Modern medicine can do so much, yet some people with complex problems or rare diseases are overlooked, potentially beneficial health initiatives fall by the wayside and even some common health conditions do not get the attention patients believe they deserve.

Who 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. 

 
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Chairs

  • Achim Kautz - Hoch5, Cologne, Germany, Patient Representative and Health Advocate (former CEO German Liver Patients Association).

  • Dr Adrian Tookman – Palliative Care Physician, former Clinical Director, Marie Curie and Medical Director, Eden Hall Hospice, London

Participants

  • Professor Ashley Brown – Consultant Hepatologist, Imperial College, London

  • Paul Buka – Lecturer in Nursing & Healthcare Law and Ethics/ Academic Assessor School of Health and Social Care, University of Essex

  • Dr Kiran Jani – Retired Consultant Anaesthetist, Medical Ethics

  • Professor Carlos Lifschitz – Emeritus Professor, Paediatric Gastroenterologist, Houston Texas/Buenos Aires, Argentina

  • Professor Bill Noble – Palliative Care Physician, Former Medical Director, Marie Currie and Editor, BMJ Supportive & Palliative Care

  • Dr Chantal Patel - University of Swansea. Lecture in Medical Law and Ethics.

  • Dr Carmen Schmechel – Ph.D. Medical historian. She researches how concepts of disease form and develop historically, as well as how people cope with chronic illness, both in the past and in our times. Currently she holds a german research council- funded postdoctoral fellowship at the Freie Universität Berlin

  • Dr Leena Sinha – Consultant gastroenterologist, Romford, Essex, Local Ethics Lead

  • Professor Rajan Somasundaram- Head of Emergency Medicine, Hepatologist, Charité Campus Benjamin Franklin, Berlin

  • Reverend Dr Peter Speck – Healthcare Chaplain, Senior Lecturer, Kings College London (spiritual care at end of life)

  • Dr Selena Stellman – GP, London; chronic pain researcher, Council Member Institute of Medical Ethics

  • Richard Stephens – Patient representative with numerous organisations, Co-Editor-in-Chief  BMC Journal of Research Involvement & Engagement

  • Dr Jacques Tamin – Retired Occupational Physician, Lecturer in Ethics, University of Manchester

Administrative support

  • Dr Steven Walker – Director, St Gilesmedical London & Berlin

  • Daniel Roberts - Office and accounts manager, St Gilesmedical, London

Aims of the Group

  • Make a real difference to the lives of forgotten patients, families, and society.

  • Create an umbrella organisation which unites and campaigns for all stakeholders.

  • Reignite interest in potentially valuable health initiatives that have fallen by the wayside. 

 

Background

The focus of modern healthcare is the delivery of guidelines-focused, investigation-driven treatments for common diseases which fit into recognised categories. Unfortunately, management tends to fail when faced with a challenging person exhibiting unusual symptoms or complex needs. Some issues such as constipation are a problem for millions but receive limited clinical or research interest. There are also more than 7,000 rare diseases affecting approximate 1 in 17 of us (350 million people worldwide). Most sufferers are diagnosed late, if at all and are rarely offered curative treatment. Around of them 80% have a genetic basis which could be helped by gene editing technology.


Currently, there are many dedicated individuals and groups trying to fill the gap. Their organisations are usually small with few resources; often working in isolation. Alone, their impact and reach are likely to be limited, whereas together they might have a stronger voice with wider impact.  Care needs, research methodology and treatments could involve similar strategies, so that  gains from progress in one area are likely to be transferable to other diseases.


The group’s strategy is to explore one or more example diseases using a holistic, multidisciplinary approach which could apply to other conditions.  Among health problems of current interest to group members are Ehlers-Danlos syndrome (EDS), porphyria, fibromyalgia, and eosinophilic disease of the gastrointestinal (GI) tract. 

 
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Objectives

  • Develop a common strategy through the evaluation of several example health issues using a multidisciplinary approach.

  • Use this strategy in partnership with others to campaign for those with diseases where there is currently limited clinical, research and policy interest.

  • Develop and deliver understandable information for individuals, organisations, and policymakers.

  • Promote or deliver research, education, and practical help. 

  • Build a critical mass of interested individuals.

  • Obtain funding for a sustainable organisation with global reach. 

  • Approach medical organisations and make them aware of our findings 

 

We realise that the task of advancing the care of forgotten people with health issues, the treatment of forgotten diseases and interest in forgotten ideas is ambitious and extremely daunting but sense a willingness among many to try. Do join us! 

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.

 
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Advancing the group requires a mixture of short and long-term activities, quick wins, and credible projects to build momentum and engender respect. 

First steps – examining a disease in depth

 

To kick-start the group, it is proposed to examine several ‘forgotten’ disease areas, patient groups or lost ideas in detail to better understand how these could be advanced by a multidisciplinary approach:

Ehlers-Danlos syndrome

  • Pathophysiology

  • Presentation and symptomatology

  • Diagnostic criteria 

  • Current management

  • Disease course

  • Problems encountered by patients and families

  • Mapping of resources and support organisations. 

  • Co inheritance of overlapping chronic medical conditions (RCCX Theory).

…..and what is missing.

1.Search the literature, on-line resources and talk to patients, families, and experts to better understand:

2.Reach out to others:

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3.Research where information is missing in EDS:

  • This might include affected, their families and healthcare professionals to better understand: 

               1. work, disability discrimination, employer, and colleague attitudes
               2. delays in diagnosis and treatment in childhood leading to missed schooling and poorer educational attainment 
               3. The vicious circle of insecure jobs and poorer health
               4. Comorbidity correlations within personal and family history, clusters of symptoms (typically GI, bladder

                   dysfunction, migraine, non-epileptic seizures, skin reactions)
               5. Features secondary to environmental stimuli and mast cell activation syndrome (MCAS). 

4.Expand our group by reaching out to affect individuals, heath and social care professionals, commissioners, payers, and politicians.

5.Look for funding opportunities to support our activities.

6.Work towards a conference to discuss our experiences and future strategy.

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Different perspectives on Ehlers-Danlos Syndrome:

  • The patient

  • The family

  • The GP

  • The rheumatologist

  • The gastroenterologist

  • The neurologist

  • Psychologist/mental health specialist 

  • Public health

  • Scientific researcher

  • Spiritual

  • Ethics

  • The medical historian

  • The health campaigner 
     

Personal comments and 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.”
 

 
 
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