How Accurate Are ECT Patient Information Leaflets Provided by Mental Health Services in England and the Royal College of Psychiatrists? An Independent Audit

Measure

To generate an Accuracy Score for the leaflets, definitions were drawn up for 35 criteria, based on the research literature and the researchers' knowledge of NHS and RCPsych ECT leaflets. The 25 “positive” criteria represented relevant pieces of information that are accurate and/or evidence-based. The ten “negatives” represented inaccurate, nonevidence-based statements.

Participants

Thirty-six of the 56 Trusts provided a copy of their information leaflet (see Table 2).

Nine failed to either provide a leaflet or stated that they used another party's leaflet (Black Country Partnership; Essex Partnership; Hertfordshire; Norfolk & Suffolk; Sheffield Health & Social Care; South West London & St Georges; Surrey & Borders; Tavistock & Portman; and Worcestershire).

Four Trusts (Barnet, Enfield & Haringey; Oxford; South West Yorkshire; and Tees, Esk & Wear Valley) declined to send their leaflet, using exactly the same words as each other:

Three trusts said they do not use ECT (Bradford; East Sussex; Solent). Two were not contactable through the FoI email addresses on their websites (Isle of Wight; Humber). Two had merged with other Trusts (Dudley & Walsall merged into Black Country; 2Gether merged into Gloucestershire).

So, the response rate was 36 out of the 51Trusts that use ECT (70.6%).

NHS Trusts

Two Mind Leaflets

Both Mind leaflets surpass all other leaflets. The current Mind leaflet (2019) is the only leaflet to include none of the 11 inaccurate statements.

Three Royal College of Psychiatrists Statements

The overall Accuracy Scores of the three RCPsych leaflets are 11 (2007), 12 (2012), and 8 (2020). All three include more accurate statements (between 15 and 19) than the Trusts' average of 12.8. All three, however, include high numbers of inaccurate statements (6 or 7 out of a possible 11), all slightly higher than the Trusts' average of 5.8. The most recent of the three has the fewest accurate statements (15), and seven inaccurate statements.

All three RCPsych leaflets wrongly claim that ECT saves lives, that it corrects deficits in the brain, and that the memory loss is partly caused by depression rather than ECT. They all portray depression as an “illness,” while failing to mention any psycho-social causes of depression. None of them mention cardiovascular side effects, or that memory loss is greater in women and older people. None inform patients that they must be given 24 hours to consider giving consent. None mention co-production with user/patient groups.

The current RCPsych leaflet improves on its two predecessors by accurately stating the risk of driving after ECT, and by not claiming that most/all ECT occurs on a voluntary basis. Unlike both the 2007 and 2012 leaflets, however, the recent publication fails to acknowledge placebo response rates, the lack of long-term benefits, or that it is not known how ECT works. The current leaflet is the only one of the three that minimizes memory loss, with phrases like “about 2%,” “a small number," and ”in most people memory difficulties clear within 2 months of the last treatment and do not cause problems or distress.”

It is also the only one of the three to claim a high recovery rate (68%) with no reference to the fact that a significant proportion thereof would be attributable to placebo effects (Rasmussen, 2009). (It also fails to point out that the 68% figure was based on subjective ratings by the psychiatrists who administered the ECT). Finally, it is the only one of the three not to mention patients' rights under the Mental Health Act.

The rather bizarre preamble of the latest RCPsych leaflet states:

Compliance With NICE Recommendations and RCPsych's Code of Ethics

There is no evidence that the NICE recommendation (2003) that “information leaflets should be developed through consultation with appropriate professional and user organizations” is being heeded. Only one Trust leaflet (Coventry and Warwick), and none of the RCPsych leaflets, mention consulting user organizations. It is possible that some consultation occurred but is not reported in the leaflets. Fourteen Trusts do either refer to, or provide a leaflet from, a professional organization. In all cases that organization is the RCPsych, implying that no other mental health professions are considered “appropriate” (NICE, 2003).

The NICE recommendation that the information leaflets should be developed on a “national” level, is still being ignored. This study reveals a plethora of local leaflets, varying greatly in content and accuracy. Furthermore, the ECT Accreditation Service [ECTAS] requirement regarding leaflets (RCPsych, 2020b; Standard 145) is not consistent with the NICE recommendation in that it suggests local leaflets are acceptable:

ECTAS is a subsidiary of the RCPych. The ECTAS standard for leaflets doesn't mention what should be included in leaflets, whether they should be evidence-based (as recommended by NICE), or who should be consulted in their development. So, all Trusts would pass this ECTAS benchmark simply by virtue of having a leaflet, any leaflet, regardless of how many inaccurate statements it makes, or how many core information details it omits.

