"It doesn't have to be perfect to work. If it saves your life, isn't that more important?" – Natalie.
JENNY BROCKIE: Hi, I'm Jenny Brockie, welcome everybody, good to you have you here tonight. Michael, I'd like to start you with, you work in finance tell us why you're having electroconvulsive therapy or ECT as it's known?
MICHAEL: For in excess of twenty years I've battled with depression and anxiety. I've pretty much trialled all classes of drugs to varying degrees of success.
JENNY BROCKIE: And therapy as well, like you know, seeing counsellors, psychiatrists, that kind of thing?
MICHAEL: Yeah, I've given all and everything a go. None of them worked for a long period, or sufficiently to keep me stable.
JENNY BROCKIE: Were you able to function? I mean you work in finance in a business area, were you able to function before you started having this treatment?
MICHAEL: Oh, I was able to function, but I'd cycle from a particularly bad bout of depression to sort of achieving a normal state and I guess I started to look at ECT as an option when all the other options started to run out.
JENNY BROCKIE: Well, I was with you when you had treatment five days ago, let's have a look.
MICHAEL: I am not a morning person. Just getting ready to go into hospital to have some treatment, usually have a series of about a dozen treatments. It’s a bit scary, the first time I had it done - I made sure I write down all my past friends. Hoping for the best but expecting the worst. Actually one of my friends at work said, 'Oh your back!" meaning that I had sort of been absent for a couple of months, yeah – back to my usual self I guess.
DR JOSH GEFFEN, PSYCHIATRIST: Our first patient today is going to be Michael. Michael has been having a course of ECT and he has agreed to be involved today, so we will go through with what we would normally do with Michael.
The recording electrodes that we are placing now is simply like when you have a heart trace or an ECG done except we are taking a trace of brain wave activity. So a few nice deep breaths and you will wake up next door in about 10 or 15 minutes.
You will see a slight twitching
JENNY BROCKIE: Yeah.
DR JOSH GEFFEN: The twitching is the muscle relaxing, reaching the nerve muscle junction and it is quite useful for us because we know that once that twitching finishes that for about the next minutes Michael is going to be paralysed.
The electrodes are places at the frontal area to try and target mood areas of the brain and relatively speaking spare the part of the brain that are involved with memory.
Are we ready to go now? One two, three. Now we have induced a brief generalised seizure, we know this because there is a very small of movement in Michael.
JENNY BROCKIE: Yeah you can see that right through his body.
DR JOSH GEFFEN: That is correct.
JENNY BROCKIE: So, what happens now?
DR JOSH GEFFEN: Now Michael will come through to the recovery area.
JENNY BROCKIE: What's it like looking at that?
MICHAEL: I'm trying not to say shocking.
JENNY BROCKIE: It was very generous of you to let us, to let us film that and I know you wanted to because you're so passionate about this, yeah?
MICHAEL: Yeah. It's an important topic. I think there's a lot of stigma behind the illness and the treatments and the last thing anyone who is suffering from severe depression needs is additional stigma.
JENNY BROCKIE: How are you feeling now after that, because that's just some days ago, it's quite recent, how are you feeling?
MICHAEL: Yeah, I've actually only just had treatment this morning.
JENNY BROCKIE: Again?
MICHAEL: Again, yeah. I am doing a fairly comprehensive series of about a dozen treatments and then hope to have that schedule changed to a maintenance sort of regime to keep me stable.
JENNY BROCKIE: So how are you feeling then tonight?
MICHAEL: Um, well I'm fairly upbeat, a little bit tired. But people always are shocked, sorry to use the word again.
JENNY BROCKIE: It's going to be a bit of that tonight I think, yeah.
MICHAEL: When I say I've just had treatment or"¦
JENNY BROCKIE: How many treatments have you had all together?
MICHAEL: Roughly about thirty.
JENNY BROCKIE: Josh, you're Michael's doctor, why so many treatments, why he is having so many?
DR JOSH GEFFEN: Well Michael's had three courses of ECT now and a typical course of ECT is between six and twelve treatments and particularly if we try and use modern forms of ECT tends to be closer to about 9 to 12 treatments. We try and use those modern forms of ECT because they're relatively sparing of memory function.
JENNY BROCKIE: How do you decide who gets ECT? How serious does your depression to have to be?
DR JOSH GEFFEN: In a very extreme situation, a life and death immediate situation where people have stopped eating and drinking, where they're intensely suicidal, then ECT is actually prioritised possibly in a first line treatment because it's highly and rapidly effective. There's another group of patients who have a more severe biological depression which is also associated with feelings like suicidal feelings, weight loss and an inability to function and then there's another group of patients who've tried many different therapies and they're doing so because of, I've guess, a longer term frustration with the available treatments for their depression.
JENNY BROCKIE: How many treatments would you do a week?
DR JOSH GEFFEN: I could be doing up 60 treatments a week. Usually approximately that would be divided amongst about 30 patients.
JENNY BROCKIE: I think for a lot of people at home listening to this they're going to be quite surprised that it's used as widely as it is. I know just anecdotally people I've spoken to about doing this program have been quite surprised by how widely it's used. So I want to just get a little bit more into that. Just before I do though, Michael, one very important question to you, what difference has it made to you?
