‘To the Patient Safety Commissioner, UK’
Call for an independent review into the practice of ECT (electroconvulsive therapy)
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. ECT is still given to around 2,500 people a year, mainly older women, about a third of whom are non-consenting. We have written to Matt Hancock MP and subsequent Secretaries of State for Health and Social Care to ask for such a review, as well as conducting research, writing articles, giving talks, and taking other actions over a period of many years. The letter is here:
http://cepuk.org/2020/09/07/blog-call-for-an-independent-review-into-the-practice-of-ect
About 25 MPs have now raised this issue with the Secretary of State, and received a standard response from the Dept of Health that ECT it is ‘tightly regulated’. Dr Rosena Allin Khan has asked two questions about the regulation of ECT in Parliament:
Nadine Dorries answered the first question by saying there are no plans for an independent review of ECT. In reply to a follow-up question about who the regulator is, Nadine Dorries stated that the role falls to the Care Quality Commission. However, the CQC itself has told the campaigners that it has ‘no such formal role’. ECTAS, the quality improvement body run by the Royal College of Psychiatrists, does not require clinics to meet its accreditation standards in order to operate, and has told us it does not pass data to CQC. As you will know, NICE issues guidelines, not mandatory standards. Therefore, it appears that no organisation is effectively monitoring, auditing or regulating ECT.
We also have support from a number of organisations including National MIND https://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, the Royal College of Nursing, the brain injury charity Headway, and others.
Our main areas of concern are listed below. While we accept that some people find ECT helpful, and that doctors prescribe it in good faith, we hope there can be consensus across the spectrum of opinion that all of these issues need urgent attention.
Lack of evidence of effectiveness
The journal article which started this particular revival of long-standing concerns is here: (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.
Accreditation and audit
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. We have exposed several examples of poor practice in the media:
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 a member of our group challenged it, only a Type 2 standard, and was the most commonly missed one according to ECTAS newletters. 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. 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
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).
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. After a member of our group 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
Members of our group have published two audits of ECT clinics based on FOI requests, which show widespread failure to adhere to NICE guidelines, no longterm follow up for adverse events, and a forty-seven fold variation in ECT rates per capita between the highest and lowest using Trusts, suggesting a major failure in adhering to shared clinical recommendations (see link):
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, contrary to NICE. Other Trusts were giving ECT for primary diagnoses where it is not indicated, such as anxiety, ‘personality disorder’ and dementia.
Lack of informed consent
NHS Trusts across the UK are using patient leaflets based on false information. Typically this includes claims that ‘ECT alters the way these chemicals are acting in the brain and so help 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. The new patient information leaflet published by the Royal College of Psychiatrists 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.’ It is clear that people are rarely in a position to give fully informed consent. This forms the basis of a planned legal case taken out by Freeths law firm on behalf of over 100 patients who say ECT left them permanently impaired:
NICE 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 recently updated NICE Guidelines on Depression in Adults included a section on ECT. They noted that the gaps in evidence have still not been filled. However, this did not result in any further limitations on practice – which in any case would not be mandatory.
Similarities to the Cumberlege findings
The Cumberlege review into pelvic meshes identified very similar themes to those highlighted above, which it 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’. There are many similarities to the experiences of ECT recipients.
A number of articles on our campaign have been published in the national press, including:
https://www.dailymail.co.uk/health/article-8542037/Is-time-BAN-electric-shock-therapy.html
https://www.bbc.co.uk/news/uk-52900074
Several popular journals have published articles, in addition to scholarly reviews by our group:
Psychology Today https://www.psychologytoday.com/gb/blog/psychiatry-through-the-looking-glass/202008/80-years-do-we-know-if-electroconvulsive-therapy
Medscape: https://www.medscape.com/viewarticle/934536
Ongoing debate in the Psychiatric Times: https://www.psychiatrictimes.com/view/doubts-about-ect
We, including the many patients harmed and unheard in relation to their experience of ECT, would be very grateful if you can prioritise a review into this practice, or else tell us how we can ensure that one takes place.
We are very happy to discuss the matter further, and look forward to hearing from you at your earliest convenience.
Lucy Johnstone
On behalf of the UK ECT Improving Standards Group
References
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.
