Standardize, Regulate & Audit Shock Treatments (Electroconvulsive therapy or ECT)

Standardize, Regulate & Audit Shock Treatments (Electroconvulsive therapy or ECT)

Started
October 20, 2019
Petition to
President, American Psychiatric Association Altha J. Stewart and 13 others
Signatures: 15,232Next Goal: 25,000
Support now

Why this petition matters

Started by Sarah Hancock

I had shock treatment. I was so sick my doctors told my parents and me ECT was my the only option. 

We were never told the device pulsed nearly an ampere current into my brain, "without any clincial or scientific rationale."

We were never told the device was not FDA approved. 

We were never told the device was only "safety tested" on two dogs six times. (It was used on me 116 times.)

We were never told my doctor had no subspecialty training in biophysics to know how to choose an electical dose.

We were never told that without biophysics, histopathology of electrical injury or neuropathology of ECT subspecialty training, my doctor would arbitrarily choose my dose from more than 500 possible doses based on the medical tradition of his mentor, not a replicatable body of evidence. 

We were never told that in the event of injury, my injuries would be denied simply because patients with a completely different electrical dose we not injured--not because appropriate testing showed no injuries. I was never told doctors would not test for cognitive deficits if I passed the "MMSE." Nor were we told lobotomized patients can pass the MMSE.

We were never told treatment could permanently change cognitive, motor, balance, vision, hearing, and autonomic functions. I didn't know to demand pretreatment assessments of each to establish my baseline function so that in the event of injury, I could prove deficits with a solid measuremen of functional changes. 

We were never told "safety and effectiveness of ECT has not been demonstrated. Long-term follow-up may be needed," as now required by the FDA.

We were never told I would be abandoned by medical professionals in the event of injury becase there are no formally recognized rehabilitation interventions for people injured by ECT's repetitive electrical injury and repetitive traumatic brain injury--though manufacturers now list "brain injury" as a "serious adverse event."

We were never told the medical field does not study electrical injury.

We were not told there is no formally recognized treatment for the neurological sequelae of repetitive electrical injury. 

We were never told about "diffuse electrical injury." 

We were never told about "delayed electrical injury."

We were never told that in the event of injury, my injuries would be continuous and progressive. 

We were never told how hard it would be to find a doctor willing to explore how to provide FDA recommended "long-term follow-up" in the event it was needed.

We were not told that having 10 treatments tripled the likelihood of subsequently developing Amyotrophic Lateral Sclerosis after age 65--because at the time, that research hadn't been conducted. 

I had 116 treatments. I am now (2023) diagnosed with "myoneural disorder unspecified."

We never knew that my repetitive electrical injury and repetitive traumatic brain injury symptoms would be documented in my medical records as purely psychological by doctors who have no subspecialty training in either. 

We were never told no one regulates ECT dose. 

We were never told they'd use IV caffeine, even though it causes "neuronal loss."

We were never told my doctor and hospital could be paid by Medicare and Medi-caid in perpetuity even without proper documentation for giving me ECT, by that my brain injury rehabilitation and electrical injury rehabilitation would be limited and must be paid for out of pocket, if needed.

We were not not told I could not gain access to comprehensive rehabilitation for ECT injury identification of the injury by doctors not trained to see it and properly document it.

Instead, I was told ECT was safe and effective. 

We believed doctors wouldn't be allowed to use a treatment if they hadn't been properly trained. 

We were never told ECT could cause an injury, let alone cause an uncurable continuous and progressive injury. 

We were never told there was a possibility this treatment may require long-term caregiver support and may cause premature death.

We didn't know I was participating in an unregulated human experiment. 

So... I signed my "consent form" and my doctor zapped me with nearly an ampere current for eight seconds causing a seizure so violent that research shows it stops all brain activity for up to more than 6 minutes--never documenting how long my brain activity stopped. When it didn't work, he just added intravenous caffeine and just kept zapping--116 TIMES. Averaging $3,400 every single treatment. He continued ECT without conducting any form of comprehensive testing for known serious effects. No one stopped him. Why? Electroconvulsive therapy (ECT or  electroshock therapy) is not regulated or audited by a third-party regulator. 

I am not the only one. Thousands of patients like me are being treated with unregulated electroshock therapy right now. In 2017, the hospital that treated me reported that they gave 4,055 ECT treatments and collected $13.9M from ECT reimbursements alone. And that’s just one hospital.

Today (a decade after I quit treatment), I live with the effects of a repetitive head injury much like those recognized in athletes. Now, I suffer from symptoms including 36 years of memory loss, migraines, early onset Dementia, and slurred speech due to motor neuron malfunction.

Technically my symptoms fall "outside the scope of practice" for most neurologists in the area because no one specializes in repetitive electrical injury to the head. That’s because this type of treatment isn’t actually regulated or audited.

Join me in demanding international psychiatric leadership (i.e. American Psychiatric Association, UK Royal College of Psychiatry, et al) improve patient care by conducting neuropathology safety testing to establish dosing limits, protocols for routinely conducting comprehensive testing in every ECT recepient and demanding psychiatrists and neurologist get formal training in biophysics and neuropathology of pulsed electricity so they understand the treatment's pathology by signing this petition. This is a global outcry that will lead to a global solution. There needs to be official regulations to ensure that practitioners are properly trained to give appropriate treatment.

People referred for Electroconvulsive therapy (and their family members) deserve complete information pertaining to risks of permanent brain damage now recognized by the device manufacturer. Patients deserve to understand that until the method of administration technique is standardized, regulated and audited to ensure protocols are followed, they cannot reasonably expect positive outcomes from this form of treatment.

Patients and their family members must understand that doctors and device manufacturers cannot say that negative outcomes are "rare" because without standardized treatment, no one can understand how rare or common negative outcomes are. Patients and family members must understand that this treatment can potentially cause a repetitive head injury which doctors do not understand how to treat. Not telling patients and their family members about manufacturer recognized risks is negligence.

Assuming a person (or their family member) does not need to fully understand the risks involved with treatment because of the severity of present mental health symptoms is discrimination. Humans have the right to choose whether or not they receive a treatment based on fully informed consent. Humans deserve appropriate follow-up care if/when they are injured. Doctors deserve to be fully informed of the risk of permanent brain damage to which they are exposing their patients and understand they are providing a treatment which can potentially cause symptoms that are outside their scope of practice to follow-up on and treat appropriately.

This petition (outlined in the updates) prevents risk of brain damage, establishes protocols to identify if/when a patient is injured and provides rehabilitation when injured. 

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Signatures: 15,232Next Goal: 25,000
Support now
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Decision Makers

  • Altha J. StewartPresident, American Psychiatric Association
  • Carlos PenaDivision of Neurological & Physical Medicine Devices FDA
  • Rosie Phillips DavisPresident of the American Psychological Association--2019
  • Tedros Adhanom GhebreyesusDirector General, World Health Organization
  • The Royal College of PsychiatristsPresident