Matt

Age at interview: 36

Brief Outline: Matt’s wife experienced severe postnatal depression and was admitted to hospital a couple of times. After she didn’t respond to medication, she was given ECT. He thinks that ECT was eventually effective in treating his wife’s depression.

Background: Matt is a writer, married and has three children. He describes his ethnic background as White British.

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Matt had assumed that ECT was ‘something from the fifties and sixties that didn’t exist anymore’ and he only really knew about it from films. However, when his wife was admitted to hospital with postnatal depression (two years after the birth of their second child), he saw a sign for the ECT suite in the hospital. His wife came home from hospital but wasn’t any better and was admitted again the following spring. It was during this admission that the consultant and the community psychiatric nurse talked to Matt and his wife about ECT. In hindsight, Matt felt that she may have been admitted to hospital so that ECT could be a treatment option. At first Matt found the idea of ECT very frightening, and although he felt used to the idea of inpatient care and medication, ECT seemed very different from this. He looked on the internet for information about it and found lots of information from the Royal College of Psychiatrists website, which he found helpful. This told him about the procedure, how long it lasted and what the success rate was. Matt found that the ‘cultural baggage’ surrounding ECT was considerable, and felt that his wife thought that ECT was somehow embarrassing or shameful.

On the day of his wife’s first treatment, he had pre-arranged with the hospital to see her when she came out of treatment on the ward. When he turned up to see her he was told he couldn’t. Eventually he did see her, and she seemed relaxed and quite comfortable. His wife was later transferred from an assessment unit to another ward and changed consultant in the process. Her new consultant didn’t want her to continue with ECT. Matt felt that his wife’s energy levels had begun to recover ahead of her mood, but when the treatment was stopped, this recovery stopped. He felt frustrated by the whole structure of care and felt his wife’s history and lack of response to medication had not been taken into account by the new consultant. Eventually the consultant agreed to more ECT but there had been a gap in treatment and so they had to start a course of treatment again after some time had passed. Matt didn’t know whether this next series of treatment had worked, but after 12 sessions had been completed they went away for the weekend and he saw his wife laughing and smiling with the children for the first time in a long time. Now he is frustrated that it took so long for ECT to be suggested, particularly as medical staff seemed uncertain about the effectiveness of the different medications his wife was taking.

Matt has had varied experiences of health care staff. The crisis resolution team didn’t greet him when they came into his house and only spoke to his wife. The Early Intervention Team involved him in many aspects of his wife’s care and asked his opinion on her well-being. He suspects this is because that type of team is more used to working with families. When his wife was first admitted to hospital, they were left waiting by staff for three hours in an environment that seemed unfamiliar and chaotic. In the hospital there were facilities, such as a family visiting room, but access to these facilities was not explained to him at first. 

Matt thinks that whether a close relative should have ECT is a very difficult decision to be consulted on. Although research studies evidence the effectiveness of ECT, the fact it takes places under anaesthetic and people have tea and biscuits afterwards, he feels there is no getting away from the fact that it still involves administering an electric shock to the head. Matt has now discussed treatment options for the future with his wife and would now feel comfortable giving his permission for her to have ECT, even if she didn’t want it when she was very unwell. 

Matt went to a weekly support session as part of the team that supported [his wife], but says that the hospital didn’t offer him any form of formal support. Although he has spoken to the children about the time that his wife spent in hospital, he hasn’t spoken to them about ECT as he feels they are too young to understand. Matt would like to know why clinicians and researchers still don’t fully understand the way in which ECT works. In addition he wants to know why, if it is considered to be so effective, ECT is seen as a ‘last resort’ for people who are very distressed. 

Matt tells the story of how his wife suddenly relaxed at the end of the course of ECT and it was the beginning of a slow recovery.

So we had this trip, I mean not far, we went 20 miles down the road and stayed in a cabin that some friends lent us for the weekend, and the build up to going was fraught and really tense and there were lots of arguments about how we were going to get there and when we were going to go, and what we were going to take and [name of wife] was getting very anxious and frustrated about it.

And then just really suddenly, it was really strange, I think the day before, the day before that last ECT treatment, she kind of suddenly relaxed about all the arrangements and we just settled on what we were doing and then we went, and the journey there was fine, and I remember waking up the next day, after we got there, and you know, the kids woke up really early. As I said the kids were three and five by then, and so we were on holiday and so they woke up really early and came to our bed and you know, [name of wife] was just laughing about stuff they were doing and I think they were tickling her, or she was tickling them and you know, she was just in a really, really good mood.

