A survey of people’s experiences of Electro-Convulsive Therapy (ECT)
SHOCK TREATMENT
“ I would happily die rather than have ECT again” (Woman, Yorkshire)
“If I had not received ECT I would be dead by now.” (Woman, Staffordshire)
INTRODUCTION
Electro-convulsive therapy (ECT) involves passing an electric current through an anaesthetised person’s brain so as to produce a seizure (fit) with the aim of relieving severe depression. Its use is highly controversial.
Under the Mental Health Act 1983 ECT can be given to detained patients without consent. In the period January to March 1999, 2,800 patients received about 16,500 administrations of ECT. 700 (25%) of these patients were detained under the Mental Health Act 1983. 29% of the detained patients consented to the treatment, 59% did not and were treated after a second opinion had been obtained and 12% were treated as an emergency without a second opinion.
Later this year Parliament is likely to debate ECT as part of its consideration of a new Mental Health Act. The purpose of this survey is to help ensure that this debate is properly informed by the experience of those who have had ECT.
Methodology
At the beginning of January 2001 Mind distributed 6,656 questionnaires about ECT to: Local Mind Associations, MindLink, Diverse Minds, Sahara (Welsh Black and Minority Ethnic network), Mind Out Cymru (Welsh Lesbian and Gay network) and our contacts in the advocacy movement. We also made the questionnaire available on our website and sent 25 to callers on request. The questionnaire was only relevant to those who had received ECT and could not therefore be completed by all recipients. In the event, by 9th February we received back 437 questionnaires, of which 418 were analysed and included in this survey (the remaining 19 were incomplete, blank or otherwise unusable). Respondents came from all areas of England and Wales. Ninety-one per cent described themselves as white and 7.5% as from black or other minority ethnic communities. A full breakdown according to gender, age, ethnicity and region is set out in Annex A. Further detail about the response from black and minority ethnic communities is on page 27.
For the purposes of the analysis which follows, the relevant base numbers are:
Full sample: n = 418
ECT in last 5 years: n = 138
ECT in last 2 years n = 86
ECT 3-5 years ago n = 52
ECT 6 or more years ago n = 280
SUMMARY OF KEY FINDINGS
- One third (33%) of respondents had had ECT in the last 5 years.
- Depression was by far the most common diagnosis among respondents (53%).
- Over half (52.5%) of the total sample and over one third (34%) of those given ECT most recently were not aware that they could refuse to give consent to the treatment.
- Almost three quarters (73%) of the total sample and almost two thirds (60.5%) of those given ECT most recently were not, as far as they remember, given any information about possible side effects.
- Of those consenting to treatment in the last two years, 48% received, as far as they remember, no information about how the treatment would work and 44.5% no information about possible side effects.
- Only 8% of respondents (15% of those receiving ECT most recently) had the opportunity to consult an independent advocate before making a decision about ECT.
- 84% of respondents said that they had experienced unwanted side effects as a result of having ECT.
- 40.5% reported permanent loss of past memories and 36% permanent difficulty in concentrating.
- Among those receiving ECT within the last two years, 30% reported that it had resulted in permanent fear and anxiety.
- A third (32.5%) of recent recipients felt hopeful before having ECT but 29% felt terrified and 22% felt that they were being punished.
- In the short term, 36% of more recent recipients found the treatment helpful or very helpful and 27% unhelpful, damaging or severely damaging. However, in the long term, 43% of more recent recipients felt that it was unhelpful, damaging or severely damaging.
- 66.5% of the overall sample and 49% of those having ECT in the last 2 years would not agree to have it again.
- Respondents from black and minority ethnic communities were more likely to be detained under the Mental Health Act and to have received ECT without consent. They reported a more negative view of ECT than the overall sample with 50% finding it unhelpful, damaging or severely damaging in the short-term and 72% in the long-term.
EXPERIENCE OF ECT
Age and Frequency
Almost half (46%) of respondents had received ECT on more than 10 occasions and some on more than 100. A small number (8%) had experienced it only once. One third (33%) had had ECT in the last five years.
