Date: Thu, 11 Jan 1996 07:08:31 EST From: Peter_Lindley@SCMH.CCMAIL.COMPUSERVE.COM Subject: UKAN ECT Survey To: Multiple recipients of list MADNESS Greetings to all, Here is the UKAN survey on ECT a little earlier than I anticipated. UKAN is continuing to work on the survey data and will be publishing more reports soon. I'll post these to the list as I receive them. The United Kingdom Advocacy Network is a federation of user-led groups embracing a diversity of interest and experience. For more information contact: Terry Simpson The United Kingdom Advocacy Network, Premier House 14 Burgess House Sheffield S1 2HG UK Phone (0) 114 272 817 UKAN is not yet on-line but I can pass on any messages. ***************************** Peter_Lindley@scmh.ccmail.compuserve.com ********************UKAN ECT SURVEY FOLLOWS******************** ECT - Electro Convulsive Therapy The National Experience The results of a survey carried out by the UK Advocacy Network from June to August 1995 to find out views of people with direct experience of ECT. Our primary aim in conducting the survey was to allow people the opportunity to define their experiences of a controversial treatment within their own terms of reference. Copies of the questionnaire were distributed to all UKAN affiliated groups and to mental health service users and survivors through the MINDLINK and Survivors Speak Out networks. Copies of the questionnaire were also requested by service users and mental health workers from health, social services and voluntary sectors. The questionnaire was distributed throughout England, Scotland and Wales. This report represents just one of the uses to which we shall be putting the survey replies. We intend to produce a collection of personal testimonies on the effects that ECT has had on people's lives - a number of people were moved to produce quite lengthy accounts of their experiences, indicating the strength of feeling that exists around this issue. It is also hoped that the UKAN Training and Development workers will be able to undertake a number of in-depth interviews with survey respondents, further increasing our awareness of the immediate realities of the national experience of ECT. 308 replies were received. 52.6% of respondents were female and 46.1% male. 93.5% described their ethnic origin as white. Voluntary/Compulsory Treatment The majority of respondents (61.4%) received ECT voluntarily while one-third were given it compulsorily. It must be noted, however, that many respondents felt that they were given no choice but to consent to ECT and so in effect the treatment they experienced was not strictly voluntary. The following comments are representative of many respondents' experience: Although I was a voluntary patient I was constantly afraid that I would be sectioned and given ECT without my consent. After two and a half months on a psychiatric unit I was worn down and desperate to leave. I was given two choices - stay on the ward and on drugs for many more months or have ECT and be able to leave much more quickly. I saw ECT as my only way out of the place. I was a voluntary patient when I had ECT but I didn't ask for it. I was told that I was having it - I didn't know my rights and felt incapable of challenging this at the time. I was told my baby daughter would be put into foster care if I didn't have ECT (even though my husband could have looked after her). I submitted, much against my will to ECT ... after a long argument about it and only after being told, "If you don't come quietly, we - the orderlies - will have to drag you there". Those receiving ECT voluntarily seem to have found the treatment less damaging and more helpful than those receiving it compulsorily. 50% of women who did not consent to ECT experienced the treatment as 'damaging' with only 8.6% describing it as 'very helpful', whilst of those women who consented, 33.7% found it 'damaging' and 16.5% 'very helpful'. The contrast is even more marked amongst men where 21.2% who received ECT voluntarily described the experience as 'damaging' compared to 51.2% among those who were treated compulsorily. 20% of men who received ECT described it as 'very helpful' but this figure falls to only 2.3% among those men treated compulsorily. The following remarks illustrate that compulsory ECT was seen as especially harmful by respondents: It should NEVER be given under compulsion. ECT should not be administered to anyone against their wishes. It is the most horrific experience any person could encounter. ECT is harmful and not beneficial, especially when it is compulsory. I was forced to have ECT which destroyed me. ECT Used As A Threat More than a quarter of respondents were threatened with ECT as a means of making them comply. The use of ECT as a threat also had a marked effect on the perceived effectiveness of the treatment. 62% of those threatened with ECT found the treatment 'damaging' compared to 27.3% of those for whom ECT was not used as a threat. Only 3.6% of those threatened with the treatment described it as having been 'very helpful' compared to 17.7% of those who had not been threatened. It is not surprising then that for many ECT was experienced as a punishment as the following comments illustrate: A form of punishment for not being in control. I think it could be seen as a punitive form of corporal punishment to make you act and think in certain way. Informed Consent? Overall, 71.7% of respondents received no explanation of ECT at all. 29.9% of men received an explanation compared to 20.3% of women. Of all those receiving an explanation of the treatment they were about to receive, 86.3% said that they understood it. Whether or not the ECT was explained beforehand also had a bearing on the individual's perceived effectiveness of the treatment. 30.4% of those who received an explanation described the treatment as 'very helpful' compared to only 8.5% of those who received no explanation. Those receiving an explanation were also less likely to regard their experience of ECT as 'damaging'; 11.6% compared to 44.8% who did not receive an explanation. The following comments were typical of the experience of many: No explanation was given only that it would be clearing my depression. When I had ECT I was told to sign a form which was not explained to me what I was signing. Lack of explanation before treatment resulted in fear of results of treatment. Diagnosis The most common diagnoses for people receiving ECT were depression (44.9% of respondents), schizophrenia (20.8%) and manic depression (16.2%). Others include post-natal depression; anxiety; hypomania; post-traumatic stress disorder and puerperal psychosis. Females were significantly more likely to be diagnosed with depression (62.2%) than men (47.7%). Men, at 34.6%, were more than twice as likely as women to be diagnosed with schizophrenia. Those diagnosed with schizophrenia were more likely, at 47.3%, to be given ECT compulsorily than those with depression (27%) or manic depression (32.6%). Women, at 38.7%, regardless of diagnosis, were more likely than men (32%) to be given ECT compulsorily. Treatment of Last Resort? ECT is said to be a treatment of last resort and yet 17.8% of respondents were offered no other treatment at all. Only 15.2% received counselling or psychotherapy whilst the vast majority (76.3%) were prescribed drugs. 