Growing Problem

 FND represents a “crisis in neurology,” considering it is highly prevalent and difficult to treat. 

Patron, Rustomji, Yip and Jenkins 2022

We do not know enough

We need to do more work to understand the prevalence of FND within Aotearoa. The Auckland University Medical School is currently planning some work on this. We hope they are blessed with some funding.

There is a difference between incidence (the number of people being diagnosed each year), and prevalence (the number of people living with a disease in a community). We only have a little bit of information to suggest incidence of people being admitted to hospital with FND. 

To understand the prevalence of FND we would need far more information about how/if people recover and how people are affected by their symptoms. To our knowledge there have been no such studies conducted in Aotearoa. Usually data collection stops when a patient is discharged. Some work has been done on this question. One overseas study showed that prognosis for children was good, but for older people long-term outcomes were not as great as clinicians hope.  They wrote that:

"[i]n most studies, functional motor symptoms and psychogenic nonepileptic attacks remain the same or are worse in the majority of patients at follow-up.   

The evidence suggests that people with an FND diagnosis are likely to remain unwell for quite some time. 

There is currently no official information on FND 

We had hoped to triangulate with Official Information Act data. We did submit an information request to the Ministry of Health on the 5th of April 2024. Our request was transferred to Te Whatu Ora on 30th April. 

"Manatū Hauora does not hold any information relating to your request; however, I have been advised that this information is held by
Te Whatu Ora – Health New Zealand. For this reason, I have decided to transfer your request to their agency"

We received no information back from Te Whatu Ora either. Apparently neither agency holds any information about FND whatsoever including nothing on it's own specialists, public treatment units or official complaints. FND was also apparently not mentioned in any documents, no meeting notes and no emails. It also appears that no information is given to patients. There is no information about policy on accessing hospital resources. There is obviously some information held by the Ministry of Health, but they did not oblige when we asked. 

Back of the envelope

Most information on FND says that rates of new diagnosis are between 4 and 12 per 100,000  people per year. We think that current rates are significantly higher than this. We guess a rate of 42 per 100,000. We guess that around 2,100 people are being diagnosed with FND in Aotearoa each year. 

How did we get to this number?

Pre-pandemic research showed us that acute FND admissions were happening at a rate of 10 per 100,000 in Otautahi/Christchurch. This represented 1 in 10 neurology admissions and involved "significant inpatient healthcare resource utilisation".  These findings mirror similar studies overseas. 

We have used this as a baseline and assumed this rate was consistent across the nation. Around 30% of our survey respondents told us that they had never been admitted to hospital for FND. We added this number to our baseline to surmise that FND was being diagnosed in Aotearoa at a rate of approximately 14 per 100,000 before the 2019 Covid pandemic. This would give us a national pre-pandemic incidence of around 700 people developing FND in Aotearoa each year.

Covid 19 

It is evident that rates have risen. Both the Covid virus and the Covid vaccine have been documented as triggering FND, indeed we have people in our group to prove it. Rising stress levels associated with lock-downs were also seen to contribute to growing numbers of patients. In terms of duration of illness, our own survey data showed that the largest group of people in our cohort (35%) were diagnosed between 2-5 years ago.

Evidence from overseas suggests that demand for FND emergency services increased by 200% after Covid. We know that this study is being used by Auckland University Medical School in a recent funding application. We will use this number now too. 

A 200% increase would indicate that we have around 2,100 people being diagnosed each year. If there was 1 diagnosis per household, and we grouped these households together in one spot, our newly diagnosed FND community members would form a town a little bit smaller than Kawerau. Each year. 

Repeat visits

The study at Christchurch Hospital demonstrated the therapeutic approach taken in our hospitals is not working. During the 3 year period of the study they found significant resources were allocated to FND patients:

A total of 92 CT brain scans, 77 MRI brain scans, 30 MRI spine scans, 42 EEGs, and 4 lumbar punctures were completed over all admissions. Of the 42 EEGs, 14 involved prolonged video monitoring.

The majority of the tests described above will have been conducted to rule out other diseases such as epilepsy. Once FND was determined, the main therapeutic approach is to explain to patients that FND does not involve structural changes to the body, and to reassure them that they should recover spontaneously. 32% did benefit from Physiotherapy or Occupational Therapy assessment. 13% were assessed by a Psychiatrist. 

Unfortunately, interventions appear to make the problem worse. The study went on to say that: 

Our data suggest that they [the patients] presented even more frequently to ED after the index admission. Therefore, the interventions and any information or explanation received during inpatient admission did not reduce future acute healthcare utilisation in our cohort. It is known that acute healthcare demand can respond sharply to appropriate explanation of the diagnosis of functional seizures, but this does not appear to have extrapolated to our cohort of patients with mixed FND, a finding consistent with behaviours in similar populations.

Why is this not working?

We think that interventions are not working because of combination of three things: 

• doctors struggle to communicate information about this condition

• mismanaged communication and medical stigma increases stress and therefore symptoms in patients

• science doesn't yet understand what's happening. Therefore therapies aren't hitting the right spot. 

The rest of this section on Advocacy presents evidence to support these 3 claims.