"Forgotten Patients, Overlooked Diseases and Lost Health Solutions"
December 14, 2022, at 02:00 PM (London)
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.
"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."
Read the full article on the BJGP website
Presentation at the Institute of Medical Ethics Annual Conference ‘Being Heard’
Birmingham, 30th June 2022
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
mutual respect as this is likely to improve trust and facilitate appropriate management of scarce resources,
recognition of the moral tensions when dealing with MUS patients because of uncertainty regarding a lack of diagnosis and previous experience of being disregarded,
better understanding of the tension that may also occur because of differing priorities for doctors and patients,
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.
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.