Ambivalent care: when patients feel unheard and unsupported

Nina Smyth, Damien Ridge, Ashish Chaudhry, Dipesh Gopal, Nisreen A Alwan, Tom Kingstone Samina Begum, Alex Broom & Carolyn A. Chew-Graham.*

Clearly, there are conditions where evidence, available treatments or specialised support are limited, or symptoms overlap with other conditions. Some examples include, people presenting with persistent symptoms labelled Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia, post-COVID-19 syndrome (known as Long Covid), chronic pelvic pain, and temporomandibular disorder (TMJ) dysfunction. Such conditions may be associated with stigma.¹ A patient may present to a clinical service with symptoms which do not fit into a clear diagnosis, leaving no clear management plan.

Through this article we discuss patient experiences. We hope that clinicians will be able to reflect on patients they see presenting with complex or stigmatised conditions, and how this influences their emotions, interactions and consultations.

Patients seeking care for complex and/or stigmatised conditions report feeling dismissed or disbelieved when seeking healthcare. The care received can appear vague or unhelpful, leaving them feeling unheard and unsupported.² This can be especially common for people from marginalised or minoritised groups who may experience challenges due to not being able to articulate their symptoms well, language barriers, poor health literacy and experiences of stigma and discrimination.^2,3

Imagine your typical full Monday morning clinic. You are managing prescriptions, follow-ups, and referrals between appointments. Consider what emotions may arise as you are encountered with the hypothetical patient scenarios presented below. Are you able to attach labels to these emotions – identify what you are feeling? Consider how these feelings could shape the care you provide.

Robin, White male, aged 38 years

• Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
• Reports not being offered help and appears upset and angry
• Says “nobody is doing anything”. Their records suggest numerous consultations, repeated investigations and multiple referrals to specialist care

Sarah, Mixed-race female, aged 34 years

• Requests further investigation worsening pelvic and abdominal pain
• Says she is upset after being told about normal test results despite ongoing symptoms
• Seeking a further referral to gynaecology because symptoms are persistent and pain worsening

Jamal, Afro-Caribbean male, aged 55 years

• Presents with persistent symptoms of breathlessness, brain fog and extreme tiredness
• Says they are feeling lost and confused and searching for support from a caring clinician
• Wants further investigation of symptoms recommended by a private clinician – requests ‘mitochondrial function test’

Clinical uncertainty

As a clinician, do you find it challenging to treat patients with symptoms that are difficult to understand, explain or manage? Or manage a patient whose symptoms persist yet investigations are normal? Have you felt constrained by limited access to local specialist support?

Supporting patients with complex, uncertain conditions can be challenging, negatively affecting a clinician’s own wellbeing.^4,5 It can be challenging communicating with these patients.⁶ Clinicians may experience sadness, guilt, frustration, indifference, or even numbness when caring for complex or stigmatised conditions. It may be easier in the moment to associate a patients’ symptoms with stress, anxiety or lifestyle factors when there is no obvious medical cause or support available. It may feel harder to say, “I do not know what is wrong” to the patient or reflect that “I currently do not have the resources to treat or manage this patient.” It may seem easier to give vague or unclear advice than to admit uncertainty. But this can lead to a patient feeling dismissed, unheard and unsupported.

The dismissed, unheard and unsupported patient

Imagine experiencing pain, fatigue, and brain fog that disrupt your daily life, yet being told after months of suffering that ‘there’s nothing wrong with you’. Our research with people from ethnic minority groups living with Long Covid shows the toll of such ambivalent care:  

‘…that made everything even worse. I just felt very, very alone with no one to support me or talk to me … I really did feel very, very alone and isolated at that point’ (Patient with symptoms of Long Covid).²

For patients from minoritised or marginalised groups, these experiences are intensified by discrimination and gender bias. A person from an ethnic minority background may experience discrimination and stigma within healthcare and within their communities. A woman, for instance, may feel her symptoms are not taken as seriously as a man.

