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We realise that the tasks of advancing the care of forgotten patients, the treatment of overlooked diseases, and an interest in lost ideas are ambitious and extremely daunting.


But, we sense a willingness among many to try.

 

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, 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

Founding members

Katia Chrysostomou – London, UK
Dr Eva Diehl-Wiesenecker – Berlin, Germany
Dr Kiran Jani – Stevenage, UK
Katharina Klesper – Meerbusch, Germany
Dr Carlos Lifschitz – Buenos Aires, Argentina
Dr Philip Lodge – London, UK
Prof Bill Noble – Sheffield, UK
Dr Chantal Patel – Swansea, UK
Dr Carmen Schmechel – Berlin, Germany
Dr Leena Sinha – Romford, UK
Prof Rajan Somasundaram – Berlin, Germany
Rev Dr Peter Speck – London, UK
Dr Selena Stellman – London, UK
Richard Stephens – Stevanage, UK
Dr Jacques Tamin – Manchester, UK
Dr Steven Walker – London & Berlin
Dr Christina Weiler-Normann – Hamburg, Germany

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.”