Suzanne and John Y

Brief Outline: Suzanne was given ECT age 27, during a hospital admission when she was very depressed and experiencing psychosis. She was catatonic, had stopped eating and drinking and was losing weight rapidly. John felt anxious about the treatment options available and was told medication would not work quickly enough. After three sessions of ECT he noticed some improvement. Now Suzanne has a few ‘blips’ but asks for help more readily and finds a range of techniques that help her well-being.

Background: Suzanne, age 36and John age 44, work in education. They are married and live together with their young son. Their ethnic backgrounds are White Irish and White British.

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Suzanne first experienced severe psychosis and depression in 2000/2001. She was in Wales when she first went to A&E and then later was admitted to hospital in Ireland (where she grew up). Suzanne’s first experience of the psychiatric system was a huge shock, and she hated being in hospital away from people whom she knew and loved and who could understand what she was like when she was well. She found the experience an ‘eye opener’ as she felt mental health staff were controlling her existence. At the time, she felt out of control of the situation and also that her own mind was out of control. She was diagnosed with “psychotic depression”, but this diagnosis wasn’t explained to her. Although technically a voluntary patient, she said she couldn’t leave hospital of her own accord. At the time she feared that she was going to be in hospital for years and felt that nothing was explained to her about her illness or the running of the hospital and what the patients did there.

Eventually she left hospital and was still taking olanzapine, an antipsychotic, and Effexer (venlafaxine), an antidepressant. She found she ‘bounced back’ quite quickly. However the medication had side effects and she put on over two and a half stone in weight. When she stopped taking it she lost the weight again quickly. Her husband, John, found that when she was coming off the medication there were periods when she would get very emotional. John says that mental health was ‘new ground’ to him and he hadn’t had any experience of the mental health system before.

Later, when she was living in the UK again, she again became very ill, very rapidly. Immediately before this she had just finished a PhD thesis. She had also developed a bladder infection that interfered with her sleep pattern and she had become depressed. She can only remember ‘snippets’ around this period, but was aware that the medication she had been prescribed (olanzapine and diazepam) wasn’t helping. Suzanne became catatonic and stopped eating or drinking. She lost a lot of weight and said that she just ‘existed’ for a while and didn’t have any input into anything. 

Suzanne now feels that after she submitted her PhD thesis, she should have taken time off. When she started to feel unwell, she went to A&E who told her that panic attacks were quite common amongst young women. The GP said give it more time and wouldn’t prescribe sleeping tablets. Suzanne went to hospital but felt her mental health wasn’t properly assessed. John said that she spiralled ‘extremely quickly… into a serious state of depression’. Suzanne was admitted to hospital via her GP. John felt as if he acted as her main carer during the first few days she was in hospital as the staff didn’t interact with her much at first. Suzanne was prescribed olanzapine and diazepam, but wasn’t getting any better. John felt that she might die as she was no longer eating or drinking. He was told that the medication wasn’t going to work fast enough to make any difference and that her doctors were going to recommend ECT. John was not named as a carer or next of kin, and therefore had no legal power to consent or otherwise to the treatment. Suzanne’s parents were not resident in the UK so John felt helpless. He researched ECT on the internet and was quickly drawn to the horror stories. John felt that the decision for her to have ECT happened very quickly and that in the back of his mind, he worried that the treatment wasn’t based on exact science and that nobody knew how ECT actually worked. When she had ECT, Suzanne can only remember that towards the end of the treatment, someone in the theatre said to her that she should know what to expect as she’d had the treatment before, but that she couldn’t remember the previous treatments. John thinks that after the third treatment Suzanne started to eat again and then subsequently made a very rapid recovery. For both of them, this period of time is a bit of a blur. Suzanne finds it difficult to remember this period, and John thinks she now has a poor short-term memory. Suzanne does not think she struggles with her short term memory.  

Suzanne read up about ECT some time later and felt she didn’t experience any of the negative side effects such as personality change or loss of creativity that others wrote about. Now John feels that she asks for help much more quickly when she needs it. Suzanne continues to take medication, and feels that things like reflexology and healing has really helped her well-being. In addition, she meditates, gets plenty of sleep and writes a diary. She has experienced a few ‘blips’ since then, but nothing as serious. John wished he had had access to more balanced information about people’s experiences of ECT to help him at the time.

Suzanne had a bad experience while travelling and then had vivid nightmares that made her afraid to sleep and she ended up in hospital. She had previously split with her boyfriend and been overworked.