MICHAEL: It's been the difference between - it's enabled me to continue working. It's enabled me to shake off particularly bad depressive states. Yeah.
JENNY BROCKIE: Natalie, you're also a patient of Josh's, how many treatments have you had?
NATALIE DEETH: This is where the complication of the ECT comes into it as far as my treatment goes, and this is where I have to refer to Josh to actually ask how many treatments I've had because I have actually no knowledge now because I have lost an incredible large amount of memory.
JENNY BROCKIE: How many treatments has she had Josh?
DR JOSH GEFFEN: Natalie's had more than 100 treatments over the last ten years or so - it definitely has had a very major impact on Natalie's, what we call autobiographical memory, her memory of events over many years.
JENNY BROCKIE: Natalie, I want to know why you're having the ECT, because you're still having it?
NATALIE DEETH: I'm having it because I've got severe depression attached to being bipolar.
JENNY BROCKIE: And you said to me that you don't know if you'd be here if you hadn't had it done?
NATALIE DEETH: I wouldn't be, I'm confident of that. I was extremely suicidal to the point where I was self- harming, trying to just get rid of the pain that seemed real, and I would burn myself quite severely with cigarette lighters from cars and things like that just to get rid of the pain and it wasn't working and so they admitted me to hospital to protect myself.
JENNY BROCKIE: Well I was with you too when you had your treatment, let's have a look.
NATALIE DEETH: The darkness of, and just heavy, it’s very difficult to do things and be part of my family, like at home it’s hard to even care about having a shower or brushing my teeth or cooking a meal for the family or any of that sort of stuff.
DR JOSH GEFFEN: Natalie’s illness has been a life threatening illness, she has been so distressed at time that she has burned herself, it’s been a very, very difficult course of illness.
One, two three"¦
NATALIE DEETH: Yeah, I feel a lot better actually, which is probably hard to imagine. Just brighter and well and I feel like I can do things, I can physically go home and do things around the house.
JENNY BROCKIE: Natalie, let's get back to that memory loss.
NATALIE DEETH: Mm-mmm.
JENNY BROCKIE: What side effects have you had since you started having ECT?
NATALIE DEETH: Well, the worst the part would be the memory loss, I was a registered nurse and I lost all that.
JENNY BROCKIE: You lost your memory of your training?
NATALIE DEETH: Yes, so I, but I was extremely fortunate that I found another job once again as a nurse but as a nurse’s aide basically, and"¦
JENNY BROCKIE: So how many years of memory have you lost from having the treatment?
NATALIE DEETH: So it goes from now basically to when I was a child, I have basic memories of my family as a child, my father and mother and my siblings, but"¦
JENNY BROCKIE: We've got photos here of you, do you remember these things?
NATALIE DEETH: No.
JENNY BROCKIE: You don't remember graduating?
NATALIE DEETH: No.
JENNY BROCKIE: What about your wedding, do you remember your wedding?
NATALIE DEETH: No, but that's why the photos are so important and I think people have to remember that for different reasons.
JENNY BROCKIE: So when you look at that photo, do you feel anything that it's familiar, that registers as"¦
NATALIE DEETH: No.
JENNY BROCKIE: Not at all?
NATALIE DEETH: No, except my husband and I are still together despite everything that he has had to go through with me.
JENNY BROCKIE: John, what's that like, to be married to someone who doesn't remember your wedding day?
JOHN DEETH: Well, it's very confronting really. I guess when we initially observed Natalie with the memory loss, I think initially we thought that it may come back, you know, that I guess we lived in a little bit of hope that it may come back. But as time went by we realised it was going to be quite profound amnesia that we have to live with. Yes, it has been very confronting, was very traumatic at the time.
JENNY BROCKIE: Natalie, did you remember you had children?
NATALIE DEETH: No.
JENNY BROCKIE: Goodness me, and Hamish what was it like for you?
HAMISH DEETH: Um yeah, as my father said it was very confronting. It's very different to have your mother not remember who you are, that you're her son.
JENNY BROCKIE: Natalie, you feel that the treatment has really helped you with your depression?
NATALIE DEETH: It's allowed me to be a mother to my children and a wife to my husband again, which I know confidently with the depression and the suicidal thoughts that I had, I wouldn't be if I hadn't had ECT.
JENNY BROCKIE: So it's a huge trade off for you?
NATALIE DEETH: Yes. I've actually gone back to work again for about the third time, each time I've lost my memory before I went back to work and they've had to give me somebody to co-work with me to show me the ropes again. I've offered to, I've told the staff that I would resign if they thought that was better for the workplace and the other staff members there and every single person I work with has been positive about this.
JENNY BROCKIE: You've had a good employer?
NATALIE DEETH: I have had an extremely good employer and a good husband and doctor.
JENNY BROCKIE: Josh, did you warn Natalie did the possible side effects of ECT?
DR JOSH GEFFEN: Yes I did. Most patients will have some memory disturbance around ECT but very few will have the severe autobiographical memory loss that Natalie's had.
