“All in your head”- harmful & dismissive healthcare interactions in functional neurological disorder

April’s blog post comes from Dr Cate Bailey. Cate is a psychiatrist and started her MD(Res) degree at King’s College London in 2019. Her research topic is: Experiences, agency and explanatory models in patients with functional neurological disorders: a qualitative and quantitative study". April is FND month so it is timely to read about this poorly understood condition and the stigma associated with it.

The first time she had an attack, Charlotte waited anxiously, eyes closed against the dazzling fluorescence of the A&E cubicle. She could recall starting to shake and then blacking out just as she was about to give a presentation for university. The doctors had done some blood tests and a brain scan. Her body felt numb and tingly and she was worried she might have had a stroke. From behind the curtain she could hear a nurse talking to a colleague, “Oh she’s had one of those psychogenic seizures. Hopefully she’ll be discharged soon. We’ve got plenty of patients with real problems waiting.”

Eventually the doctor came and said there was nothing wrong with her and she could go home. He said that her GP could refer her to a psychiatrist. She had wanted to ask if she would have further attacks, and whether they could provide a sick note for her tutor. But she felt too ashamed and left as quickly as she could, frightened, exhausted and uncertain.

This fictional vignette is informed by qualitative studies of the experiences of people with functional neurological disorder (FND). FNDs occur when a person develops symptoms (such as weakness, numbness, tremors or seizures) which are not caused by neurological disease but have clear symptoms and signs. The symptoms can appear similar to epilepsy, multiple sclerosis or Parkinson’s disease. However, in FNDs the structure of the nervous system is normal but there is a problem with how the brain and nerves are functioning. People with FND experience levels of disability similar to other neurological disorders and FND accounts for up to 16% of neurology outpatient appointments (1). Yet it remains highly stigmatised and frequently misunderstood. Despite advances in neuroscientific understanding and treatments, healthcare professionals often continue to hold outdated and negative beliefs about FND being feigned or ‘psychogenic’ (psychological) in a pejorative sense (2).

How can sociology and philosophy help us understand attitudes to FND?

Developing a severe illness is frightening and life-changing and a time of vulnerability and uncertainty. Healthcare professionals have a role in making sense of these experiences, offering explanations, hope and treatment. However, research has shown that often in FND, healthcare interactions can be fraught and stigmatising. Medical sociology and philosophy of illness can illuminate the sociological processes behind stigma and dismissal of people with FND.

Stigma is a social process, which involves labelling, separation and stereotyping, underpinned by power imbalance and leading to loss of status and discrimination (3). A recent study by the charity FND Hope found that 85% of 503 patients globally felt disbelieved or dismissed by healthcare professionals (4). Beyond current healthcare interactions, patients were also impacted by ‘anticipatory stigma’ where 64% felt their diagnostic label would negatively impact future medical care quality. A recent paper on stigma and FND describes when healthcare professionals dismiss FND symptoms as ‘not real’ patients feel invalidated and/or angry, trust is broken and professionals label the interactions as ‘difficult’ (6). Patients do not benefit from encounters and seek help elsewhere. In both FND and other disorders stigma correlates with quality of life and mood.

Closely connected to stigma is epistemic injustice; a philosophical concept described by Miranda Fricker meaning the ‘wrong done to someone specifically in their capacity as a knower’ which is increasingly being examined in healthcare (7). In FND this can manifest as in the vignette above, invalidating Charlotte’s experience of an attack, labelling her as having ‘nothing wrong’ or it being ‘all in (her) head’, and reflected in this quote from a qualitative study of functional seizures - “I was pretty much told that my condition didn’t really exist and that I was just hysterical and an attention seeker” (5).

Epistemic injustice and stigma in FND operates beyond isolated clinical interactions. They also manifest in structural and systemic effects, such as delays to diagnosis, partly due to disparities in service and research funding and inadequate training in FND for healthcare professionals. Discrimination related to stigma also interacts with racism and sexism, which are increasingly understood to contribute to harm in medicine. Examples include pain being under-recognised in Black populations (8), and suboptimal cardiac treatment referrals and outcomes for women (9).

A way forward: collaboration and learning from lived experience

Recommendations to reduce stigma and improve outcomes need to work at multiple levels – including rigorous evaluation of stigma and injustice and developing co-produced education alongside people with lived experience (3).

My MD project, thanks to MHRUK, investigates both experienced and anticipated stigma and its relationship to mood and functioning. We will also conduct qualitative interviews and focus groups exploring what it is like to live with FND. This aims to contribute to a future where lived experience of people with FND can be valued alongside neuroscientific advances and to help clinicians and patients to better understand the condition.

April is World FND Month; see FND Hope’s website or twitter account for more information.

Thanks to my collaborators who commented on this blog @AbbyBradley89 @NormanPoole19 @Tim_R_Nicholson

Cate Bailey

References:

1. Stone J, Carson A, Duncan R, Roberts R, Warlow C, Hibberd C, et al. Who is referred to neurology clinics? - The diagnoses made in 3781 new patients. Clin Neurol Neurosurg [Internet]. 2010;112(9):747–51. Available from: http://dx.doi.org/10.1016/j.clineuro.2010.05.011

2. Barnett C, Davis R, Mitchell C, Tyson S. The vicious cycle of functional neurological disorders: a synthesis of healthcare professionals’ views on working with patients with functional neurological disorder. Disabil Rehabil [Internet]. 2020;1–10. Available from: http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=medp&NEWS=N&AN=32970485

3. Nyblade L, Stockton MA, Giger K, Bond V, Ekstrand ML, Lean RM, et al. Stigma in health facilities: Why it matters and how we can change it. BMC Med. 2019;17(1):1–15.

4. FND Hope. International Survey [Internet]. FND Hope Research. 2021. p. https://fndhope.org/fnd-hope-research/. Available from: https://fndhope.org/fnd-hope-research/

5. Robson C, Lian OS. “ Blaming, shaming, humiliation”: Stigmatising medical interactions among people with non-epileptic seizures. Wellcome open Res [Internet]. 2017;2:55. Available from: http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=pmnm&NEWS=N&AN=29152594

6. MacDuffie KE, Grubbs L, Best T, LaRoche S, Mildon B, Myers L, et al. Stigma and functional neurological disorder: a research agenda targeting the clinical encounter. CNS Spectr [Internet]. 2020;1–6. Available from: http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=medp&NEWS=N&AN=33267932

7. Fricker M. Epistemic Injustice. 1st ed. Epistemic Injustice: Power and the Ethics of Knowing. Oxfor; 2007.

8. Mende-Siedlecki P, Qu-Lee J, Backer R, Van Bavel JJ. Perceptual contributions to racial bias in pain recognition. J Exp Psychol Gen. 2019;148(5):863–89.

9. Breathett K. Latest Evidence on Racial Inequities and Biases in Advanced Heart Failure. Unequal Treat Confronting Racial Ethn Disparities Heal Care (with CD) [Internet]. 2020;1–6. Available from: https://www.acc.org/latest-in-cardiology/articles/2020/10/01/11/39/latest-evidence-on-racial-inequities-and-biases-in-advanced-hf