The lost patient and forgotten relative (free event in English)

## 1. The problem of being forgotten, overlooked, or lost within the health system - Steven Walker (20 mins)

## 2. Better together: how to become a supportive relative - Franziska Konig-Paratore (20 mins)

This is intended to be a relaxed, informal event which hopes to inform and stimulate dialogue. We have no hidden agenda, affiliation or desire to promote any particular viewpoint.

1. Treatment and support are available for most common diseases. For those suffering from a rare condition, there will usually be a society or self-help organisation. By comparison, there is a large group in the middle who may have symptoms but no clear diagnosis.

We will explore the issue of medically unexplained symptoms (MUS) i.e., where examination and investigations do not reveal a clear diagnosis. MUS are common, exhibit a spectrum of severity, and are encountered throughout the healthcare system. Sometimes they are the result of an initial misdiagnosis.

It has been estimated that MUS account for up to 45% of consultations.
Affected individuals often feel overlooked as they get shunted from one specialty to another, endure countless tests and a range of unsuccessful, sometimes harmful treatments. Those affected do not know where to turn and money and resources are wasted. Doctors often feel frustrated and poorly prepared to manage MUS.

Being labelled as having a psychosomatic illness or functional neurological disorder (FND) can exacerbate feelings of hopelessness and the development of chronic mental health issues. This is a challenging topic which is widely ignored and under-researched. We hope to explore some potential solutions.

2. Being a relative is not easy. Franzi is a sociologist. She will explore the issues she faces as a close relative of someone with a chronic, life-threatening disease. Acknowledging that we are all individuals and everyone's circumstances are different, Franzi will provide a personal perspective on how she has sought to cope as well as support the affected individual.