Forgotten Patients: Overlooked diseases
The problem
Modern healthcare can do so much, yet some people with undiagnosed complex symptoms are forgotten in the system and may not receive potentially beneficial health interventions. Even people with common diseases can be overlooked. Organisations exist to support individuals with specific rare diseases, but those who are unrecognised or incorrectly categorised have limited representation. We wish to change that.
Who we are
We are a multidisciplinary group of health and social care professionals, academics, public health experts, scientists, ethicists, people with illness or medical conditions, spiritual care givers, politicians, and campaigners with an international perspective.
Chairs
Achim Kautz – Hoch5, Patient Representative and Health Advocate (former CEO German Liver Patients Association), Cologne, Germany.
Dr Adrian Tookman – Palliative Medicine Physician (retired), Lead Field Editor Cochrane PaPaS review group, former Medical Director NHS Foundation Trust, London, UK.
Founding members
Katia Chrysostomou – Communications specialist and medical, transformational life coach and Aunt to family member with EDS, London, UK.
Dr Eva Diehl-Wiesenecker – Emergency physician with an interest in porphyria, Charité University Hospital, Berlin, Germany.
Dr Kiran Jani – Consultant anaesthetist with an interest in medical ethics, Stevenage, UK.
Katharina Klesper – Health economist with a focus on rare disease, Klesper Health Communications, Meerbusch, Germany.
​
Fiona Lapraik - Lay member and trustee. Experience in voluntary sector. Alton UK.
Dr Carlos Lifschitz – Emeritus professor of paediatric gastroenterologist, Houston Texas, USA. Associate physician, Hospital Italiano, Buenos Aires, Argentina.
Dr Philip Lodge – London, UK.
Prof Bill Noble – Sheffield Hallam University, former medical director at Marie Currie, and editor, BMJ Supportive & Palliative Care, Sheffield, UK.
Dr Chantal Patel – Associate professor in medical law and ethics, University of Swansea, Wales, UK.
​
Dr Minha Rajput-Ray – Integrative medicine, pain, chronic disease and work health specialist, person with lived experience, Curaidh Clinic, Dundee, Scotland, UK.
Dr Donna Sagar – Director of public Health (ret). Interest in childhood obesity. Manchester, UK.
Dr Carmen Schmechel – Medical historian, Freie Universität Berlin, Germany.
Dr Leena Sinha – Consultant gastroenterologist and local ethics lead, Romford, Essex, UK.
Prof Rajan Somasundaram – Head of emergency medicine, researcher and hepatologist, Charité University Hospital, Berlin, Germany.
Rev Dr Peter Speck – Healthcare chaplain, researcher in spirituality, senior lecturer (spiritual care at end of life), Kings College London, UK.
Dr Selena Stellman – London, UK.
Richard Stephens – Patient representative with numerous organisations. Concerned about research not being implemented. Former social housing manager. Co-Editor-in-Chief BMC Journal of Research Involvement & Engagement. Stevenage, UK.
Dr Jacques Tamin – Occupational physician/lecturer in medical ethics, University of Manchester, UK.
Dr Steven Walker – Director, St Gilesmedical Ltd, London, UK & Stgilesmedical GmbH, Berlin, Germany.
Dr Christina Weiler-Normann – Internist, hepatologist, and gastroenterologist with an interest in rare diseases, University Hospital Hamburg, Germany.
​
Natalie Woods – Researcher and ‘Lived Experiences Partner’ NHSE, London, UK.
Administrative support
Dr Steven Walker – London & Berlin
Daniel Roberts - London, UK
Group strategy
To explore example diseases using a holistic, multidisciplinary approach which could then be applied to other conditions.
Among health problems of current interest to group members are Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorders (HSD), porphyria, fibromyalgia, and eosinophilic disease of the gastrointestinal (GI) tract.
Our purpose
The advancement of health including the prevention or relief of sickness, disease, or human suffering, as well as the promotion of wellness for people in Europe and beyond who have medically unexplained symptoms, overlooked diseases or common unresolved health problems. We will do these by
-
developing resources for people with overlooked health issues,
-
providing support/signposting for patients and families who are not being helped elsewhere,
-
facilitating, sponsoring, or delivering research,
-
promoting education,
-
encouraging the adoption of research findings.
Guiding principles
-
make things change
-
work where we can be most effective
-
devote resources where there are gaps
-
don’t duplicate effort / tread on the toes of others
-
work with others to support their cause
-
provide a multidisciplinary focus to a problem
-
identify policy and systemic issues blocking access to care
-
educate, physicians are rarely aware of the interconnectedness of symptoms at orthopaedic, digestive, neurological levels etc.
-
involve and empower those affected by the disease, they are the experts.
-
be patient-centred, not paternal or patronising
-
avoid ethical, cultural, sexual, ageist, and social discrimination
-
use all the skills and knowledge of the group. Adopt a holistic approach with multiple dimensions e,g. clinical, ethical, social, spiritual, structural, occupational
Personal stories
Comment from group member
“Last week, I was contacted by two of my former EDS patients who have no specialised support in the city of Sheffield or its neighbours. Both were managing their problems very well but were uncertain about new symptoms. As a retiree, I am no longer able to advise them, but pointed them to services for other conditions. I mentioned this group and they both were aware of many other individuals without medical support for a variety of EDS symptoms. The most worrying and inexplicable stories include antipathy and occasional hostility from some GPs and gastroenterologists. I hope this is local problem, but I doubt it.”