The vast majority (87.5%) of respondents had first received ECT between the ages of 18 and 50. Older people receiving ECT are therefore under-represented in the survey. Seven per cent had received ECT while under 18 and 3% while under 16 but only one of the under 16s had received it in the last 5 years.
When did you LAST have ECT?
In the last 6 months 6%
6 months – 2 years ago 14.5%
3 – 5 years ago 12.5%
6 – 10 years ago 13.5%
Over 10 years ago 53.5%
On how many occasions have you received ECT?
Once only 8%
2 – 10 45.5%
11 –15 16.5%
16 – 25 15.5%
Over 25 14.5%
Age when first given ECT
In last 5 years Total sample
Under 16 0.5% 3%
16-17 4% 4%
18-25 21% 37.5%
26-50 63% 50%
51-60 8.5% 4.5%
61-70 3% 1%
Over 70 0 0
DIAGNOSIS AND TREATMENT
Diagnosis
Depression was by far the most common diagnosis amongst respondents – 53% overall and 60.5% amongst those who had received ECT in the last two years. Manic depression and schizophrenia were also consistently represented. Other diagnoses recorded included anxiety (2.5%), schizo-affective disorder (2%), personality disorder (1%) and eating disorders (0.5%).
What was your diagnosis at the time ECT was given?
Note: The percentages in each column come to more than 100% as some recipients recorded more than one diagnosis.
Saving Lives?
Psychiatrists argue that ECT is a suitable treatment when it is important to have an immediate effect because, for example, a depressed person has been refusing food and drink and is in danger of kidney failure. We therefore asked respondents whether in the period before being given ECT they had attempted suicide, been feeling suicidal or stopped eating and drinking. 15.5% stated that none of these had applied in their case and a further 15.5% left these boxes blank. (These answers were particularly marked amongst those receiving ECT more than 5 years ago). 31% stated that they had attempted suicide, 41.5% (58% in the most recent group) that they had felt suicidal and 24.5% (38% in the most recent group) that they had stopped eating and drinking.
The full results were:
As far as you remember in the period before being given ECT had you attempted suicide, been feeling suicidal and/or stopped eating and drinking.
Drug Treatment
Most respondents (83% rising to 93% amongst those having ECT in the last 1-2 years) had received drug treatment for at least a short period before being given ECT, but apart from such treatment, very few alternatives to ECT were offered. Less than 10% of respondents overall were offered either counselling or psychotherapy, although this rose to 28% and 21% respectively amongst respondents who had received ECT within the last 2 years.
Were you given drug treatment before ECT was considered?
Those respondents who had received previous drug treatment were asked to state how long this type of treatment lasted. Answers to this question were as follows:
Alternatives
Respondents were also asked about alternatives to ECT. Of the 34% who were offered alternatives in the last 1-2 years, 93% were offered psychiatric drugs, 28% counselling and 21% psychotherapy.
Were you offered alternatives to ECT?
CONSENT AND INFORMATION
The Legal Framework
The position in relation to consent and ECT is complicated both because some of those receiving it will be incapable of consent and because of the provisions of the Mental Health Act 1983. Essentially, there are three routes by which a person may receive ECT.
- With their consent
In Mind’s view, consent implies that a person has been given the information about the proposed treatment necessary to make an informed decision. The Royal College of Psychiatrists Patient Factsheet on ECT produced in 1993 states that before a person is asked to sign the consent form: “the doctor should explain what the treatment involves, and why you are having it, and should be able to answer any questions you may have about the treatment.”
- Without consent under the Mental Health Act 1983
Just over one third of respondents to our survey (35%) were detained under the Mental Health Act 1983 at the time they received ECT. Section 58 of the 1983 Act provides special safeguards in relation to ECT and detained patients. It states that, except in emergencies, such treatment can only be given either:
- with the person’s consent which should always be sought in the first instance; or
- where consent is refused or the person is incapable of giving it, with the agreement of a second opinion doctor appointed by the Mental Health Act Commission.
