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ONLINE SURVEY ON THE EXPERIENCE OF ECT
You are invited to take part in an online survey. The purpose is to understand the experience of Electroconvulsive Therapy (ECT), in order to enhance the information given to people being offered ECT and their families. This is your opportunity to share your experiences of this treatment, positive and negative. Taking part involves answering an anonymous survey about your experiences with ECT, or the experiences of a loved one. You can complete the survey online. It takes about 30-40 minutes. See full description of the survey here. If you have any general inquiries or would like any further information, please contact Professor John Read
Introduction
In 2020 Manchester had the 4th highest rate of administering ECT per capita in the country. Manchester’s rate of using ECT per 100,000 (8.7) was way above national average of 5.4 and 43 times greater than the lowest Trust, our neighbour MerseyCare.
Whilst the use of ECT in is dwindling in England and has levelled off at about 2,500 people per year. There was a 12-fold difference between the Trusts with the highest and lowest usage rates per capita.
27% of the people who were given ECT in 2015 were not offered any psychological therapy before getting ECT. People administered ECT are mostly women (66%) and people over 60 (56%) (a Department of Health study in 2003 found that 70% of those receiving ECT are female).
We call on Greater Manchester Mental Health Commissioners to urgently review this treatment and provide alternative support for people previously treated with ECT.
We call on GMMHT to suspend the treatment and to explain the huge difference in usage compared with our neighbouring Trust, Mersey Care.
We call on all mental health groups in Greater Manchester to support the call for a review
ABOUT
CHARM is part of a national campaign to review the use of ECT (see article from Manchester Evening News (2021) here
ECT involves an electrical current being passed through the brain under anaesthetic to trigger seizures. Mostly administered to older women. The idea is that this somehow resets the brain’s malfunctioning circuitry that causes depressive and psychotic thoughts and behaviour, though the biological process for this has never been demonstrated.
Findings from a national audit published in 2020 showed that Manchester has the 4th highest rate per capita for administering electroconvulsive shocks in the country.
This shocking statistic means Manchester’s rate of administering ECT is 8.7 per 100,000. This is way above the national average of 5.4.
This is 43 times greater than the lowest Trust, our neighbouring Trust, Mersey Care.
Or to put it another way, for every one person receiving ECT in Liverpool, 43 people receive it in Greater Manchester.
The Greater Manchester Mental Health Trust claims Electroconvulsive Therapy is an effective and essential treatment and they plan to further develop this service in the new North View Psychiatric Hospital in North Manchester.
The audit throws considerable doubt on the wisdom of this decision. In 2019 the authors of the ECT audit contacted 56 Mental Health trusts in England (using Freedom of Information Act requests) and asked whether they were following NICE guidelines about ECT being a treatment of last resort. They were also asked about other things such as how they were monitoring for signs of progress, brain damage and cognitive dysfunction. 57% of NHS Trusts replied.
The audit discovered ECT is a dwindling treatment. However, it also found that there is a 47-fold difference between the Trusts with the highest and lowest usage rates per capita and the highest rates of usage are in the North West of England.
GMMHT Clinical Model and ECT
We know GMMHT responded to this FOI, even though their answers were incomplete, and what we have subsequently found out about this practice in Greater Manchester has increased our concern. (you can see their responses in the notes below).
In our view ECT is a controversial psychiatric treatment for depression and other conditions because it can cause side effects such as memory loss and is ineffective for many patients.
However, Greater Manchester Mental Health Trust still claims Electroconvulsive Therapy is an effective and essential treatment and they plan to further develop this service in the new Park House Psychiatric Hospital.
GMMH say: “Electroconvulsive Therapy (ECT) is an essential intervention for some service users who attend treatment from both the inpatient wards and community settings. ECT can be a life-saving treatment for some and is the definitive treatment for catatonia of any cause and life-threatening depression.”
In our view ECT is a controversial psychiatric treatment for depression and other conditions because it can cause side effects such as memory loss and is ineffective for many patients. A recent study published in Psychology and Psychotherapy: Theory, Research and Practice has examined how ECT is currently administered and monitored throughout England:
More than a third of ECT was given without consent, and 18% of Trusts were non-compliant with legislation concerning second opinions.
Only one Trust could report how many people received psychological therapy prior to ECT, as required by government guidelines.
Only six Trusts provided any data for positive outcomes and seven for adverse effects. None provided data on efficacy or adverse effects beyond the end of treatment
In 2018, a class action case was settled in the US after a federal court ruled that a reasonable jury could find against manufacturers of ECT equipment if they failed to warn of the dangers of brain damage. One manufacturer, Somatics, immediately added “permanent brain damage” to the list of risks from the treatment”. Thymatron ECT manufacturers are required to note that ‘the long term safety and effectiveness of ECT treatment has not been demonstrated’ and to warn of ‘permanent brain damage’ as a possible consequence.)
