A Way Forward
Darwin's Moth
In 1882, the year of Charles Darwin's death, Xanthropan Morgani was discovered in Madagascar. It has now become known as Darwin's Hawkmoth. Twenty years earlier Darwin had predicted the existence of this moth when examining a new species of orchid. The flower had a foot long nectar spur. He surmised that a corresponding moth must exist. He drew the moth but for 20 years, he could not find it. Some described this moth as his favourite creature of all, even though he had no evidence of its existence other than an unusual orchid.
We want science to look on our words as being like unusual orchids. Please listen as if our words were reliable empirical data. We think science is on the right track, but we are not there yet. We predict that sometime in the future science will understand the physical mechanisms at play in this disorder and that this will lead to more effective treatments. It's quite likely that advances in FND research would bear rich fruit in treating those with other functional and neurological illnesses too.
Even if it's only us who benefit, we are just as worthy as any other group.
Recommendations
We feel the most important action to take now is heal the damaged relationship between the FND community and the medical sector.
FNDA asks the Ministers of Health, Disability and ACC, of the Government of New Zealand for the following:
an all-of-government evidence based definition of FND including;
the adoption of a trauma sensitive Standard of Care to be developed in partnership with our community
a Ministerial driven culture shift within the medical system and social services
inclusion of FND in the curricula of all medical training facilities.
In the medium term we want to see a universal treatment pathway for patients through the public health system.
We want ACC to take a greater responsibility.
We think it appropriate to reconsider ACC's role in management of this disorder. We believe that the majority of our people could potentially be eligible for cover. Under existing legislation ACC can cover the following cases:
those with a history of sexual assault
in cases of treatment injury, example when FND is triggered by a medication change or surgery
when FND is triggered by an accidental physical injury.
What would ideal service provision look like?
All FND patients should be treated with as much care and sensitivity as if they had only just been sexually assaulted, and with as much priority and urgency as any injury that is capable of confining somebody to a wheelchair for life
Clinicians should sensitively identify any potential relevant trauma, and immediately redirect relevant acute hospital presentations onto an ACC funded, highly responsive specialist FND crisis team. People presenting to their GPs should be referred to ACC also.
We think that any indication of sexual trauma from the patient should immediately trigger ACC Sensitive Claim protocols and resources. Due to the highly disabling and distressing nature of FND onset, patients should have at least 6 weeks, with professional support, to decide if they want to submit a Sensitive Claim.
A denial of trauma should not change the sensitivity of the treatment approach. Many people hide their history of trauma from family. All patients have a right to be treated with respect.
In areas of insufficient populations to support a crisis service, a central team needs to train rural and regional front-line staff in the standard of care required. A treatment pathway for these patients needs to be established and maintained.
We suggest that ongoing recovery programmes should include group activities and workshops. Bringing our people back out into the sunlight will be hugely important. We feel that the benefits would outweigh the risk of any potential nocebo back step.
This is a huge problem globally. New Zealand could show the world how it's done.
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