Clearly, both NICE's call for “evidence-based” leaflets and the RCPsych's own call, in its Code of Ethics, for “sufficient and understandable information to enable the patient to make an informed decision” are being ignored. The Trusts have an average of nearly six misleading statements, and the current RCPsych leaflet has seven. They all omit important information about efficacy, risks, or rights.

Efficacy

Most Trusts inform the public that in a very high percentage of cases ECT leads to recovery. The unsubstantiated figure of “80%” or “about 80%” has been something of a mantra for ECT proponents for several decades now (Read et al., 2013; Read et al., 2019). For example, “More than 8 out of 10 depressed patients who receive ECT treatment respond well, making it the most effective treatment for severe depression” (Oxleas). The 19 Trusts (52.7%) that make such a claim, and the RCPsych's current leaflet (which claims a 68% recovery rate), all fail to inform patients that a large proportion are attributable to placebo effects (Rasmussen, 2009; Read et al., 2019). Only six Trusts (16.7%) mention placebo effects at all.

The majority of Trusts (32; 83.3%) fail to inform us that there is no evidence of long-term benefits, or that relapse rates are very high. Finally, more than half of the Trusts (22; 61.1%), and all three RCPsych leaflets, wrongly claim that ECT saves lives by preventing suicide.

Meta-analyses of research into ECT for depression, like many information leaflets, report that ECT is effective. A recent review of these meta-analyses found, however, that they pay scant attention to the extremely poor quality of the 11 placebo-controlled studies on which they were based (there have only ever been 11), all of which are at least 35 years old (Read et al., 2019). The review concluded that after 85 years of usage there is no robust evidence that ECT does, or does not, work in the short-term, that is, during the treatment period. It also found, like the meta-analyses (e.g., UK ECT Group, 2003), that there is no evidence of any benefits beyond the end of treatment, compared to placebo. In the US, the Food and Drug Administration (2020) dictates that the following ‘warning’ be ‘prominently placed’ next to all ECT machines: ‘The long-term safety and effectiveness of ECT treatment has not been demonstrated.’

A review of placebo-controlled studies (where the placebo-group receives “sham ECT,” that is, the general anesthetic is adminstered but not the electric shock or convulsion) (Rasmussen, 2009, p. 59) concluded:

The 2019 review (Read et al.) reported that none of the meta-analyses provided any evidence that ECT prevents suicide, as frequently claimed by ECT advocates and information leaflets. One meta-analysis, by the respected UK ECT Group (2003), states: “Although ECT is sometimes thought to be a life-saving treatment, there is no direct evidence that ECT prevents suicide” (p. 806). A 170-page UK government report concluded: “The evidence did not allow any firm conclusions to be drawn regarding the … impact of ECT on all-cause mortality.” (Greenhalgh et al., 2005, p. 83). A recent study found that 14,810 ECT patients were 16 times more likely to have killed themselves in the year after treatment than 58,369 controls; but after controlling for confounding variables the advantage of the non-ECT group over the ECT patients was not quite statistically significant (Peltzman et al., 2020).

Risks

Legal Rights

About 37% of people given ECT in England are forced to have it against their will, that is, without giving consent; with some Trusts reporting rates above 70% (Read et al., 2018; Read et al., 2021).

Twenty-two Trusts (61.1%), but not the current RCPsych leaflet, make patients aware of their rights under the Mental Health Act. Only nine Trusts, and none of the RCPsych leaflets, explain how to access a legal advocate. Almost all Trust leaflets (32/36), and all three RCPsych leaflets, do inform patients that after they give consent they can withdraw it later.

Only one Trust leaflet (Gloucestershire) and the two Mind Leaflets inform patients that they should be given a day to think, and consult, about whether to give consent. None of the RCPsych leaflets do so. ECTAS Standard 4.35 states:

Standard 4.35 is a level 2 standard, which are “standards that an accredited team would be expected to meet” (ECTAS, 2020, p. 5).

