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What We Do

Understanding why patients are overlooked is only the beginning. FPOD brings people together to turn that understanding into practical action.

We combine research, patient involvement, collaboration, education and advocacy to improve recognition, understanding and care for people whose symptoms or conditions are overlooked, poorly understood or difficult to diagnose.

  • RESEARCH & EVIDENCE

  • PATIENT VOICES

  • COLLABORATION

  • EDUCATION

  • ADVOCACY

Research and Evidence

Many overlooked conditions and persistent symptom presentations are characterised by gaps in knowledge. FPOD aims to help identify those gaps, support thoughtful investigation and encourage research that reflects both clinical questions and patient experience.

  • Gathering knowledge

    • Reviewing existing literature, guidance and resources to understand what is already known and where important questions remain.

  • Identifying gaps

    • Exploring diagnostic pathways, areas of uncertainty and points where patients may become lost between services.

  • Supporting research

    • Working with academic and clinical partners on projects relevant to overlooked patients and persistent symptoms.

  • Sharing findings

    • Turning research and learning into accessible information, presentations, publications and educational resources.

Patient Voices

Lived experience can reveal problems that are difficult to see from clinical records alone: repeated referrals, communication failures, diagnostic delays, inappropriate labels and the everyday consequences of uncertainty.

  • Patient-led surveys

    • Developing surveys and other ways for patients to describe their experiences, priorities and unmet needs.

  • Patient stories

    • Creating opportunities for people to share what happened to them and what they believe could have made their care better.

  • Setting priorities

    • Using patient experience to help identify questions that deserve greater clinical and research attention.

  • Co-production

    • Where appropriate, involving people with lived experience in the design, interpretation and communication of FPOD's work.

Collaboration

FPOD seeks to connect people and organisations that may otherwise work separately. We want to encourage conversations across clinical specialties, research disciplines, patient organisations and healthcare systems.

  • Clinical specialists

    • Engaging clinicians and specialist centres with experience of complex, rare or persistent conditions.

  • Universities & researchers

    • Developing relationships with academic teams interested in diagnostic uncertainty, patient experience and overlooked disease.

  • Patient organisations

    • Working alongside existing groups rather than duplicating valuable support, expertise or advocacy.

  • Multidisciplinary networks

    • Bringing different perspectives together when a problem does not fit neatly within one professional or organisational boundary.

Education & Awareness

Better care depends not only on new discoveries, but also on how existing knowledge is communicated. FPOD uses education and awareness to bring patient experience, clinical uncertainty and emerging evidence into wider discussion.

  • Conferences & events

    • Creating opportunities for patients, clinicians, researchers and advocates to learn from one another.

  • Educational resources

    • Developing accessible materials that explain difficult issues without oversimplifying them.

  • Professional engagement

    • Encouraging discussion of overlooked patients within clinical, academic and professional communities.

  • Public awareness

    • Helping a wider audience understand the impact of diagnostic uncertainty, delayed diagnosis and fragmented care.

Advocacy & Getting Heard

FPOD advocates for greater recognition of patients who do not fit comfortably within established pathways. Our advocacy should be constructive, evidence-informed and grounded in lived experience.

  • Publications & opinion

    • Contributing articles, commentary and thought leadership that bring overlooked issues into professional debate.

  • Conferences & presentations

    • Using meetings and events to raise questions, share evidence and amplify patient perspectives.

  • Professional dialogue

    • Engaging clinicians, researchers, organisations and decision-makers around gaps in recognition and care.

  • Patient representation

    • Helping ensure that discussions about healthcare improvement include the experiences of those most affected.

Building Better Systems

The longer-term goal is not simply to describe the problem. It is to help create healthcare systems that respond better when symptoms are complex, diagnoses are uncertain and conventional pathways have not worked.

  • Better pathways

    • Encouraging clearer routes for review, referral and support when standard pathways do not resolve a patient's needs.

  • Earlier recognition

    • Helping improve awareness of patterns that may otherwise lead to repeated delay or misdirection.

  • Connected care

    • Promoting communication across specialties and services so that the whole patient is not lost between individual problems.

  • New research questions

    • Using evidence gaps and patient priorities to help stimulate further investigation where it is genuinely needed.

See the work taking shape

Explore FPOD's research priorities, current projects and academic collaborations.

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