Dismissive consultations leave some autoimmune patients distressed and suicidal

Patients have been left feeling suicidal after feeling like their doctor was saying their symptoms were 'all in their head' – according to research from the University of East Anglia and the University of Cambridge.

A new study uncovers concerns about misdiagnosis, stigma and inconsistent care for people with autoimmune diseases who are also diagnosed with functional neurological disorder (FND).

It also reveals deep disagreements between clinicians over FND diagnoses.

The research team say better communication, multidisciplinary working and more holistic care are needed to improve patient outcomes.

Lead author Dr Melanie Sloan, from UEA's Norwich Medical School and the Department of Public Health at the University of Cambridge, said: "FND is a recognised neurological condition that can cause symptoms such as weakness, shaking, changes in movement or feeling, and non-epileptic seizures.

"These symptoms are real and are not made up or under a person's control.

"We wanted to better understand the challenges of diagnosing complex neurological symptoms in autoimmune diseases, and why patients and clinicians can sometimes see things very differently.

"Ultimately, our aim was to identify practical ways to improve communication, reduce distress and help ensure patients receive the most appropriate care and support."

How the research happened

The research team explored how FND diagnoses are used and understood in people with autoimmune diseases, and where disagreements arise between patients and clinicians.

Researchers analysed responses from international surveys involving 1,853 patients, 400 clinicians and 463 members of the public, as well as conducting in-depth interviews with patients and doctors.

They examined how complex neurological symptoms in autoimmune diseases are diagnosed, interpreted and communicated in real-world healthcare settings.

They found that while 86 per cent of patients agreed that a diagnosis of depression was correct, only 53 per cent agreed with a diagnosis of fibromyalgia and 30 per cent agreed with a diagnosis of FND.

Deep divide

Only seven per cent agreed with being told that their symptoms were "psychosomatic".

Doctors taking part in the study described how difficult it can be to work out what is causing symptoms. Many said they had little training in FND and others had very strong opinions either for or against FND diagnoses.

Patients and doctors reported examples of symptoms being put down to the wrong cause, with misdiagnoses reported in both directions.

We still do not know enough about some of the ways autoimmune diseases affect the brain and nervous system to always be certain what is causing a particular symptom.

FND is a real condition and people with FND need the right treatment. But we need to be careful about assuming we know the cause of every symptom and coming to quick conclusions. There may be many different causes of neurological symptoms in autoimmune diseases which are very hard to untangle.

Clearer explanations of diagnoses could help patients understand and accept them, while doctors need to be cautious when the cause of symptoms is not clear."

Dr. Melanie Sloan, UEA's Norwich Medical School

How a diagnosis is explained matters

The study found that the way a diagnosis was explained could make a big difference to how patients felt about it and that stigma played a role.

Doctors (72 per cent) were much more likely than patients (50 per cent) or the general public (48 per cent) to say that mental-health symptoms were seen as more acceptable or less stigmatised when they were thought to be caused directly by the person's physical disease.

Patients left feeling suicidal

Some patients described feeling distressed when an FND diagnosis seemed to suggest that their symptoms were psychological or something they could control. Poor explanations could lead to feelings of guilt, shame, loss of trust with some expressing suicidal thoughts.

The problem of stigma was also highlighted by Prof Guy Leischziner, neurology consultant at Guys' and St Thomas' hospital. He said: "FND used to be known by a variety of outdated and offensive terms like 'hysteria', and some of the old ideas behind that term have unfortunately carried over into how people still think about FND today.

"It used to be thought that FND almost invariably had a psychological trigger, but we now know that this is not the case. There is also growing interest in how physical illnesses, including autoimmune diseases, may play a role in FND."

Why listening is key

The study found that patients were more likely to accept a diagnosis when doctors listened to them, explained why they thought a symptom had a particular cause, and explained how symptoms linked to FND differed from those caused by their autoimmune disease.

The researchers say better teamwork between rheumatology, neurology, psychiatry, patients and other specialists is needed, and listening - not just to a patient's symptoms but also what they feel may be the cause or causes.

When patients feel dismissed

Michael Bosley, a patient and one of the study's authors, said: "How doctors explain this uncertainty really matters. People need to know that their symptoms are being taken seriously, understand why doctors think a particular diagnosis fits, and feel able to come back if things change.

"The damage done by an explanation that's unclear, rushed, or doesn't acknowledge the patient's experience was clear, with several patients in our study reporting feeling suicidal after a unempathetic diagnostic consultation."

Patient and co-author Lucy Calderwood added: "I think one of the most concerning findings from our study is that getting one of these diagnoses may be more about the doctor's views and pre-judgements than about the patient's symptoms.

"So the same patient with the same symptoms could go to different doctors and one would say it was the autoimmune disease and another would say it is functional. And they'd get completely different treatment."

The findings come shortly after research from the same programme found that females were more likely than males to report that their symptoms had previously been put down to psychiatric or "psychosomatic" causes.

Together, the studies highlight the importance of listening to patients, being open about what we do not yet know, explaining diagnoses clearly and sensitively, and being more aware of gender and other biases in medicine.

Senior study psychiatrist Prof James Bourgeois, from the University of California, said: "The brain and the body are closely connected. Symptoms experienced by the brain such as depressed or anxious mood, confusion, or irritability go along with pain, weakness, and other symptoms of illness experienced in other parts of the body.

"Brain-related symptoms can be the first sign of illness, so doctors need to consider brain-related symptoms along with body-related symptoms. Brain-related symptoms are part of the illness and are not under the patient's direct control. Comprehensive care requires managing brain and body symptoms together in an integrated way, and doctors being honest about what we do not yet know."

This research was led by UEA in collaboration with the University of Cambridge, Guy's and St Thomas' Hospitals NHS Foundation Trust, King's College London, South London and Maudsley NHS Foundation Trust, Swansea University, St George's University Hospitals NHS Foundation Trust, Barts Health NHS Trust, the University of Ferrara and Azienda (Italy) and the University of California (US).

It was funded by The Lupus Trust.

'"False dichotomies" and "FND fundamentalists": an international mixed methods exploration of clinician and rheumatology patients' views and experiences of functional neurological disorder (FND) co-diagnoses' is published in the journal Rheumatology International.