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MUS Conference

Medically Unexplained Symptoms

1st May 2024

Management of people with chronic medically unexplained symptoms (MUS), persistent physical symptoms or have been labelled as suffering from a somatic disorder is challenging for all stakeholders. This remains a widely ignored and under-researched topic despite the large number of affected individuals and wasted resources. Healthcare professionals feel frustrated whilst patients feel lost/overlooked/forgotten in the health system. In the absence of a clear diagnosis, sufferers often find themselves in a cycle of tests, referrals, and unsuccessful treatments without achieving resolution of their problems. We wish to change this.

This low-cost, multidisciplinary 1-day educational conference (CPD points applied for) developed in conjunction with senior members of the Royal Society of Medicine GP and Primary Care Section (RSM) and the Forgotten Patients, Overlooked Diseases charity (FPOD) will explore the topic from different perspectives and seek potential solutions.

Our venue is the amazing RFSK, an oasis of calm in East London.

News

Registered Charity

March 2023

We are pleased to announce that we have officially been recognized as a charity (#1202442).

This is our charity symbol: a tree of knowledge containing a maze the  patient has to negotiate. Below is a 'lost' person.

Doctor won't take your pain seriously? These are the key words and phrases that'll make them sit up and listen… by Jo Waters

January 2023

https://www.dailymail.co.uk/health/article-13019353/doctor-gaslighting-symptoms-taken-seriously.html

In an article entitled ‘What to do if your doctor won’t listen’ the Daily Mail addresses the problem of patients feeling unheard by their doctors and being told their symptoms “are all in the mind”.

 

The problem of medically unexplained symptoms will be addressed in a multidisciplinary conference in London on 1st May 2024. All are welcome. Please register at https://www.forgottenpatients.org/upcoming-conference 

In her January 30th article, Jo Walters highlights key strategies for patients to effectively communicate their pain to doctors. Walters emphasizes the importance of using precise language and specific descriptors such as "stabbing," "throbbing," or "burning" to convey the nature of the pain. Additionally, she suggests mentioning the impact of the pain on daily activities and quality of life, including sleep disturbances or difficulty performing tasks. By employing these targeted phrases and articulating the personal toll of their pain, patients may better engage doctors and ensure their concerns are taken seriously, ultimately improving the likelihood of receiving appropriate treatment and support.

Article image
Article image

Webinar

"Forgotten Patients, Overlooked Diseases and Lost Health Solutions"

December 14, 2022, at 02:00 PM (London)

This is our medical artist associate, Tony Pickering, struggling with diabetes.

Watch the full webinar here 

Image by Tony Pickering

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.
 
Our hope during this webinar is to 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.

Webinar 2022

Article

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

BJGP Life, August 12, 2022

Featured image: Forgotten gloves by the kerb, by Andrew Papanikitas, 2022

Featured image: Forgotten gloves by the kerb, by Andrew Papanikitas, 2022

Excerpt

"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."

Read the full article on the BJGP website

Article The Challenge
IME Conf 2022

IME Conference

Presentation at the Institute of Medical Ethics Annual Conference ‘Being Heard’

Birmingham, 30th June 2022

Report

Dr Chantal Patel and Dr Adrian Tookman presented a paper entitled ‘The challenge of medically unexplained symptoms: centring the patient’s voice. A multidisciplinary perspective.’ Kiran Jani and Steven Walker also attended. Together the foursome manned a stand in the poster area, spoke with delegates and gave out flyers on behalf of the Forgotten Patients, Overlooked Diseases’ Group. There was much interest and a few challenging medical tales to share.

Chantal started her presentation by defining what medically unexplained symptoms (MUS) are: ‘persistent bodily complaints for which adequate examination does not reveal sufficiently explanatory structural or other specified pathology’. She went on to say that patients experiencing symptoms for which there is not a clear diagnosis often feel their symptoms are not believed. Or, patients may well be subjected to inappropriate referrals. In addition, many patients have reported a lack of support for their emotional wellbeing (Burton et al. 2012).

On the opposite side of the table, doctors, in particular GPs, have reported less satisfaction when caring for patients with MUS (Wileman et al. 2002) as well as a sense of powerlessness during consultation which directly impacts the patient with MUS:

 “Some make your stomach churn when they come in … very nervous. They make it very clear they are taking charge; and they do, they take charge, and there is nothing you can do."

(GP quoted in Wileman et al. 2002).

 

MUS are common, with a spectrum of severity, and patients are found everywhere within the healthcare system. It has been estimated that MUS account for up to 45% of all general practice consultations, while a study based in secondary care indicated that about 50% of patients had no clear diagnosis at 3 months.

NHS costs for MUS is estimated at around £2.89 billion in 2008 and sickness absence costing the UK economy in the region of £14 billion, notwithstanding the personal cost to the individual patient.

What generally happens to such patients?

  • Patients’ symptoms are dismissed as ‘all in the head’.

  • Patients are referred to a number of specialists.

  • Patients are treated for some of the symptoms.

 

Chantal went on to argue that, given the emphasis on patient-centred care, it would be ethically justified to adopt a new approach to minimise the snowball effect of delayed and incorrect diagnosis. Further, there is an ethical imperative to embolden and empower patients with a voice, as well as to equip healthcare professionals (HCPs) with skills that go beyond guidelines and standardisation.

Next, Adrian reflected from his perspective as retired palliative care physician on ‘Forgotten people, overlooked diseases and the power of doubt.’ He started off by presenting two impactful case histories involving young women with Ehlers-Danlos syndrome (EDS), hypermobile spectrum disorder (HSD) and their multiple symptoms and long medical journey. One sadly committed suicide. Adrian shared part of her final letter that he received from her.

Building on these patient stories, Adrian went on to say that labels are DANGEROUS if they are incorrect and that a physical diagnosis can be important even if there are no treatment options.

Going forward, forgotten people with overlooked diseases need a platform to explore their symptom burden and to be listened too; we must learn from them. Many will already have already searched the internet and self-diagnosed – often they are right! We need systems and processes to explore the OMG patient!

Regarding doubt, clinicians need to acknowledge their limitations. Doubt and uncertainty should be seen as a positive attribute not a failure. The tick box approach has a place in patient care but we need a system that facilitates clinicians and explores their doubt and uncertainty. Unfortunately, specialist healthcare is delivered in 'silos' and what is needed are systems for cross-specialty communication. The ‘Art’ of medicine can be as important as the ‘Science’ of medicine.

Returning to Chantal, she made a plea for the ethical imperative and moral challenges of hearing and listening to the patients. Essential elements include

  1. mutual respect as this is likely to improve trust and facilitate appropriate management of scarce resources,

  2. recognition of the moral tensions when dealing with MUS patients because of uncertainty regarding a lack of diagnosis and previous experience of being disregarded,

  3. better understanding of the tension that may also occur because of differing priorities for doctors and patients,

  4. adoption of a medical model that limits exploring doubts & uncertainties.

 

Regarding advocacy, this means to focus on patient’s stories and recognize one’s limitations as a doctor.

References

  • Burton C, McGorm K, Richardson G, et al.: Healthcare costs incurred by patients repeatedly referred to secondary medical care with medically unexplained symptoms: a cost of illness study. J Psychosom Res. 2012;72(3):242–247.

  • Wileman L, May C, Chew-Graham CA. Medically unexplained symptoms and the problem of power in the primary care consultation: a qualitative study. Fam Pract. 2002 Apr;19(2):178-82.

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