By Lucy Johnstone and Sue Cunliffe
Electroconvulsive therapy, or ECT, is still given to about 2,100 -2,700 people a year in England, about half of whom have not consented to it. This blog reports on a campaign for an independent review of this highly controversial procedure, and provides links to relevant articles. There will be updates as the campaign progresses.
We are a group of 40 mental health professionals, researchers, ECT recipients and carers who are calling for an independent review into the practice of ECT, along the lines of the recent Cumberlege report into pelvic meshes. We have written to Matt Hancock MP, Secretary of State for Health and Social Care, as well as conducting reviews, writing articles, giving talks, and taking other actions as described in the blog below. We hope that whatever your views on ECT, you will support the need for safe and properly-regulated practice. You can do this by:
- Writing to your MP (see link to our letter to Matt Hancock here: https://www.uel.ac.uk/-/media/staff/r/john-read/call-for-independent-review-of-ect-july-10.ashx) using our template which can be found here
- Circulating the letter, articles and campaign updates to your contacts and on social media via @Readreadj @CunliffeSue @ClinpsychLucy @PeterKinderman. Long-standing campaigners about ECT include @PsychRecovery, @KellyMartin02, @CherylPrax, @lifeafterECT, among others.
Why do we need this campaign?
Dr Sue Cunliffe writes:
I was a paediatrician until 2005 when I suffered devastating brain damage from ECT. I have improved over the last 15 years but am left with disabling neuronal fatigue. I can never work again and I have lost my independence. Saying I was lucky seems strange, but I am the only ECT victim I know who has been diagnosed with brain damage as a result of ECT, and has received neuro rehabilitation, which preserved my sanity and helped me get off all my medications. A combination of the fear of going near a psychiatrist and the drive to prevent others suffering my fate has enabled me to stay positive and grateful for everything good in my life.
I was admitted to hospital in the context of an abusive marriage. Instead of receiving therapy and support, I was persuaded to undergo 21 sessions of ECT. My medical notes clearly demonstrate lack of monitoring and supervision. They list my complaints about my memory deteriorating, my speech slowing up, feeling continuously ‘sedated’ and my motor and coordination being affected. Instead of reviewing the treatment plan, the dose was increased from 90Millicoumbs to 700MCs with devastating consequences. Reading my notes has proven hard. It’s a comprehensive account of my brain being blown to bits and my life stolen from me with 20 negligent flicks of a switch. Since then, I have campaigned for recognition and rehabilitation of the harms caused by ECT. I spoke at the recent Maudsley debate on ECT (https://www.bmj.com/content/364/bmj.k5233/rr-9) and described my experiences in a recent podcast https://www.podbean.com/media/share/pb-bg3hn-e86f3c We are calling for an independent enquiry into the practice of ECT on behalf of all of those whose lives have been devastated.
Dr Lucy Johnstone writes:
I have opposed the use of ECT throughout my career as a clinical psychologist, for reasons that I explained in this article in The Psychologist in 2003 (https://thepsychologist.bps.org.uk/volume-16/edition-5/shocking-treatment). Working on adult inpatient wards, I have seen countless examples of it being used to counter staff feelings of hopelessness and stuckness, with results that were almost invariably disastrous for the patient, and sometimes fatal. ‘Successes’ rarely looked like that further down the road – rather, people were blasted into a temporarily different state of mind, only to crash down again when the reality of unbearable life situations re-asserted itself. One dramatic ECT ‘success’ was discharged home to an unhappy marriage, where she spent a week frantically cleaning, and then killed herself. Another ‘success’ was able to leave hospital and take up a job – but she never felt that the new, disinhibited person who emerged from the electrical storm in her brain was her real self, and she too took her own life. Other ‘successes’ re-appeared on the ward only months later, with treatment choices narrowing until more ECT, and yet more ECT, seemed the only option. One woman who roamed the ward in an unreachable dissociated state, briefly connected with me to tell me that ECT had caused the loss of her unborn child, followed by a hysterectomy which destroyed her chance of having a family. Another, a victim of gang rape, described re-living her trauma when the anaesthetic failed to work, and she lay helpless on the ECT trolley. A long term client felt herself sliding into depression and, unable to face the thought of more rounds of ECT, took a massive overdose, and was only found just in time. My own research uncovered many more examples of ECT reinforcing feelings of fear, shame, humiliation, distrust, badness and despair, along with loss of precious memories, and the re-activation of experiences of trauma and abuse (http://www.psychiatrized.com/LeonardRoyFrank/ElectroshockArticles/adversepsychologixaoeffectsofE.pdf).
These are the rarely-described consequences of ECT. As in any form of institutional abuse that is as yet unacknowledged by society as a whole, they are largely hidden – by shame and fear in patients, by denial from professionals, by research that turns human testimony into numbers, and by professions and organisations who are massively invested in denial and self-protection.
