Conference Report

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Challenges in the Medical Consultation
Thursday 26 June | Vestry House, London
In partnership with the Guild of Health Writers

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Overview

This conference explored the challenges faced by patients and healthcare professionals in consultations involving Medically Unexplained Symptoms (MUS).

While most consultations go well, MUS can lead to frustration, misdiagnosis, and patient distress. Discussions highlighted the importance of validation, open communication, and interdisciplinary thinking in improving outcomes.

Three key messages emerged:

1. Validate patient symptoms — even when a diagnosis is unknown.

2. Share diagnostic uncertainty — patients value honesty.

3. Recognise consultation barriers — such as unconscious bias and patient/doctor personas.

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Session Highlights

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The Problem of Medically Unexplained Symptoms

Dr Adrian Tookman

Watch the full session here

To view the speakers presentation, please click here:

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Dr Tookman explored the challenges faced by individuals with rare diseases and medically unexplained symptoms (“MUS”) who struggle to access appropriate healthcare and support.

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Key points

• Many rare disease charities will only assist those with a diagnosis, leaving undiagnosed patients without support. There is no overarching body that offers advice on accessing the correct support.

• The healthcare system pushes for diagnoses and works in silos, with limited time and tick-box approaches

• Misdiagnoses of common but poorly understood diseases (e.g., endometriosis, EDS) are frequent.

• The system discourages diagnostic uncertainty and critical reflection.

 

Conclusion

Systemic change is required to promote out-of-the-box thinking with collaboration across specialties, and acceptance of uncertainty to better support overlooked patients. There should be better ways to support patients and signpost them to appropriate resources.

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The Patient Perspective: Challenges in Consultation

Dr Minha Rajput-Ray

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To view the speakers presentation, please click here:

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Dr Rajput-Ray courageously shared her lived experience, as both a patient and clinician, navigating the healthcare system with complex, unexplained symptoms. Her journey underscores the system’s limitations and the need for integrative care.

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Key points

• It is crucial that medical professionals embrace medical uncertainty and avoid siloed thinking

• Clinicians must ask: “Am I truly in a position to guide my patient?”

• If even a highly trained doctor can have such a struggle to navigate the health care system, how can patients succeed

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Conclusion

Dr Rajput-Ray’s story serves as a call to action for medical professionals to listen deeply, think beyond diagnostic labels, and create patient-centred, collaborative models of care.

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Challenges in Diagnosing Rare and Genetic Conditions

Louise Fish

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To view the speakers presentation, please click here:

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Louise Fish highlighted the diagnostic barriers faced by patients with rare and genetic conditions, and what can be done when a diagnosis remains elusive.

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Key Points

• More than one third of those with a rare condition wait more than five years from their first symptom to get a diagnosis.

• Collectively, rare conditions are not rare.

• Only 1 in 20 rare conditions have an approved treatment or medicine to help.

• Diagnosis can help even when there is no clear treatment: it can ensure that there is support available for patients to improve their quality of life.

• Clinicians must remain aware of how much they do not know.

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Conclusion

Diagnosis is important but not always achievable. Care should not stop in its absence: services must be responsive to patient needs regardless. There are many resources available to help patients and clinicians managing rare conditions.

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A Researcher’s View on Medically Unexplained Symptoms

Professor Chris Burton

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Professor Burton urged a fascinating rethink of symptom meaning and management. Research increasingly shows that persistent symptoms are disorders in their own right: they can become their own entities, rather than mere signifiers.

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Key points

• Historical models (e.g. Descartes, Freud) oversimplified mind-body relationships.

• Persistent symptoms may represent bodily changes: inflammation, ANS imbalance, microbiome changes, genetic and epigenetic changes, or altered interoception

• “Medically unexplained” is a limiting term: patients with symptoms may have no detectable disease but still suffer physically.

• Interoception (body’s sense of internal state) plays a key role in persistent symptoms.

• Positive diagnostic criteria reduce the risk of (mis-)attribution by default.

