Tania
Age at interview: 41
Brief Outline: Tania first became unwell at university and years later was diagnosed with bipolar affective disorder. She has had various ECT treatments over the years with varied results, but now considers ECT - if performed correctly - to be a life saving.
Background: Tania is a lecturer, and lives with her husband and daughter. She describes her ethnic background as White British.
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Tania had a great first year at university; but, in retrospect, she had ‘a bit too much energy’ and wasn’t sleeping much. The following summer one of her best friends was killed in a car crash and she reacted in a way that she felt was not in proportion to the event. When she returned to university, she felt completely detached from everything around her. She felt like ‘everything was spinning around’. However, outwardly she was able to behave quite normally. Eventually she was admitted to hospital when the symptoms worsened to the point where she felt uncontrollably suicidal. Looking back, she now knows that she had bipolar disorder, but she says it took years to diagnose.
Tania had never heard of ECT before when a doctor she was seeing privately first suggested it. She describes the consultant as angry because it looked bad on him that she had tried to commit suicide, and he threatened her to consent to ECT or she would be sectioned. Tania says she felt compelled to sign the consent form. She only had one ECT treatment and then it was stopped, although she doesn’t know why. She then went into hospital under the care of another psychiatrist after it was recommended by a family friend. She was given more information and it was made clear she had a choice in terms of her treatment. This time, she had 7-8 ECT sessions and felt that ‘the whole thing lifted’ and she noticed a big improvement. She felt slightly confused after each treatment, but this effect wasn’t long lasting.
Afterwards this initial improvement, Tania says it took her some time to make a full recovery. She had cognitive behavioural therapy (CBT), which helped. She completed her final year at university and felt supported by her department to continue her studies. After university, she completed a Masters, a Ph.D. and subsequently got a job as a lecturer. She felt that ECT didn’t have any lasting cognitive effect and that it helped her get over acute symptoms. Tania has learnt to try to contain her energy levels and does meditation to help slow her thoughts.
Tania got married and had a daughter, but then two years later, she had a miscarriage. She realised in retrospect that she had probably been quite high for two years. After her miscarriage she became unwell very quickly and became suicidal. She was admitted to a private hospital where she was prescribed tranquillizers and antipsychotics. She thinks this medication affected her seizure threshold and made the ECT she received during this admission ineffective (although she still had over 20 treatments). Tania now thinks that it is advisable that ECT should be performed inside the NHS with the accompanying rigorous safe guards. Tania blames her bad experiences of the ECT on the private hospital where she received the treatment, rather than on the treatment itself.
Tania had another episode and “got through it”, half sedated on drugs. She came off the drugs and became manic and had “mixed episodes” where she felt both suicidal and manic. Around this time she believed that it was inevitable she was going to die, because what she was experiencing was so intense.
Eventually she tried ECT again and speaks very highly of the hospital that administered it. Tania says the staff treated her with such kindness and dignity that it changed her whole perspective on ECT. On the six or seventh treatment the whole thing lifted again. Since that episode, when she had flu, her mental health went downhill but each time ECT would work “like magic”. She researched ‘maintenance’ ECT and received this for just over a year, with the frequencies of the treatments gradually decreasing.
Now she mainly lives symptom free and has not had any treatment for a year, although she has experienced minimal bad reactions to physical illnesses and antibiotics. Although having anaesthetic once every four or five weeks wasn't pleasant, she now feels like the person she was before. Following the maintenance ECT, she feels like she has returned, can be a good mum to her daughter and has some stability. She still has to work hard at maintaining her health but feels that her cognitive abilities are unaffected, as shown by her successful return to academic work.
Now Tania has an advance treatment order in place to enable her to have ECT. Tania says that the success rates of ECT are impressive and although it was badly used in the past, if people follow the guidelines, then it could help people.
Tania had never heard of ECT before when a doctor she was seeing privately first suggested it. She describes the consultant as angry because it looked bad on him that she had tried to commit suicide, and he threatened her to consent to ECT or she would be sectioned. Tania says she felt compelled to sign the consent form. She only had one ECT treatment and then it was stopped, although she doesn’t know why. She then went into hospital under the care of another psychiatrist after it was recommended by a family friend. She was given more information and it was made clear she had a choice in terms of her treatment. This time, she had 7-8 ECT sessions and felt that ‘the whole thing lifted’ and she noticed a big improvement. She felt slightly confused after each treatment, but this effect wasn’t long lasting.