According to current NICE guidelines (which are used by the NHS), before anyone has ECT they should be fully informed about the procedure, made aware of all possible side effects and give informed consent where possible. After each ECT session, individuals should be assessed to determine whether treatment should continue. It’s important to talk through your treatment options with your GP.
GMMH say: “The possibility of receiving ECT can be frightening, and service users should receive information on the pros and cons of this treatment, and have the opportunity to discuss these in full with the clinical team.“
However there is no public information about ECT on the GMMH website or evidence of a patient information leaflet.
For now and until we have more information from the Trust, we have set the findings of this audit against the claims for ECT made in the GMMHT Clinical Model (2020) for North View Psychiatric Hospital in North Manchester. See full document here
8.7.9 Electroconvulsive Therapy (ECT: Electroconvulsive Therapy (ECT) is an essential intervention for some service users who attend treatment from both the inpatient wards and community settings. ECT can be a life-saving treatment for some and is the definitive treatment for catatonia of any cause and life-threatening depression. ECT is used in approximately a million people per year globally, in every advanced health system.
The possibility of receiving ECT can be frightening, and service users should receive information on the pros and cons of this treatment, and have the opportunity to discuss these in full with the clinical team.
ECT is regulated in the United Kingdom by NICE (with respect to indications) and the RCPsych’s ECT Accreditation Service (with respect to implementation). As well as 3-yearly audit and peer review by ECTAS, the service is subject to annual internal audit.
The ECT service comprises a multidisciplinary team led by a consultant with a special interest in ECT, and includes anaesthetists, nurses and operating department practitioners (ODPs) from North Manchester General Hospital.
All staff have a special interest in ECT and attend regular national courses and conferences both as delegates and trainers. For ECTAS accreditation, the service must be provided in a dedicated suite which must meet recommended patient-centred and safety and dignity-focused environmental and procedural standards.
Treatment occurs twice per week in line with NICE guidance. As people receiving ECT must fast before each treatment, treatment occurs in the morning. Treatment is provided in conjunction with the referring team, who receive advice on medical fitness, frequency and duration of treatment, medication, indications, side effects and prognosis from the ECT MDT. (GMMH, 2020)
WE believe that a major difficulty with the proposed clinical model described above, is it is attempts to run two parallel ways of thinking (the pathological model v the trauma informed approach.)
One very obvious example of this is that the Clinical Model dedicates just 6 lines (p24) to the description of the psychological care it intends to provide, yet it devotes 23 lines to a justification for the continued use of Electroconvulsive Therapy (ECT) (see above for their full description).
The Greater Manchester Mental Health Foundation Trust claims it meets NICE guidelines (NHS standards for services) for the ECT service. However, these guidelines emphasise that ECT is a last resort treatment.
Further, we notice the Trust is being very secretive about ECT, we can find no information about it in their website and their original response to the audit findings was complacent and uncaring.
And why are they intending to prolong the use of such treatment by wasting resources on a new ECT suite in the new hospital? How many people could be offered psychological therapy if they moved resources into psychology?
In conclusion we call on the Mental Health Commissioners to urgently review this treatment and for GMMHT to suspend the use of this treatment, explain the huge difference in usage compared with our neighbouring Trust, Mersey Care and provide alternative support for people previously treated using ECT.
The Campaign
ECT is known to cause brain damage. Along with a wide range of Mental Health organisations and growing numbers of MP’s across the country, CHARM calls on our mental health care leaders to urgently review this treatment, focussing on over use, lack of regulatory control, lack of patient information and as a result lack of proper informed consent.
A wide range of mental health organisations are part of this campaign, including:
National Mind, Headway, Association of Clinical Psychologists, , PsychSoc, Change Wales, Platfform (formerly Gofal MH charity in Wales), the National Counselling Society, the National Hearing Voices Network in England, and the Royal College of Nursing
Tee campaign is calling for a review because of safety concerns, asking for national audits to be reinstated and for independent, objective monitoring of adverse effects to be put in place.
It is also calling for new approaches in line with the philosophy of care, based on Recovery, psychologically informed environments, and a trauma-informed approach. ECT does not fit within this approach. It should be dropped now and the funding and staffing used for more compassionate and appropriate evidence based support.
WHAT YOU SHOULD KNOW ABOUT ECT
WHAT IS ECT?
ECT is an abbreviation for electroconvulsive therapy, also referred to as electroshock therapy, electric shock therapy, or simply shock therapy. These days, ECT is most often used on patients with depression. ECT involves passing sufficient electricity through the brain to intentionally cause a seizure. The amount of electricity required in ECT “therapy” is usually between 70 volts and 120 volts, resulting in roughly 800 milliamps (mA) of direct current passing through the brain either across one temporal lobe (unilateral ECT) or across both temporal lobes (bilateral ECT).
