Christianne Forrest is a patient member of the Forgotten Patients, Overlooked Diseases charity, Swansea.
Minha Rajput Ray is an integrative medicine physician at Curaidh Clinic, Dundee.
Peter Speck is a researcher and visiting senior lecturer at the Cicely Saunders Institute, Kings College London, London.
Adrian Tookman is a palliative care physician and chair of the Forgotten Patients, Overlooked Diseases charity, London.
Steven Walker is director of Stgilesmedical in London and Berlin; tutor at the University of Applied Science (Apollon Hochschule) in Bremen, Germany; and trustee and secretary of the Forgotten Patients, Overlooked Diseases charity, London.
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.1 Limited data suggest that people with MUS frequently experience a cycle of regular medical attendances, inconclusive tests, and unsuccessful, potentially harmful interventions.2 Unsurprisingly, management of such individuals comes with a high socioeconomic burden.3 People feel lost within the health system not knowing where to turn, and are at risk of deterioration and mental illness.4
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.
Patient:
Christianne Forrest is a patient advocate from South Wales with her own lived experience as a breast cancer survivor and someone living with Ehlers-Danlos syndrome (EDS). She contrasts the efficient way her tumour was managed with the many years of interaction with HCPs in pursuit of an explanation for her diverse EDS symptoms:
‘For me the biggest challenges are not being listened to, lack of knowledge of some healthcare professionals, and an unwillingness to admit their lack of expertise and refer on to an appropriate specialist.’
“For me the biggest challenges are not being listened to …”
It is her experience that many patients in a similar situation are so desperate to be listened to that they worry about every element of their forthcoming medical consultation. This includes whether their demeanour and appearance will affect the way they are treated by HCPs:
‘Will doctors pay more attention to my physical symptoms if I present as confident, knowledgeable, and smartly dressed, or will I be dismissed as not appearing ill enough? Alternatively, will my physical symptoms be overlooked if I attend comfortably dressed, acting vulnerable and looking ill, since I might be deemed to be suffering from depression or “having let myself go”?’
The answer seems to depend on the individual HCP.
In Christianne’s case, she eventually obtained her diagnosis by being persistent, researching her symptoms, and through private funding. Unfortunately, despite knowing she has EDS, a hereditary condition, every new member of the family with similar symptoms who has sought a diagnosis has experienced issues, once again demonstrating the persistent challenges faced by many patients.
Academic and spiritual adviser:
Reverend Peter Speck is a researcher and visiting senior lecturer at King’s College London. In his long career as a healthcare chaplain, he has witnessed:
‘The frustration of patients repeatedly visiting the Emergency Department or GP surgery in the hope of getting a diagnosis for their symptoms.’
This creates uncertainty and anxiety. Such feelings are worsened when the HCP doubts the presence of a physical problem. This mindset can lead patients to underperform in daily life and create a sense of guilt or shame for letting others down, for example, by taking time off work or being unable to support their family.
“Helping these individuals in a clinical setting requires a multidisciplinary holistic approach.”
Helping these individuals in a clinical setting requires a multidisciplinary holistic approach. Peter highlights the importance of emotional and spiritual support for vulnerable patients and their families:
‘If you can establish a relationship of trust with the patient, you begin to explore together the impact of being a forgotten patient. In some cases, patients may feel this is the first time someone listened to them in a non-judgmental way, an important step forward.’
Affected patients often feel the need to prove that their experiences are real, especially if their condition is labelled as psychosomatic. The typical loss of self-worth or identity associated with such a label can result in many years of emotional upset. Without help, this can lead to further mental health issues.
Involving families in trying to resolve these problems is essential. This can be difficult where there is frustration and anger. A family member may need guidance in becoming more supportive or help in connecting with others who can assist. Whatever the circumstances, the psychosocial-spiritual care must be underpinned by a non-judgemental approach that acknowledges an individual’s personhood.
Doctor and patient:
Minha Rajput-Ray is both an experienced integrative medicine physician based in Dundee, Scotland, and a patient with complicated health issues. At a young age, Minha suffered a serious accident followed by a protracted recovery. Around the same time, she was diagnosed with a debilitating autoimmune illness:
‘Being in a wheelchair at the age of 18 years, I was viewed as a “crippled girl” with no future. One of my biggest difficulties was engaging healthcare professionals to work together for my care.’