Afterwards this initial improvement, Tania says it took her some time to make a full recovery. She had cognitive behavioural therapy (CBT), which helped. She completed her final year at university and felt supported by her department to continue her studies. After university, she completed a Masters, a Ph.D. and subsequently got a job as a lecturer. She felt that ECT didn’t have any lasting cognitive effect and that it helped her get over acute symptoms. Tania has learnt to try to contain her energy levels and does meditation to help slow her thoughts.
Tania got married and had a daughter, but then two years later, she had a miscarriage. She realised in retrospect that she had probably been quite high for two years. After her miscarriage she became unwell very quickly and became suicidal. She was admitted to a private hospital where she was prescribed tranquillizers and antipsychotics. She thinks this medication affected her seizure threshold and made the ECT she received during this admission ineffective (although she still had over 20 treatments). Tania now thinks that it is advisable that ECT should be performed inside the NHS with the accompanying rigorous safe guards. Tania blames her bad experiences of the ECT on the private hospital where she received the treatment, rather than on the treatment itself.
Tania had another episode and “got through it”, half sedated on drugs. She came off the drugs and became manic and had “mixed episodes” where she felt both suicidal and manic. Around this time she believed that it was inevitable she was going to die, because what she was experiencing was so intense.
Eventually she tried ECT again and speaks very highly of the hospital that administered it. Tania says the staff treated her with such kindness and dignity that it changed her whole perspective on ECT. On the six or seventh treatment the whole thing lifted again. Since that episode, when she had flu, her mental health went downhill but each time ECT would work “like magic”. She researched ‘maintenance’ ECT and received this for just over a year, with the frequencies of the treatments gradually decreasing.
Now she mainly lives symptom free and has not had any treatment for a year, although she has experienced minimal bad reactions to physical illnesses and antibiotics. Although having anaesthetic once every four or five weeks wasn't pleasant, she now feels like the person she was before. Following the maintenance ECT, she feels like she has returned, can be a good mum to her daughter and has some stability. She still has to work hard at maintaining her health but feels that her cognitive abilities are unaffected, as shown by her successful return to academic work.
Now Tania has an advance treatment order in place to enable her to have ECT. Tania says that the success rates of ECT are impressive and although it was badly used in the past, if people follow the guidelines, then it could help people.
When a close friend died suddenly Tania went into shock. She couldn’t sleep and everything seemed unreal.
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When a close friend died suddenly Tania went into shock. She couldn’t sleep and everything seemed unreal.
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I just knew that I didn’t feel right and I went back to university. It was the beginning of the second term and very soon it became evident to me that I wasn’t myself, everything seemed quite, everything seemed quite unreal, and I. I mean I lost my appetite and I couldn’t sleep. I was waking up very, you know, if I went to sleep I would wake up very early in the morning and it, everything, my head was, felt like it was rushing inside. I couldn’t stop thinking, not about anything in particular, just thinking and I couldn’t sleep and I couldn’t, and everything around me seemed progressively more unreal. I’d be in a room and it would just seem like everything was spinning around, but my behaviour was normal, like it didn’t manifest itself in my outward behaviour, but I knew I didn’t feel right and I started to feel really bad, and I just felt really, I didn’t really know what it was. It didn’t, I can’t really say that I even felt depressed. I didn’t necessarily feel low in the way that you would think. I just felt really strange and my head was spinning and it felt awful. It felt, it felt like, you know, I was in a different world from everyone else and I felt a huge sense of panic and isolation and just detachment, and I couldn’t feel anything anymore. I didn’t feel sad or, I just didn’t feel anything. Just felt scared, about what was going on and I, eventually I went to the doctor.
Although Tania was initially diagnosed with depression she was later found to have ‘bipolar affective disorder’. For Tania, her diagnosis helped her understand why she could feel depression and joy at the same time.
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Although Tania was initially diagnosed with depression she was later found to have ‘bipolar affective disorder’. For Tania, her diagnosis helped her understand why she could feel depression and joy at the same time.