JENNY BROCKIE: Colleen, you're a specialist in this area of ECT, I know. I mean how unusual is that experience?
PROFESSOR COLLEEN LOO, BLACK DOG INSTITUTE: Look, it tallies very nicely with what I've seen with Michael and Natalie, I think they're at both ends of the spectrum. So I see with my own patients, some people have hardly any memory disturbance and other people have severe and sometimes you know, like Natalie, persisting memory disturbance but as Josh was saying, that's in a minority. I think really importantly Jenny what we're hearing also from both Michael and Natalie is the quality of life. So you know, very interestingly a study in the US which asked people to rate their quality of life before ECT, immediately after ECT and six months later found that 87 percent of people had higher ratings of quality of life after ECT than before and that percentage was 78 percent at six months follow-up.
MICHAEL: I would go so far as to say perhaps my memory is a little bit better because such was the level of my depression that I had difficulty concentrating, difficulty remembering names.
JENNY BROCKIE: Kylie, I know you had twenty treatments of ECT a couple of years ago?
KYLIE MOORE: Yes.
JENNY BROCKIE: What happened to you afterwards, did you have any"¦
KYLIE MOORE: We'll, I've had both bilateral and unilateral ECT. Unilateral is both sides and the right is obviously on the right, and there is definitely more memory loss with the bilateral.
JENNY BROCKIE: Can you give an example?
KYLIE MOORE: Well the very first dose I had I woke up and I had a phone number in my head and that's all I had. I didn't have anything else. But when I got back to my room I rang this number and I was crying and a man answered the phone and I said: Oh, who's this? And he said: It's Peter your husband, and then I turned, I asked him, I said: Who am I? And at that point I didn't even know who I was but I had his number in my head. So how it selects what you remember and don't has always astounded me.
JENNY BROCKIE: And Peter, what was that phone like for you?
PETER THURSKY: Odd, very, very bizarre, yeah.
JENNY BROCKIE: Had you been warned that things like this could happen?
KYLIE MOORE: Not about the memory loss. I think the memory loss was underestimated a little bit and not, but I was probably more aware of it myself with my research because it was a very planned, planned event for me.
JENNY BROCKIE: Did you get your memory back?
KYLIE MOORE: There are periods where I have clearly lost in the twelve months prior to the ECT, big chunks, significant life events have gone.
JENNY BROCKIE: And how do you feel then about the benefits of the treatment versus that loss?
KYLIE MOORE: Benefits outweighed the loss for me.
JENNY BROCKIE: So your depression was so bad?
KYLIE MOORE: Yes, I was suicidal and I was also placed under the category at that time of being medication resistant major depression. I've gone through all of the medications I've been on and I can name over thirty medications in a fourteen year period and I'm on very few, I'm on the least amount of drugs I've been on since fourteen years ago and so that for me is incredible and that's a bonus and there's only so many drugs out there and I needed something else.
JENNY BROCKIE: How do the professionals in the room explain that to patients, the likely risks?
PROFESSOR SAXBY PRIDMORE, UNIVERSITY OF TASMANIA: I never say that you might be affected as Natalie is.
JENNY BROCKIE: You never say that?
PROFESSOR SAXBY PRIDMORE: I've never seen it before.
JENNY BROCKIE: You've never seen it before? Have you seen it before Colleen?
PROFESSOR COLLEEN LOO: I have not many people who have as severe loss as Natalie's. We were saying Natalie really is one end of the range.
JENNY BROCKIE: Jonathan?
JONATHAN PHILLIPS, PSYCHIATRIST: Well consent is actually critical. People need to know what the risks are of ECT and memory loss is one of the bigger ones. But I think we're losing perspective here, most people who have depression don't go near ECT and will never have ECT. Most people who have depression will respond to a talking therapy. A great number will respond to medication and it's only a small and quite special group.
JENNY BROCKIE: And very, very severe depression?
JONATHAN PHILLIPS: Indeed, indeed, very severe and who basically have not responded to other forms of treatment. So let's get it right, that ECT"¦.
JENNY BROCKIE: So why has the amount of treatments doubled in the last ten years then?
JONATHAN PHILLIPS: I think there's many reasons for that. I think that ECT has, modern ECT is a lot better than old fashioned ECT, even though one would wonder otherwise this evening. But it's a safer form of treatment than it had been in the past.
JENNY BROCKIE: John Read in Liverpool, you're a Professor of psychology and you're a strong critic of ECT. Why?
PROFESSOR JOHN READ, UNIVERSITY OF LIVERPOOL: Well, the reason I've got serious concerns is because I think in medicine we ought to base decisions on what the research evidence says. And the research says very clearly that after 80 years of using this treatment, there has not been a single study yet that has shown that ECT has any benefit whatsoever beyond the end of the treatment period. So what the research is saying, there is no benefit beyond the end of treatment compared to placebo.
During treatment there is a small number of people who do get a very temporary short term lift in mood and what happens when you get a temporary improvement from a treatment but no long term benefit is then you do see people coming back over and over again because the treatment doesn't work because it doesn't have any long term benefits. The best research shows we've got about 20 percent of people with severe permanent memory loss as a result of the ECT.