When you hear the terms electroconvulsive therapy (ECT) or electroshock therapy, the first thing that probably comes to mind is the film One Flew Over the Cuckoo’s Nest. Patients in the film appear to be brutalized during treatment and afterward sit in the ward drooling with vacant expressions. Most believe that an arcane “therapy” like shock treatment must be a thing of the past.
The truth is that a very small minority in the medical community still accept and strongly advocate for ECT shock therapy as a treatment option for severe depression, bipolar disorder, catatonia, agitation associated with dementia, and other issues, and it is this small minority that keep the procedure alive.
While proponents of ECT argue there have been advancements in the delivery of ECT with anesthesia and muscle relaxants, other than preventing broken bones and teeth or bitten tongues, the procedure continues to deliver a significant amount of electricity to the human brain, resulting in damage.
“[To] put this all in perspective, the amount of electric current that an ECT machine puts through a patient’s head is about 200 times what is considered dangerous for accidental electric shock, approximately 100 times what Tasers, cattle prods, and electric fences use, about the same as what is used for stunning pigs before slaughter, and roughly one-fifth as much as the electric chair. In addition, the amount of voltage applied to the head (460 volts) is about 400 times what is required to damage a single brain cell. Clearly this amount of electricity has the potential to cause injury to the brain.” – Dr. Kenneth Castleman, biomedical electrical engineer and former Senior Scientist at NASA’s Jet Propulsion Laboratory.
ECT’s introduction is not predicated on research designed to test the machines for safety in the long-term. Since its inception, ECT shock treatment has caused countless adverse events. Comments from electroshock survivors describe the treatment as “barbaric” and “torture.” Even one of the treatment’s founding fathers, Ugo Cerletti, understood the effects ECT had on patients:
When I saw the patient’s reaction I thought to myself: this ought to be abolished! Ever since I have looked forward to the time when another treatment would replace electroshock.
What happens?
Before the treatment starts, you will lie on a bed and your jewellery, shoes and any dentures will be removed and kept safe for you.
You will be given a general anaesthetic injection, once you are comfortable.
Once the anaesthetic takes effect and you are unconscious, you will be given an injection of muscle relaxant to stop your body from convulsing during the treatment. You will also be given oxygen through a face mask or tube. This is needed because of the muscle relaxant.
Two padded electrodes will be placed on your temples. You will either have one placed on each side of your head (bilateral ECT), or both placed on the same side of your head (unilateral ECT) – there is more information about this below.
A mouth guard will be placed in your mouth, to stop you biting your tongue.
The ECT machine will deliver a series of brief, high-voltage electrical pulses. This will cause you to stiffen slightly, and there may be some twitching movements in the muscles of your face, hands and feet. The seizure should last for 20 to 50 seconds.
Mind Information sheet: What are ECT Sessions like?
MEDICAL STUDIES HAVE DEMONSTRATED ECT CAUSES BRAIN DAMAGE
ECT and brain damage have been inextricably linked since inception. ECT’s early advocates believed brain damage was actually the reason the treatment was effective. In 1941, Dr. Walter Freeman, a proponent of lobotomies, wrote a paper titled “Brain Damaging Therapeutics,” in which he stated:
“The greater the damage, the more likely the remission of psychotic symptoms … Maybe it will be shown that a mentally ill patient can think more clearly and more constructively with less brain in actual operation.”
The idea that brain damage can be therapeutic in this day and age seems far-fetched. But some still accept that brain damage caused by ECT has medical benefits. In 2012, research scientists reported that ECT reduced “functional connectivity” in the brain. But rather than condemning the ECT, the study authors argued that this damage served as evidence that the brains of patients with depression have “hyperconnectivity” that ECT corrects.
Another study from 2013 found that ECT is effective at targeting and erasing harmful memories. The authors go so far as to suggest that ECT should be used for this purpose.
The textbook “Preventable Brain Damage” cites different types of studies that have shown brain damage resulting from ECT (including animal studies, human brain autopsy reports, subjective reports long after the administration of ECT and psychological testing in patients with a history of ECT).
According to one animal study cited in the book, significant differences were noted in cats who received ECT, which showed “clearly irreversible changes such as shadow cells and neuronophagia.”
Psychological testing of patients with a history of ECT treatments showed the “ECT patients were significantly inferior on all three tests,” and “the research using psychological tests with patients with history of many ECTS does suggest permanent impairment.” The study author concluded:
“There seems to be little doubt that ECT has, at least in the past, caused permanent brain damage in some patients and has the capacity to continue to do so.”
In 1979, a study in Archives of General Psychiatry documented that cerebral atrophy was significantly more common in patients who received ECT shock therapy.
In 1981, a brain scan study confirmed that brain shrinkage was significantly more common among patients who received ECT compared to other patients.