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But it just got worse, everything got worse and I pretty soon, I started to think, it just came into my head, the idea of killing myself and then it wouldn’t go, and it just, I couldn’t stop thinking about it all the time. It just dominated every moment of my thinking
And yes, in hospital they couldn’t really work out what was going on because I didn’t show any of it on the surface at all. And, and there was nothing wrong in my life. I had a really lovely family, you know, I was, I was, I had everything really. I had a great supportive family. I had a lovely boyfriend. You know, done well academically, was at the university I wanted to go to, was doing really well in my studies, had loads of friends, I just had everything really going for me. And I’d always had a really happy go lucky personality as well. I just was, and even when I was depressed, I smiled. They called it ‘smiling depression’.
I now know that I have bipolar disorder and actually it was a mixed state when you experience depression and elation at the same time, but at the time, no one, it’s one of the things which is never, it takes years before people diagnose that because it’s something that really confuses people, because you feel full of energy and you maybe seem on the surface quite happy and almost elated but you’re suicidally depressed at the same time.
Being high meant Tania had “vast amounts of energy”, but at other times she was also “mentally suicidal”. She fought the voices in her head, but believed she was going to kill herself and eventually had ECT.
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Being high meant Tania had “vast amounts of energy”, but at other times she was also “mentally suicidal”. She fought the voices in her head, but believed she was going to kill herself and eventually had ECT.
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For Tania said the idea of suicide “just came into my head” and “dominated every moment of my thinking”.
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For Tania said the idea of suicide “just came into my head” and “dominated every moment of my thinking”.
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And I knew that, I didn’t even really feel like I had control over myself. And I don’t even think I knew why exactly I wanted to do it. I just felt that everything was so unreal.
The next one, I got really, I’d come off the drugs by then because the side effects, they weren’t helping, the side effects were, it was unliveable and I became, I became very I became very manic. It was once again, it was one of these mixed episodes but you know, manic in a really, really bad way. I was incredibly high out in terms of you know, being up all night and having vast amounts of energy and being mental productive but I was also at the same time mentally suicidal, and I was desperately trying to stop myself killing myself. I mean everything in my head was telling me to do it, but I knew because of the effect it would have on my family that I, you know, I was fighting so hard as I had always done against these kind of voices in my head that were telling me to do it. But I also knew it was just a matter of time because it was so intense, I really believed that I was going to die and I believed that I was going kill myself and I believed it was inevitable and that there was nothing that could stop this, you know, this kind of power from subsiding because up to them we hadn’t to the we hadn’t found anything and I did in the end, I made another attempt and once again, I was, fortunately unsuccessful and I tried throwing myself off a bridge, but I was caught again. So, and you know, I went back to hospital and we didn’t know what to do really, we were all stuck and in the end my consultant said to me, “Look, you know, will you try ECT again because nothing else is working?”
Tania felt that, as a family, they were no longer lurching from crisis to crisis. She worked hard at maintaining her health.
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Tania felt that, as a family, they were no longer lurching from crisis to crisis. She worked hard at maintaining her health.
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Until she began maintenance ECT Tania describes being very depleted and having a low immune system because of the drugs and lack of sleep. An illness like flu could trigger another episode of mental illness.
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Until she began maintenance ECT Tania describes being very depleted and having a low immune system because of the drugs and lack of sleep. An illness like flu could trigger another episode of mental illness.
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So for a couple of, a couple of winters, I had these episodes following flu or a viral infection and I would end up back in hospital. I’d have the ECT treatment and it, once again it worked like magic, each time. It was great. But we couldn’t find a way of stopping myself from relapsing and it was getting progressively more dangerous, because, you know, there’s only so many times you have a failed suicide attempt before one, you know, you work out what’s going, and one came very, very close. Very close.
When Tania was offered ECT by a private consultant who she described as “angry,” she felt terrified. But when she later had ECT under the care of a family friend, who took time to explain ECT, she had a positive experience.
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When Tania was offered ECT by a private consultant who she described as “angry,” she felt terrified. But when she later had ECT under the care of a family friend, who took time to explain ECT, she had a positive experience.
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And I don’t really remember what happened. I mean I just had one treatment and then for some reason he stopped. He just, I don’t know what happened. I was well enough at some point just to leave the hospital, but I wasn’t well, I wasn’t better. And I was still really, really ill and then we met someone else. My parents went to the funeral of a family friend. There was a friend there a friend there who was a psychiatrist and they told him about me and he said, “You know, it really sounds like she needs ECT.” You know, “It really sounds like she’s got severe clinical depression and the drugs are not working. She needs to come off the drugs and have ECT.”