I'm very concerned that Australia is going completely the opposite direction from the rest of the world. Elsewhere in the world ECT is either barely used at all or rapidly diminishing, something alarming is going on in Australia.
JENNY BROCKIE: Okay, I want to get a response to this. Colleen, can I get your reaction?
PROFESSOR COLLEEN LOO: Yes, look, and I read your work John. The same body of evidence was reviewed by the highly respected UK National Institute of Clinical Excellence and they concluded that it was very strong evidence for the ethicacy of ECT and that it's a very important treatment for severe depression and one of the things we know is that it's not good to have an acute course of ECT and then abruptly stop with no further treatment. This is a true of many treatments in medicine.
If I treat your high blood pressure and then once it's in a corrects range to abruptly stop, you will have a problem again. So likewise with ECT it's very important that the treatment is tapered and that people are transitioned onto on-going treatments, often medications that will maintain their improvements and there are research studies that have looked at this and have showed that with appropriate on-going treatment, the benefits of ECT are maintained for the majority of people. I don't know that John is aware of those studies.
JENNY BROCKIE: Can I ask the people here, how does ECT actually work? What does it do? Do you know how it works Jonathan?
JONATHAN PHILLIPS: I don't think anybody really knows how it works. I think there's no doubt that mood is maintained by a number of chemicals within the brain and I suspect that ECT restores those chemicals to what they ought to be.
JENNY BROCKIE: You suspect that but you don't know it?
JONATHAN PHILLIPS: I don't know, I don't know, I would not pretend to know. I don't think the knowledge is sound enough at the moment to be sure what ECT does. But I do know that in very severe depression it really works.
PROFESSOR JOHN READ: I think it's alarming that after 80 years, people using ECT, don't know what it's doing to the brain and don't know how it works. We've just published a paper a couple of weeks ago showing that the actual effects on the brain are pretty much the same as for a mild brain trauma and they, those sorts of brain traumas, if you have a bang to the head, those sorts of things, often include a very, as well as the bad effects, often include a short term sort of minor euphoria.
JENNY BROCKIE: John, can I ask you though, if ECT is saving people's lives, you know, if we're talking about people who are suicidal and it's actually saving them from being suicidal, it's saving lives, does it matter if you don't know how it works?
PROFESSOR JOHN READ: Well, the problem Jenny is again there is not a single study showing that it does save lives. This is a common claim made for 30, 40 years by that dwindling number of psychiatrists who still believe that ECT works.
JENNY BROCKIE: Well it's a claim that's being, no hang on, it's a claim that's being made me here by Natalie?
PROFESSOR JOHN READ: It's a claim"¦
JENNY BROCKIE: Yeah, but it's a claim that's being made by people who have the depression, they're saying they might not be here, they're in this room. Can you just listen to Natalie for a moment, I'm interested in getting you two talking to one another, Natalie?
NATALIE DEETH: I actually started with the, and this is just from feedback from Josh and my husband, having counselling and all that sort of stuff and nothing was working, they tried medication, I was still suicidal, I was not a part of my family. And now I am and the only thing I can reflect on is the fact that the ECT worked for me. And I would hope that tonight I am saying this so that somebody out there will see that it doesn't have to be perfect to work for you. If it saves your life isn't that more important to your family?
PROFESSOR JOHN READ: Of course it's important Natalie and of course I'm pleased that you feel that it has helped you. What I'm trying to say is that if you take 100 people who have ECT and 100 people who just have the general anaesthetic without the electricity, the outcomes are the same. That's the major point I'm trying to work, trying to make. Within that of course I'm pleased that individuals feel that the ECT has helped them.
JENNY BROCKIE: Paul, quick comment from you.
PROFESSOR PAUL FITZGERALD, MONASH ALFRED PSYCHIATRY RESEARCH CENTRE: Yeah, I think what John's referring to, there has been a movement in medicine in general in recent years to ensure that the treatments we use are based on evidence. However, there are a whole series of treatments in medicine, including ECT, but things as simple as having your appendix removed when you have appendicitis that were established well before those standards were in place. And so ultimately if we haven't got those trials done in the modern era, of the modern sorts of ECT, we actually have to listen to our patients. If our patients are saying there are significant benefits for their treatment, and we see that in literally hundreds, if not thousands, of patients around the country all the time, we have to respect their views and ultimately if patients weren't getting better with treatments, these treatments wouldn't be being applied.
JENNY BROCKIE: I want to pick up on a couple of the other points that John raised. That ECT is use is dwindling in other parts of the world compared to Australia. Colleen?
PROFESSOR COLLEEN LOO: There's been a lot of developments technique over the last 20 years, so new forms of ECT, a better adjustment of the actual electrical stimulus as well as individualising the ECT treatment to each patient and every treatment. And I think this could account for some of the increased number of treatments, some of the newer treatments which have less side effects do take more treatments, as Michael has found, and also there might be an increasing willingness among patients to take up the treatment because of the better side effect efficacy profile.
