FND - the psychiatric label women hospital patients are diagnosed with more than men

When a woman's pain, illness or disability cannot be diagnosed she is more likely than a man to be labelled with functional neurological disorder. Photo / Getty Images

Women being treated in New Zealand hospitals are twice as likely to be diagnosed with a functional neurological mental disorder than their male counterparts.

According to Ministry of Health figures released under the Official Information Act and obtained by the Herald, 1259 women were discharged from hospital with FNDbetween 2015 and 2018.

By comparison 576 men received the same diagnosis in those three years, as well as one person of unknown gender.

FND, also coded by hospitals as dissociative or conversion disorders, is a mental disorder where the person has physical symptoms that no medical condition, physical examination or testing can explain.

The diagnosis can be given by a psychiatrist or neurologist.

Women with medically unexplained symptoms or those with legitimate injuries and illnesses that are rare, chronic, misunderstood or simply disbelieved, are being given the label at an increasing rate.

One doctor who did not want to be named said an FND diagnosis made it virtually impossible for the patient to get any further treatment because of the stigma attached to it.

The Herald is aware of at least one complaint in the past six months to the Health and Disability Commissioner from a patient who received an FND diagnosis, and one request for a case review to ACC after another patient objected to the diagnosis.

That patient's historical but severe endometriosis was used to show a "pattern of behaviour".

In the figures released under the OIA, the ministry said 16,185 patients were assessed by neurology departments at public hospitals in the 2017/18 financial year.

Of those, 9034 were women and 7151 were men.

Of the 1836 hospitalisations in the three years to 2018 where the code F44 was reported, the highest number of FND discharges was at Canterbury District Health Board, with 300 made up of 194 females and 106 males.

People who were hospitalised more than once were counted each time.

The next highest was Southern DHB with 169 female discharges and 62 male, followed by Waitematā DHB with 119 females and 54 males.

Counties Manukau totalled 137 discharges with the diagnosis, 84 of them women.

Auckland and Waikato DHBs had the same number of discharges, 124 each, but Waikato had more female discharges at 87.

In total there were 389 female discharges with the diagnosis in 2015/16 compared with 191 male, 430 compared with 198 in 2015/17 and 440 with 187 the following year.

Two of the patients were "discharged dead"; a woman from Hutt Valley DHB and a man at Southern DHB.

The underlying cause of the 2015 death of the woman was reported as "sequelae of stroke", which covers depression, anxiety, post-traumatic stress disorder and other mood disorders related to stroke.

History shows women are more often disbelieved about their pain by doctors than men are, with many women previously committed to insane asylums for "hysteria" - symptoms now understood to be synonymous with normal functioning female sexuality.

Auckland Women's Health Council committee member Sue Claridge said women with complex medical conditions that were difficult to diagnose or treat were being marginalised.

"They're not taken seriously. Their physical symptoms are often attributed to psychogenic, psychosomatic, somataform disorder or whatever the current label is.

"It used to be hysteria but it amounts to the same thing. It's basically saying what's wrong with you is all in your head, and the message people get is, you just need to pull yourself together.

"These days they don't say, 'It's all in your head', but when women are diagnosed with somataform disorder or a functional disorder, or they're referred to mental health, it's really clear what [doctors are] thinking.

"And it absolves medical professionals of the responsibility of investigating further and trying to solve it. They're essentially putting women's health issues into the too-hard basket."

Her message to women was not to give up.

"Record everything. Keep a diary. Do your own research. And support each other. Sometimes even just feeling like you're not the only one can be really important.

"And to know you're not going mad, despite what doctors tell you."

She said the situation required a systemic change across society in attitudes toward women.

A functional neurological disorder diagnosis

Female patients were far more likely than men to be discharged with a functional neurological disorder diagnosis. Photo / Getty Images

Thirteen years ago Debbie (not her real name) began experiencing bouts of full body paralysis that doctors couldn't find a cause for.

After 24 hours in hospital the symptoms would resolve, though she was left weak, and Debbie would go home with no diagnosis.

So she turned to the internet for answers, finding a United States-based organisation called PeriodicParalysis International. There she found a group of 1500 members from around the world who had similar symptoms, supported by some leading neuro-scientists.

Over time Debbie became aware that her symptoms appeared to be triggered when her potassium dropped - known as hypokalaemia.

She also discovered a severe allergy to adrenalin in anaesthetic could be responsible for triggering hypokalaemia, and remembered that as a young woman she'd been left unconscious for hours by anaesthetic used during removal of her wisdom teeth.

Last year Debbie underwent a biopsy and mole removal and on both occasions suffered paralysis or significant weakness. She put it down to the anaesthetic and began taking larger quantities of potassium daily that alleviated her symptoms.

When she sought help from one neurologist he asked her at the outset to be open to a psychosomatic cause.

Debbie said the neurologist wrote in his report on her that she "showed findings consistent with a functional pattern", but didn't explain those findings, and that she had emotionally triggered her symptoms after the two local anaesthetics.

He reported her muscle strength as normal despite the hand squeezing test leaving her fatigued for days and that her potassium was in the normal range.

"While the neurologist wanted me to be open to an FND diagnosis, he himself had formed that conclusion from the outset of our appointment, even saying that if I went on K [potassium] tablets and improved, it could be a 'false attribution and lead to a further false diagnosis'.

"It left me sewn up in a bag with no way out. He showed a distinct lack of curiosity, to ask me more in-depth questions regarding my symptoms."

She said the neurologist's report was full of inaccuracies because of how he interpreted what she had said or written.

"And now these errors continue through the medical system.

"If a medical practitioner suspects a functional disorder, then why not seek more background information into the person in question before putting it in writing," Debbie said.

"Any attempt on my part to suggest I wasn't prone to flights of fancy evidenced by the fact I held a responsible position that required a cool, objective head under pressure, including social, cultural and emotional intelligence, was dismissed before the first sentence was out of my mouth."

Because an earlier, senior neurologist believed it "can't be that", subsequent neurologists deferred to the diagnosis and "appeared to close ranks", she said.

"There appears a sense of misplaced pride among some practitioners, that they cannot accept they could be wrong, nor to simply use the words 'I don't know'.

"I'm not giving up, even though I've only got about 15 per cent of the muscle strength of four years ago and can no longer do my full-time job.

"I just wish there was a medical specialist out there with the guts and curiosity to follow this up further."