Sue and Ian

Brief Outline:

Sue suffered sexual abuse as a child and has had a history of mental health problems. Five years ago she was given ECT, aged 45. Sue and Ian felt they weren’t given enough information about the treatment and that more research should be done about the emotional impact of ECT.

Background:

Sue and Ian are married and both aged 50, have one child and describe their ethnic background as White British.

More about me...

Sue experienced sexual abuse as a child and was strongly affected by the death of her grandfather at aged 15. Sue felt she had a mood disorder at this age. She developed a range of psychological problems in response to the fear she had felt because of the abuse and the way she was manipulated by her abuser. Sue has had different diagnoses including: psychosis, personality disorder and bipolar affective disorder. She has had over 15 hospital admissions over the last 17 years. 

Five years ago she was given ECT. Sue had been ‘sectioned’. Whilst an inpatient, she wasn’t responding to antidepressant medication and ECT was presented to her and her partner Ian, as the last treatment option. Ian initially said no to ECT as Sue had only been in hospital six weeks. He didn’t feel he was in a position to properly research ECT, and felt that hearing about other people’s experiences would have helped him with his decision. Ian trusted the opinion of the nurse and the psychiatrist at the time.  

Sue was supposed to have ECT twice a week but Ian said that she wasn’t given ECT every week and was sometimes left for two or three weeks before having another treatment. Sue had 12 sessions overall, but these treatments were spread over months. Sue and Ian were always uncertain when the next ECT session was going to be. In addition, Ian never knew which hospital the ECT was going to take place in. Sue also said that she needed a lot of anaesthetic to lose consciousness and found it quite distressing when people panicked when the anaesthetic was seemingly not working. 

Before having ECT, Sue thought she was going to have a visible “fit” and wished someone had explained to her that the only physical signs of a fit would be her toes twitching. She remembers feeling quite confused when she came around from the anaesthetic. Although she had read information about ECT, she didn’t feel in control of the process. She was also unsure of the legal situation in regards to consent and felt she could have been forced to have it. She felt that the general anaesthetic was an “emotional way of holding her down”. In this way, having the anaesthetic felt similar to the abuse she had experienced in her childhood. When she went to another unit, she had two staff members accompanying her and said she felt like a prisoner. Ian felt there was very little communication from the ward. Sue suffered memory problems and a certain amount of ‘brain fog’ because of the ECT. 

After these experiences of ECT, Sue had problems being in mental health units. She now doesn’t want to go into hospital for fear of having ECT again. The decision to have ECT has left some issues between Ian and Sue about consent to treatment. Ian felt that he was advised by experts to try ECT after they had tried ‘everything else’.

Sue has had psychotherapy and has talked about the effect that having had ECT has had on her. Sue also found there was very little follow up about her wellbeing and the possible side effects of the ECT. She felt that her experience of ECT was not recorded or evaluated.

Sue thinks that nobody knows how ECT works and that the basic leaflet she was given didn’t go into enough detail about the treatment. She felt she wanted more information but was denied this. 

Ian and Sue talked about the longer-term emotional impact of ECT. Sue feels that although research has been done on memory, more research needs to be done on the emotional effect of ECT and that there should be more service user led research.

Sue was sexually abused by a family friend between the ages of 8-13. She was highly traumatised by this experience and felt it played a major role in the development of severe mental health problems as an adult.

Yeah, I’ll start with the sort of background of my mental health problems. I was sexually abused as a child, from the age of 8 to 13 and then I had major trauma when my grandfather died when I was 15 and that seems to have been the onset of my mental health problems. It was pretty evident I had a mood disorder at that age. 

I also had quite a lot of psychological problems. I think because I couldn’t deal with the whole situation, because you have to hold it all in, you can’t really talk to anyone. And I felt the person who was actually conducting the abuse, because he was a family friend knew exactly how to manipulate me, and frighten me, which is what he did, by sayings things like, “You’ll end up in children’s home” and “If you don’t cooperate I’ll have to go to your sister.” And things like that. 

So I think that impact still continued for the rest of my life and I find it, that I constantly, I just cannot leave it behind. 

Sue, who was diagnosed with quasi psychosis, created a figure in her mind who she called the “hanging man” to deal with the effects of childhood sexual abuse.

And I created what I call the hanging man. And I think that’s because I wanted to visualise what I’d like to do with him, and he sort of, it started off quite childlike in that, because I didn’t know about anatomy and things. But he was, essentially hung by the neck and he was sort of, he was, is it eviscerated? Everything was sort of like cut down from the neck, all the way, and all his bowels and everything were hanging out. And it hung over his genital area so I couldn’t see it. 