“Central to this approach is a positive, ‘no blame’ attitude towards disability, infirmity, and illness … “
This has been instrumental in her appreciation of the effects chronic illness can have on individuals and their families. Further, she appreciates more than most how a lack of joined up healthcare services can impact diseases outcomes.
Decades later, after further injuries and health complications, she was motivated to take on the role of co-ordinating her own care pathway, and to seek alternatives beyond the limitations of the NHS framework.
Putting this knowledge to use led her to establish a dedicated clinic. The Curaidh Clinic model offers a coordinated, multidisciplinary approach for pain, chronic conditions, and work health. This bridges the gap between conventional medicine and out-of-the-box therapies for patients struggling with complex medical conditions.
Central to this approach is a positive, ‘no blame’ attitude towards disability, infirmity, and illness, and an acknowledgement when symptoms don’t fit recognised patterns. Her aim is to collaborate with others in building a safe space for vulnerable patients and to foster understanding between all stakeholders.
Palliative care consultant and senior manager:
Adrian Tookman is a recently retired specialist whose previous roles include being clinical director for the Marie Curie charity, medical director at the Royal Free Hospital NHS Trust, and consultant palliative physician at The Marie Curie Hospice in London. Currently, he is chair of the Forgotten Patients, Overlooked Diseases charity.
Over many years of practice, he sought to highlight the importance of the ‘patient’s story’. This is widely overlooked in the current healthcare system, where the emphasis is on performing tests rather than on spending time with patients:
‘When working with complex patients, you need to spend time to hear their stories — to listen and understand. Often, when you do this, you can work out their problems.’
What is needed is a more holistic approach, for example:
“… we seek to emphasise the need for kindness, empathy, acknowledgement of doubt, and time to talk, plus a plea for more resources to help patients and families.”
‘Instead of just treating vomiting due to gastroparesis, a physician should consider checking for signs and symptoms that could point to an underlying condition. As in Christianne’s story, co-existing joint hypermobility, stretchy skin, bruises, and scaring may be indicative of EDS.’
He stresses that physicians are dealing with a ‘Human being with feelings who may have a job and family. They are not just a “package with a label” to quickly move through the system but rather someone who is precious and vulnerable. Physicians must remember their approach impacts on people’s lives. The way we listen [to] and support patients are key and have long-term effects.’
Adrian reiterates his colleagues’ comments about the importance of patient empowerment. In reaching a diagnosis and formulating a treatment plan, HCPs should look beyond appearance and avoid snap judgements. In his view, resources for people with MUS are often missing:
‘If you have a diagnosis then there are usually people you can talk to, leaflets to read or advice to be found online. If you don’t have a diagnosis, then what is available is of little use without signposting. Those affected and their families can feel confused, frustrated, and overwhelmed as they frantically search for answers. What is needed are evidence-based resources to help those with MUS find their way.’
Conclusion
These four perspectives highlight the challenges faced by stakeholders in the care of patients with chronic unexplained symptoms. We do not offer solutions, rather we seek to emphasise the need for kindness, empathy, acknowledgement of doubt, and time to talk, plus a plea for more resources to help patients and families.
Acknowledgements
The authors would like to thank the following contributors for their editorial assistance: Bridget Ukeni, Kelly Langford, Irena Ivanova, Anam Wasim, Matthew Williams, and Sarah Nelson.
Competing interests
All authors are members of the multidisciplinary Forgotten Patients, Overlooked Diseases charity (registered charity number: 1202442; https://www.forgottenpatients.org). Minha Rajput-Ray is lead physician at the Curaidh Clinic, Dundee, Scotland (https://www.curaidh.com).
References
1. Chew-Graham CA, Heyland S, Kingstone T, et al. Medically unexplained symptoms: continuing challenges for primary care. Br J Gen Pract 2017; DOI: https://doi.org/10.3399/bjgp17X689473.
2. Noble B, Tookman A, Schmechel C, et al. The challenge of medically unexplained symptoms, overlooked diseases and forgotten patients. BJGP Life 2022; 12 Aug: https://bjgplife.com/the-challenge-of-medically-unexplained-symptoms-overlooked-diseases-and-forgotten-patients (accessed 21 Feb 2024).
3. Bermingham SL, Cohen A, Hague J, Parsonage M. The cost of somatisation among the working-age population in England for the year 2008-2009. Ment Health Fam Med 2010; 7(2): 71–84.