JENNY BROCKIE: Is it used more widely here in Australia than in other countries though?
PROFESSOR COLLEEN LOO: I'm not aware of that.
JENNY BROCKIE: Is that the case?
DR JOSH GEFFEN: I don't believe so.
JENNY BROCKIE: Josh, what did you want to raise?
DR JOSH GEFFEN: I guess I'm concerned that John's made a number of bold statements and he's talked about the value of evidence and I guess I'm concerned that there are people who might be suffering from severe depression who are listening to this who might accept those statements as though they were fact and maybe discouraged from taking an available effective treatment under consideration as one of their options. And statements like there is dwindling use of ECT around the world simply aren't true, there's actually increasing use of ECT.
The statement they're a dwindling number of psychiatrists who have an interest or use ECT is also not true. I've also taken the opportunity and over the last few years continued to look at the same literature that John talks about. Multiple other authors have done better analyses where they've looked at ECT's efficacy versus what's called sham ECT, a placebo, which is just having the anaesthetic, as John said, versus anti-depressants. And they have concluded, and respected scientific bodies have concluded that ECT is more effective than sham ECT, that ECT is more effective than anti- depressant therapies.
JENNY BROCKIE: Ella, how old were you when you first had electroconvulsive therapy or ECT?
ELLA: I was 16 and I had a second lot when I was 17.
JENNY BROCKIE: And why did you have it?
ELLA: I was just very depressed. I was at school at the time, I wasn't coping as well as I was expected to, I was just very depressed. I required - I needed to be hospitalised several times. I had been through all the therapy, all the different anti-depressants more than I can even remember, and it sort of got to a point where they thought that that would be the best option for me.
JENNY BROCKIE: Linton, your Ella's father, can you describe what her teenage years were like, how sick was she?
LINTON: She just shut down basically. No communication and then self harming came on, cutting arms, legs.
JENNY BROCKIE: Now Ella, you had ECT against your will?
JENNY BROCKIE: Is that right? Can you tell us about that?
ELLA: The first lot when I was 16 I had eight voluntary treatments which weren't very effective at all. They didn't do anything. In fact I think I got quite a bit worse after that. I was transferred from hospital, I was into a more high care hospital as an involuntary patient and by this point I had basically stopped, I'd stopped speaking, I'd stopped talking, I'd stopped eating, drinking, I was completely not responsive to anything or to anyone and so it was the idea was thought again and I wasn't seen to be in a fit enough state to be able to make these decisions for myself.
JENNY BROCKIE: So your parents were asked?
ELLA: My parents were asked and they"¦
JENNY BROCKIE: Did you want her to have it done?
LINTON: We, we weren't happy about it because the first series of treatments did not seem to work, but I will say that at the second hospital one of the doctors said my daughter's case was the worst they had ever had there.
JENNY BROCKIE: So what happened in the end, who made the decision for you to have it?
ELLA: In the end it was brought to the Tribunal where my treating psychiatrist presented their case to the Tribunal and it was decided that it was necessary to save my life.
JENNY BROCKIE: And did it work?
ELLA: It did work in that at the end of the treatment I was communicating a little bit. I was eating and drinking so I had lifted out that of, you know, crisis stage, but I was still depressed. I was still quite suicidal.
JENNY BROCKIE: And how did you get to the point you are now?
ELLA: Just time really, I think. It's hard to say, it all happened over so long and very slow improvements. You know, support of family and friends that sort of thing.
JENNY BROCKIE: How did you feel about that, you were 16?
ELLA: I have mixed feelings about it. I think it was helpful to me. I don't know if it was, I did feel a bit disrespected in that my rights were taken away from me, no one had a choice about it, it did help but I do feel like I would have recovered in the end. While it did lift me out of that, you know, very low state, it wasn't a miracle fix. It did take years after that to recover, I was still very depressed for a very long time.
JENNY BROCKIE: Barry Thomas, you're from the Queensland Mental Health Review Tribunal which didn't deal with this case I should point out. I think many parents would be, you know, quite concerned watching this, around this issue of consent and that Tribunals can override the issues of adults too in these situations.
BARRY THOMAS, QUEENSLAND MENTAL HEALTH REVIEW TRIBUNAL: Well Tribunals exist to safeguard people's right to make choices, but the reality of life is with severe mental illness, the individuals are not making the choice. They've lost that capacity and one of the first steps with ECT is the Tribunal has to look at does the person have the capacity to make the choice? Do they really understand what's happening? Can they weigh up the information?
We look at that and we weigh up the evidence that's presented by the patient, their support members, their treating team, we decide if it's clinically the most appropriate form of treatment in that situation given the person's history and clinical needs.
JENNY BROCKIE: So what sort of things have to be sitting there as conditions for you to take that decision out of the hands of an adult?
BARRY THOMAS: Well really we look at do they appreciate that they've got an illness? Do they appreciate the choices that are available in relation to the treatment of that illness? Things of that nature so that we get to understand what their view of the situation is, all those sorts of issues and we hear from the patient where it's possible.
JENNY BROCKIE: So how often would you do it, how often would you make a decision to administer ECT to a patient in those circumstances?
