1st May 2024
Medically Unexplained Symptoms - breaking the cycle of tests, referrals and unsuccessful treatments.
Trying to help people with chronic medically unexplained symptoms (MUS) is challenging.
This remains a largely ignored and under-researched topic despite the large number of affected individuals and huge sums of wasted money and resources. Healthcare professionals feel frustrated whilst patients feel lost, overlooked and forgotten in the health system. Without a clear diagnosis, sufferers often find themselves in a cycle of tests, referrals, and unsuccessful treatments without achieving a resolution of their problems. Many experience mental health problems.
We wish to change this by providing resources and supporting research.
We are a registered charity under Forgotten Patients, Overlooked Diseases (#1202442).
Recent events and publications
Forgotten Patients, Overlooked Diseases and Lost Health Solutions
held on Dec 14, 2022
2:00 PM in London
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. Members of the research and medical communications community are generally familiar with helping these groups.
By comparison, there is a sizeable number of people who may have complex, medically unexplained symptoms but no clear diagnosis. It is 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 while money and resources are wasted. Being labelled as having a functional or psychosomatic illness may compound their problems resulting in chronic mental health problems.
During this webinar, we highlight the ‘Forgotten Patients’ group, examine with examples why the patient journey can go wrong and explore whether some previously proposed health solutions might be of value.
WATCH INDIVIDUAL SESSIONS
"The challenge of medically unexplained symptoms, overlooked diseases and forgotten patients"
BJGP Life, August 12, 2022
Primary care can do so much but not everyone benefits. Some patients with medically unexplained symptoms (MUS) suffer years of referrals and inconclusive tests. Others find themselves overlooked by health care services and feel forgotten. Their voices are unheard, they are unable to find a way forward through the system. Diagnosis may be delayed when the disease is unfamiliar to the doctor, or when the physician incorrectly presumes a functional or psychogenic cause while failing to recognise an underlying pathological process. People in this ‘no man’s land’ may receive inappropriate and even harmful treatment. They risk mental health problems after being repeatedly told pain is “caused by past trauma or by stress”, or that it is “all in their head”.
Bill Noble, Adrian Tookman, Carmen Schmechel, Richard Stephens, Christine Oesterling,Karim Jani, Revd Peter Speck, Eva Diehl-Wiesenecker, Katia Chrysostomou, Steven Walker