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Orthopaedic surgeon Sunny Deo has spent three decades diagnosing and treating knee joint issues. In this blog, Sunny argues that the healthcare community needs to take a more nuanced approach to diagnosis and decision making so that it can provide patients with safer, more appropriate treatment options. He reflects on why medicine prefers simple answers and looks at how this affects patient care. He goes on to explore how better data collection and the use of artificial intelligence (AI) could provide a more accurate picture of complexity and allow treatment options to be better tailored to individual patients’ needs. "To know the patient that has the disease is more important than to know the disease that the patient has." William Osler, father of modern medicine, 1849-1919. Diagnosis is the process of identifying the nature of an illness or other problem by examining the symptoms and objective findings from investigations. In modern medicine, it is a key focal point of the assessment and management of all patients. A huge amount of clinical medicine training is focused on the art and science of obtaining a diagnosis, and this focus continues into medical practice. The ease of getting to a diagnosis ranges from the glaringly obvious, the so-called ‘spot diagnosis’, through to cases that are very difficult to solve. In between these extremes there is a range from delayed to missed to incorrect diagnosis. The aim of doctors over the centuries has been to work out diagnoses from patients’ symptoms, presenting features (clinical signs) and, in the past century or so, from the evidence of clinical investigations. Quite often, symptoms, signs and investigations produce consistent patterns, and it is these patterns that are taught to medical and other healthcare professionals. This is how diagnoses and outcomes are portrayed in television series or films—just think back to the last episode of Casualty or Grey’s Anatomy you watched. It's also how things often appear in internet searches and on websites and social media. Seeking simple answers to complex questions However, the reality is different. When a patient is sitting in front of me, what I hear and observe may not exactly be what the textbooks, evidence or research tells me I should be seeing. But because we are wired and trained to recognise patterns, we tend to look for diagnoses and solutions that fit within the well-worn narrative. What if the pattern doesn’t fit the actual diagnosis? There are classic presentations for nearly every condition, and these are what you tend to find at the start of a Google search or when using NHS Choices. The expectation of typical symptoms sometimes means we ignore what we might see as annoying variance, superfluous detail or the patient embellishing the truth. This discordance then causes tension with a very basic trait of humans: when we’re faced with a difficult problem, we still seek the simplest solution. This is an evolutionary feature hardwired into us to optimise survival chances. It means we often believe there is a truth to be found that will provide us with a definite answer. From this answer we will come to the best, and ideally only, ‘correct’ solution. Patients who don’t fit the set patterns of diagnosis may then run into trouble when we offer them what is considered to be the ideal treatment. This is an important problem in clinical thinking, language and practice. As a medical community, we tend to create oversimplified approaches based on research that looks for binary answers to complex questions. This research evidence may be based on a small, highly selective ‘typical’ patient cohort, but its findings and conclusions are then translated on to the entire population. This approach results in poor patient outcomes and experience for a small but significant proportion of patients. Pathways designed for ideal diagnoses can cause harm to patients Over my 30 years as an orthopaedic surgeon, 15 as a knee specialist, I have seen that the assessment and treatment of any given condition isn't quite as predictable as we would like it to be. While many patients fit the pattern we are expecting, some do not. I would empirically put the proportion at 60:40, but some unpublished research we did a decade ago suggested the proportion of truly ‘typical’ case presentations for a common condition is much lower. For example, we found that in the case of suspected meniscal tear, this diagnosis actually applied to only 33% of patients with a variety of other diagnoses accounting for the rest. It gets worse when large organisations start to lump patients into a category by condition in a ‘one diagnosis fits all’ strategy. When this approach is taken, there are winners and losers. The winners are those patients whose condition very closely matches the classic presentation of a given condition in isolation. Let’s take the example of knee osteoarthritis—patients with the ‘right type’ of symptoms, physical signs and x-ray changes are generally more likely to do well. Their recovery is more likely to sit within the knowledge base of treating the condition that has evolved over the past half-century. In contrast, patients whose symptoms and test results fall outside of this category may be less likely to do well or recover in the predicted timeframe. This also applies to patients with additional diagnoses or conditions, often termed comorbidities, which may interact, usually in a bad way, with the condition at hand. Failure to consider other diagnoses, either by over-focus on one condition causing wilful ignorance, inattention or lack of attention, may lead to unexpected poor outcomes from a given treatment. It may also mean that the symptoms from the condition that the patient presents with are worse than expected. This doesn’t mean that they won't gain any benefit from a particular treatment, but the risks and potential outcomes may not be communicated adequately by