BARRY THOMAS: In the last year we would have made 450, decisions about treatment applications.
JENNY BROCKIE: What are the guidelines around this? I mean in terms of informed consent in Australia for ECT? I mean my understanding is the WHO says it should only be administered after obtaining informed consent, is that right?
JONATHAN PHILLIPS: But informed consent is only for those who can make the consent. There are a group of people, as we've heard, who, because of the nature of their illness, are so unwell that they have no idea what their illness is about and no idea what treatments work and no idea what the side effects are likely to be and so on.
JENNY BROCKIE: Can I ask you about giving ECT to teenagers because Ella was 16 when she had it done. Jonathan?
JONATHAN PHILLIPS: Well I think it's fair to say that teenage brain is still, as it were, growing and nobody wants to give any form of therapy unless it's absolutely necessary to a teenager, any form of therapy in terms of drugs or ECT. But when the situation is dire and the person's life is at stake, the goals change and it's important then to offer the person something which may save their life.
JENNY BROCKIE: John Read, can I put that to you? I mean if you are dealing with life and death, I raised this with you before, and this treatment does appear to help people, it helped Ella, how do you feel about it being administered to a teenager?
PROFESSOR JOHN READ: Well it appears to help is the key issue there. If we listen more carefully to Ella, we heard that time helped, other things helped and again this caused a temporary minor lift in mood and the issue of compulsion is particularly concerning.
DR JOSH GEFFEN: I'd just like to point out, and I'm good that John was listening carefully to the discussion here because I heard a father saying that his daughter was days away from death because she couldn't drink water or eat or speak. And I also heard you quite rightly point out that it didn't address all of your problems but that it only got you to a point where you could then work very hard over an extended period of time to continue to address your depression and I think you're to be congratulated on how far you've come with it. I think all treatments we have to understand what they can do and what they can't do, it's not a panacea, it doesn't work for everybody, it doesn't do everything.
JENNY BROCKIE: Okay, Ella, response?
ELLA: I have the same arguments with myself really about the whole thing. I struggle to sort of have a particular view about it because I did feel that I was too young. I did feel like, you know, we were mistreated, not respected in taking that decision away from us, although it did help. And I think the problem is that doctors are too willing to prescribe medications, antidepressants, when things might not be that bad, when you could through things just by talking to them, going through a course of therapy. I think antidepressants are over prescribed as well. I mean that's another story.
JENNY BROCKIE: Okay, Lisa, you're a child psychologist, I wonder what you think about ECT being administered to children?
LISA: Truthfully, I think it's really frightening.
JENNY BROCKIE: Now you've had it yourself, how old were you?
LISA: I was 25.
JENNY BROCKIE: And did it work?
LISA: Nope. Um, I, I don't have a lot of memory around that time. I remember I was very distressed and keen to get better very quickly because I was studying and I wanted to move on with my life and so my doctor and I made some fairly rapid decisions about going into it and committing to it. And like yourself, my condition got worse before it got better. I was rehospitalised within three months of that treatment and I actually withdrew my consent and my doctor agreed to stop after eight treatments because I was so distressed about the memory loss. But I don't remember what type of memory loss. I didn't lose any autobiographical memory, the only thing that I had struggled with in the twelve months following was word finding problems and to as someone who was trying to finish a thesis, that was a big problem.
JENNY BROCKIE: How bad was your depression?
LISA: It was severe, it came on very quickly. I've had several depressive, severe depressive episodes throughout my life and like many of the other stories here, I've tried a lot of medications. I wasn't offered therapy as a young person when it first presented.
JENNY BROCKIE: This is really interesting I think, this whole kind of going right back to before the severe depression happened.
JENNY BROCKIE: Okay, Tamara, your Lisa’s mum, how do you feel about it?
TAMARA: Well, you know, it's a very traumatic experience having ECT for the patient, for the family, particularly when it doesn't work because I think in the short term things get worse because of the memory loss and the trauma associated with it.
JENNY BROCKIE: So how are you coping now Lisa?
LISA: I'm good now but it's up and down. I have struggled this year and ECT was offered to me as a treatment again and I said no way, I'll never do that again and I think everybody's experience of depression is really unique and there's no model that fits everyone. And a lot of this is trial and error and sometimes the trial, the error outweighs going through the trial in order to find out.
JENNY BROCKIE: Kylie, you were offered ECT when you were pregnant with your second child?
KYLIE MOORE: Yes.
JENNY BROCKIE: Can you explain why?
KYLIE MOORE: That was 2001, severe antenatal depression, suicidal while pregnant and but we didn't agree at the time because we don't know how it works precisely but if we don't know how it works precisely on us, how do we know what's going to happen to my foetus?
JENNY BROCKIE: Now Peter your husband is actually an ECT nurse?
KYLIE MOORE: He's a theatre nurse and he does work with ECT?
JENNY BROCKIE: You do work with ECT in theatre, yeah.
PETER THURSKY: I work with ECT, yes. ECT does work, it's helped Kylie dramatically, but we weren't sure what was going to happen, so unless you can be 100 percent sure, then not.