Only four Trusts (Gloucesterhire; Kent and Medway; Lancashire; Somerset), and none of the RCPsych leaflets, refer people to the Care Quality Commission's (2012) document summarizing their rights under the Mental Health Act. ECTAS Standard 146 states:

This is a level 1 ECTAS standard, about which ECTAS states:

Biological Causes and Mechanisms

Twenty-one Trusts (58.3%) make claims about bio-medical causes of depression and/or refer to it as an illness or disease, without identifying any possible psycho-social causes of depression that might need addressing. This is also true of all three RCPsych leaflets. The current RCPsych leaflet, for example, uses terms like “your illness,” “mental illness,” “symptoms” and so on, throughout. The only leaflets to mention any psycho-social causes are the two Mind leaflets.

In a similar vein, most of the Trust leaflets (28; 77.8%), and all three RCPsych ones, claim that ECT corrects biological causes of depression. The current RCPsych leaflet (2020, p.1) is far from alone in proclaiming:

An ECT recipient and a Clinical Psychologist at the center of the ongoing campaign for an independent enquiry into the use of ECT in the UK (Johnstone & Cunliffe, 2020) responded:

Psychological Therapies

NICE guidelines for depression (2017) state:

Most will already be taking, or have tried, antidepressants. The current RCPsych leaflet rightly informs patients that they must also have been offered psychological therapy before being considered for ECT. However, 24 (67%) of the Trusts do not. This is consistent with the finding, in two recent audits, that most Trusts cannot answer the question “How many people had ECT without receiving a NICE recommended psychological therapy?” The first audit (Read et al., 2018) concluded that:

In the second audit (Read et al., 2021) only one Trust could answer the question. This lack of interest by service providers is reinforced by the RCPsych's ECTAS. Its surveys of ECT usage (Buley et al., 2017) and its Standards for Accreditation (ECTAS, 2020) fail to mention NICE guidelines about using ECT “when other treatments have failed.”

ECTAS Influence Over How Trusts Responded to FoI Request

Four Trusts (Barnet, Enfield & Haringey; Oxford; South West Yorkshire; Tees, Esk & Wear Valley) declined to provide their leaflet but did reply, using the exact same words as each other:

We have previously reported that a total of 12 Trusts used replicated, identical (verbatim) statements like this to respond to several of the other questions in our FoI request (Read et al., 2021). When asked to explain this use of identical phrases, some Trusts denied that the statements were copied from, or influenced by, any external organization. Others were more forthcoming. One Trust replied “Yes” to our question “Were the statements copied?” and, in reply to “If Yes, from which document were they copied?,” they wrote “Circular received from ECTAS.” Another Trust reported that they had copied the response from ‘The Royal College’ and, in answer to ‘Did your Trust receive any guidance or instruction from outside the Trust that led to the use of these three statements’, acknowledged that they received guidance/instruction from ‘ECTAS Forum’. It is of concern that some NHS Trusts were influenced, in their responses to a FoI request, by a communication from the professional body responsible for accrediting ECT clinics in England.

The ECT Handbook

Many of the errors in the leaflets reviewed here are reproduced in, or perhaps partially based on, the latest edition of the RCPsych's ‘ECT Handbook’ (Ferrier & Waite, 2019), to which some patients and families might turn if they feel the leaflet they are given is inadequate. It opens with the RCPsych's ‘Position Statement on ECT for Depression’:

There is no mention in this position statement of any adverse effects, nor of the NICE recommendation that inadequate response to psychological treatments should be established before using ECT. This is immediately followed by the usual unsubstantiated fiction that ECT should be a ‘first-line treatment’ for people at ‘high suicidal risk’ (p. 3).

The Handbook matches the leaflets, sometimes verbatim, when claiming that ‘ECT is a low-risk procedure with a mortality rate similar to that of anesthesia for minor surgical procedures’ (p. 121), with the usual failure to point out that what is involved is general anesthesia, not just a localised injection, and that there will be about ten of them, not just one. The chapter on ‘Cognitive Side-Effects of ECT’, like the leaflets, fails to mention that women, who receive ECT twice as often as men, experience more memory damage than men.

The Handbook does, to its credit, acknowledge that ‘more than 80%’ relapse within 6 months. This, readers are told, can be fixed with antidepressants. So the massive relapse rate does not mean ECT is ineffective, it means that it is effective but only if you give a completely different treatment after the ECT. To believe this you also have to forget that ECT is primarily targeted at people for whom antidepressants don't work.

The Handbook actually goes beyond the leaflets, and NICE guidelines, in endorsing ECT for people diagnosed with ‘schizophrenia’, for pregnant women, and even for children and adolescents.