In emergencies, under section 62, compulsory ECT can be given without the second opinion safeguard if it is immediately necessary either to save the person’s life or to prevent a serious deterioration of his or her condition.
- Without consent under the common law
This applies where a person lacks the capacity to consent to treatment but is not detained under the Mental Health Act. This might apply, for example, in the case of an older person who was confused and depressed but not objecting to their treatment. In these circumstances doctors have the right to treat the person “in their best interests” under the common law. There are no safeguards such as the need for a second opinion or for substitute consent from a relative. The Royal College of Psychiatrists suggests that in most such cases the Mental Health Act should be applied.
Results of the survey
The results of our survey show that even these minimal safeguards appear to be disregarded. In many cases, patients are being asked to consent without being given even the most basic information. Several respondents who said that they consented added a comment such as “coerced” or “under duress”. A number – some of whose comments are quoted below – also reported being threatened with the use of Mental Health Act powers if they did not comply. They felt pressured into consenting as a result and thus lost the second opinion safeguard.
Mind is concerned that these results reflect a disturbing and consistent failure to respect the autonomy of people with mental health problems.
Key findings are:
- Over half (52.5%) of the total sample and over one third (34%) of those given ECT most recently were not aware that they could refuse to give consent to the treatment.
- Almost three quarters (73%) of the total sample and almost two thirds (60.5%) of those given ECT most recently were not, as far as they remember, given any information about possible side-effects.
- Half (50%) of the total sample (30% of those given ECT most recently) were not told why they were being given ECT.
- Only about a quarter of the total sample (26.5%) and less than half of the most recent group (40.5%) were told how the treatment would work.
Further analysis of consenting respondents
These results caused us so much concern that we carried out additional, more detailed, analysis in relation to those who had consented to ECT within the last two years. This showed that, as far as they remembered:
- 48% received no information about how the treatment would work.
- 44.5% received no information about possible side effects.
- 35% received no information about either what the treatment involved or their right to withhold their consent.
- 15% received no information about why they were being given ECT.
It seems difficult to understand how, in such circumstances, people can be said to have “consented” to treatment.
Comments by respondents
Comments made by respondents include the following:
“I was told that as I was on a section 3 then had no rights.” (Woman - no area given, ECT in last 6 months)
“I was told I had been prescribed most of the drugs available and they had not worked. In a letter to my psychiatrist my GP stated that he believed my problems were hormonal and that before ECT was used on me a course of hormone treatment should be tried. This was ignored by the psychiatrist and the ECT was administered.” (Woman - Yorkshire, ECT in last 6 months)
“Why did no-one tell me I could’ve refused to have this electric shock treatment. It’s barbaric.” (Vietnamese man - no area given, ECT in last 6 months)
“I felt under a lot of pressure from the staff to go ahead with ECT. I personally don’t remember receiving information about how it would work, side effects etc.” (Woman - London, ECT in last 6 months)
“If I had known I had the right to refuse I would have done so. My understanding was that I had no choice in the matter and that they could do it by force.” (Woman - Wales, ECT in last year)
“Was told by consultant ‘best thing since sliced bread’, ‘be well in no time’. When went wrong, ‘this was the first time this had happened’.” (Man - London, ECT in last 2 years)
“Possible side effects were downplayed and only lightly touched upon.” (Man - West Yorkshire, ECT in last 2 years)
“I was given no information at all” (Man - West Yorkshire, ECT in last 2 years)
“I was given no information and had to sign for it after all my medication at night so I was very drugged when I signed the form for my consent.” (Woman - Yorkshire, ECT 3-5 years ago)
“Although I gave my consent, looking back I was in no state of mind to make such a decision and feel that I was taken advantage of.” (Woman - Devon, ECT 3-5 years ago)
“I didn’t want ECT but it was forced upon me” (Mixed White and Black Caribbean man – no area given, ECT 3-5 years ago)
“I was given full information about ECT including the side effects potentially. I feel I gave informed consent and was able to seek a second opinion. I was under no pressure to agree.” (Woman- West Midlands, ECT 3-5 years ago)
“I went in as a voluntary patient told ‘Do as you are told or you won’t see your children for years’.” (Woman - Leicestershire, ECT 6 or more years ago)
“Although I consented I did not have a clue what it meant” (Pakistani woman – London, ECT 6 or more years ago)
“I was threatened with detention under the Mental Health Act if I refused. As I thought this would make it more difficult to ever get a visa for visiting USA, I had to agree and signed. I felt I had little choice.” (Man - Wiltshire, ECT 6 or more years ago)
“I don’t know that I did have the right to refuse, as I was a minor. My father gave consent on a form sent to him through the post. No information about ECT was included.” (Woman - no area given, ECT 6 or more years ago)
“I was told it was better to consent than to be forced to have the treatment.” (Irish Woman – Birmingham, ECT 6 or more years ago)
Full results
We set out the full results below together with a more detailed analysis of the results from the group who received ECT in the last two years.
