Forgotten Patients: Overlooked Diseases

Dr Adrian Tookman has extensive clinical experience in Palliative Medicine. He is recognised for developing a unique outpatient service for patients with complex symptoms, some of whom had been referred from around the UK. Among this cohort were those with challenging unexplained symptoms patients. When reviewed in the Hospice setting, many were found to have an underlying physical condition that had not previously been recognised. This experience was one of the reasons that led to the establishment of the ‘Forgotten Patients, Overlooked Diseases’ (FPOD) charity. FPOD is a multidisciplinary group which seeks to support individuals with unexplained symptoms or who feel lost in the health system. The charity does this by providing resources, signposting and education, as well as supporting research. He is currently Chairman and Trustee of FPOD.

 

Research is a major interest. Dr Tookman has contributed to over 200 publications. He has been Lead Field Editor for the Pain, Palliative and Supportive Care Group (PaPaS), part of the Cochrane systematic review organisation (2014 – 2022). His areas of academic interest include ‘Rehabilitation and Survivorship in Cancer’, fatigue in patients with advanced cancer, holistic care and research surrounding the dying person.

 

Dr Minha Rajput-Ray is a medical Director, CEO & Founder @ Curaidh Clinic is both an experienced integrative medicine physician based in Dundee, Scotland, and a patient with complicated health issues. At a young age Dr Minha suffered a serious accident followed by a protracted recovery. Around the same time, she was diagnosed with a debilitating autoimmune illness. This has been instrumental in her appreciation of the effects chronic illness can have on individuals and their families. Further, she appreciates more than most how a lack of joined up healthcare services can impact diseases outcomes.

 

Decades later, after further injuries and health complications, she was motivated to take on the role of “co-ordinating her own care pathway,” and to seek alternatives beyond the limitations of the NHS framework. Putting this knowledge to use led her to establish a dedicated clinic. The Curaidh Clinic model offers a coordinated, multidisciplinary approach for pain, chronic conditions, and work health. This bridges the gap between conventional medicine and ‘out of the box therapies for patients struggling with complex medical conditions. Dr Rajput-Ray currently has numerous research and health interests and has published and presented extensively.

 

Dr Chris Burton is Professor of Primary Medical Care at the University of Sheffield. His main research and clinical interest is in persistent physical symptoms but his work extends to broader issues around the intersection of physical and mental health. His work focuses on the interpersonal aspects of care including involving the processes of diagnosis, explanation and reassurance. Chris recently led Multiple Symptoms Study 3, a large trial of an extended role GP consultation intervention for persistent physical symptoms. His research involves a range of approaches including evidence synthesis, analysis of routine healthcare data, qualitative analysis and the development and evaluation of interventions. He has a longstanding interest in the application of complexity science to illness and healthcare. He leads the Primary Care Research group within the School of Medicine and Population Health at the University of Sheffield. Chris worked for many years as a GP in a rural former coal-mining community in the South West of Scotland. He completed his doctorate at the University of Edinburgh and was a Senior Lecturer in Primary Care at the University of Aberdeen before moving to Sheffield in 2017.

 

Katia Chrysostomou is a Performance Coach providing support to the medical communication community. She is a member of FPOD and is based in London.

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Christianne Forrest is a Patient Advocate from Swansea, South Wales. She is a cancer survivor with a chronic health condition. She is a member of FPOD.

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Lyndon Gee is a well-known health writer and broadcaster specialising in food and health matters. He is Chair of the Guild of Health Writers.

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Dr Miranda Kronfli is Associate Professor (Teaching) and Programme Co-Lead, Master’s in Health Professions Education programme at University College London.

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Chantal Patel is Associate Professor and Head of Interprofessional Skills at Swansea University. She is a member of the Institute of Medical Ethics. Chantal is a member of FPOD.

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Dr Steven Walker is Trustee and Secretary of FPOD. He is Honorary Lecturer at University College London and Tutor at the University of Applied Sciences, Bremen, Germany. Steven runs a medical communication company and is involved in research and teaching.

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Jo Waters is a respected Freelance Feature Writer, notably for the Daily Mail and is a leading member of the Guild of Health Writer.

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Louise Fish has over 25 years of executive and non-executive board experience of health and social care in the charitable, commercial and public sectors. Louise is currently Chair of NHS England's Rare Disease Advisory Group (RDAG).  She was formerly Chief Executive of Genetic Alliance UK, an alliance of over 200 organisations representing people with rare and genetic conditions. Prior to this Louise was Chief Executive at the Tuberous Sclerosis Association, one of Genetic Alliance UK’s members.  Louise will be speaking in a personal capacity at this event.

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