Research Summary

Executive summary

This website came about in response to research we conducted during 2023 and 2024. We were a small group who were concerned about what we were seeing in our health system. We set out to understand the needs and experiences of people in Aotearoa living with FND. We aimed to encourage better service provision. Our people told us that they most needed simple local information. We decided to make this website resource to meet this need. 

This page summarises our other research findings. The rest of this section on Advocacy elaborates on these main points. 

Our research method

The research was led by a qualified and experienced social researcher. We first set up a fresh Facebook group for Kiwis, and when we had enough members, we launched a survey. Information from the survey was complimented by data drawn with consent from emails, private messages, and group discussions. We had a total of 59 research participants. We sought feedback from relevant academics prior to launch. 

Key findings

• patients need more, better communicated information. This first finding was the impetus for this website 

• most doctors don't understand FND

• FND creates significant daily problems for our people

• our people suffer long term

• our people find it very difficult to obtain medical care

• most of our people cannot work, are socially isolated, and are experiencing significant hardship and distress 

• FND hinders parents' ability to parent their children

• Covid has made things much worse

• there is stigma towards FND sufferers  

• FND is connected to trauma. 

These findings mirror most studies on FND. Our discussion focuses the implications of the final two findings - the intertwined problems of stigma and trauma. 

Stigma 

Stigma and misinformation in the medical system is far more entrenched and far more damaging than we expected. Most of our respondents had experienced the sharp end of medical stigma many times. Most often our people are accused of feigning, lying, malingering, drug seeking, attention seeking or throwing tantrums. This frequently results in our people being laughed at, yelled at, mocked, belittled and neglected. We were told of some serious incidents of medical abuse and assault. Most people had experienced this stigma from multiple sources. We found that this culture leads to long term significant harm to patients and their whānau. 

FND stigma was found to cause:

• harm to a patient's sense of self

• harm to the household's relationship with health providers

• harm to relationships within the home

• and harm to community relationships. 

Trauma 

Our cohort reported higher levels of trauma than we anticipated, both in terms of the number of hands raised, and in the severity of trauma reported. The incidence reported by our group was significantly higher than the other recent studies we looked at. We think our peer to peer method and period of trust building led to people being more open than they might be otherwise. 

Only 16% of our respondents said that they did not have a traumatic past. Just under 50% of respondents reported sexual trauma. While 30% of respondents had approved ACC Sensitive Claims, less than 5% had approved ACC cover for their FND.  

PTSD was our most commonly reported comorbidity, followed by anxiety and depression. The type of trauma reported by our people was extreme. The very worst of the worst stuff. Most we talked to had a horrific story to tell, so horrible that they rarely tell it. But kindly, they told us. For many, these things happened to them in childhood. Science has understood this connection for a long time. 

How big is the FND problem? 

Data is a problem. We have estimated the scale of this problem two different ways. We estimate that somewhere between 2,100 and 66,000 kiwis could be being diagnosed with FND each year.  If this population of new FND patients mirrored our research cohort, our annual FND community toll might look a bit like this: 

• between 270 and 8,370 people may be destined for wheelchairs this year 

• between 1,050 and 32, 50 may become reliant on mobility aids such as walkers and crutches this year 

• between 630 and 19,530 people might loose the ability to drive this year 

• between 1050 and 32,550 household incomes may drop by 50% or more this year 

• between 525 and 16,275 household incomes may drop by more than 70% this year.

A 70% drop in household income indicates to us that these households are becoming reliant on government income support. Let's assume that there is only one patient per household. Let's conceptually group those houses together for scale and let's compare them to geographical features we know.  

The lower estimate in the last bullet point indicates that FND could be causing a town the size of Takaka to go on the benefit this year. If we assume the higher number (16,275), it is a bit more tricky to name a comparison town because of the way that data is normally grouped. There are 19,000 occupied dwellings in the Marlborough region, so we can imagine a region slightly less populous than Marlborough going on the benefit this year. It appears that a substantial slice of our population, and therefore our nation as a whole,  is being economically crippled by this. Every year. Most do not recover.  

Implications for public health 

Our research showed that the FND community has such negative experiences in the medical system that most will withdraw from their Doctors, preventative care and early intervention. It appears that this detachment is permanent. This affects all aspects of their health care. Trauma in childhood is known to result in long term poor health outcomes. Diseases such as heart disease, cancer and diabetes are much more likely in traumatised people.

People with FND tend to remain unwell and stay away from medical care for long periods. We believe that this is impacting on the health care of entire households. 

FND presents our nation with a significant public health crisis given:

• high prevalence and rising rates of diagnosis

• low rates of recovery 

• the particularly vulnerable nature of the population

• the systematic and deliberate alienation of the FND community from health care services.

Other more life threatening diseases are being missed because they are being mistakenly dismissed as psychogenic. 

Our research suggests that thousands of people may be currently living in inhumane medical neglect with no help from the health or non-governmental sectors. We are particularly worried about the children living in these households. 

A way forward 

All FND service provision should assume that patients are vulnerable and deserve kind, sensitive care. This should be the default approach. We hope to see a future in which all FND patients are all treated with as much care and sensitivity as if they had only just been sexually assaulted, and as much urgency and priority as any other injury that can confine a person to a wheelchair for life. 

We ask that:

• New Zealand adopts an all-of-government definition of FND 

• the Ministry of Health, in partnership with our community, commit to a Standard of Care document that sets out expectations for all medical staff 

• that the Minister of Health lead the charge and change the culture in the medical system. We ask that this change is monitored and evaluated.  

• ACC take a far greater role in treating FND, especially in cases where there is a history of sexual assault, and when FND is triggered by treatment injury and accidental physical injury.