People living with ME/CFS, chronic pelvic pain, or other poorly understood conditions, often describe disbelief and dismissal from clinicians. Many with ME/CFS report long struggles to obtain a diagnosis or effective support:

‘…I was extremely tired and struggling…and he just, he didn’t really take me seriously.…He [clinician] appeared very distracted, not interested…’ (Patient with symptoms of ME/CFS)⁷

Similarly, patients experiencing chronic pelvic pain, when no physical cause is found are left with persistent physical pain or symptoms are left medically unexplained:

‘With this, I was so upset and embarrassed that I did not return to the doctor for a long time but “put up with it” – assuming, that as I had been told everything was normal, it was just something to be endured.’ (Women patient with chronic pelvic pain)⁸

In the UK, growing attention to women’s health inequities and the impact on daily lives is highlighted in a recent parliamentary report and media coverage on ‘medical misogyny.’^9,10 Patient accounts show the impact on education, relationships and fertility, and they underscore the urgency of addressing such ambivalent care.

The emotional burden of telling someone you are unwell and not being believed can sometimes be worse than the symptoms experienced. This can affect patients’ mental health and mean patients find it extremely challenging to seek future care, even for new or other conditions. Our research, and many other research studies, show that it isn’t the complexity of a patients’ symptoms that are most frustrating or emotionally taxing but it is the lack of acknowledgement, recognition and validation of their symptoms from others.^2,11,12 Patients leave healthcare consultations feeling unheard, with vague or inconsistent advice or support. Some may lobby others to advocate for their care, or be persistent in seeking help to get support, investigations or treatment. Overall, this can result in mistrust and fear in the healthcare system and can exacerbate health inequalities.^2,3 Gaining access to ‘adequate’ care can require persistence on the part of patients or their advocates to ensure they receive appropriate tests, investigations or referrals to specialist support.^2,11,12 Some people may seek private or overseas healthcare which can create further challenges when seeking follow up from the NHS.

Ambivalence in patient care

To describe patients experience of care that feels dismissive, vague and distant, we use the terms ’medical ambivalence’ or ‘ambivalent care’. We use these terms to describe patient accounts of seeking care for complex conditions that may be stigmatised or poorly understood, such as Long Covid. Understanding ambivalent care in practice from clinicians’ perspectives and other complex, resource-limited or stigmatised conditions is needed.

When patients feel the clinician is dismissive, lacks empathy and does not validate their symptoms, the clinician can appear uncaring. This reinforces inequities in care and invalidates patients suffering.¹³ Ambivalence in care can be shaped by societal structures, biases and stigma – ambivalence arising from social and cultural subconscious biases.

People from marginalised or vulnerable groups often face an added layer of inequity when seeking support for such conditions. For example, in the context of misogyny, women seeking help for chronic pelvic pain described being told their symptoms were psychological, leading to delayed diagnosis and treatment. Our Long Covid research¹³ showed that patients perceived their ethnicity, or gender negatively influencing their quality of care. Dismissive care can negatively impact mental health and have social and economic consequences, such as, difficulties in returning to work and the minimising of women’s support needs. Those with Long Covid may find that the healthcare system is unhelpful due to a lack of understanding of the condition, little incentive to investigate people’s symptoms, and a lack of treatment options. The stigma associated with certain conditions, and people who live with them, and the biases people may have about a person’s characteristics (e.g. ethnicity or gender), can make it doubly difficult for patients to access care and support.¹ Some patients turn away from the NHS, seeking support from private care, community networks (including religion, friends, families and neighbours), charities, or online support groups.