Unfortunately that stayed with me, the day, he currently lives in this corner, but whether I’m, when I’m in a moment of stress which has been diagnosed as quasi-psychosis, in that it only comes out when I’m stressed. But really it’s there all the time. But he has a large impact, on my life and I should imagine it always will be. I’ve been through quite a lot of psychotherapies and treatments and things but nothing seems to get rid of him 

Sue tried to leave the unit she was staying in so she could kill herself. She was stopped by her psychotherapist. Other members of staff were “frosty” with her after that.

Plus I’ve got to be honest at the time, I was using the excuse of going there to try… put myself in a position where I could commit suicide and he felt I was using that as an excuse, which was perfectly true, perfectly true. I certainly tried two attempts to try and get away from the unit. And he blocked my exit on one occasion. He was very intuitive. And the two members of staff, excuse me, like she took me there, I disappeared somewhere and of course they were chastised about that because they’re supposed to be available at all times. But because I’m not violent in any way of course, I didn’t try pushing them out the way or anything. And he just blocked by his physical presence really and he asked someone to go and find the two members of staff. Then they complained about the two members of staff not being there, and I think it was quite a frosty sort of reaction from staff towards me then, and they became quite, what am I looking for, their attitude towards me? It sort of degenerated didn’t it?

Sue was under section when ECT was recommended as a last treatment option, and felt she wasn’t in control of the situation. Her husband, Ian, consented for Sue to have ECT and this had serious consequences for their relationship.

Because I feel like I’ve been, I think abused is a strong word. But I feel I was put in a position where I didn’t really have much choice. I mean the anaesthetic was sort of like an emotional way of holding me down. And of controlling me, which put me in mind of what happened in the past.

And I really, I didn’t feel as if I had much control about the situation, once it has been initiated and I think because Ian agreed to it, I thought well he must think it’s good, and having read the leaflets I thought well I suppose I’ll give it a go. But I didn’t feel like I had much control about the whole situation. And because they just kept slapping different sections on me and I thought how long am I going to be here and what’s going to happen. And also I didn’t know an awful lot about the Mental Health Act then and the different types of sections and I knew that can insist on you having treatment. And they can actually, essentially, not force you to have it, but suggest it in a legal sense as long as they get another doctor in to sort it out, if it’s going to save your life, not eating, not drinking, which I wasn’t, and if they thought that it was having a huge negative effect not having, doing these things then for health reasons they could sort of like force you to have it. 

Again I think force is a strong, strong, strong word, but they were the fears that I had, as I had to go along with it anyway. 

And I have strong control issues as well. Well it was very distressing, and I think there was a huge impact on our relationship. There was a lot of… I felt like Ian and I were drawing apart and then I also blamed him for agreeing for me to have the ECT. You know, a certain amount of, you know, if you hadn’t agreed I wouldn’t have been in this position. 

When she was an inpatient, Sue thought ECT was a Victorian era treatment. She felt there was a lack of information about medical treatments and that most people don’t question their treatments.

So what should I know about ECT. I had these ideas of Victorian treatment for those with mental health problems, of frontal lobotomies, of people being held down, because of course they didn’t bring out suitable treatments for a lot of these schizophrenics and sort of bipolar people until the 1950s, and I just felt that it was just the case of, really you were in a prison and this part, this, the ECT was part of that scenario, was part of that old ideas of treatment and things. Why were they bringing it into the modern world?

And I thought how are doctors using something and they don’t know how it works? Would you really do it in any other sort of like, life situation? Wouldn’t you really want to know? And I suppose its individuals that don’t. I’m just very curious. I think that’s why I said, initially before you started sort of recording this, I find it very difficult to understand when people had got a medical problem and they don’t know what, you know, how to describe it, what it really is. They’re just given a name. And you ask them what mediation they’re on and they say I’m on tablets. But they don’t what it is, how it sort of reacts with its contraindications and I just feel generally, not just with ECT today there’s still lack of information. I think there’s such a lack of information. I think there’s the assumption that everyone’s on the internet and they’ll go find this information out for themselves, and a lot of human beings aren’t, you know, in that sort of state of mind or they don’t really want to know. They just want to take the tablets and hope it all goes away.

Sue and Ian’s local centre had closed and Sue had to travel to two other places and never knew which one she had to go to. Rather than a short course of treatment the ECT was spread over months.