4. Dirkzwager AJE, Verhaak PFM. Patients with persistent medically unexplained symptoms in general practice: characteristics and quality of care. BMC Fam Pract 2007; 8: 33.
Featured photo by Eduardo Sánchez on Unsplash.
I would like to add my perspective/thoughts on MUS.
I really don’t understand why highly intelligent UK doctors haven’t questioned the ‘evidence’ and challenged the whole harmful concept of ‘medically unexplained symptoms’ or MUS on patient safety grounds.
Is it because they haven’t been told about the high MUS misdiagnosis rates that accompanied the high MUS prevalence rates in specialty clinics that they were told about? Did they fail to question and check up on misdiagnosis figures they were given, to see what they applied to and how sound they really were? Were they perhaps convinced by the economic argument (some might say propaganda) that set MUS patients up as terrible resource wasters in an already overburdened struggling NHS? Were they horrified by reading that the costs of MUS equated to 10% of total NHS spend when the questionable estimate of its cost to the NHS was but a small fraction of that – just 10% of the spend on the working age population (see correction for ref 1)? Was it beyond them to question the estimate (see ref 3) and how it had been derived? Did they worry about their poor cancer patients being deprived of resources and their care being delayed by a flood of low-life attention-seekers? Could they have missed a moving posthumous August 2016 account in BMJ Opinion, warning that MUS could be cancer and it could happen to them? Is it just too tempting and convenient to have a waste bin they can throw difficult patients or harder to solve cases into?
Maybe it’s fear that prevents them from looking any closer? Could it be terror of causing their patients iatrogenic harm and of facing disciplinary proceedings or being struck off the medical register as a result? Perhaps they’ve been taken in by stories about truly horrible patients who could make them feel ill just by walking in the door and who have the power to make their working lives a misery? Or maybe they’re just sexist and want to believe that women are health anxious, neurotic hypochondriacs who don’t deserve good healthcare? Could some have fallen for the debunked conversion hypothesis (that even FND/past conversion disorder proponents now appear to view as pseudoscience) and, filled with abounding empathy, felt the pain themselves of their poor patients whose bodies are supposedly punishing them again in all sorts of bizarre ways for their past trauma and distress? Have they taken on trust the MUS guide that indicated that women are more at risk? Did they fail to spot that referenced papers in the same guide found that not to be the case? Have doctors never heard of self-fulfilling prophecy? So many questions.
It seems to me that some deeply troubling things have been said and written about MUS but these have broadly gone unquestioned and unchallenged by the medical community. It’s high time, I think, that medics started questioning and challenging what they’re taught, especially when it’s related to reducing costs in the NHS and may limit physical healthcare to a group that’s being promoted as being predominantly female. MUS misdiagnosis rates may well be high or very high, unacceptably high even, around 38% for cardiology and 40% for rheumatology perhaps when less senior members of staff are involved, as they were with the NImnuan et al study that’s much cited for MUS prevalence. Prevalence of MUS in primary care will always be high because unexplained symptoms are the reasons that most patients go to their doctors in the first place. Symptoms remaining unexplained after consultation and basic investigation points not to psychosomatic problems but to a failure of medics, medicine and science to find the cause. More investigation and research is needed then, not less. Iatrogenic harms can be prevented by discussing risk adequately with patients instead of playing God.
Let’s go back to the good old days when, if a cause could not be found, the diagnosis was left truly open, patients were told to come back if they didn’t recover or if things got worse and they weren’t labelled ‘frequent fliers’ or ‘heartsinkers’ for doing so. The patient returning was a sign that something was really wrong, (and not with their mind). They weren’t branded with some somatization code that prevented them from getting an objective second or third opinion elsewhere. And let’s go back to a time, (if there ever was one), when women didn’t have to tie themselves up in knots wondering how they should look, dress and perform to stand a chance of their doctors believing them. This is no rarity, I’m sure that many women feel this way.
It’s International Women’s Day this week so please do women proud, believe them about their symptoms and press for the investigations and good biomedical research that they need and deserve. And do this for all your patients, there are a good many men who have suffered appallingly from the austerity-driven cost-cutting MUS project too but, as far as I can see, the NHS does not monitor any harms arising. In my opinion, MUS is an absolute disaster for UK medicine that leaves millions of patients, especially women, with failing health and no place to go. It has turned into the monster it is because doctors seem to trust what they’re told and, for whatever reason, maybe the best of reasons, don’t find the time to scrutinize the ‘evidence’ that’s supposed to back it up.