JENNY BROCKIE: Colleen, what are the guidelines for administering ECT to pregnant women, are there any?
PROFESSOR COLLEEN LOO: It is permitted in pregnant women and there is good evidence that it works, there's good clinical evidence that it works, in fact for many patients they would consider ECT is actually a safer option in some cases than the medication.
JENNY BROCKIE: Cathy, you had electroconvulsive therapy over a couple of years, did it help you?
CATHY CLEARY: It did initially. It certainly, I think it actually saved my life initially. I went from being a very happy person, outgoing person, to a very, very depressed person and I had lots of medication and finally and lots of talk therapy and finally ECT was tried and initially I think it did stop me from committing suicide. But as time went on it seemed to lose its effectiveness and, yes, and I got some memory loss.
JENNY BROCKIE: Okay, so you've been using another treatment recently?
CATHY CLEARY: Yes.
JENNY BROCKIE called deep brain stimulation. Tell us what that involved?
CATHY CLEARY: Deep brain stimulation involved having two electrodes put in my brain in the area that controls mood and then I have a stimulator here, like a pacemaker in here and that's, I have a charger and that's charged up and that sends a continuous pulse, stimulation to the part of the brain controls mood and I've had it for four years.
JENNY BROCKIE: We've got some pictures of you here, it's a pretty major piece of surgery, isn't it, to have this done?
CATHY CLEARY: It was.
JENNY BROCKIE: I think we've got some photos, there you are.
CATHY CLEARY: Great picture, isn't it? Yes, my head was shaved for it, you're awake through the whole thing too which is"¦
JENNY BROCKIE: Right, so how long ago did you have that done?
CATHY CLEARY: I had the actual operation in March 2009 and then it was turned on, the stimulator was turned on in May 2009.
JENNY BROCKIE: And how often do you use the charger?
CATHY CLEARY: Probably every three or four days.
JENNY BROCKIE: And how does that work, you just hold it up?
CATHY CLEARY: I just have this little.
JENNY BROCKIE: Don't do it now if you don't need to.
CATHY CLEARY: It doesn't have any, no, I just have this little thing that I insert where you saw the stimulator and I just turn it on, it tells me how much charge I have and then it tells me when it's finished charging, I can do it while I'm watching tellie, any time be at all.
JENNY BROCKIE: Paul, you're Cathy's doctor, how does this work and do you understand how this works, do you understand what this does?
PROFESSOR PAUL FITZGERALD: We have a significant amount of information about how the DBS works, just as we do with ECT and the other new treatments we're developing. That doesn't mean we have a complete, you know, fully developed knowledge that I can give you 100 percent accurate description about how it works. When people are suffering severe depression there's a significant imbalance between the activity in different areas of the brain, some areas are over active, some areas under active, and by stimulating particularly very small areas of the brain it seems that we can kind of reset activity around that circuitry and restore normal activity and hopefully, at the same time, you know, the person's normal mood.
JENNY BROCKIE: How has it been for you since you've had it?
CATHY CLEARY: It has been absolutely wonderful, it has changed my life for the better. It's brought me back, it's given me back a life, yeah. I went from someone who as I say was living in a grey world where I didn't feel as though I had contact with anyone, I have seven children and 26 grandchildren and I just felt I couldn't rejoice in anything I had. I had no joy in life. I've got that joy in life back. It has been wonderful and it's amazing though, I remember the day that it was switched on and it was like the colour came back into the world, it was just absolutely amazing.
JENNY BROCKIE: Natalie, you talk about colour coming back into your world too, don't you?
NATALIE DEETH: Yes. It's a couple of things, if I can, one thing was my mother was very against me having the ECT. She felt that it was slightly barbaric if anything else. Now she's says if it hadn't been for that she wouldn't have a daughter and you know, I think that that's something that, you know, people don't understand just how important it is. I now am, I think I said it before, I'm a wife again and a mother and I'm productive in society. I can do the shopping, I go to work, I've been back at work for a eight weeks now and each day I work, I work two days a week and I work a few more hours each time.
JENNY BROCKIE: Peter, you're getting very emotional listening to this. Do you want to tell us why?
PETER THURSKY: Just the change, because it's so positive. Sorry.
JENNY BROCKIE: That's okay. That's okay, I'm sorry, I didn't want to put you on the spot but I'm just interested that listening to Natalie's description and also listening to the other description, that you've reacted really strongly.
PETER THURSKY: Similar to what it's done for my wife Kylie, it's just changed her life, it has gone from, Kylie went from lying in bed for a month at a time not getting out of the house, not going shopping, I work a 7.30 to 6 shift, come home make dinner, which she wouldn't be able to do herself.
JENNY BROCKIE: Pat, how do you feel about your wife's treatment, about Cathy's treatment?
PATRICK CLEARY: Oh, I get too emotional about it. Just leave it be, it's been hard, a hell of a road, but"¦
JENNY BROCKIE: That tells its own story though, the way you're describing it though tells its own story.
