Forgotten Patients: Overlooked Diseases

We created Forgotten Patients, Overlooked Diseases to support individuals and families who feel lost in the healthcare system — often without a diagnosis or carrying an incorrect label.

Our multidisciplinary team, with members from the UK, Germany, and beyond, is committed to listening, understanding, and advocating for those who are falling through the cracks.

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Why This Matters

Many patients:

• Have rare diseases that go unrecognised

• Have common conditions but are misdiagnosed or mislabelled

• Are left in limbo, without a clear path forward

Clinicians’ perceptions shape a patient’s journey through the system. Without a diagnosis, individuals can feel depersonalised — reduced to a “case” rather than a person. An incorrect label or no label at all can cause distress, delays, and inappropriate care.

A correct diagnosis — even when treatment options are limited — can restore dignity and clarity.

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The Reality of Medically Unexplained Symptoms (MUS)

• Patients with MUS often feel disbelieved, dismissed, or referred inappropriately

• Emotional wellbeing is frequently overlooked

• GPs report frustration and powerlessness in these consultations

MUS are common — up to 45% of GP consultations and around 50% of secondary care cases still lack a clear diagnosis after 3 months.

In 2008, NHS costs for MUS were estimated at £2.89 billion, with wider economic losses of £14 billion from sickness absence — not to mention the personal cost to patients.

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A New Approach is Needed

The current system often:

• Relies too heavily on tick-box processes

• Operates in clinical silos with poor cross-specialty communication

• Misses the opportunity to learn from those most affected

We believe it’s time to:

• Embrace diagnostic uncertainty as a strength, not a failure

• Empower patients with a voice

• Equip clinicians to go beyond rigid guidelines

• Facilitate exploration when standard routes fall short

• Recognise that the art of medicine matters just as much as its science

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Our Focus

At the heart of our work is patient advocacy — ensuring that people:

• Are heard and respected

• Can contribute to their care

• Receive compassionate and thoughtful exploration of their symptoms

• Help guide the development of better systems for everyone

Some patients already arrive with well-researched, self-diagnosed conditions — and often, they’re right. We need systems that are ready to listen, learn, and act.

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“The OMG Patient”

Many clinicians know the moment:

“Something isn’t adding up… What am I overlooking?”

Rather than dismiss the unknown, we want to build a culture that welcomes curiosity, encourages deeper exploration, and puts humanity back at the centre of care.