And they went and played outside and she got up and made a cup of tea and there was just something, it was like something had switched overnight. It was really incredible, really incredible. And… and after that, I mean that was. I think it took me a couple of weeks to realise that that was only the very beginning of a very slow recovery and you know, kind of in the months after that, every few months would realise that [name of wife] was a bit better than she was, and I kept thinking that she’d recovered and then realising that she was still recovering. And it probably… it probably took a year and a half after that in total. But that, just that overnight away at that cabin something really clicked and, and again it’s really hard to measure whether, whether that was because of the ECT or whether, because the ECT had finished at some level, at some subconscious level she kind of had to decide there’s nothing left, there aren’t any treatments left and this, you know, just have to get on with it.

And she said, I don’t remember this, but she said since that one of the consultants had talked about lithium and that she was so scared of the idea of lithium that she had to kind of make herself recover. So there might have been some of that going on. 

But the way, judging by the way, during that first course of treatments that she’d picked up, you know, kind of step-by-step, it’s really hard to think that it wasn’t connected with her recovery. And, I think, I think we both now think of ECT as being the thing that kick started her recovery, very much so. 

Matt said he was promised he could see his wife straight after her first treatment and later told he couldn’t. He felt he wasn’t taken into account or given much information.

So yes, and I remember… the first one was on a Friday about 9 o’clock and I remember dropping the children off at school and then trying to get up to the hospital in enough time, so that I would be there when she’d, when she came out. And I discussed that with somebody on the ward, or with her consultant or someone, and I had been told that that was absolutely fine. And I couldn’t be there while it was actually happening, but I could be there as soon as she came out of the recovery room. 

And but then I got up to the ward and you know, nobody knew what I was talking about, you know, and I went to the ECT Suite and there wasn’t any way in. There was nobody there. I went to the ward and they said, “Well that never happens, you can’t, you can’t do that.” And that was a fairly kind of common theme, the whole kind of period of, of [name of wife] being ill, was, was my role as her partner. And just not really being taken into account very much, and you know, not getting much information , not being asked for my perspective, you know, not, not, ‘how are you doing?’, but ‘how do you think [name of wife] is doing?’ 

I was the person who was spending most of the time with her you know, and when she very first became ill, the Crisis Team came out to see her, and didn’t even say hello to me, just literally, just had nothing to do with me at all. Didn’t say, what do you think’s happening, what do you think the problem is? Nothing at all. And that just kind of kept happening.

When his wife was offered ECT Matt was surprised that it was still used as a treatment and felt scared, so he researched ECT on the internet.

And when they first mentioned it to me, again as when I’d seen that sign, I was really surprised, really quite shocked that it was something that was being considered and it was quite, I guess it was quite frightening because it just seemed so different. You know, I’d got used to medication, I’d even got used to the idea of hospital and everything else, but ECT just seemed really different.

But on the other hand by then, we knew nothing else was working. And I was very open to any suggestions. …And also quite scared, because I knew that [name of wife] would react very strongly against the idea of, you know, she’s been reacting very strongly against the very idea of being ill, so I knew that this would be really, something really extreme that she wouldn’t want to get involved in.

So the first thing that I did. As soon as it was mentioned was I went off and looked it up on the internet. And I was really, I was really aware that sort of looking on the internet is problematic because you’re never quite sure where you’re getting your information from and you can quite quickly get into people with kind of maybe agendas and fixed ideas. 

But I came across some quite helpful stuff. There was one information sheet from the Royal College of Psychiatrists and one or two other things that seemed quite kind of level headed and quite kind of, you know, this is the evidence, these are the studies that have been done. This is, you know, this is what it is, for starters because I think I still had my kind of mental pictures from films. And actually to be told right, this is something that happens under general anaesthetic. This is the procedure, to how long it lasts, this is the after effects. That was really helpful. …And then you know, the actual statistics about its effectiveness seemed really surprising. Do you what I mean. I can’t remember what it was, but it was something really significant, like… oh I’m going to guess, but you know, like 60 or 70% of treatments are successful as opposed to 20 or 30% of medication courses. 

And it was kind of puzzling that nobody really seemed to have a clear answer about the process by which ECT might be effective, but then also nobody seemed to have much idea of the way in which medications are effective. And, you know, like I said, by then I just thought, you know, we’ll in a real mess, we’ll try anything that isn’t actually dangerous. It’s got to be worth a go.

The effect of ECT for Matt’s wife after the initial 7 treatments was hard to measure, but he noticed a definite change. It was not a change in her mood but in her energy level, returning to her talkative active self.

I mean she had it twice a week for three or four weeks, and then each time I’d try and get over there after dropping the kids off at the school. And the… it was really weird is really I kind of hard to measure what effect it was having, but by about the fifth or the sixth treatment, she… her mood hasn’t changed very much, but her energy level had changed really dramatically. It really, really picked up. She was much more talkative, you know, she was doing. There was all sorts of stuff going on in the ward which she’d been ignoring, you know, art classes, and drama classes, and badminton and table tennis and she was kind of, she was signing up for everything and doing all these things and it felt really positive. Because that was what she had been like ordinarily, kind of get involved in everything.