Were you detained under the MHA at the time that you received ECT?
Did you consent to being given ECT?
At the time that you had ECT were you aware that you had the right to refuse to consent to treatment?
Before you were given ECT do you remember being given information about any of the following?
(a) Why you were being given ECT
- What the treatment involves
- How the treatment would work
- Possible side effects
- Your right to withhold consent
Advance statements
Advance statements allow a person to say when they are well what they would like to happen if they become too ill to make decisions for themselves. In particular, they allow people to say what treatment they would not want to receive. Thus it is possible for someone to make an advance statement saying that they do not wish to be given ECT. However, even if such a statement is made in the light of previous experience and in full knowledge of the possible consequences of refusal, it can currently be overridden by the powers of compulsory treatment in the Mental Health Act.
Although the survey did not include a question on advance statements a number of respondents raised this as an issue.
“Friend suggested I write down while well that I do not want ECT again if ill, but nurse said they would section me and do it anyway.” (Polish woman - Wales ECT in last year)
“I have made an “advance directive” (living will) statement that I do not want ECT if suggested. I only wish my living will could be enforced legally.” (Woman - Suffolk, ECT 6 or more years ago)
Advocacy and Interpreters
Advocacy
A mental health advocate can ensure that a person has full information about any proposed treatment, is aware of their rights and able to make their voice heard. Unfortunately, only 8% of respondents (15% of the most recent group) had the opportunity to consult an independent advocate before making a decision about ECT.
Did you have the opportunity to consult an independent advocate before making a decision about ECT?
Interpreters
We also asked about access to interpreters for those who needed one. Only 6 respondents said that they needed an interpreter and 5 of those obtained one.
SIDE EFFECTS
ECT is not a risk free treatment and it therefore seems particularly important that full information about side effects should be given. Eighty-four per cent of respondents to our survey (78% amongst the group receiving ECT in the last 2 years) said that they had experienced unwanted side effects as a result of having ECT. These ranged from short-term physical effects such as headaches, drowsiness and confusion to permanent disabling effects on memory and cognitive function. A range of psychological effects such as feelings of worthlessness or a sense of betrayal were also reported.
The research literature on ECT does not come to a clear view on side effects. The Royal College of Psychiatrists’ Patient Factsheet states:
“Some patients may be confused just after they awaken from the treatment and this generally clears up within an hour or so. Your memory of recent dates may be upset and dates, names of friends, public events, addresses and telephone numbers may be temporarily forgotten. In most cases this memory loss goes away within a few days or weeks, although sometimes patients continue to experience memory problems for several months. ECT does not have any long term effects on your memory or your intelligence.”
However, other research suggests that memory loss can persist and that this is different from the memory loss caused by depression.
Survey results
The results of our survey show that:
- The most commonly reported short-term side effects (experienced by between one quarter and one third of patients) were headaches, drowsiness, confusion and loss of past memories.