And I ended up going into hospital actually under his care and he was a very, you know, he was a very nice man and he made it, he didn’t make it sound frightening at all. He just, you know, explained the whole process. Explained that I have a choice in the matter, that you know, that he felt that it would work and it was definitely worth giving it a shot. And I did.
Tania said having someone with her before the treatment, being in nice surroundings, and having the staff introduce themselves really helps make ECT a less frightening procedure.
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Tania said having someone with her before the treatment, being in nice surroundings, and having the staff introduce themselves really helps make ECT a less frightening procedure.
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Well I mean I think you know, a lot of it is down, so much of it is down to the people. So much of it is down to the people, but also things like, you know, having, I, you know, my husband he’s, I mean not so much when I’ve been an inpatient but certainly with any of the outpatient treatments, he comes with me and he’s like there, I mean it really helps to have… and when he hasn’t been able to come, my Dad has come, or sometimes you know, my sister-in-law has come with me or even a friend, just to have someone, you know, to have someone kind of there and they sit with you in the waiting room and stuff and you kind of you know, you chat and they, they usually have, I mean they’ve been refurbishing the block actually, so we’ve kind of been doing it almost in a trolley in the middle of the corridor but you know, I’m kind of used to it, so it didn’t really bother me, but generally they try and, they’ve been doing it the new ECT block. They try and have nice surroundings, which actually it does, it does help, because, you know, as I say I’m kind of an old hand at it, so I don’t really feel nervous before hand, but it is nice to kind of come into a nice room, and it’s just, I think the most important thing is that you know, they, they make it really clear what’s going to happen, they explain every step of the way, they always, when you go in, everybody introduces themselves, and says, “You know, I’m so and so, this is what I’m going to be doing.”
So you don’t look round the room and think why is that person standing there, you know, they ask any questions, any worries, you know, any have you had all the checks? And everything’s very, you know, it’s all, it’s all very relaxed and I mean the anaesthetist is lovely, and they always sort of say, oh you know, “Think about something nice and it’s going to kind of …” And it’s just sort of those, it’s just being really sort of human about it, explaining the whole process, you know, and especially if its someone’s kind of first time, or they’re not used to it, but the fact that they kind of, they’ll go out of their way to almost to over explain and say, “Are you sure, you know, are there any questions? And you know, this is what I’m doing, and this is what I’m doing.” And I think, but I think all of those things help it make it, help make it a much less, you know, frightening procedure. You know, and when you come round, it’s very nice, you know, when you come round someone always brings you a cup of tea and because you haven’t eaten there’ll be a biscuit sort of, and they you know, those sort of touches, actually make a difference.
Tania was impressed by the ‘kindness and humanity’ of the staff and she felt better after 6 or 7 treatments.
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Tania was impressed by the ‘kindness and humanity’ of the staff and she felt better after 6 or 7 treatments.
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Tania had been very ill and in and out of hospital and it took a while to come to terms with her depression. She describes the effect of the ECT as ‘quite incredible’: She ‘just woke up and the whole thing had lifted’.
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Tania had been very ill and in and out of hospital and it took a while to come to terms with her depression. She describes the effect of the ECT as ‘quite incredible’: She ‘just woke up and the whole thing had lifted’.
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And after that, I mean, it took some time, it took some time to make a full recovery, because, you know, after the experiences of the previous year and I was, I was really in pieces and I, you know, took a while, over the course of the next few months I needed to get my sleep sorted out and I just needed to come to terms with the anxiety that whole, the whole episode had produced for me. And I had some cognitive behaviour which really helped me, like, get sort of relaxed and face kind of getting back to life again and just kind of get over what happened. And I also, it helped, I managed to come off the sleeping pills and get back to sleeping again, and you know, that just took a couple of months because I wasn’t, I wouldn’t say I was really ill then, I just, it was more like the after effects of just having the sort of the trauma of the whole, the whole year, and then following that I went back to university the next year and I went back and did my final year at university and it was, you know, it was tough going back, a lot of my friends had left by then and I was pretty shaken about what had happened, but my department were lovely and really supportive and I went back to university and I, and it went really well and I ended up, yeah, I ended up getting a First, which is what I’d really hoped for all along and staying in academia.