the patient’s healthcare team, if at all. For example, for patients with painful knee osteoarthritis, the current diagnosis to treatment logic runs like this: Knee osteoarthritis is a painful condition. Total knee replacement surgery is a validated safe procedure with significant improvements in quality of life. Other treatment options do not produce as much positive therapeutic benefit compared to total knee replacement surgery. Therefore, total knee replacement surgery is the only treatment for painful knee osteoarthritis. However, there are patients for whom knee replacement surgery is not a safe or practical option, and these patients may benefit from alternative treatments that are not currently offered as they are seen as providing limited benefit. This may be because the participants in trials undertaken over the years had varying diagnoses, meaning that true comparisons of alternative options may have had additional interacting diagnoses or failed to account for differing severity. Understanding the spectrum of complexity As healthcare professionals, we have a duty to diagnose patients as accurately as possible. In orthopaedics, if treatments go wrong or are poorly undertaken, it may lead to prolonged or permanent pain or disability, and we obviously want to avoid this as much as possible. Incomplete identification and documentation of all relevant symptoms and health conditions can potentially lead to an increased risk of treatment failure and complications. Our priority should be to identify these diagnoses or diagnostic clusters as accurately as possible. I think these are basic principles we need to apply to create better systems and improved care for as many patients as possible. In my view, there are grades of ‘atypical patients’ and I have devoted the past decade to trying to demonstrate this, with surprisingly stiff resistance from peer-reviewed journals and funding organisations. I have tried to move away from lumping all patients into a single category. I have done some research on seemingly straightforward soft tissue problems and osteoarthritis in the knee. My initial analysis suggests that we need to collect more detailed and accurate data, rather than simplifying data into minimum datasets. This is where AI can really come into its own, not as a diagnostic tool initially, but as a powerful aid to unlocking and interpreting some of the diagnostic interactions that create problems for patients. However, the use of AI does need to be undertaken with extreme care and consideration, and this isn’t always happening currently. To offer healthcare that is truly person-centred, we need to look beyond our well-worn simple answers and solutions. By using better data and new machine learning tools to understand the nuances of each person’s condition and how it relates to their wider health, we can offer treatment options that are safer, kinder and more cost-effective. Share your views We would love to hear your views on the issues highlighted in Sunny’s blog Are you a clinician who would like to share your experiences? Do these challenges resonate with you? Or are you a patient who has experienced complications because of poor, missed or inadequate diagnosis? Add your comment below (you will need to be a hub member and signed in) or contact us at [email protected] and we can share your story anonymously. Related content on the hub: Using data to improve decision making and person-centred care in surgery: An interview with Sunny Deo and Matthew Bacon Diagnostic errors and delays: why quality investigations are key

For healthcare to be safe it needs to be accessible. But what does this look like for people with ME (myalgic encephalomyelitis) and Long Covid? This blog from #ThereForME explores the barriers that impact access to NHS care for people with ME and Long Covid, and encourages the patient community to share their experiences. What is ME and why is accessing care difficult? ME (myalgic encephalomyelitis, sometimes referred to as ME/CFS) is a complex, chronic condition affecting multiple body systems.[1] Symptoms include debilitating cognitive dysfunction and post exertional malaise (PEM)—the exacerbation of symptoms following exertion, which can sometimes lead to a long-term deterioration—the cardinal symptom of ME. Patients with ME have one of the worst qualities of life of any disease: lower than various forms of cancer, multiple sclerosis or chronic renal failure.[2] The most severely affected patients are reliant on full-time care, sometimes becoming unable to speak or swallow, and may require hospital care to avoid dehydration and malnutrition. Since 2020 at least two million people in the UK have been affected by Long Covid. Approximately half of those affected meet the criteria for ME (though not all have been formally diagnosed), alongside those who have developed other long-term health issues following Covid infections.[3] For people with ME and Long Covid, accessing healthcare, whether for these or other conditions, can be challenging. PEM means that it can be difficult to receive care without risking a deterioration in symptoms, especially when reasonable adjustments are not made to minimise the exertion involved. A lack of knowledge, misunderstanding and stigma around the conditions exacerbate the issue, sometimes making patients reluctant to seek care and clinicians unlikely to understand the adjustments that are needed. Together, these and other barriers mean that people with ME and Long Covid may avoid, delay or be completely unable to seek the care they need, creating risks for patient safety. Difficulties accessing care at home A 2023 public consultation highlighted failures in the health service that included the accessibility of NHS care for people with ME—particularly for housebound or bedbound patients.[4] This was echoed by a 2024 #ThereForME survey of over 300 people with ME and Long Covid (and their carers).