- The most commonly reported permanent side effects were memory loss and difficulty in concentrating.
Of those who had received ECT in the last 2 years:
- 40.5% reported permanent loss of past memories;
- 36% difficulty in concentrating;
- 27% inability to remember new information; and
- 17.5% loss of previous skills such as playing music, reading or languages.
Comments from respondents
What this means in terms of real lives is graphically illustrated by the quotes from respondents below:
Respondents receiving ECT in last 2 years
“Very basic information i.e. it is safe and effective and possible side effect “short term memory loss” which I presumed to be forgetting names etc. No idea of depth of loss, places visited in the past, precious life memories.” (Woman – South Yorkshire)
“Long term memory problems – literally years with no memory/inability to recognise people. Although this is overcome by friends and family reorientating me/keeping diaries during periods of illness.” (Woman – Hampshire)
“Permanent loss of reading and numeracy skills.” (Man – West Midlands)
“I can remember very little of this year, after having ECT in September. I found once I came home I would meet people whilst out, knew them but could not place them or remember their names.” (Woman – Wales)
“I found myself unable to play guitar and sing songs and tunes I had been playing for 25 years.” (Man – Yorkshire)
“I’ve suffered permanent memory loss and feel I’m not as intelligent or as sharp as I used to be” (Mixed White and Asian Man – North West England)
“I can’t remember hardly anything about my past life, only very little bits. As for bringing up my three daughters I can’t remember a thing.” (Woman – Yorkshire)
“The ECT affected my memory long term, has slowed down my thinking process and has damaged my ability to associate words and ideas. Because of this my speech is sometimes not as fluent as it was before I had ECT. I cannot recognise some of the faces of people I have known for some time. My confidence and self-esteem are very low and the ECT treatment has contributed to this.” (Woman – London )
“I have long and short term memory impairment, I have serious cognitive damage. I cannot do any work with figures, numbers mean nothing to me. I have great difficulty reading. I was a taxi driver for 20 years. Now I can only find my way if I have my carer present to give directions. I do not know my left from my right.” (Woman – Yorkshire)
“Can’t play the piano, organ, violin any more as I can’t remember how to. It seems my long term memory has gone forever, memories from my past 5 years and more have become either vague or have gone.” (Man – Berkshire)
“Quite severe memory impairment which proved to be very distressing to myself and this distress had a knock on effect to my family. I want to keep myself to myself and have withdrawn from social activities, church etc, not wanting to see friends or family.” (Woman – Wales)
“Creativity, reading and things that I enjoyed and was patient in doing went down sharply” (Pakistani woman – London)
“I feel it has ruined my concentration and memory” (Man, Cheshire)
Respondents receiving ECT 3-5 years ago
“I have severe memory problems, diagnosed with Post Traumatic Stress Disorder as a result – a total loss of the two years preceding the ECT and other long periods which are blank. I can only remember much of my past in a hazy way. I also have difficulty remembering new information and problems recognising people.” (Woman – London)
“Several times people have greeted me in social situations as if they were long lost friends and I haven’t a clue who they are! My son talks about times I spent with him before I had ECT and I have no recollection of them.” (Man – South West)
“After allowing this barbaric violation of my body, I was unable to fully remember pieces of music I had been playing for years.” (Man – London)
“The inability to remember certain tunes is a real loss.” (Woman, East Anglia)
“ECT has certainly had damaging effects on me. My long and short term memory are severely impaired and I find it hard to absorb and retain information now. This has made studying extremely hard work as I often have to read things many times to learn them. I often read a book and a month later have no memory of it. I was in a relationship with someone who lived in Nottingham the last time I had ECT, and I knew the city well. After the treatment I did not know the way from the station to the bus stop and it was as if I had never visited the place. I also feel that it has affected my creativity.” (Woman – Midlands)
Respondents receiving ECT six or more years ago
“For six months I could not read at all (I was Head of History and taught GCSE English prior to ECT). I now have an irrevocable problem whereby messages from the right eye (my dominant eye) are garbled and not reaching the brain properly.” (Woman – Devon)
“I cannot remember anything about my life prior to ECT.”