I was a post graduate student at the time and I was travelling a lot, and I was away from home a lot, and what sparked off the whole incident was something happened in the place where I was staying that gave me a fright and it triggered off nightmares and the nightmares were so vivid that I was afraid to go asleep. So I stayed awake for about four days because every time I went to sleep I was having these really horrible nightmares and I looked like somebody who had been through a road accident, like I was in shock after a couple of days of this and by about four days I was becoming paranoid and about the third day, I think, I went to A & E in in the nearest town, and I travelled back to [name of town] and I was admitted to hospital there within a day or two, and then… 

So the more, the background information to that episode was I had been doing a bit too much work. I had broken up with a long-term boyfriend and I hadn’t been taking breaks when I needed to. And after a few months of that building up, and building up something small that happened just triggered and sent me completely off the edge and I guess that time when I was admitted to hospital it was a huge shock to me to be in hospital and I really didn’t want to be there and… that was my first experience ever of the psychiatric system and medication and what the medication does and what different kinds there are [small laugh] and… it was just a complete eye opener and also kind of a complete blow at the same time because I was in my probably early to mid-twenties at the time and… mental health was something that I’d never really thought an awful lot about before then, and suddenly I felt that my existence was being decided upon by the mental health staff of when I had leave to go home and that kind of thing. And it was a huge, huge eye opener really and yes.

When Suzanne was told she had ‘psychotic depression’ she was surprised. She read up about it and found out the illness is episodic (happening at infrequent times) and now counts herself lucky.

And did you have any discussion at all that you can remember about your diagnosis or did you care?

There was no discussion about it. I don’t know, patient appointment I asked what my diagnosis was, and I was told it in two words and I was so surprised that I couldn’t think of any questions to ask and I wasn’t prompted to ask any either. Its psychotic depression, and I thought does this mean I’m some kind of psychotic person who is going to be completely nuts for the rest of their life. That was my first thought upon hearing those words. And yes, …

Did you get any explanation past those two words that you were given?

No, no, I didn’t. No… and from the reading I’ve done now, I understand where the diagnosis has come from. From the symptoms that I had of being very low, and the kind of paranoia that I was having at the time and yes. Like it does make sense to me now, when I look back on it.

Yes, but it’s very much an episodic illness, with long periods of being well in between periods of illness, so I kind of count myself lucky in some ways. Yes.

Suzanne said all she wanted was to be around people who loved her. She describes having to go back to hospital and leave her family during Christmas dinner.

So did you head back to your parents at that stage?

Yes. I did indeed. I was living with my parents and then, yes, I was… I went back to live with my parents and that was about January of 2001 yes.

And how were things with your parents? You mentioned you know, quite a strange sort of Christmas dinner that you had to leave half way through and…?

Yes. I think I left shortly after the dessert but when everyone was still gathered round the table, I had to go back to hospital. I was kind of a bit angry with [the hospital] for making me stay in hospital for when all I wanted was to be around people who loved me, rather than people who were, who didn’t know me from Adam. But I just got on with life, you know, and I just adjusted to that was, that was how it had to be, and that was it. Yes.

When Suzanne first arrived in hospital she was too ill to make friends and felt isolated from her family. Later, she was able to take part in the activities on the ward, made friends and even began to enjoy herself.

Well it was like I couldn’t leave the hosp… even though I wasn’t, I was still a voluntary patient, I still couldn’t leave the hospital of my own accord and I couldn’t go home to my parents and all I wanted was to be around my family and be round people who knew me when I’m well, so that they would… so that they would interact with me in a way that I was familiar with, I suppose and comfortable with, whereas being in the hospital I was scared to talk to other people and I didn’t know anybody there and I wasn’t really in a state where I could become friends with people because I was so ill. I think for the first three days in hospital I had a kind of blank expression on my face and wore the same clothes, and I just looked like I was in shock, like I had been the few days beforehand when I went in A&E and I was kind of like a bit of a zombie and then I just kind of came out of it like that. I don’t know whether the medication kicked in or whether my brain was just relaxing after being heavily medicated to sleep for a long time. Yes.

Yes. I was going for jogs around the grounds of the hospital and making scones sometimes in OT and doing woodwork and I had a little room to myself in the hospital at that stage and I was starting to work again on my postgraduate work whilst I was in the hospital under, making lots of friends and generally enjoying myself. So it was like, like I was having a holiday there for a while and then they decided they needed the room for somebody who was in need some therapy or help from the hospital and that I should go off home. Go home. So I happily did, yes. 

Suzanne’s friend have her a healing treatment, like Reiki, which she felt kept her well at times where she was “teetering on the edge of becoming ill again”.

And how have you manage your well-being over all?

Yes. Yes. There’s one major thing that I left out I’ve a friend who is trained as a healer and she does healing which is a bit like Reiki and she’s done sessions with me for the past couple of years and I’ve found that to be tremendously helpful and it enables you to tune into your own kind of inner wisdom and if you have a worry that’s dominating your thoughts it kind of helps you resolve it and that’s been a really powerful tool for me. And that’s kind of kept me well on occasions when I was not, when I was teetering on the edge of becoming ill again.

