense despair. When a patient has no diagnosis, they fall into the ‘chronic pain’ territory. ‘Live with the pain’ is the cold rhetoric that accompanies this territory. The lack of care and listening from clinicians has been insulting. No one would keep seeing doctors for 11 years if there was nothing wrong. The medical professionals, who I have seen, know that there is something seriously wrong. Instead of saying, ‘Sorry, we have missed something; we will put this right,’ they close ranks and gaslight me instead.

A Qualitative Exploration

Dr Amelia Barwise conducted a study to understand the ‘organisational, clinician, and patient factors that contribute to diagnostic error and delay.’ The data collected was from 4 hospitals in the Midwest and Southeast of the US. The results of the study showed that many factors contribute to diagnostic error and delay. In addition to cognitive biases of clinicians, organisational and system issues were identified, as well as challenges with interpersonal communication and coordination of tasks. ‘We found delay to be a mostly coordination problem of multidisciplinary teams. Both error and delay are influenced by organisational, interactional, and individual factors.’ [6] Some of the findings, regarding causes of diagnosis error and delay were;

• Organizational and System Factors; Availability of diagnostic tests and demands on clinicians and their time. Lapses in communication with patient about their diagnosis. Reliability of radiology services, especially during the information gathering and interpretation phases. Protocol and bureaucracies stood in the way of acting on diagnostic decisions.
• Interpersonal Factors; Poor communication within the same institution were reported, as was inadequate teamwork.
• Individual Clinician Characteristics; Training, knowledge and experience of clinician, as well as ego, were cited. Cognitive biases of clinicians were a factor and clinicians anchoring to one particular diagnosis, and then not able to switch gears, and think differently.
• Patient Characteristics; Language and cultural barriers were influential. Patient complexity and atypical presentation contribute to diagnostic delay. Vulnerable social groups, are likely to experience diagnostic delay.

Communication and Teamwork

Whilst I appreciate that my clinical presentation has been unusual, I am flummoxed why 4 ID consultants have ignored my raised infection markers. I am equally perplexed why the diagnosis of a soft-tissue infection was not considered a diagnosis back in 2013, when the first ophthalmologist, who I saw, said that ‘the clinical signs all point to infection.’ The data that Dr Barwise found in this study is relevant to my case. Below are some remarks that clinicians made about communication and teamwork. I believe that lack of communication between teams and not acting on clinical evidence are the central causes of my 11-year diagnostic delay.

Communication; “the most common thing I’ve experienced as far as there being an error or delay that has caused significant harm to patients is breakdown in communication …the example I think of is our lab error. So, lab will get a result back that says, this patient’s hemoglobin was 2.5, but we didn’t believe it, so we didn’t tell you about it, and we re-ran the sample instead, and oh, … their hemoglobin’s really 2.5. That one, to me, feels like it’s not that uncommon that you get a call back and say, oh we didn’t believe it. [and repeated it several times].” (FG3)

“…communication between different specialties, I think that is also very crucial. If we don’t communicate appropriately, sometimes we miss things.” (FG9)

“…occasionally, this happens, we see a report, and then the report gets changed without notice. And if you discharge patients without re-verifying the report, that’s disastrous.” (FG8)[7]

Conclusion

I am heartbroken by the time that I have lost seeking a diagnosis for my facial pain. My 11-year diagnostic delay has been avoidable. If doctors had worked together across teams and not consistently ignored clinical evidence, in particular abnormal blood tests, then I would have received a diagnosis years ago. Deep-seated politics between consultants has been a critical component in this delay. Medical professionals have been more intent on listening to one another’s opinions instead of listening to me. As I said in Follow the Leader, in order for things to change, there needs to be a paradigm shift. The ‘there is nothing wrong’ paradigm needs to change to a paradigm of curiosity: ‘What could this be?’ I am concerned, however, that when I do finally receive a diagnosis, it will be too late to treat my condition. My fear is that the damage to the soft tissue in my face and around my head is now irreparable.

When a diagnosis is accurate and made in a timely manner, a patient has the best opportunity for a positive health outcome because clinical decision making will be tailored to a correct understanding of the patient’s health problem.[8]

Foot Notes

[1] What Is Delayed Diagnosis? www.grossmanroth.com

[2] Dr A Barwise et al; What Contributes to diagnostic error and delay? A Qualitative Exploration across Diverse Acute Care Settings in the US, June, 2021, National Library of Medicine.

[3] Suneja M et al; Diagnostic Delays in Infectious Diseases, Jan 2022, National Library of Medicine.

[4] George T, MD and Richards-Chabot D, MD; Assessment of Neutrophilia, October, 2021, BMJ Best Practice.

[5] Dr A Barwise et al; What Contributes to Diagnostic Error and Delay? A Qualitative Exploration across Diverse Acute Care Settings in the US, June, 2021, National Library of Medicine.

[6] Same Author and Source, as Footnote 5.

[7] Same Author and Source as Footnote 5 & 6.

[8] Balogh EP, Miller BT, Ball JR; Improving Diagnosis in Health care, December, 2015, National Academies Press, (US).

Photo Credits; Daniele Franchi, J Balla, J Schiemann, Sam Hogati, Oussema Rattazi, Brett Jordan, Eric Mclean, Julia Taubitz and Harman Sandhu on Unsplash. RDNE Stock project, Pixabay and Daniel Reche on Pexels.