But the really odd thing was that her, it was like her energy had recovered ahead of her actual mood and her actual thinking. It was like, she was kind of cheerful, but she would be cheerfully saying really kind of dark things you know, so it was, it was like her thinking was the last thing to recover, but it felt. It felt really encouraging, it felt really positive and it felt really kind of exciting. That this… this thing was going to work. Especially because everybody had been talking about it as the kind of last option.

Matt felt that because his wife had had her ECT stopped and restarted it wasn’t as effective as it could have been. He found it very frustrating that a change in consultant had led to inconsistent treatment.

Yes, so then after the… I think it was the 7th treatment it was stopped quite suddenly, because the consultant changed. And there was this weird set up where the consultant who had wanted her to come into hospital was running the admissions ward. So he brought her into the admissions ward, but then you were only supposed to stay there for a few days, and she ended up being there for two weeks while they were finding her a bed in the kind of, in the more long term ward. During which time the treatment started. But then she got moved quite, quite suddenly into the new ward, and that meant that the original consultant wasn’t in charge of her care anymore, even though it had been that who had set up the ECT. And the new consultant just had a completely different opinion about the diagnosis, the problem, the history, and the use of ECT.

That was incredibly frustrating because you know, just the whole structure just seemed really absurd, because while she was at home there was one consultant, and then he had to hand over to this other consultant who was only in charge of the admissions ward, who then had to hand over to this third one. Who, you know, he spoke to her for about twenty minutes, read her notes, and decided to stop the ECT, which you know, it had been building up. Lots of people had been involved. The team that was looking after her in the community, those two consultants had discussed it, and you know, everybody in the admissions ward and I’d discussed with [name of wife], you know, it had just been this really kind of long, involved, decision making process. And this new consultant was able to just, just stop it. 

And it got to the point, I think, I… something happened, somebody, I think one of the nurses, one of the nurses on the ward spoke to me, and said something and she was kind of being a bit cagey, but she said something to me about the way the consultant had been, the new consultant had been speaking and kind of suggested that she thought there was a problem, and maybe I, it would be helpful for me to speak to him to give him more information or something like that. And so I phoned him up and then he offered to meet me, and so I went and spoke to him for about an hour. I mean he was quite generous with his time, but you know, it was, it was awful. He just, he had a really clear idea about what was wrong with her, and just completely disagreed with what other people thought, and it was to do with the depression and the psychosis. And, the fact that… ECT’s for treating depression. And it’s no good for treating psychosis, and… and he was saying, she was only exhibiting symptoms of depression because of the psychosis and so she had to have, just have a stronger anti-psychotic and everything would be fixed.

Whereas my experience, having seen her virtually get ill was that no, she had been gradually getting more and more depressed, until it got to the point, you know, where she had tipped over into psychosis but because he, you know, and I think he just generally didn’t agree with ECT full stop. So he was just able to come in and say he was going to stop it.

At first Matt’s wife was embarrassed and wanted him to keep quiet about her illness and ECT, yet since her recovery she has felt more “comfortable” talking to people about it all.

I guess the kind of the cultural baggage of it was quite significant. And given that [name of wife] was already really uncomfortable with people knowing that she was ill, people knowing that she was on medication, people knowing that she was in hospital. I mean she was in hospital for three months, the second time, three or four months. And she kind of wanted me some how to pretend that she wasn’t and was worried about people finding out that she was in hospital and that was really difficult. 

And… so ECT was kind of one more thing that somehow was embarrassing or shameful or you know, people weren’t supposed to know about. And you know, that was all part of her experience of illness and since recovery, she’s been quite comfortable talking to people about being ill and about being hospitalised and having ECT, but still ECT is a kind of, the last thing to surface and… sometimes in a way I think, she kind of enjoys startling people with it. Yes.

Matt said although his wife seemed to think they could force her to have ECT a few years ago, that wasn’t his impression. But ultimately she was very ill and she reluctantly agreed.

And a part of that they were worried about her safety, but part of it was that they wanted to start a treatment of ECT and although my understanding is it’s not essential to be an inpatient to go through ECT, I think it helps and I think… I think, you know, if somebody’s particularly ill or, not completely on board with the idea it helps. So that was why they wanted her to be there, and once she’d been there for only two or three days and was kind of settled down a bit they started talking to her, to the two of us about it. And she was very reluctant as I’d expected, but also, partly because of the way in which she was ill she was very kind of resigned as well, and I think, I don’t think this was ever said to her. I don’t think it was the case, but she, she… took what they were saying to mean, if you didn’t agree with the ECT that they would do it somehow compulsorily, somehow under a section. Which I mean I don’t know, but it wasn’t my understanding that they could do that. But that was what she thought. So she agreed to do it fairly reluctantly. But also I think in a kind of you know, just to an extent she didn’t really care, because of just how very depressed she was.