45.8% of respondents were aged between 19 and 29 years when they first received ECT. 22.4% of this age group were offered no other treatment at all. 69.9% of them were prescribed drugs prior to receiving ECT and only 7.7% received counselling or psychotherapy. 13.3% of respondents were aged 18 years or under when they first received ECT - the youngest being just 13 years old. Of this age group 11.6% were offered no treatment other than ECT with the same number receiving counselling or psychotherapy. 76.7% of this group were prescribed drugs. It is apparent then that as far as the psychiatrists are concerned the prescription of drugs is the main alternative to administering ECT. As one respondent stated, "When offered ECT I was told that it was the only option left as anti-depressants had not worked". Many respondents felt that treatments such as counselling and psychotherapy should have been made available to them since, in the words of one respondent, " how can putting electric shocks through people help with illnesses which have an emotional, psychological or spiritual dimension"? A shared concern was that ECT was used "with little time or thought being given as to why a person is feeling so depressed". The following comments illustrate the belief of many that what they needed was not ECT but a more personal form of therapy: I should have been offered bereavement counselling. The hospital I was in used it as a first resort. Of course, it's probably the cheapest way, but in this day and age funds should be made available for counselling and more natural and long lasting remedies. I received my last treatment in 1991, since when I have undertaken two weekly psychotherapy sessions privately. There has been no return of my illness and I am now working again. I now feel sure that had I received psychotherapy in 1970, having had ECT for the first time, I would not have had further psychotic depressive episodes. Effectiveness When asked to rate the effectiveness of ECT on a scale ranging from 'damaging' to 'very helpful' 35.1% of respondents thought 'damaging' best described their experience. 13.6% found the treatment 'very helpful'; 16.5% 'helpful'; 16.5% 'not helpful' and 13.6% believed that the treatment had made 'no difference'. Of all the women who received ECT 60.9% described the treatment as 'damaging' or 'not helpful'. This compares to 46.4% of men. This is not surprising since women were less likely to receive an explanation of the treatment and more likely to be treated compulsorily. Half of those diagnosed with manic depression described their experience of ECT as 'damaging'. This compares to 24.6% of those diagnosed with depression and 35.2% of those with schizophrenia. The following comments are typical of the many who felt their condition was made worse by ECT: After ECT I suffered the most severe depression imaginable for three and a half years during which time I tried to commit suicide as I could not bear it any longer. Before having ECT I was screwed up and miserable, after having it I had, and still have, clinical depression. I believe ECT made me ill. Was given ECT twice, but was more screwed up by the concept and actuality of the process than the original depression. A commonly held view was that ECT "makes you forget your distress for a while but it comes back". It was seen as "artificial and false, not natural, only temporary". Therefore, ECT was seen by many as able to provide initial relief but no long term remedy as these two comments illustrate: I thought that my ECT treatment had cured my depression, but after about four weeks I was back to square one again. Although ECT certainly broke the depression I was in I don't think ECT cures anything. However, ECT did prove to be an effective form of treatment for some, especially for those diagnosed with depression, as the following comments illustrate: Found it very effective to get me over depression and back to normality again. ECT has transformed my life - when I become a vegetable it transforms me into a happy and full of life person. It has prevented me dying an early death. Adverse Effects Memory loss, by far the most common side effect of ECT, was reported by 72.7% of respondents. For many this loss has proved to be long term. One woman, now in her 60s, who had ECT at the age of 26, reported, "I still have lost memory of events before ECT". The following comments also illustrate the fact that memory loss as a result of ECT is not necessarily only short term: There are about four years of my life that I cannot remember at all, people, places, events. Two years of computer programming were lost out of my memory after ECT - the main reason I don't want it again. The complete list of side effects reported includes weight loss; weight gain; lack of concentration, severe headaches and migraines; loss of confidence, dignity and self-esteem; fear of hospitals and psychiatry; anger and aggression; psychological trauma; loss of self and soul; anxiety; body spasms; brain damage; nausea; nightmares and speech difficulties. The following comments illustrate the reality of these effects on people's lives: I think ECT has permanently damaged my brain. ECT in my eyes is very damaging to people's inner self. I felt a diminished person. Since ECT I have been unable to work. My professional career is in ruins. I feel abused by this treatment: I was told there were no side effects. ECT did me no good whatsoever. I had twenty ECT. I hardly spoke for five years. Its effects long term have been, and still are, extremely damaging, and disabling. Its effects have ruined many lives. Never Again Time and time again ECT was described as "brutal", "barbaric", "terrifying", "degrading", "abusive" and "not fit for a civilised society". When asked if they would ever consider requesting ECT again, 78.5% of respondents replied that they would not. "I would prefer to commit suicide rather than go through this horrific treatment again," was one respondent's response. 86.3% of respondents believed that ECT was too freely prescribed. Many called for campaigns to minimize the use of ECT and several expressed the view that this "absolutely useless treatment" should be banned outright. A common view was that psychiatrists had no idea of how ECT worked with one respondent claiming that, "It's as scientific as kicking a TV when it does not work". December 1995