By the time Suzanne was offered ECT she was not eating or drinking, so the decision about having ECT was an urgent one. John Y found horror stories on the Internet and wasn’t in favour of it, but it did work very quickly.

John Y: What actually happened was that I had no legal say in the matter as we were not married. Suzanne’s parents also had no legal rights on their daughter’s treatment as they were Irish and non-UK citizens. Hence the reason for my anxiety at the time. The doctors made the decision. Which I was thinking well, if I didn’t know anything about ECT when I looked at it on the, on the internet I was drawn to all the kind of horror stories and you know, memory loss and changing your personality, and that sort of thing.

Suzanne: Also loss of creativity and all kinds of things.

John Y: Hm. I was thinking you know, that this is a bit out of my hands really and I rang up our parents to say, you know, “I’m not sure, you know, what’s going to happen here” and they were all, “Oh the doctors they know what’s best”. They had 100% confidence in the doctors whereas I was much more questioning, thinking well hang on a minute, they don’t even know how ECT works. It’s still you know, it works for some people and there’s a lot of people where it doesn’t work. The side effects are long lasting, if not lasting the rest of our life it seems to be a bit hit and miss. It doesn’t seem to be based on a sound scientific footing, you know, if they don’t know how it works then. To be honest I wasn’t in favour of it. So I felt in a position where, you know, I was, I basically didn’t have much of a choice in the matter I had to go with it, because there wasn’t any other options really.

Suzanne: Hm.

John Y: And in your case I think it did actually save your life and you know, it did have very positive results very quickly.

Suzanne: Hm.

John Y: So my doubts were dispelled in that case, but I can see why a lot of people you know, quite rightly are anti-ECT and it may not work for everyone. 

Suzanne and her husband felt that ECT saved Suzanne’s life as before she had the ECT she had stopped eating and drinking. After having ECT, she got better quite quickly and was able to return to work.

I lost a lot of weight when I wasn’t eating and the ECT was kind of life saving really, because I don’t think I would have recovered otherwise. My parents think I would have, they think it would just would have taken a lot longer. And I have heard other psychiatrists talk about when ECT is used in those circumstances and so that people do recover, but I don’t see how it can happen when you’re not eating and not responding to anything. 

Yes, I remember the last course of ECT treatment, but I’ve no recollections of the others, because I think I would have had about five or six treatments.

So different sets of treatments or …?

No like they give you a series of treatments and electric shocks and through for which you’re receiving anaesthetic for, as part of a package kind of … it’s a sad story. I don’t know how to describe it. But it’s like a course of treatment. 

Yeah yeah. 

Yes. But for me I think it was lifesaving and I became well again very, very quickly and within a couple of weeks of being in hospital I had got myself a Sunday job and I was back functioning normally. You know, when I had a few days in hospital of feeling really well and then I was discharged and I continued to feel well after that. 

Suzanne and John Y felt let down by her GP and by A&E in the period of time before she became psychotic. Her panic attacks, and a bladder infection that affected her sleep, weren’t properly dealt with.

Suzanne: That was around the time I developed a bladder infection and then my sleep pattern just went crazy because I was up at night going to the loo all the time. I went to the GP and he said, “Oh, see how you go for another few days.” And then a few days later I was a lot worse. I went to an A&E at the weekend. They were dealing with a lot of drunk people. They sent me home with a paper bag and said, “Oh panic attacks are quite common in young girls, young women.” And I just went downhill. And that weekend John was away and there was a friend came with me to the hospital and I just didn’t have my mental health assessed and the following week then, I just got really, really ill with panic attacks and delusions and depression I suppose. I had reflexology treatment on the Saturday & it brought out the panic attacks. It has never had that effect on me since.

You were saying earlier on in the interview that you don’t feel that either your bladder infection or your lack of sleep was properly addressed? Is that right?

Suzanne: Not early on enough. Yes. I think, I think I had left it a few days and let the bladder infection get worse.

John Y: I think they probably should have looked at Suzanne’s notes and realised that she had had a previous…

Suzanne: Episode of psychosis.

John Y: ….Episode and taken a second look at this and thought we need to keep a very close eye on this.

Suzanne: Yes.

John Y: Because she spiralled extremely quickly into you know, quite a serious state of depression.

Suzanne: Hm.

John Y: That’s not necessarily something you can predict but at least you should, if something like this has happened before, perhaps it is she would be a candidate…

Suzanne: Yes.

John Y: … where it’s something that they really should not have dismissed from A & E. They should have taken a closer look at it.

Suzanne: Hm. And they knew in this country that I had been on Olanzapine before. You know, so even though my notes hadn’t been sent over from [name of country], there was some record of the psychiatric history there. It’s just everywhere I turned from the GP to the A&E people, on the second occasion I just wasn’t getting the help that I needed and then a couple of days were going by and then I was getting seriously, seriously ill.

