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 will bring 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 will examine current understanding, highlight gaps in care, and showcase innovative approaches that can improve outcomes for patients. Attendees will leave 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, recognising that experiences and symptoms throughout life can shape future wellbeing.
She emphasised that many common conditions—while not life-threatening—can be profoundly life-limiting, and called for more integrated, person-centred healthcare services that better support individuals living with enduring symptoms.
Please watch on demand here
Introduction- The problem of enduring symptomsin adults, the challenge of terminolgy and the importance of diagnostic doubt: Dr. Adrian Tookman
Dr Adrian Tookman, Chair of Forgotten Patients, Overlooked Diseases, welcomed delegates by highlighting the challenges faced by people living with enduring symptoms and conditions that do not fit neatly into existing diagnostic categories.
He explored the limitations of current terminology, the risks of diagnostic labels, and the importance of recognising diagnostic uncertainty as a legitimate and constructive part of clinical practice. Emphasising that there are no easy answers, he called for open discussion, collaboration, and a willingness to embrace doubt as a pathway to better understanding and care for patients with complex and unexplained symptoms.
Please watch on demand here
You can also find the full presentation slides here
The patient journey and how stories can illuminate what really matters to individuals: Dr. Pip Hardy
Pip Hardy, Co-founder of Patient Voices, explored how personal stories can illuminate what truly matters to individuals living with illness. She demonstrated how patient narratives provide insights that statistics alone cannot capture, helping healthcare professionals better understand experiences, priorities, and unmet needs.
Through powerful examples, Pip showed how storytelling can foster empathy, improve communication, and drive meaningful changes in healthcare practice, reminding delegates that listening to patients’ stories is essential to delivering compassionate, person-centred care.
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You can also find the full presentation slides here
Navigating the patient-physician dynamic through the lens of antiphospholipid syndrome: Dr. Minha Rajput-Ray and Tracy Jallow BEM
Dr Minha Rajput-Ray and Tracy Jallow BEM explored the patient–physician relationship through the lived experience of antiphospholipid syndrome (APS), highlighting the challenges of delayed diagnosis, fragmented care, and navigating complex symptoms.
Combining clinical and patient perspectives, they emphasised the importance of listening, collaboration, and shared decision-making. Their key message was that meaningful progress is achieved when patients and clinicians work as partners, recognising that every individual's journey is unique and that the best outcomes come from co-creating care.
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When does the patient story go wrong? Contrasting experiences of a patient with common cancer and a rarely diagnosed disease: Christianne Forrest
Christianne Forrest drew on her lived experience of both breast cancer and Ehlers–Danlos syndrome (EDS) to contrast the clear, coordinated pathway of a common condition with the often fragmented and prolonged journey faced by people with rare or poorly recognised diseases.
She highlighted the challenges of diagnostic uncertainty, siloed healthcare systems, and the need for patients to continually advocate for themselves. Christianne emphasised the importance of listening to patients, embracing clinical curiosity, and ensuring that individuals with complex symptoms are not overlooked, dismissed, or left without answers.
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You can also find the full presentation slides here
Ethics of care for people with enduring symptoms: Ass. Prof. Chantel Patel
Assistant Professor Chantal Patel explored the ethical challenges of caring for people living with enduring symptoms when a clear diagnosis may be absent. She emphasised that while diagnosis remains important, clinicians must not lose sight of the individual's lived experience and the impact symptoms have on daily life.
Drawing on principles of medical ethics, Chantal highlighted the importance of listening to patients, acknowledging uncertainty, and building trust through compassionate, person-centred care. She argued that ethical care begins by validating patients' experiences and ensuring that support, dignity, and continuity of care remain central throughout their healthcare journey
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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. Speaking from a patient advocacy perspective, he highlighted both the opportunities and challenges of the approach.
Richard emphasised the importance of using patient data more effectively to understand diagnostic delays, improve patient safety, and identify where healthcare systems can better support people with unresolved symptoms. He concluded by calling for greater use of NHS data and research to ensure that patients are not overlooked and that lessons are learned from their experiences.
Please watch on demand here
You can also find the full presentation slides here
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. He highlighted the importance of looking beyond pain alone to understand the wider constellation of symptoms that often accompany long-term conditions, including fatigue, sleep disturbance, cognitive difficulties, and neurodiversity.