[5] Two-thirds of people responding to our survey said that the NHS had not been there for them when they needed it. The overall accessibility of care was highlighted as a core concern. Housebound patients answering our survey reported struggling to get access to home visits for monitoring and routine screenings or even remote/phone appointments. Patients reported delaying or avoiding seeking care as a result, or in some cases turning to private care as the only option to facilitate routine investigations. Learnings from care for other conditions can show how similar barriers have been addressed—for example, progress in care for people with learning disabilities.[6] Hospital systems and environments People with ME and Long Covid often experience difficulties navigating energy-intensive NHS systems and hospital environments. For many, the process of arranging and receiving medical care may go well beyond their limited energy envelope. This includes challenges like inflexible booking systems, appointments that are changed or cancelled at short notice, long journeys to medical appointments or needing to coordinate with multiple referrals and clinicians. Patients may delay seeking care, even in emergencies, due to the toll that a busy hospital environment is likely to take on their chronic symptoms. Particularly in A&E and inpatient care, busy waiting rooms and hospital wards may exacerbate sensitivity to noise, light and movement. Patients may be unable to sit upright in waiting rooms for long periods of time without their symptoms being exacerbated. While reasonable adjustments are key to accessibility,[7] and the 2021 NICE Guideline for ME/CFS outlines some adjustments that may be needed,[1] knowledge of the Guideline is limited in the NHS and the majority of NHS Trusts and Integrated Care Boards are not implementing it.[8] More widely, limited knowledge about ME, and similarly Long Covid,[9] means that patients don’t receive treatment that is sensitive to their symptoms—and, crucially, that avoids exacerbating them—because clinicians lack basic knowledge. People with ME and Long Covid, who are often particularly vulnerable to infections, may also avoid seeking healthcare due to concerns about acquiring infections. Many people with Long Covid report deterioration after Covid reinfections,[10] as the pandemic continues far from the headlines and with few measures in place to prevent airborne transmission. This may also impact the ability of family carers to access healthcare themselves, fearing acquiring an infection which could set back their loved one’s health. Trauma in healthcare Traumatic experiences in healthcare also play a role. Many patients with ME and Long Covid have experienced feeling dismissed or disbelieved, sometimes discouraging them from seeking care in future. The 2024 #ThereForME survey documented multiple cases of patients who said that, due to such experiences, they would be reluctant to seek NHS care even if experiencing life-threatening symptoms, expressing a sentiment that they would ‘rather die at home’ than seek healthcare in an emergency.[5] ME is significantly more common among women,[11] meaning that experiences of stigma linked to the condition overlap with gendered experiences of healthcare,[12] including how pain among women is routinely dismissed. Sharing your experiences We hope this blog has shone a spotlight on some of the challenges people with ME and Long Covid face when accessing care. If you have ME or Long Covid, or care for someone who does, we’re keen to hear about your experiences: Have there been times where you delayed or were unable to access the care you needed due to these or other challenges? Have you or the person you care for experienced an exacerbation of symptoms due to exertion involved in seeking healthcare? What would make the biggest difference to you to make care more accessible? Do you have any experiences to share where reasonable adjustments were made or a member of staff went out of their way to make it easier for you to access care? We’ll be collating the experiences shared and exploring what can be done about it. You can share your experience by posting in the Comments field below or join our conversation in the Community area of the hub. References NICE. Myalgic encephalomyelitis (or encephalopathy)/chronic794457 fatigue syndrome: diagnosis and management. NICE guideline [NG206], 29 October 2021. Falk Hvidberg M, et al. The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLOS One, 2015; https://doi.org/10.1371/journal.pone.0132421. Dehlia MA, Guthridge MA. The persistence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) after SARS-CoV-2 infection: A systematic review and meta-analysis. J Infection, 2024. Department of Health and Social Care, Department for Education and Department for Work and Pensions. Consultation outcome. Improving the experiences of people with ME/CFS: interim delivery plan, 9 August 2023. ThereForME. Building an NHS that’s there for Long Covid and ME, July 2024. Anderton M. Exploring deep sedation at home to support people with learning disabilities to access medical investigations with minimal distress. Patient Safety Learning, 17 July 2023. Brar P. Diagnostic safety: accessibility and adaptations–a (un)reasonable adjustment? Patient Safety Learning, 19 September 2024. Action for M.E. Patchy, Misunderstood and Overlooked Implementation of the NICE Guideline [NG206] on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome in England Freedom of Information Findings Report, May 2023. Patient Safety Learning. Long Covid: Information gaps and the safety implications. Patient Safety Learning, 7 June 2021. WHO. Knocked back by COVID-19 reinfection – the experience of Abbie, a British nurse living with long COVID. World Health Organization, 30 November 2023. DecodeME. Initial findings from the DecodeME questionnaire data published, 24 August 2023. Anonymous. One hour with a women's health expert and finally I felt seen. Patient Safety Learning, 7 November 2024.