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1st May 2024

Medically Unexplained Symptoms

Breaking the cycle of tests, referrals and unsuccessful treatments: a multidisciplinary conference​​

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.

Recent events and publications

ONLINE WEBINAR

Forgotten Patients, Overlooked Diseases and Lost Health Solutions

held on Dec 14, 2022

2:00 PM in London

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. 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

PUBLICATIONS

Medically unexplained symptoms: four perspectives

BJGP Life, March 4, 2024

Image of four telephones on the title page of an article presenting four perspectives on medically unexplained symptoms.

Featured photo by Eduardo Sánchez on Unsplash.

ABOUT

Managing individuals with persistent symptoms but no clear diagnosis is a common and challenging problem in primary care. Here, the term medically unexplained symptoms (MUS) is frequently used. MUS generally refer to persisting physical complaints for which clinical examination and investigations have so far failed to find a cause. Limited data suggest that people with MUS frequently experience a cycle of regular medical attendances, inconclusive tests, and unsuccessful, potentially harmful interventions. Unsurprisingly, management of such individuals comes with a high socioeconomic burden. People feel lost within the health system not knowing where to turn, and are at risk of deterioration and mental illness.

 

In this article, we offer four perspectives from patients and healthcare professionals (HCPs) with the aim of reminding ourselves of the challenges faced by some of those affected.

AUTHORS

Christianne Forrest, Minha Rajput Ray, Peter Speck,

Adrian Tookman, Steven Walker

"The challenge of medically unexplained symptoms, overlooked diseases and forgotten patients"

BJGP Life, August 12, 2022

Image of gloves lying in the road over double yellow lines symbolizing 'lost' patients with medically unexplained symptoms.

Image: Forgotten gloves by the kerb, by Andrew Papanikitas, 2022

ABOUT

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”.

AUTHORS

Bill Noble, Adrian Tookman, Carmen Schmechel, Richard Stephens, Christine Oesterling,Karim Jani, Revd Peter Speck, Eva Diehl-Wiesenecker, Katia Chrysostomou, Steven Walker

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