Emphasising the value of empathy, shared decision-making, and realistic hope, Dr Ellis encouraged clinicians to move away from a purely diagnostic focus and instead help patients make sense of their experiences, develop personalised strategies for recovery, and build confidence in managing their condition.
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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. She highlighted the importance of recognising biases within healthcare systems and ensuring that patients feel heard, believed, and understood.
Drawing on the biopsychosocial model, Dr Sachar advocated for compassionate, person-centred care that embraces uncertainty, values lived experience, and supports collaborative approaches to managing complex symptoms.
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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. He emphasised that symptoms such as chest pain, breathlessness, palpitations, and dizziness can have a profound impact on confidence, identity, and quality of life, even when serious disease has been excluded.
Drawing on years of clinical experience, Dr Gupta highlighted the importance of distinguishing between physical discomfort and uncertainty, arguing that explanation, reassurance, and understanding are often as important as investigation. He concluded that successful care is not simply about ruling out disease, but about helping patients regain confidence, function, and trust in their bodies.
Please watch on demand here
You can also find the full presentation slides here
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. He highlighted how fragmented care, limited consultation time, and a lack of continuity can leave patients feeling unheard and unsupported.
Focusing on practical solutions, Dr Dean emphasised the importance of listening to patients’ stories, embracing clinical uncertainty, and building compassionate, coordinated models of care. His key message was that meaningful improvements come when healthcare professionals move beyond checklists and diagnoses to understand how symptoms affect a person’s daily life and wellbeing.
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You can also find the full presentation slides here
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.
Drawing on research and clinical experience, he highlighted the challenges this presents for both patients and healthcare professionals, particularly when symptoms persist despite investigation or treatment. Professor Burton emphasised the need for approaches that acknowledge the reality and impact of symptoms, while remaining open to uncertainty and ongoing learning, in order to provide effective, person-centred care.
Please watch on demand here
You can also find the full presentation slides here
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. Drawing on her expertise in functional neurological disorders, she emphasised the importance of understanding symptoms as genuine experiences that can cause significant distress and disability.
She discussed the role of the nervous system in shaping symptom experiences and advocated for compassionate, collaborative approaches that combine clear explanations, patient engagement, and evidence-based management strategies. Her key message was that validating symptoms and fostering understanding can be as important as reaching a definitive diagnosis.
Please watch on demand here
You can also find the full presentation slides here
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. He highlighted both the opportunities and limitations of genetic testing, explaining that while advances in genomics can provide answers for some patients, testing is not always appropriate or informative for everyone.
Emphasising the importance of careful clinical assessment, Dr Karimiani discussed how genetic testing can support diagnosis, guide management, and inform future care when used in the right context. His key message was that genomics should be viewed as a valuable tool within a broader patient-centred approach, rather than a universal solution for all enduring symptoms.
Please watch on demand here
You can also find the full presentation slides here
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. Drawing on evidence from public health research, she highlighted the influence of biological, social, and healthcare-system factors that contribute to these disparities.
She emphasised the need to recognise and address gender inequalities in healthcare, improve understanding of women’s health experiences, and ensure that services are designed to meet the needs of those living with persistent symptoms. Her key message was that reducing inequity requires both greater awareness and systemic change across healthcare and society.
Please watch on demand here
You can also find the full presentation slides here
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.
The discussion focused on the need for better resources, stronger research, improved medical education, and more joined-up approaches across healthcare. Speakers and delegates emphasised that progress will require practical action, collaboration, and a greater willingness to listen to patients, acknowledge uncertainty, and design services around real lived experience.
Please watch on demand here
Speaker Bios
Dr Adrian Tookman is a retired Palliative Medicine Specialist (2022). He currently serves as Trustee and Chair of Forgotten Patients, Overlooked Diseases. He has dedicated his career to Palliative Care with a particular interest in Oncology, Rehabilitation and management of complex symptoms in people with advanced, progressive illness. He has been Medical Director of the Marie Curie Hospice in Hampstead, Medical Director of The Royal Free Hospital and Field Editor for Cochrane Palliative and Supportive Care
Prof. Chris Burton is General Physician and a researcher primarily involved in persistent physical symptoms and functional somatic disorders. He currently leads the Health Service Research Centre of the Sheffield Centre for Health And Related Research at the University of Sheffield. His current work builds on the success of Multiple Symptoms Study 3 and seeks ways to improve patient outcomes.