(Woman - Yorkshire).
“Still can’t remember the year 1974 except for a few fragments” (Man – Yorkshire)
“It took me 15 years to re-learn to read with any degree of proficiency. Initially, after ECT I had no idea what words on a page meant and still have trouble with abstractions. Re-learning was a tremendous struggle and I never did manage to re-establish verbal communication skills. I cannot be sure I will say what I intend to say!” (Woman – Yorkshire)
“I qualified as a maths teacher. Following all this ECT I have no understanding of maths concepts used in my further education courses or even ‘O’ level standard.” (Woman – Cleveland)
“Most upsetting was that I could not remember the birth of my daughter or anything about her first year.” (Woman – Staffordshire)
“I am a deafened person who was studying sign language. I can no longer remember new signs, permanent disability.” (Woman – West Midlands)
“ECT has severely affected my long-term memory. Many precious memories have been permanently erased and my wife is sometimes disappointed in me for not remembering things we have shared throughout our married life.” (Man – area not given)
“Can’t drive any more, because of loss of direction.” (Woman – Lancashire)
“Reading abilities largely gone, i.e. concentration. Severe impairment of writing skills – I was a journalist. I lost my creative writing skills entirely for many years and they have come back in part only.” (Woman – Hertfordshire)
“I have lost my mathematical and studying skills. Lost the ability to play sport and cycle.” (Man – South West England)
“After ECT I could no longer play my guitar, my fingers became dyslexic, I could not remember chord sequences/patterns, words and songs etc that I had performed hundreds of times before ECT. The ability to play, or learn new music has never returned.” (Woman, Wales).
“Soon after ECT, I was visited in hospital by someone whose face and name I didn’t know, although, I learnt in conversation, we’d shared a communal flat, eating, drinking, talking together almost every day of the previous year, and when I was despatched back with no after-care to the family home where problems had arisen, I discovered my current address book, and frantically phoned some strange names in it, hoping that their voices would bring back glimmers of recognition.” (Man – North-East)
“The worst lasting [side-effect] – permanent probably – is gaps in my memory which are well known to friends and family but can be embarrassing, upsetting and can lose my confidence in conversation.” (Woman, Hampshire).
“Whole chunks of childhood and in particular memories of my mother who died four years before my first ECT.” ( Irish woman, Wales)
Psychological effects
Adverse psychological effects were also prominent. Again amongst those who had had ECT within the last 2 years:
- 30% reported permanent fear and anxiety.
- 24.5% feelings of worthlessness.
- 23.5% feelings of helplessness.
- And 21% a sense of betrayal.
Some people who had been abused in the past commented that the treatment felt like more abuse. Others said that it felt like rape:
“ECT was done “to” me, not done “for” me. That’s the total sense of how it felt. It paralleled sexual abuse which I experienced as a child. Someone doing something to my body against my will.” (Woman – Surrey, ECT in last 6 months)
“I suffered child sexual abuse and rape as an 18 year old and started having nightmares about this after ECT. I experienced a feeling of violation and interference all over again.” (Irish Woman – Birmingham, ECT 6 or more years ago)
“I have felt from the time of being given ECT that it was like being raped, that my body was invaded.” (Mixed White and Black Caribbean Woman - Wales, ECT six or more years ago)
Other comments made by respondents were:
“Anxiety and depression and feelings of worthlessness seemed to have actually increased since the completion of the ECT course.” (Man – Northants, ECT in last 6 months)
“I was an outgoing, fairly confident person and now I feel worthless and scared.” (Woman – England, ECT in last 2 years)
“Complete fear and paranoia of anything held over my face or nose and being pinned down. Severe panic attacks and fear of injections, drugs, being sedated.” (Woman – Cumbria, ECT 6 or more years ago)
“I felt very much that I was being punished for not coping and being out of work. I still feel this. I felt empty and numb.” (Irish Woman – Birmingham, ECT 6 or more years ago)
Full results
The full results were as follows:
Reported SHORT-TERM side-effects (i.e. lasting only up to 6 weeks)
Reported PERMANENT Side-effects:
Feelings when being given ECT
We also asked respondents how they felt when they were being given ECT treatment. Not surprisingly about half (45.5%) of respondents felt anxious. A third (32.5%) of more recent recipients of ECT felt hopeful that it would help them to recover and roughly one quarter (28.5% overall and 21% the most recent sample) felt traumatised and punished.
