Forgotten Patients, Overlooked Diseases
Why Patients Are Overlooked
Not every illness follows a clear pathway. Some people live for months or years with symptoms or conditions that are difficult to diagnose, poorly understood, mislabelled or spread across several specialties.
When healthcare systems are built around recognised diagnoses and defined pathways, these patients can be left without clear answers, coordinated care or appropriate support.
FPOD exists to help make these patients visible.
The human impact
Behind every diagnostic pathway is a person. Uncertainty can affect far more than symptoms alone: it can influence confidence, work, education, finances, relationships and a person's trust in healthcare.
£2.89 billion is the estimated NHS cost of medically unexplained symptoms in 2008, alongside wider economic costs.
The Reality of Persistent & Unexplained Symptoms
Why Patients Fall Through the Gaps
Patients with medically unexplained or persistent symptoms can experience disbelief, inappropriate referral, repeated investigation and uncertainty. Clinicians can also find these consultations difficult when established pathways do not provide an answer.
Up to 45% of GP consultations have been reported to involve symptoms without a clear diagnosis.
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Fragmented care
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Symptoms that cross specialties can lead to repeated referrals without anyone seeing the whole picture.
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Diagnostic uncertainty
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When tests do not produce a clear answer, uncertainty can be treated as an endpoint rather than a reason for further thoughtful exploration.
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Clinical silos
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Poor communication between specialties can make complex or overlapping conditions harder to recognise.
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Rigid pathways
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Standard pathways work well for many people, but can struggle when symptoms do not fit established categories.
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Recognition gaps
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Rare, emerging or poorly understood conditions may not be considered early enough.
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Communication & trust
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Patients who repeatedly seek help can feel dismissed or disbelieved, while clinicians may feel frustrated or powerless.
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Around 50% of secondary-care cases have been reported to lack a clear diagnosis after three months.
“Advocacy requires us to listen to patients’ stories, recognise the limits of our knowledge, and create systems that help clinicians explore further when answers are unclear.”
Dr Adrian Tookman, Chair
Why recognition matters
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Without a diagnosis, people can feel reduced to a “case” rather than treated as a person.
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An incorrect label - or no label at all - can contribute to distress, delays and inappropriate care.
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Even where treatment options are limited, a well-founded diagnosis or clearer explanation can provide dignity, validation and direction.
A reflection shared by a retired clinician
“Last week, I was contacted by two of my former EDS patients who have no specialised support in the city of Sheffield or its surrounding areas. Both were managing their problems very well but were uncertain about new symptoms. As a retiree, I am no longer able to advise them, but pointed them to services for other conditions. I mentioned this group, and they were aware of many other individuals with EDS symptoms who also lacked medical support. The most worrying and inexplicable stories include antipathy and occasional hostility from some GPs and gastroenterologists. I hope this is a local problem, but I doubt it.”
The 'OMG' Patient
Many clinicians know the moment:​
“Something isn't adding up... What am I overlooking?”
That moment of uncertainty can be important. Rather than dismiss the unknown, FPOD wants to encourage a culture that welcomes curiosity, deeper exploration and compassionate communication.
A Better Approach Is Needed
The aim is not endless testing or assuming that every unexplained symptom has a hidden disease. It is to respond to uncertainty thoughtfully, proportionately and humanely.