John Y: Yes. I think your GP let you down quite fundamentally really.

Suzanne: Yes. I didn’t get to see my GP when I had the sleep problem. And maybe not when I had the bladder infection, like around the same time. I saw another GP it wasn’t my own GP. And he didn’t know me and hadn’t looked into the history. So I don’t really blame him for his decision-making but I wish that he had looked a bit deeper. And I wished that I had spoken up and said, “Look I have a history of psychosis and that’s why I’m so worried right now.” 

Suzanne was catatonic when she first went into hospital. She hated it at the beginning and wanted to be at home but by the end of her stay she didn’t mind being in hospital.

But by the time I was admitted into hospital or a short time afterwards I became catatonic and the medication that they were giving me wasn’t really having any effect and I was so… kind of, I was totally despondent and I wasn’t able to interact with people or to speak or to eat and I was just kind of …I think of it as a time when where I just merely existed for a period. Where I didn’t really have any input into anything, neither the decision about the ECT treatment nor anything. 

And yes, it was horrible. I hated it. I absolutely hated it. And then towards the end of the stay in the hospital, I was there for about six weeks or so and towards the end of the stay I didn’t mind it at all, but I hated it in the beginning because I just wanted to be around people I loved and I just wanted the compassion from your family that you get. And, I wanted to be around people who knew me when I’m well as well, and I was being kind of interviewed by large groups of people and I wasn’t really being given any information about what was going on or what the medication was doing. Or I kept asking when I was going to go home, i.e. when was I going to be better and they said they didn’t know and that just scared even more, because I thought, “Oh my God I’m going to be in here for years”. So it was really traumatic and in that I felt worse by being in hospital. I didn’t feel like it was any form of therapy in the first few weeks but…

Suzanne was given highly sedative medication whilst she was an inpatient. She remembers she didn’t have dreams for a long time and did not feel well rested.

Yes, Largactil. Yes, that’s what I was on at the beginning. Just for a couple of days or even a day or two. I’m not totally sure. But yes, I can remember that I didn’t have any dreams for a long time, that I was so medicated at night that by the time I had queued up for medication, walked back to my bed, got into bed, I’d be asleep. And I’d kind of wake up only moments later and it would feel like you hadn’t had any sleep at all in some ways, because you didn’t have time to process any of the day’s events. And it was kind of like “bang” and there you were there again, oh no waking up in hospital again and sort of feeling of yes, it was very frightening every morning waking up in the hospital thinking, “Oh God I’m here again.”

Suzanne explains that when she was in hospital under a Section, she was too unwell to understand what was happening. She only realised she’d been sectioned when she was de-sectioned.

John Y: Well you didn’t have any… you didn’t participate in any of the discussion for ECT because you weren’t well enough.

Suzanne: No I didn’t.

John Y: You were like…

Suzanne: I was like floridly psychotic, not psychotic but catatonic. I was…

John Y: Yes, but what’s the description, the Mental Health Act?

Suzanne: I didn’t have capacity.

John Y: No. Legally…

Suzanne: Yes.

John Y: They decided that you weren’t able to …

Suzanne: Yes.

John Y: …make a decision.

Suzanne: Yes, I didn’t have capacity to make the decision so …

John Y: So what do they call that?

I mean there are various different sections of the Mental Health Act.

John Y: Yes, sectioned.

Suzanne: Yes.

John Y: So that… so you’d been sectioned by that stage. 

Suzanne: Yes, I was under the care of the doctors.

John Y: Yes, so you couldn’t make any legal…

Suzanne: I was under is it Section III of the Mental Health Act?

John Y: Legally you couldn’t make any decision yourself.

Suzanne: Yes, well that doesn’t mean that you …

John Y: So even if you had said…

Suzanne: It doesn’t mean that …

John Y: … no I don’t want it. You wouldn’t, they…

Suzanne: Yes, well but that doesn’t mean that the doctors won’t tell you what’s going to happen even if you’re sectioned. They would do. It’s just that I didn’t have the capacity to take in that information.

John Y: And it also means that you don’t have any power to change your course of treatment.

Suzanne: I think I was sectioned meant that I was under the care of the doctors but yeah, I was under their treatment and I had to stay in hospital, but I can remember being de-sectioned and I can remember that meeting very well with the doctors. Yes. And they said, “We’re now releasing you from the Mental Health Act…” or whatever. “You are no longer sectioned.” And it was like news to me, I’ve been sectioned. 

John Y: Oh well you wouldn’t have known.

Suzanne: No I didn’t know anything. I didn’t even know if I was wearing like, I was going to say if I was wearing clothes or not, but like I was kind of like a total zombie.