Forgotten Patients, Overlooked Diseases
Enduring Symptoms:
From patient voices to solution-driven care
A 1-day hybrid CPD approved conference
Wednesday 24th June 2026
The Royal College of Physicians
11 St Andrews Place, Regent's Park, London, NW1 4LE
This one-day conference brought together leading voices from healthcare, academia, policy, and lived experience to explore the complex challenges of enduring symptoms and the opportunities for meaningful change. Through expert presentations, practical insights, and thought-provoking discussion, the programme examined current understanding, highlighted gaps in care, and showcased innovative approaches aimed at improving outcomes for patients.
Attendees left with fresh perspectives, greater awareness, and actionable ideas to help shape more compassionate, evidence-based, and solution-driven care.
Part 1- Setting the scene
Welcome
Prof. Dame Lesley Regan
Dame Lesley Regan opened the conference by highlighting the importance of a life course approach to health and the need for more integrated, person-centred services to support people living with enduring symptoms
Introduction- The problem of enduring symptoms in adults, the challenge of terminology and the importance of diagnostic doubt
Dr. Adrian Tookman
Dr Tookman explored the challenges of terminology, the risks of diagnostic labels and the value of embracing diagnostic uncertainty as part of better understnding and care
The patient journey and how stories can illuminate what really matters to individuals
Dr. Pip Hardy
Dr. Pip Hardy showed how patient stories provide insights beyond statistics, fostering empathy, improving communication and driving meaningful changes in healthcare
Navigating the patient-physician dynamic through the lens of antiphospholipid syndrome
Dr. Minha Rajput-Ray and Tracy Jallow BEM
Combining clinical and patient perspectives, they highlighted the importance of listening, collaboration and shared decision-making in achieving the best outcomes together
When does the patient story go wrong? Contrasting experiences of a patient with common cancer and a rarely diagnosed disease
Christianne Forrest
Christianne contrasted the clear pathway of a common condition with the fragmented journey of rarely diagnosed diseases, calling for clinical curiosity and patients not to be overlooked
Ethics of care for people with enduring symptoms
Ass. Prof. Chantel Patel
Ass. prof. Patel discussed the ethical challenges of care when diagnosis is unclear, emphasising compassion, respect, and support for patient autonomy
Part 2- Finding solutions
Patient data and Jess's rule; Who will it help
Richard Stephens
Richard Stephens explored the potential impact of Jess’s Rule, a new NHS initiative designed to encourage clinicians to reassess patients whose symptoms persist despite repeated consultations.
The pain consultation and how to survive it
Dr. Benjamin Ellis MBE
Dr Benjamin Ellis MBE explored practical approaches to supporting people living with chronic pain and related symptoms.
Enduring symptoms; The psychiatrist's view
Dr. Amrit Sachar
Dr Amrit Sachar offered a psychiatric perspective on enduring symptoms, exploring how factors such as gender, ethnicity, neurodiversity, rare diseases, and health inequalities can influence diagnosis, care, and outcomes.
Managing unexplained chest pain and enduring symptoms of possible cardiovascular origin
Dr. Sanjay Gupta
Dr Sanjay Gupta explored the challenges faced by people living with persistent symptoms that they attribute to the heart, despite the absence of an immediately obvious diagnosis.
Part 3- Moving forward
KEYNOTE- Problems and solutions of care for people with enduring symptoms
Dr. John Dean
Dr John Dean explored the challenges faced by people living with enduring symptoms within healthcare systems that are often designed around diagnosis rather than ongoing uncertainty.
Enduring symptoms: Indicators of disease and/or entities in their own right. A challenge for patients and professionals
Prof. Chris Burton
Professor Chris Burton explored the complex relationship between enduring symptoms and disease, questioning whether persistent symptoms should always be viewed simply as indicators of an underlying condition or whether they can sometimes be understood as significant health problems in their own right.
Enduring symptoms. A neurologist's point of view
Dr Ania Crawshaw
Dr Ania Crawshaw explored enduring symptoms from a neurological perspective, highlighting the challenges of assessing and managing symptoms that may not fit neatly within traditional disease frameworks.
Should everyone with enduring symptoms undergo genetic testing
Dr. Ehsan Karimiani
Dr Ehsan Karimiani explored the growing role of genomic medicine in understanding enduring symptoms and complex health conditions.
Enduring symptoms- Why are women disproportionally affected
Dr. Lynsay Matthews
Dr Lynsay Matthews explored why women are disproportionately affected by enduring symptoms and are more likely to experience challenges in diagnosis, treatment, and access to care.
Audience and speaker panel discussion- How do we move the issue of enduring symptoms forward?
Prof. Bill Noble, Dr. Lucy Foulkes, Dr Camilla Higgins & Dr Vadivelu Saravanan
The final speaker and audience discussion brought together Prof Bill Noble, Dr Lucy Foulkes, Dr Camilla Higgins, and Dr Vadivelu Saravanan to explore how care for people with enduring symptoms can be improved in practice.
Please watch on demand here