You know, people would take her there and bring her back. So we agreed to that. So everything was set up, you know, and I think the first couple of sessions went okay. And then we came up to the sort of National Health haven’t got enough resource tag. So what was happening was ECT then sort of would be left for two or three weeks, and then there’d be another session, and there would be two or three weeks, after the course of twelve was it, you know, it was spread over months.

Whereas it should have been short and concise. 

And the other thing as well is the local sort of centre where they deliver ECT, was actually in [name of place] and they’d closed it down at the hospital. So there were two other places which was [name of town] and [name of place] and I never knew where I was going to go. And I would be informed to go to [name of place] or we’d go to [name of place], so I didn’t know the staff there, you were sort of waiting in the waiting area, and then obviously taken in, as a sort of… I’m okay with medical procedures aren’t I?

Sue had been abused as a child and felt giving her ECT without her consent was wrong. To her, the ECT procedure compounded her childhood experience.

And I think the other thing which I sort of tried to emphasise is there was no consideration about why I’d ended up in the mental health system. You know, initially the reason why, you know, these things had happened, is this control thing about being manipulated, about being a force to sort of respond to my abuser, being sort of groomed, mentally scarred and I don’t think anyone at the time took that background into response of the whole procedure of ECT and it was like, to me, I’ve used the word ‘abuse’ it like another, but a mental abuse. I mean you have that anyway with the physical and mental abuse of the childhood but it’s compounded by having, going through that whole procedure. 

And it’s very difficult. I find it very difficult to move on from anything like that because it’s formed me as a person. I think because I was very young when it happened, it’s so embedded on my psyche, it’s like branded, and when you brand someone, that’s it, then it’s very difficult to actually, I think even with surgery, you’re always left with some kind of scar. 

Oh no, it didn’t. That wasn’t the cause, that wasn’t the cause. It was just an effect that should have been linked to my past and was that actually suitable treatment for me? When you think about the physical part of it, it would very relate to what I’d been put through as a child, having been held down, whether is psychologically or physically, and being put in a position where by losing consciousness, I was having this treatment, and how would I respond and what were people doing to me…

Sue feels being sectioned “strips you really of any power”. She’s asked not to have ECT in future but feels her wishes will be “railroaded”.

It’s not necessarily a fear of hospitals, is it? It’s a fear of being in a situation where I have no control. And I think as human beings we need to feel we have some sort of control over our destiny and what we’re going through. Okay sometimes you can’t, or it’s very difficult to make decisions for yourself and be able to follow through with them. But in a situation like that, where you sectioned under the Mental Health Act, it sort of strips you really of any power.

I mean when you think about it, psychiatrists in some ways have more power than the legal system. Because at least you can go to court and sort of present your case, but with the section. Though really if a psychiatrist has recommended it, then it’s very rare that you don’t get sectioned, and because you’re required to stay you can’t really put your point of view across. And it was all these past experiences and experience at the time, and subsequent sort of like reaction to it that’s just led to a mess, and I still feel there’s a mess now. And there’s ultimate fear that it will happen again because they’ve not, it still goes ahead. Even though I’ve asked and it’s on my well-being plan not to do it, and I just re-iterate there’s other things in the well-being plan that are just railroaded. So will they rail road that.

Sue has had long-term therapy for the trauma she went through as a child, and in her adult life. She felt her psychotherapist was the only person who understood why her past was causing her problems.

I’ve had an awful lot of psychotherapy. I’ve actually talked about it with the psychotherapist. And I think he was the only one that really understood where the past was coming into the future, sort of like causing problems, and whilst people say, “Oh you got over it, it didn’t work, move on.” It’s the psychological impact I’ve had through having ECT and thinking this is the ultimate treatment you could have.

And I also lost heart. If this is the ultimate treatment and I haven’t responded [claps hands] what is there? And I became more suicidal, which was initially why I was in hospital. And I also, that has a knock on effect, because each time I’m sectioned, it’s usually because I’m highly suicidal and I reach the stage, well nothing’s worked and I’m still in this same place, and with people saying to me, oh, you know, like it might never happen again. How many times have I heard that? And I just sort of brush it off, thinking you don’t really know me. Especially new people who work with me, who don’t really know me. Its sort like seems like a throwaway comment and I think there’s very few people that have been with me all those seventeen, eighteen years, I’ve been within the mental health system here, who can actually follow the whole thing.