The full results were as follows:
How did you feel when you were being given ECT treatment?
Other feelings named by respondents included: confused (4), dehumanised (3), humiliated (2), disorientated, bewildered, degraded, betrayed, abused, angry, stunned, numbed, desperate, try anything to help, apathetic, indifferent, trusting, open-minded, happy, pleased, calm and cosseted.
VIEWS ABOUT ECT
In past surveys, there has been a polarisation of views about ECT with people tending either to like it or hate it. We therefore asked respondents for their overall views on ECT in both the short and long term.
Key Findings
Key findings were:
- In the overall sample, only 29% found the treatment helpful or very helpful in the short term, compared to 36% who found it unhelpful, damaging or severely damaging. In those who had received ECT more recently, these figures were reversed with 36% finding the treatment helpful or very helpful and 27% unhelpful, damaging or severely damaging.
- In the long-term, a much higher percentage rated the treatment as unhelpful, damaging or severely damaging – 63.5% in the overall sample and 43% in the more recent group.
Comments by respondents
Strong views continue to be held on both sides as the comments below indicate:
In favour of ECT
“I know ECT works well for me when I am severely depressed and unable to do anything for myself. I have a right to choose to have it. It is the only way I have of regaining myself and my life quickly when I am severely depressed. If I don’t have it I am unable to do anything for around 6 months – with ECT it is over in a few weeks. Without ECT I would have lost my job and most of the things I value in life.” (Woman – London, ECT in last 2 years)
“The effect of the treatment was amazing. All psychotic thoughts diminished and I started to feel as if I was finally being lifted from the big black hole I had been in. I honestly believe that had I not received ECT I would not be living the full, happy and healthy life that I am living today.” (Woman – Hertfordshire, ECT in last 2 years)
“Having the treatment probably saved my life”. (Man – Lincolnshire, ECT 3-5 years ago)
“It just seems to help me out of my depressed state of mind very quickly.” (Mixed White and Black Caribbean Man – no area given, ECT 3-5 years ago)
“I have many concerns regarding consent and information, but I feel that it should be a personal choice. But I am still alive, and I have no doubts that I would have committed suicide had I not had ECT. I have to weigh up my life against the impairment I feel I have suffered. I am compelled to conclude that ECT has helped me.” (Woman - London, ECT 3-5 years ago)
“It was a life saver to me as I was very depressed and highly suicidal.” (Woman – Wiltshire, ECT 6 or more years ago).
Against ECT
“This treatment should not be forced on to individuals who do not wish to undertake it. Recounting the incident makes me feel very angry and I would fight any member of my family having to undergo this treatment.” (Woman – Wales, ECT in last 2 years)
“For me it was hell on earth” (Woman – Dorset, ECT 3-5 years ago)
“I feel that ECT has ruined my life” (Irish man - Derbyshire, ECT 3-5 years ago)
“This barbaric invasion of a person’s delicate make up, in my opinion, should be illegal.” (Man - Surrey ECT 6 or more years ago)
“ECT gives people with very low self-esteem and feelings of self- hatred a medically sanctioned method of harming themselves and giving a concrete expression of their feeling of worthlessness… I do not believe that people should ever be offered ECT which I believe is equivalent to offering someone a plank of wood to beat themselves with.” (Man – London, ECT 6 or more years ago)
“I will never forgive a system that did this to me.” (Woman – Staffordshire, ECT 6 or more years ago).
