50 signatures reached
To: Ministry of Health, Ministry of Disabled People , ACC and Ministry of Social Development
Protect and support people with Functional Neurological Disorder!
Aotearoa should be a place where everyone is protected and supported. For too long people with Functional Neurological Disorder have been left to advocate for themselves within the health system.
I ask the Ministry of Health, the Ministry of Disabled People, Ministry of Social Development and ACC to:
1. Collaboratively compile treatment plans and support services for patients in a timely manner to prevent further chronic harm.
2. A Government wide inclusion of FND in its Education and Language policies relating to health, including for medical staff, social workers, educators of medicine.
3. At all times, FND patients are treated in keeping with the Patient Rights Code in NZ.
Why is this important?
Functional Neurological Disorder is becoming a fast growing condition in New Zealand.
While no one person is born with it, many have come to be diagnosed with FND with growing global awareness of this condition, its poor reaction to mrna vaccines, the lack of helpful and preventative treatment and breach of the code of patient rights.
FND is a disabling and devastating condition. Symptoms range from a faint, to seizures, paralysis, pain, immobility to say a few, and that comes with a lot of psychological damage to one's self esteem. There are many cases of delayed or mistreatment from lack of understanding, including being locked away from family homes, being accused of being crazy, being told we deserve it, not being treated, gaslit, and difficult to get help, or having to wait years for proper assessment.
For 37 years I believed I was epileptic and had fibromyalgia. FND was not widely considered at all then. This meant decades of mismanagement, mis-medication, career paths denied, and absolutely no treatment for the real condition. Because of those consequences, I have been - avoided in the street - as I was weaving from medication, yelled at by doctors because they did not know what was going on, accused of not taking my medicines, which I have always taken religiously. I have been subject to abusive situations because of the effects of the medications I did not need.
Personally, I have been waiting for nearly 3 years to have the acknowledgement that I even require treatment, and the only reason it has happened THAT QUICKLY is because of the consistent follow up and bringing things to ACC attention. It is exhausting, stress inducing, and causes further harm to FND clients. While I have been compliant and have undertaken every possible process, I am still here, waiting for treatment, 3 years after diagnosis, 43 years after it started.
As such, I call on the Ministry of Health, the Ministry of Disabled People, Ministry of Social Development and ACC to take these three actions.
- They must adhere to the Code of Health and Disability Services Consumers' Rights in every manner regarding FND patient's, diagnosis, treatment and handling by all related staff, including management of patient records and expunged files or diagnosis, and supervision of medical applications used by practices for mismanagement and breach of patient privacy by mis-sharing patient information.
- They must collaboratively discuss and compile treatment plans and support services for patients in a timely manner so as to prevent further chronic harm.
- Inclusion of FND in its language and education policies, inclusive of medical staff, acc staff, social workers, and educators of medicine, to better facilitate healthy discussion and further beneficial research around this condition.
There is no cure for FND, and while things continue to get worse at an alarming rate, the care in New Zealand is not keeping up. If the Ministry of Health, Ministry for Disabilities and ACC collaboratively create an early treatment plan it could help prevent FND from becoming chronically worse and in some cases, may even reduce symptoms for a short period of time.
I want to see the Government put its people first.
We deserve a good quality of life, with dignity and mana and with whanau around to support us. Not be treated like a burden and excluded from jobs, community and even medical care.
I want to see our future moko be treated with respect and dignity when going into the medical system.
These three steps can lead us towards a positive sustainable change within the health care system that will benefit all people living with FND.
Join us by making the health care system more just for everyone!
Sign this petition and share it with friends and family.
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