At the heart of our work is patient advocacy
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.
Listening to Patients
Representation
Evidence-based advocacy
Driving change
"Advocacy requires us to focus on patient’s stories, acknowledge our limitations and have processes in place that facilitate and assist doctors who recognise there is a need to explore further."
Dr Adrian Tookman, Chair
We created Forgotten Patients, Overlooked Diseases to support individuals and families who feel lost in the healthcare system. They are often without a diagnosis or are 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.
Why this matters
Many patients:
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Have rare diseases that go unrecognised
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Have common conditions but are misdiagnosed or mislabelled
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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 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.
The reality of Medically Unexplained Symptoms (MUS)
Patients with MUS often feel disbelieved, dismissed, or referred inappropiately
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.
A New approach is needed
The current system often:
Relies too heavily on tick-box processes
Operates in clinical silos with poor cross-speciality communication
Misses the opportunity to learn from those most affected
We believe its time too:
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 science
Our focus
At the heart of our work is patient advocacy, ensuring that people:
Are heard and respected
Contribute to their own 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.
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.