Tracy Jallow BEM is an expert patient at Kings College London and patient educator. She is a recipient of the BEM in the New Years Honours List 2023. She passionately advocates for raising awareness regarding invisible disabilities, chronic pain and fatigue through her own experience with Antiphospholipid syndrome.
Dr Minha Rajput Ray is a Cambridge-trained Physician Scientist, Fellow of the Royal College of Physicians (London), Medical Director of Curaidh Clinic, Dundee, tertiary referral centre for Pain, Medically Unexplained Symptoms, and Fatigue Syndromes. With over 100 co-authored publications and presentations and multi-speciality expertise across Rheumatology, Pain, Occupational and Disability and Integrative Medicine, she guides Patients and Families via data driven pathways, engaging an ecosystem of clinican support towards sustainable outcomes.
Dame Lesley Regan DBE is professor of Obstetrics and Gynaecology at Imperial College London and Honorary Consultant at Imperial College Healthcare NHS Trust at St Mary's Hospital. She was the president of the Royal College of Obstetricians and Gynaecologists from 2016 to 2019. In 2020, she became the chair of Wellbeing of Women. In 2022, Dame Lesley was appointed as the Government's first ever Women's Health Ambassador for England. Professor Regan is the first woman to hold a chair on obstetrics and gynaecology in the country and for the past decades she has worked to establish the biggest miscarriage clinic in the world.
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Christianne Forrest is a former language lecturer who is a patient member of the Forgotten Patients, Overlooked diseases charity. She is an experienced patient advocate, having worked with various bodies including Nice and Breast Cancer Now, where she has been a volunteer for over twenty years. She won a National award for volunteering in 2022. She has her own lived experience as a breast cancer survivor and someone living with Ehlers Danlos Syndrome, amongst other conditions.​
Dr Pip Hardy and Tony Sumner are co-founders of the Patient Voices Programme, established in 2003 in an effort to bring about greater humanity and compassion in healthcare through the telling and sharing of stories from patients, carers and the people who care for them. Their work has been recognised by several awards, including the BMJ’s Award for Excellence in Healthcare Education; the John Horder award for Innovation in Interprofessional Learning and the Medical Journalist’s Health Champion of the year finalist. They are also Honorary Fellows at Durham University’s Institute for Medical Humanities, where they have recently completed two-year bridging research fellowships.
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Richard Stephens is a survivor of two cancers and a heart emergency along with other health issues. He chaired the NCRI Consumer Forum 2012-19, BBMRI-ERIC's Stakeholder Forum 2018-22, and useMYdata 2019-26. He is founding co-editor of BMC Journal of Research Involvement and Engagement, and currently chairs Cancer Research Advocates Forum UK, among other national and international roles.
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Dr John Dean is a retired Physician who worked as the Clinical Vice President at Royal College of Physicians for more than 8 years and the Deputy Medical Director at East Lancashire Hospital NHS Trust. Throughout his career, he has been an advocate for patient and family involvement in care delivery and design.
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Dr Benjamin Ellis MBE is a consultant rheumatologist at Imperial College Healthcare, where he was also Clinical Director for Outpatient Transformation. An honorary member of the British Pain Society and the Faculty of Public Health, he supported development of the NICE chronic pain guidelines, and has spoken about chronic pain on multiple television appearances. He is a cycling commuter, a choral singer, and an enthusiastic cook. In the 2024 New Years Honours List he received an MBE for services to Healthcare, to Equality and to the Jewish Community
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Dr Amrit Sachar has been a liaison psychiatry consultant and worked in West London NHS Trust and Imperial College Healthcare NHS Trust since 2005.
At RCPsych, she is Joint Presidential Lead for Equity and Equality where she has co-developed and implemented campaigns like Act Against Racism, 2023, Delivering on Disability, 2025, the Women and Mental Health Strategy and Menopause Position Statement. She is a member of the Executive Committee of the Faculty of Liaison Psychiatry, leading the strategy work on Persistent Physical Symptoms, drawing on her equity work.