PATRICK CLEARY: Yeah, yeah, it affects everyone and affects everyone in different ways. Within the family and"¦
JENNY BROCKIE: How different is she now?
PATRICK CLEARY: I'd say she's probably 90 percent of what she used to be.
JENNY BROCKIE: Before the depression?
PATRICK CLEARY: There's areas that I think have changed but"¦
JENNY BROCKIE: What sort of things?
PATRICK CLEARY: Oh.
CATHY CLEARY: I'm crankier than I used to be.
JENNY BROCKIE: That might have happened anyway.
PATRICK CLEARY: She was always pretty cranky.
CATHY CLEARY: It just brings you back to a state where you know, depression hasn't taken over your brain and taken over your life and you can feel all the emotions instead of that greyness of depression.
JENNY BROCKIE: So Paul, why is this being used in some situations and not ECT?
PROFESSOR PAUL FITZGERALD: Because it's invasive and because it's still experimental we don't feel it's appropriate to be used earlier in the course of the illness, but hopefully down the track as it's more well established it can become an option for patients who don't respond to other treatments.
JENNY BROCKIE: Natalie, have you thought about it? Have you looked at that treatment at all?
NATALIE DEETH: No, probably more so because as far as I'm concerned ECT has worked for me.
JENNY BROCKIE: How long do you think you'll be having it for and I want to ask you that too Michael.
NATALIE DEETH: This will really depend on my mood and how things are going.
JENNY BROCKIE: Josh, how long can you have ECT for? I mean do you know how along it's safe to keep giving it for?
DR JOSH GEFFEN: We have accounts and tracking of people's functioning who have had long term maintenance ECT, even over 20 years or so. However, that really that's the exception.
JENNY BROCKIE: Michael, what about you? I mean how long do you think you'll be having it, because you all present very well. You know, you present here very well and you're speaking as though, you know, any member of our audience would speak. But I know sitting behind your stories are some very dark moments indeed and very severe depression, yeah?
MICHAEL: For myself I'm willing to have a go at maintenance ECT.
JENNY BROCKIE: This is on-going ECT?
MICHAEL: On-going ECT for as long as I achieve some benefit. The day that I don't will be the day that I look at other therapies, I guess.
JENNY BROCKIE: Well, it's life and death really for some people, isn't it? Yeah?
PADDY CLEARY: Isn't this typical of the mental health debate though that we're sitting here discussing the rights and wrongs? Like these three people have had ECT and are all quite happy and mum's there and whatever else. You know, if we were talking about leukaemia and one of the upshots was that the treatment cured you, but you did lose your memory, we wouldn't be having this debate, we'd just say get into, let's fix it.
CATHY CLEARY: My stimulator is used for Parkinson's, Tourette's, a lot of other things besides depression and no one has a problem with those.
FIONA WATERS: They should be applauding it, not criticising it saying it's like 1984. Who cares? We've got mum, it's working and we use pig bits for hearts and all sorts of things. Why not, you know, what's wrong with finding the cures?
JENNY BROCKIE: John, can I get a response from you? I mean you've got a chorus of people here all basically saying that, you know, what are you supplying such a rigor to this when we don't apply similar rigor to other things?
PROFESSOR JOHN READ: I think we should apply rigor to everything but my bottom line position is that's what the studies are showing. The problem is the memory loss and brain damage, that's why we need to be more cautious.
JENNY BROCKIE: Jonathan?
JONATHAN PHILLIPS: ECT is the gold standard treatment for severe depression, there's no other way to look at it. Not that you go there first off but it's a life saving technique when it is necessary.
JENNY BROCKIE: I want to finish with you three because I'm just interested now where to now for each of you. Ella for you? How are you going?
ELLA: Fine, since six, seven years ago I haven't had such a severe depressive episode. I also still have the tendency to be a little bit depressed, a little bit anxious, things like that, but at this point it's manageable and I'm able to work, study, do all the normal things.
JENNY BROCKIE: And how did you get there?
ELLA: It's really hard to say. Just time and support really. I couldn't say any one thing led to that, just everything all together I'd say.
JENNY BROCKIE: Natalie, what about you?
NATALIE DEETH: Well, things certainly look a lot brighter for myself at the moment and that's just as I've said with Josh and my family have taught me just to be positive and look forward, don't look backwards, I've got nothing to gain from looking backwards.
JENNY BROCKIE: Can you see a time when you'll be off ECT?
NATALIE DEETH: I certainly can, I have been in the past and I believe I will be in the future.
JENNY BROCKIE: What about you Michael?
MICHAEL: I'd love that to be the case as well but at the moment I'm having a positive response to ECT. Whether it's placebo or explainable or otherwise, it's had a real effect on my life.
JENNY BROCKIE: Well thank you so much for sharing your stories tonight. I can't tell you how much we appreciate it. I know it hasn't been easy but I know all really wanted to do it so thank you very much for joining us and thank you everyone else too in the broader audience for sharing your stories. And John Read, thank you too for joining us tonight.
PROFESSOR JOHN READ: You're very welcome.
JENNY BROCKIE: Okay, and you can keep talking on-line, do go to Twitter, Insight's Facebook page or our website.