There are people who say ECT helped them, and there are certainly professionals who believe that ECT can be helpful. But the bigger issue is the overall risk/benefit ratio. How lucky do you have to be to fall into the ‘mostly helpful’ group, and how many people will suffer longterm damage – psychological and cognitive – for each person who benefits? And would there have been alternative ways of achieving good outcomes? (The evidence suggests yes, even in those who are most severely depressed; Buchan et al, 1992). And, if the most likely mechanism of action is brain damage, it is ethical for professionals to offer ECT at all? In the words of neurologist John Friedberg:
Assuming free and fully informed consent, it is well to reaffirm the individual’s right to pursue happiness through brain damage if he or she chooses. But we might well ask ourselves whether we, as doctors sworn to the Hippocratic Oath, should be offering it (Friedberg 1977).
However, the purpose of this blog is not to reiterate these arguments. It is to ask for support in a campaign that we hope everyone will feel able to sign up to, whatever their views. We are arguing for an independent review of ECT practice in order to ensure that it is subject to appropriate training and accreditation procedures, that recipients are fully and accurately informed about potential risks and alternatives as well as benefits, and that monitoring, assessment and rehabilitation for potential damage is available.
The campaign group consists of a number of professionals, researchers, and ECT survivors and their carers, many of whom are long-term campaigners about ECT.
The journal article which started this particular revival of concerns is co-authored by John Read, Irving Kirsch and Laura McGrath (https://connect.springerpub.com/content/sgrehpp/21/2/64. It concludes that there is very little evidence that ECT is better than placebo during the treatment period and no evidence at all beyond the end of treatment. It also found no evidence that ECT saves lives or prevents suicides, as so often claimed. On the other side of the cost-benefit ratio, there is a slight but significant risk of death, and between 12% and 55% suffer brain damage in the form of permanent memory loss. Professor Richard Bentall, commenting on this review, described ECT as ‘a classic failure of evidence-based medicine’ http://cepuk.org/2020/06/04/guest-blog-by-richard-bentall-ect-is-a-classic-failure-of-evidence-based-medicine/
Many years of disquiet and protest about ECT has failed to bring about change, but the recent Cumberlege review into pelvic meshes (https://www.immdsreview.org.uk/downloads/IMMDSReview_Web.pdf) suggests a mechanism for by-passing denial and vested interests, bringing unacceptable practice to light, and offering acknowledgement and redress to victims. This review is now closed, but one of its recommendations is for the appointment of a Patient Safety Commissioner to investigate safety concerns in healthcare. Scotland has already agreed to set up such a role. A group of 40 of us has therefore written to Matt Hancock MP, Secretary of State for Health and Social Care, asking for a similar independent review of ECT https://www.uel.ac.uk/-/media/staff/r/john-read/call-for-independent-review-of-ect-july-10.ashx We have also written to our own MPs and have so far had a positive response from 12 of them who have pledged to write to Mr Hancock and table parliamentary questions. Unfortunately, most of them have received a standard response from the Department of Health claiming that ECT is ‘tightly regulated’ and not responding to our request for a review. We therefore need to keep up the pressure.
Our main areas of concern are listed below. We hope there can be consensus across the spectrum of opinion that all of these need urgent attention.
ECT services are assessed by the ECT Accreditation Service (ECTAS), which was set up by the Royal College of Psychiatrists in 2004 on the basis of NICE 2003 recommendations. There is thus no independent monitoring. It is not widely appreciated that accreditation is optional, and unaccredited units can continue to operate, without consequences for inadequately trained staff, badly-maintained equipment, and inappropriate patient assessment.
ECTAS standards, even when achieved, are minimal and deceptive, and Trusts and the Care Quality Commission may be misled by the fact that units can be accredited while failing to offer basic monitoring and consent. Type 1 standards are essential, and ‘Failure to meet these would result in a significant threat to patient safety, rights or dignity and/or would breach the law’. Type 2 standards are ‘expected’ although only 80% compliance is required; while Type 3 standards are ‘aspirational’, and only 60% compliance is required. Alarmingly, monitoring for cognitive impairment was, until Dr Cunliffe challenged it, only a Type 2 standard, and was the most commonly missed one according to ECTAS newletters. Although it is now Type 1, monitoring is still perfunctory – the 3rd edition of the ECT handbook states: “We currently have no valid, reliable test of remote memory be it autobiographical or impersonal, that we can use clinically in routine ECT practice (Waite & Easton, 2013 p.83).’ A recent audit showed that most Trusts use extremely brief cognitive screening tools, if any at all (Read et al, 2018).
The same audit found that few Trusts were able to produce outcome data, and those that did were mostly relying on a brief 3 question measure filled in by the referring clinician at the start and end of treatment. No longer-term outcome measures of recovery are required by ECTAS.