“ECT equals Every Cell Traumatised. I’ve been tortured in civilised fashion, and all the time have to struggle against the victim mentality it’s helped produce in me.” (Man – North East, ECT 6 or more years ago)
“Under no circumstances would I choose to have ECT. I would rather go down fighting than submit to that abomination.”(Woman –Yorkshire, ECT 6 or more years ago)
“It was an absolutely dreadful experience. It was like torture.”(Man – England, ECT 6 or more years ago)
Full results
The full results were:
In the short term, overall would you say that you have found the ECT you were given:
In the long term, overall would you say that you have found the ECT you were given:
We also asked respondents whether they would agree to have ECT again. This question received a clear ‘no’ from all groups with 66.5% of the overall sample rejecting the treatment and 49% of the more recent group.
Would you agree to have ECT again?
BLACK AND MINORITY ETHNIC COMMUNITIES
7.5% of respondents were from black and other minority ethnic communities (including 2.5% who described themselves as Irish). Given the size of this sample, a full analysis according to ethnicity was not appropriate. However, we did analyse the response from this sub-group separately to see if any obviously different patterns emerged.
Amongst this group, schizophrenia rather than depression was the most common diagnosis (40.5% compared to 18% in the total sample). A much higher proportion were:
- detained under the Mental Health Act at the time that they received ECT (69% v 35% in the total sample).
- Given ECT without their consent (53% v 29% in the total sample).
The responses relating to lack of information were in line with those in the full sample as were the experiences of side-effects.
Overall, in the short term, 22% of this sub-sample found ECT helpful or very helpful and 50% unhelpful, damaging or severely damaging. In the long term, 9.5% found it helpful or very helpful and 72% unhelpful, damaging or severely damaging. These are more negative figures than those for the full sample. 65.6% said that they would not agree to have ECT again.
CONCLUSIONS AND RECOMMENDATIONS
Mind accepts that some people find ECT helpful and that they should not be prevented from choosing this treatment provided that they have been given full information. However, given that it seems impossible to predict who will be adversely affected, and given the seriousness and permanent nature of the potential side-effects recorded above, we believe that it should no longer be able to be imposed without consent.
We recommend that:
- There should be a legal requirement for an independent advocate to be made available to any person for whom ECT is being considered.
- An information leaflet nationally agreed with all relevant stakeholders (including service users) should be given to any person for whom ECT is being considered and should be available in different formats and a range of community languages. This leaflet should include full information about side effects.
- No-one who is capable of giving informed consent should have ECT against their will.
- Advance refusals of ECT should not be able to be overridden by the provisions of the Mental Health Act.
- A legal framework of substitute decision making on healthcare issues on behalf of those who lack capacity as recommended in the Government White Paper- “Making Decisions”, should be developed as a matter of urgency.
- Until such a framework is in place, those incapable of consenting should only ever have ECT in cases of urgent necessity based on clearly defined criteria and, even then, not if they give any indication of objecting.
- Safeguards for ECT in the Mental Health Act (or any replacement of it) should cover all those receiving ECT and not just detained patients.
Margaret Pedler
Mind
March 2001
Mind wishes to thank all those who responded to the questionnaire on which this report was based and who were willing to share often painful personal experiences and memories.
ANNEX A
Profile of respondents to ECT survey
Gender
Male 41%
Female 57.5%
Not given 11.5%
Ethnicity
White British 88.5%
Irish 2.5%
Other White 2.5%
Asian/Asian British 1.5%
Black/Black British 1.5%
Mixed Heritage 1.5%
Other 0.5%
Unknown 1.5%
Age (at time of completion of survey)
- 0.5%
- 42%
- 42%
- 10%
75+ 1%
Unknown 4.5%
Location
Wales 6.5%
London 10%
South-East England 21%
E. Anglia 6%
South-West England 9.5%
West Midlands 9%
Trent and Yorkshire 11%
NE 5.5%
NW 10%
Scotland 0.5%
Unknown 11%
Report Author: Margaret Pedler
Mind
March 2001
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