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Conclusion:

Persistent physical symptoms require nuanced respectful approaches that embrace uncertainty and multiple explanatory frameworks. They require “plurality” of thinking (rather than the traditional duality of mind versus body).

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Forgotten Patients: A Journalist’s Perspective

Jo Waters

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To view the speakers presentation, please click here:

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Jo Waters presented a journalist’s insight into the struggles of patients with undiagnosed or poorly understood conditions. Drawing on interviews and case studies, she highlighted the themes of disbelief, delay, and disjointed care.

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Key points

• Patients often experience years of unexplained symptoms (e.g. fatigue, gut issues, palpitations, pain).

• Common patient experiences include:

  • not being believed;

  • feeling their doctor doesn’t listen; and

  • lack of coordination between specialists.

• This has a significant impact: there is an emotional and psychological toll from being dismissed or misdiagnosed; and a frustration from a lack of joined-up care or long waits for answers

• Possible solutions:

  • AI: to help doctors join up the dots; and help patients better prepare for consultations.

  • Longer consultations: especially for patients with unexplained symptoms.

  • Greater consistency: continuity of care.

  • Symptom diaries for patients.

  • Greater support for doctors to admit when they don’t know the cause of a patient’s symptoms.

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Conclusion

Journalists can play a crucial role in raising awareness of patient experiences and helping to drive system-wide change for the medically overlooked.

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Why Consultations Sometimes Go Wrong

Dr Adrian Tookman

Watch the full session here

To view the speakers presentation, please click here:

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Consultations with patients experiencing persistent unexplained symptoms can break down due to biases, personas, gaslighting, and diagnostic doubt.

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Key points

• These patients are often frequent attenders, misdiagnosed, or not given appropriate care.

• Their frustrations may lead to anger, withdrawal from healthcare, and risky self-management.

• Consultations are affected by both patient persona (e.g., angry or silent) and doctor persona (e.g., assertive or dismissive).

• Negative labels used by doctors (e.g. “heartsink”, “catastrophiser”, or “help rejecter”) indicate bias and can damage trust.

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Conclusion

Healthcare professionals must be open to uncertainty and ready to validate patient experiences, even in the absence of clear diagnoses.

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Patient Experiences

Christianne Forrest & Katia Chrysostomou

Watch the full session here

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Christianne and Katia bravely shared their experiences, as well as experiences of their family members, seeking diagnoses for unexplained symptoms, ultimately being diagnosed with Ehlers-Danlos Syndrome (“EDS”).

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They reported patients experiencing the following:

• Being asked why they would want a diagnosis, as there is no treatment for EDS.

• Being dismissed by doctors for not being ill enough.

• Being dismissed by doctors for having “googled” their symptoms.

• Being diagnosed with psychiatric conditions.

• Doctors recording inappropriate points in their clinic letters (e.g. this lady attended clinic having shaved her legs).

• Being uncertain whether appearing knowledgeable about their condition may irritate and alienate doctors.

• Having consultations that don’t lead anywhere, and so either not getting the necessary referrals, or getting unhelpful referrals.

• Seeking diagnoses from private clinicians: thus the NHS loses track of these patients with these unexplained symptoms.

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Conclusion

Doctors should be encouraged to acknowledge diagnostic uncertainty and should have the courage to share this with their patients. Healthcare professionals should be cautious of subtle ways of shutting down patients: reassurance can feel like dismissal. Labelling symptoms as “functional” can prevent further diagnoses.

“Medically Unexplained Symptoms” may be better classified as “Medically Unexplored Symptoms”.

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Medical Gaslighting – A Narrative Review

Dr Steven Walker

Watch the full session here

To view the speakers presentation, please click here:

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Dr Walker presented findings from a narrative review on gaslighting and disbelief in healthcare. Amid this focus, it is important to remember that most consultations do go well.

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Key points

• Medical gaslighting includes minimising, dismissing, or psychologising physical symptoms.

• Commonly affected groups are women, ethnic minorities, neurodiverse individuals, and LGBTQ+ communities.

