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"Advocacy requires us to focus on patient’s stories, acknowledge our limitations and have processes in place that facilitate and assist doctors who recognise there is a need to explore further."

Message from the chair

No one likes to feel forgotten

Chair Dr Adrian Tookman
Dr Adrian Tookman

My colleagues and I support the initiative called ‘Forgotten patients, overlooked diseases.’ Our multidisciplinary membership primarily from the UK and Germany is keen to support patients and their families who find themselves ‘lost’ by the healthcare system. They may have a rare but often swiftly identifiable disease. They may have a common, often straightforward to manage condition, but have been misdiagnosed or mislabelled.


The way in which people enter the health system is impacted by clinicians’ perceptions. This is especially the case when one changes from being a person with a clear identity to someone with no diagnoses or an incorrect label sitting in waiting room with other faceless labels. Not having a label or an incorrect label, feeling overlooked and not being able to progress to some sort of resolution creates huge tensions. A correct physical diagnosis can be important even if there are no treatment options.


Patients experiencing symptoms for which there is not a clear diagnosis often feel their symptoms are not believed on the one hand, and on the other hand may well be subjected to inappropriate referrals. In addition, many patients have reported the lack of support for their emotional wellbeing 


On the opposite side of the table, doctors, in particular GPs, have reported less satisfaction when caring for patients with medically unexplained symptoms (MUS) as well as a sense of powerlessness during consultation which directly impacts those affected 


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 are 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. 


Given the emphasis on patient-centred care, we believe that it is now justified to adopt a new approach to minimise the snowball effect of unduly delayed and incorrect diagnoses. Furthermore, 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 restrictive guidelines and standardisation. 


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


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 to explore their doubt and uncertainty. Unfortunately, specialist healthcare is delivered in ‘silos’ and what is needed are effective systems for cross-specialty communication. 


Advocacy requires us to focus on patient’s stories, acknowledge our limitations and have processes in place that facilitate and assist doctors who recognise there is a need to explore further. There needs to be recognition that  the ‘Art’ of medicine can be as important as the ‘Science’ of medicine.

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