Recognising Ambivalence in Practice

Ambivalent care may be unintentional; clinicians may not recognise that they are delivering it. How can you spot when you may be dismissive, vague or emotionally detached from a patient? It may be signalled by a negative reaction to patient complaints or their symptoms. Or a challenging consultation where you feel uneasy or uncomfortable. Or perhaps you felt a lack of connection to the patients’ narrative, leaving you with little or no empathy for the patient or desire to help them. Maybe you find yourself making assumptions about the patient, especially to do with their circumstances (lifestyle choices, ethnicity, gender or health-related behaviours)?

In practice, clinicians can assess their own levels of ambivalence in the care they deliver. One way to do this is through self-reflection. Using reflection to identify emotions can be a powerful learning tool¹⁴ to help ‘take a step back’ to reframe an emotional response to patient-raised concern and acknowledge prejudice.¹⁵ Through self-reflection, emotional intelligence, metacognitive and situational awareness can be enhanced. This can help recognise biases to situations and nurture empathy, which may help manage patients presenting with clinical complexity and uncertainty.^16-18

We suggest that acknowledging your feelings through identifying emotional experiences (which may be difficult to catch). Your reactions to patients can help you identify when you may be unintentionally ambivalent in the care you provide. This offers a learning point where you can identify feelings and understand how these may be shaped by internal biases or wider systemic pressures. To do this it may help to pause and reflect on:

• Have you made assumptions about the patients’ background or symptoms?
• Did you believe or acknowledge the patients’ experiences?
• What emotions did this patient evoke in you?
• If you can identify emotions experiences, did they impact your interactions with the patient?

‘Ambivalent care’ could be a topic for a practice team discussion to foster collective awareness and shared learning, or covered in appraisal discussions.

Once we identify ambivalence in our care, we can re-orientate ourselves to what patients’ value: warmth, understanding and belief from their clinicians.¹⁹ This can be achieved through:

• Listening actively and empathetically to the patient’s concerns
• Acknowledging the legitimacy of symptoms, even when causes are unclear or there is no clear management plan
• Validating the patient’s story using compassionate language e.g. acknowledging, warming and caring
• Signposting to appropriate support beyond the GP – online or in person support through the voluntary and community sectors (national or local) or faith organisations. Consider whether social prescribing may help. It is important to signpost to culturally sensitive resources.

Becoming more aware of your emotions when confronted with uncertainty in care can help to identify how these come about (e.g. unconscious biases) and help you adjust your interaction with a patient to offer more equitable care. This approach helps maintain supportive therapeutic relationships whilst navigating uncertainty and deliver care that values fairness, recognition and empathy which is care valued by patients.¹³

An overlooked factor to delivering quality healthcare is unintentional ambivalence in care. We believe that understanding how this may arise, and how to mitigate it, is crucial for improving both patient and clinician wellbeing, and for delivering equitable healthcare.

References

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*Author Biographies

Nina Smyth is a Reader in Psychology at the University of Westminster. Damien Ridge is Professor of Health Research at the University of Westminster. Ashish Chaudhry is a GP at Lower Broughton Health Centre, Differential Attainment Champion at Salford and Trafford GP Training scheme, NHS England. Dipesh P Gopal is a GP and National Institute for Health and Care Research School for Primary Care Research Primary Care Clinicians Career Progression Fellow at Queen Mary University of London. Nisreen A Alwan is Professor of Public Health at the University of Southampton and Honorary Consultant in Public Health at University Hospital Southampton NHS Foundation Trust. Tom Kingstone is a Senior Lecturer in Mental Health and Wellbeing at Keele University and Director of the ‘Supporting The Advancement of Research Skills Programme’ at Midlands Partnership University NHS Foundation Trust. Samina Begum is a member of the patient advisor group for the Hearing from the unheard: impact of Long Covid in Black and minority ethnic groups in the UK (HI-COVE) study. Alex F Broom is Professor of Sociology and Director, Sydney Centre for Healthy Societies at The University of Sydney, Sydney, Australia. Carolyn A Chew-Graham is a GP in Manchester and Professor of General Practice Research at Keele University.

Featured photo by Jr Korpa on Unsplash.