• Conditions misrepresented included: chronic fatigue, endometriosis, fibromyalgia, long COVID.

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Impacts

• Delayed diagnoses, emotional trauma, poor health outcomes.

• Patients may stop seeking care, feel stigmatised, or be overprescribed antidepressants.

• Practitioners may also suffer, experiencing frustration and disconnection.

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Conclusion

More research is needed but validating patient experience and allowing patients space to speak are critical first steps. Poor communication on the part of all stakeholders is a significant contributor to unsatisfying consultations.

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MUS and Medical Education

Dr Miranda Kronfli

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To view the speakers presentation, please click here:

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Dr Kronfli discussed how the education and training of healthcare professionals (“HCPs”) can evolve to better serve patients with MUS. She advocated for a more inclusive, patient-informed curriculum.

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Salient questions

• What opportunities exist to make sure topics relevant to MUS are included in healthcare professionals' training

• What opportunities exist for people experiencing MUS to be proactively involved in the education of healthcare professionals.

• In what ways can patients be involved- not just as recipients of care, but as partners in the healthcare system.

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Key points

• HCPs regularly encounter patients with symptoms they cannot explain. Their training should prepare them for this.

• Patients bring essential lived experience that can shape medical learning.

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Opportunities

• Use university-based public involvement (PPI) networks.

• Embed ambiguity, communication, and reflective practice in training.

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Conclusion

The patient voice must be integrated into healthcare education to ensure future professionals are prepared to manage MUS with compassion and curiosity.

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Ethics of Consultation in MUS

Chantal Patel

Watch the full session here

To view the speakers presentation, please click here:

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This presentation explored the ethical dimensions of consultations involving patients with MUS, particularly through the lens of epistemic injustice and medical gaslighting.

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Key ethical concepts

• Testimonial injustice: Patients' reports are downgraded due to bias (e.g., gender, race).

• Hermeneutic injustice: Patients lack language or framework to describe their symptoms, and the system fails to accommodate them.
• Medical gaslighting: Patients are made to doubt their own experiences, dismissed or told symptoms are psychological without adequate investigation.​​

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Impact: emotional harm; diagnostic delays; and breakdown in trust

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Solutions

• Ensure equitable access to care and diagnosis.

• Recognise and challenge biases in clinical reasoning.

• Train clinicians in communication ethics.

• Support MUS patients via pathways that validate and investigate their concerns.

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Conclusion

Addressing epistemic injustice is essential to ethical medical care, especially for patients with MUS.

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Conference Wrap-Up and Reflections

The conference concluded with an interactive Q&A session, bringing together insights on future challenges and opportunities in managing Medically Unexplained Symptoms (MUS).

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The Role of Artificial Intelligence

• Potential benefits:

  • Can process large amounts of data faster than human doctors

  • May suggest alternative diagnoses or connect patterns

• Key caution:

  • AI will learn from the data we provide

  • Risk of replicating existing biases – including the “worst habits” of a few doctors on bad days

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The Changing Role of General Practitioners

• Time constraints reduce the ability to fully explore complex patient histories

• Fragmented NHS data sharing prevents GPs from “joining the dots” for multi-symptom patients

• Reduced continuity of care:

  • Seeing a different GP each time requires rapid record review

  • Limited access to full records leads to stalled consultations

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The Referral Dilemma

• Common assumption: “Referral = problem solved”

• Reality:

  • Long waiting lists delay definitive management for months

  • Patients need interim support and symptom management while waiting

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Patients Seeking Help Outside the NHS

• Lack of support drives patients to private or alternative services

• Consequences:

  • Mixed outcomes in care quality

  • NHS loses visibility of these patients and their challenges

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Key messages of the day were:

• the importance of doctors listening to and believing patients, not dismissing them;

• the benefit to patients from doctors validating their symptoms, even when the doctor does not have an explanation for them;

• the courage required and benefit to patients from doctors sharing their diagnostic uncertainty; and

• the ability of healthcare professionals to have cognitive flexibility, thinking beyond their silos to join the dots.

 

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