In summary, official accreditation standards for assessing outcomes and potential harms are minimal to non-existent; but even so, failure to meet them does not constitute a barrier to continued practice. In-house regulation is unlikely to bring about more than cosmetic changes despite sustained pressure from those harmed by ECT. A summary of Read et al’s audit of ECT clinics, which was based on Freedom of Information requests, can be found here: https://onlinelibrary.wiley.com/doi/abs/10.1111/papt.12160 and an accessible summary of the findings is here: https://www.madintheuk.com/2020/06/ect-is-80-years-of-electrocuting-the-brain-enough/
This contrasts with claims in the media, such as this one by Dr Rupert McShane, chairman of the College’s Committee on ECT and Related Treatments, that ‘The close monitoring of potential side effects is a routine part of practice and allows clinicians to adjust treatment accordingly.’ https://www.dailymail.co.uk/news/article-8513921/Ban-Cuckoos-Nest-electric-shock-therapy-depression-patients-plead.html
Evidence of harm
The most recent ECTAS patient information leaflet states that ‘Side effects are usually mild and short term but can sometimes be more severe and potentially long-lasting…..Some patients do say that they have suffered brain damage and that they do have long-term side effects that have changed their lives’ https://www.rcpsych.ac.uk/mental-health/treatments-and-wellbeing/ect.’ In fact, ECTAS’s own survey in 2015 found that nearly one in 5 people reported severe long term memory loss (Hailey et al, 2015). There are many survivor accounts of the devastating impact ECT can have on all aspects of people’s lives, which encompass not just loss of previous memories of family, friends and significant personal events, but permanent difficulties with executive functioning, planning, attentional and organisational abilities, and higher level cognitive processes in general (see http://ectjustice.com). These are officially denied by the Royal College of Psychiatrists, whose former president, Dr Wendy Burn, states that ‘There is no evidence that ECT causes brain damage’ https://twitter.com/wendyburn/status/1038530873409323008
Most Trust leaflets do not mention such risks, and there is much resistance to using the term ‘brain damage’ term rather than the more general ‘cognitive impairment.’ A recent audit found that few Trusts could supply records of adverse events during treatment and none was collecting reports of such events after the end of treatment (Read et al 2018). In fact, in 2017 the MHRA (Medicines and Healthcare products Regulatory Agency) received no reports of ECT adverse effects. ECTAS has not required follow-up data about adverse events until this year, when an additional standard of assessing memory and cognitive effects at 2 months was added under. After Dr Cunliffe met former RCP President Dr Wendy Burn last year, the provision of rehabilitation for those impaired was added, but only as a Type 3, non essential standard. The possibility of serious harm should not be open to dispute, since Thymatron, a manufacturer of ECT machines, was recently required to add ‘permanent brain damage’ to the risks of using these devices http://www.thymatron.com/downloads/System_IV_Regulatory_Update.pdf
Use not indicated by NICE guidelines
The NICE 2010 update on ECT says it should be used ‘only to achieve rapid and short-term improvement of severe symptoms after an adequate trial of other treatment options has proven ineffective and/or when the condition is considered to be potentially life-threatening’ (NICE 2010). NICE guidelines for depression (NICE 2017) state that clinicians should: ‘Consider ECT for acute treatment of severe depression that is life‑threatening and when a rapid response is required, or when other treatments have failed’ and ‘Do not use ECT routinely for people with moderate depression but consider it if their depression has not responded to multiple drug treatments and psychological treatment.’
However, Read et al’s audit found that NHS Trusts use ECT 12 times as often as other areas, suggesting that at the very least, these guidelines are not being consistently followed. Although many Trusts did not keep records about whether psychology was offered first, those that did return figures reported that over a quarter were not given this option. Other Trusts were giving ECT for primary diagnoses where it is not indicated, such as anxiety, ‘personality disorder’ and dementia.
Lack of informed consent
GMC guidelines on informed consent state that: ‘You may need to support your discussions with patients by using written material, or visual or other aids. If you do, you must make sure the material is accurate and up to date’ (p.13) (https://www.gmc-uk.org/-/media/documents/gmc-guidance-for-doctors—consent—english_pdf-48903482.pdf?la=en&hash=588792FBA39749E57D881FD2E33A851918F4CE7E) . NICE 2003 recommended that ‘National information leaflets should be developed through consultation with appropriate professional and user organisations to enable individuals and their carers/advocates to make an informed decision regarding the appropriateness of ECT for their circumstances. The leaflets should be evidence based, include information about the risks of ECT and availability of alternative treatments.’
