This video was not produced by NetworkPharma.tv but has been included within the library because it is directly relevant to individuals who work in medcomms and is here with permission from its owner.

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This multidisciplinary webinar was presented on the 14th of December 2022 and supported by the MedComms Networking community. Following a brief introduction, there are six presentations followed by a Q&A session and a summary by the chairs.

What is this all about?

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. Member of the research and medical communications community are generally familiar with helping these groups.

By comparison, there is a sizable proportion of people in the middle who may have complex, medically unexplained symptoms but no clear diagnosis. It estimated that up to 50% of GP consultations do not result in a clear diagnosis. Often, affected individuals feel overlooked as they get shunted from one specialty to another, endure countless tests and are tried on a range of unsuccessful treatments. People do not know where to turn and money and resources are wasted.

Our hope is to highlight this ‘Forgotten’ group, examine with examples why the patient journey can go wrong and explore potential health solutions.

PROGRAMME

14:00-14:10: Introduction – Dr Adrian Tookman & Dr Steven Walker

14:10-14:30: The forgotten patient journey and where it can go wrong – Katia Chrysostomou, & Christianne Forrest (patient story)

14:30-14:50: Unexplained symptoms in A&E and primary care – Dr Eva Diehl-Wiesenecker & Dr Carmen Schmechel

14:50-15:10: Medical ethics perspective: the importance of making a diagnosis even if there is no cure – Dr Chantal Patel, Dr Kiran Jani & Christianne Forrest (Patient)

BREAK 15:10-15:25

15:25-15:45: The physician’s perspective; The importance of patient stories and diagnostic uncertainty – Dr Adrian Tookman & Dr Minha Rajput-Ray

15:45-16:05: Perspectives of patients, families, and society; The cost of living with forgotten diseases and unexplained symptoms – Dr Jacques Tamin, Franzi Koenig-Paratore & Rev Dr Peter Speck

16:05-16:25: How might forgotten health initiatives and new technology help the patient journey – Achim Kautz & Julia Eder

16:25-16:50: Panel discussion; New thinking and solutions – Minha & Katia

16:50-17:00: Summary – Adrian & Steven

Recorded as a live webinar, 14 December 2022, by the Forgotten Patient Group and is included here with their permission.

You can find out more about the Forgotten Patient Group at https://www.forgottenpatients.org/

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We are building a library of free webcasts and other video content for the global MedComms Community and others at http://www.networkpharma.tv and we’d welcome your suggestions for new content.