In 1986, a study found that ECT recipients were twice as likely to have a measurable loss of brain tissue in the front area of the brain and a tripling of the incidence of a loss of brain tissue in the back of the brain.
In 1990, scientists analyzing MRI scans of patients found a strong correlation between previous ECT treatments and loss of brain tissue.
MEDICAL STUDIES HAVE DEMONSTRATED ECT CAUSES PERMANENT MEMORY LOSS, AMNESIA
A 2003 review of studies of self-reported memory loss among those at least six months post ECT found a range of patients reporting memory loss from 51% to 79%, with an average of 70%. The same review also found that the range for “persistent or permanent memory loss” was 29–55% with an average of 38%.
In 2004, a report from the New Zealand government concluded that “ECT may permanently affect memory,” and bemoaned the “slowness in acceptance by some professional groups that such outcomes are real and significant in people’s lives.” The psychiatry textbook Introductory Textbook of Psychiatry
In 2007, the first large-scale prospective study of cognitive outcomes of electroconvulsive therapy found that six months after ECT, autobiographical memory was significantly worse (p <.0001) than pre-ECT levels. Additionally, 12.4% suffered “marked and persistent retrograde amnesia.” This same study also found that women were 2.5 times more likely than men to be categorized as “marked and persistent retrograde amnesia.”
In 2019, the authors of The Cognitive Effects of Electroconvulsive Therapy: A Critical Review reported, “[r]ecent meta-analyses suggest the most prominent deficits are on measures of attentional/executive control (i.e., tests measuring cognitive flexibility, inhibitory control, and processing speed) and auditory verbal learning/recall (i.e., unstructured list learning), a memory task that is also strongly correlated with executive functioning.”
A report from the American Psychiatric Association notes, “evidence has shown that ECT can result in persistent or permanent memory loss.” A subsequent review of the research confirmed that “ECT can cause persistent or permanent memory loss, especially autobiographical memory.”
ECT DEATH STUDIES
Numerous studies have found that the mortality rates for ECT patients is many times greater than the rate promulgated by the American Psychiatric Association, which indicates that the ECT death rate is “1 per 10,000 patients, or 1 per 80,000 treatments.”
In one study of ECT patients in Texas, authors reported that of the 8,148 ECT recipients, seven died within 48 hours of treatment. Excluding two deaths considered “unlikely to have been related to ECT,” this amounts to one per 1,630. Eight more patients died within two weeks of a “cardiac event,” a common ECT-related cause of death. If these are included, the mortality rate becomes one per 627.
A 2019 review of more than 80 studies found that about one in 50 people suffer “major adverse cardiac events” after ECT.
ELECTROCONVULSIVE THERAPY IS USED TODAY WITHOUT PROOF OF SAFETY AND/OR EFFICACY
From the early days of electroconvulsive therapy to the present day, psychiatric experts have documented brain damage and memory loss correlated with ECT. A vocal “ECT survivor community” has been voicing their objection to the continued use of shock treatment for decades.
Between 2009 and 2011, the FDA opened a public docket seeking reports of adverse events related to ECT. Thousands of adverse event complaints were submitted, hundreds of which alleged serious brain injury. Following a 2011 FDA hearing, the FDA provided “An Executive Summary” containing information on the available safety and effectiveness data for ECT in treating various forms of severe psychiatric illness. According to the FDA, memory loss, including autobiographical memory loss (memory loss of personal events and self-identity), was one of the “most concerning” adverse events associated with ECT.
As for the efficacy of ECT, researchers conducted an analysis of all ECT studies meeting the criteria for the highest and most conclusive level of evidence in medicine: randomized, prospective, double-blind placebo-controlled trials of ECT (conducted by others, not by ECT manufacturers). These studies compared real ECT with “sham” ECT. According to the researchers, the studies “provide definitive evidence that real ECT is no more effective than sham ECT.”
In a meta-analysis of pre-existing ECT studies conducted by Irving Kirsch of Harvard University and John Read and Laura McGrath of the University of East London, the authors concluded:
“Given the high risk of permanent memory loss and the small mortality risk, this longstanding failure to determine whether or not ECT works means that its use should be immediately suspended until a series of well designed, randomized, placebo-controlled studies have investigated whether there really are any significant benefits against which the proven significant risk can be weighed.”
ECT DOSING
Dose optimization of ECT remains controversially “unreconciled despite decades of research.”
“After more than 80 years of use, ECT proponents haven’t come up with standardized protocols based on safety studies. Nor can they. Between more than 12 dosing variables involved plus the individual patient’s anatomic differences, it literally creates infinite dosing variables with potentially catastrophic risk. Due to the number of variables involved in its administration, ECT is basically the equivalent of medically sanctioned Russian Roulette.” – Sarah Price Hancock, Life After ECT
“Due to the number of variables involved in its administration, ECT is basically the equivalent of medically sanctioned Russian Roulette.”