This has not happened; on the contrary, we have discovered that NHS Trusts across the UK are using leaflets based on false information. Typically this includes claims that ‘ECT alters the way these chemicals are acting in the brain and so help a recovery’; ‘It causes the release of chemicals in the brain (called neurotransmitters) and, probably more importantly, makes the chemicals more likely to work normally’ ; ‘Repeated treatments can alter chemical messages in the brain and bring them back to normal’; and so on. There is not, and never has been, any evidence that depression is caused by a ‘chemical imbalance, let alone that ECT rectifies it, and the RCP has distanced itself from such explanations (see page 7 https://www.rcpsych.ac.uk/docs/default-source/improving-care/better-mh-policy/position-statements/ps04_19—antidepressants-and-depression.pdf?sfvrsn=ddea9473_5. )
The new ECTAS patient information leaflet published in July 2020 makes the equally unevidenced claim that ECT ‘…. causes the release of certain brain chemicals. These seem to stimulate the growth of some areas in the brain that tend to shrink with depression. ECT also appears to change how parts of the brain which are involved in emotions interact with each other.’ This is, frankly, nonsense, and we were astonished to read it. Coupled with frequent, unreferenced and unevidenced statements about 9 out of 10 people improving after ECT, which is regularly described in leaflets as ‘one of the safest treatments in medicine’, and failure to mention the short term nature of effects, it is clear that people are rarely in a position to give informed consent as described in GMC guidelines.
NICE 2003 ‘Guidance on the use of electroconvulsive therapy’ recommendations
In 2003, NICE made a series of best practice recommendations based on their expressed concerns about many aspects of ECT research and practice ( www.nice.org.uk/guidance/ta59) Among their conclusions were that patient opinion ‘…. varies from those who consider that its adverse effects are tolerable to those who consider that it is associated with unacceptable side effects including brain damage, severe confusion and considerable cognitive impairment in both the short and longer terms. While some individuals considered ECT to be a beneficial and lifesaving treatment, others reported feelings of terror, shame and distress, and found it positively harmful and an abusive invasion of personal autonomy, especially when it was administered without their consent’.
The NICE committee noted that ‘Further research is urgently required to examine the longterm efficacy and safety of ECT… The outcomes considered in the RCTs also did not adequately capture the experience of service users, and the validity of many of the scales used to measure outcome had not been clearly established… the Committee took special note of the evidence from observations of users’ experiences relating to the adverse effects of ECT. In particular, the incidence, extent and timescale of cognitive impairment following ECT was discussed in detail. It was apparent that the nature of cognitive impairment experienced by users was variable and often long lasting to such a degree that it outweighed their perception of any benefit from ECT treatment. The Committee considered that further research, both qualitative and quantitative, was needed to define the effect of ECT on cognitive impairment.’
The Committee recommended setting up an audit cycle in all ECT units to ensure NICE guidelines are being met. In the 17 years since their report, none of their recommendations has been implemented.
The Cumberlege review into pelvic meshes identified very similar themes to those highlighted above, which they summarised under the headings ‘No one is listening – the patient voice dismissed’; ‘I was never told – the failure of informed consent’; ‘Holding to account – Guidelines and quality’; and ‘Redress – We want justice’.
We are pursuing a number of avenues, some of which are bearing fruit:
- We now have support from a number of organisations including National MINDhttps://www.mind.org.uk/news-campaigns/news/mind-backs-calls-for-a-review-into-the-use-of-electroconvulsive-therapy-ect/, the Association of Clinical Psychologists UK, the National Counselling Society, Platfform, the Council for Evidence-based Psychiatry, Headway, and others.
- Several articles on our campaign have been published in the local and national press, including these:
- Two major journals have published articles:
- A law firm, Freeths, is taking on clients who have been damaged by ECT. They can be contacted here:https://www.freeths.co.uk/legal-services/individuals/clinical-negligence/electroconvulsive-therapy-ect/
We are very grateful for your interest and support. If you write to your MP, please let us know what response you get, via LucyJohnstone16@blueyonder.co.uk. We will keep you updated.
Buchan, H., Johnstone, E., McPherson, K., Palmer, R.L., Crow,T.J. & Brandon, S. (1992).Who benefits from electroconvulsive therapy? British Journal of Psychiatry, 160, 355–349.
Hailey, E, Hodge, S & Buley, N (eds) (2015) ECTAS Interim Report: Patient perspectives. RCPSych Publications
Friedberg, J. (1977). Shock treatment, brain damage, and memory loss: a neurological perspective. American Journal of Psychiatry 134: 1010–4.
NICE (2009). Depression in adults: recognition and management. https://www.nice.org.uk/guidance/CG90
NICE (2010) The use of electroconvulsive therapy https://www.nice.org.uk/guidance/ta59/resources/the-use-of-electroconvulsive-therapy-pdf-371522989
NICE (2017). Depression in adults: Recognition and management. https://www.NICE.org.uk/guidance/cg90/chapter/1-Guidance
Waite, J, & Easton, A (2013) The ECT Handbook (3rd edition) RCPsych Publications