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Ass. Prof. Chantal Patel is a Medical Law Lecturer at Swansea University where she advocates for fair treatment within the NHS. Beginning as a nurse in Wales, she quickly rose to become one of the youngest ward sisters, demonstrating early leadership and excellence. She has chaired the Welsh chapter of UNESCO Bioethics and the Clinical Ethics Committee.
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Dr Ania Crawshaw is a consultant neurologist at South London and Maudsley NHS Foundation Trust and Lewisham and Greenwich NHS Trust, with a specialist interest in Functional Neurological Disorder (FND) and medical education. She has extensive experience in clinical neurology and is actively involved in teaching on the MSc in Clinical Neuroscience Practice at City St George's, University of London.
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Dr Vadivelu Saravanan is a clinical rheumatologist in Queen Elizabeth Hospital, Gateshead, UK. He has a wide range of interests from Polymyalgia Rheumatica (PMR); Giant cell arteritis (GCA), Rheumatoid lung disease, Sjogren’s syndrome, Hypermobility, Fibromyalgia and Informatics. He is a former medical advisor to PMR-GCA-UK & North East of England support groups. He is now working with Ehlers Danlos Support UK campaigning for hypermobile EDS care. He has a newfound interest in longevity medicine and musculoskeletal ageing since he reached 50 himself.
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Camilla Higgins initially studied Law at Christ Church, Oxford, before beginning her training to be a solicitor at Clifford Chance. A sudden deterioration in her health, culminating in a diagnosis of Mast Cell Activation Disorder, led to a change in her path. Camilla will now be graduating from the Cambridge Graduate Course in Medicine in June 2026 and beginning work as a Foundation Doctor in Salisbury this August.
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Dr Bill Noble worked as a GP and hospice doctor for 16 years before specialising in palliative medicine in 1996, when he became Macmillan Senior Lecturer and Honorary Consultant Physician in Sheffield. His research interests have included palliative care in primary care, clinical communication, service evaluation, and holistic needs assessment. He served as Chair of the Association for Palliative Medicine, Founding Editor-in-Chief of BMJ Supportive & Palliative Care, and Executive Medical Director of Marie Curie. In 2015 he was appointed Honorary Professor of Community Palliative Care at Sheffield Hallam University and remained active in clinical, research, and editorial roles until his retirement in 2024.
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Dr Lucy Foulkes is an academic psychologist at the University of Oxford. She holds a Prudence Trust Research Fellowship and a NIHR Senior Research Fellowship. Her group researches mental health and social development in adolescence, and she has written two books: What Mental Illness Really Is (…and what it isn’t) and Coming Of Age: How Adolescence Shapes Us, both published by Penguin Random House. Her work has been featured in national and international media outlets including The Guardian, The Times, New Scientist, BBC Radio 4, BBC Newsnight and The New York Times. Since she was a teenager herself, she has experienced chronic pain, chronic migraines and other enduring symptoms across multiple medical disciplines. After repeated disinterest from doctors, last year she was diagnosed with hypermobile Ehlers Danlos Syndrome, just before her 38th birthday.
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Dr Ehsan Karimiani is a Clinical Geneticist and Genomic Medicine Specialist with expertise in ultra-rare and undiagnosed disorders. He works across clinical care, research, and education, with affiliations including University College London. He has authored over 100 scientific publications, particularly in gene discovery and rare disease genomics, with a focus on improving diagnosis and personalised care for patients with complex genetic conditions.
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Dr Sanjay Gupta is a consultant cardiologist at York Teaching Hospitals. He has a special interest in cardiac imaging. Sanjay leads a
multidisciplinary team supporting patients medically unexplained cardiology symptoms.
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Dr Lynsay Matthews is a Lecturer in Public Health at the University of the West of Scotland. Lynsay is deputy programme lead of the Master of Public Health (Women’s Health) and the postgraduate Women’s Mental Health module. Lynsay’s research explores the intersection of the menstrual cycle and mental health, with a focus on Premenstrual Dysphoric Disorder (PMDD). Lynsay is Trustee of the UK arm of the International Association for Premenstrual Disorders (IAPMD UK) and co-lead of the UK PMDD Research Agenda.