Tania thought it was a shame that the public had such a negative image of ECT, as it has a high success rate, rapid results and reasonably few side effects.
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Tania thought it was a shame that the public had such a negative image of ECT, as it has a high success rate, rapid results and reasonably few side effects.
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Once they had seen the effect of ECT, Tania said her family and friends were very supportive of her having it, and even became “pro” ECT. However, she doesn’t talk about it openly.
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Once they had seen the effect of ECT, Tania said her family and friends were very supportive of her having it, and even became “pro” ECT. However, she doesn’t talk about it openly.
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My friends, my close friends, likewise I think, you know, they can see the difference that it makes and even if they’d never heard of ECT or even if they had heard of ECT and had you know, kind of strange ideas about it, having seen me going through it and the difference that it makes to me, they now, you know, they would go and recommend it to anyone that they heard was in a, and I think that’s generally. Everyone who knows me, if they hear of someone else who was in a similar situation, the first thing they would do would be say, “You know, consider ECT. It’s incredible.”
Other people? I mean I find it, I don’t know, I mean, I don’t really, although I’m doing this and as I say I’ve done the other things for MIND about kind of pro ECT sort of interview or whatever, but I don’t really tell people a lot. You know, I don’t, I’m not, I don’t hide it. If someone asks me directly but I don’t talk about it a lot. Generally I just don’t talk about the whole thing, but I think that people find it so hard to understand, you know, to understand mental illness in itself, that actually, for me, it’s easier not to talk to, unless it’s a very close friend who sort of, I just don’t talk about it, because people’s misconceptions and lack of understand is, you know, it just that in itself is, yes, I can’t sort of, I just find it hard to deal with really.
Tania found antidepressants were acting as a stimulant and contributing to her inability to sleep. When she tried to come off them, it triggered her mental illness.
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Tania found antidepressants were acting as a stimulant and contributing to her inability to sleep. When she tried to come off them, it triggered her mental illness.
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When Tania used ECT to help take her off medication it was “absolutely incredible”. Despite withdrawal symptoms from coming off the drug, she found she didn’t relapse.
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When Tania used ECT to help take her off medication it was “absolutely incredible”. Despite withdrawal symptoms from coming off the drug, she found she didn’t relapse.
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I did a lot of research into it. It’s not a treatment when is widely used and so I, yeah, I did a lot of research. I contacted people in America. I contacted people over the UK to try and find people who were experts in the field and I was very lucky because I got put in touch with the, sort of, the leading UK expert into ECT and he, yeah, he’s an amazing man, I mean, he lives up in Scotland and he gave me, he called me, and we, you know, he gave me some advice by email and stuff and then he actually called and sort of took a very brief case history and I told him what was going on, and he suggested how to do the maintenance ECT in terms of how many treatments and how… And what he said to me was that, “You need to do one a week for two weeks, then one every fortnight for two fortnights, one every three weeks for two treatments and then go to one every four or five weeks. One every month, but the key was, that he said to me, because I’d had such a rough few years and I was so sort of vulnerable in my system I needed to continue the treatment for quite a while to build up the strength.”
But he also that because I’d had a long period in my life when I’d been symptom free, it, he didn’t necessarily think I would need to continue it for sort four or five years, you know, or continue it kind of forever. But you know, it’s possible, if I could get well enough, that I could have another period of remission. A long period of remission again and that’s a possibility, although he couldn’t guarantee it, but he said, you know, looking at my hospital it might be possible.
So, at that stage we thought, you know, this is the right thing to do, and I, you know, discussed it with my consultant and he thought it was a good idea. So we started it and I did it, I started it in February of 2011 and I, and it was, it was an amazing success. It was absolutely incredible.
Yeah, the first couple of months were really hard going, mainly I think because of the withdrawal effects from the other drug, but all of a sudden, once that was out my system, it started to get, it became like a virtuous circle, rather than a vicious circle. My having the drugs out of my system, I started to be able to, be able to sleep. I even came off the sleeping medication. After a few months I was able to sleep naturally for the first time in four or five years. You know, my appetite returned, my physical strength returned, and that contributed so much to my wellbeing. I went down to having the treatments every sort of four or five weeks, which I did for kind of 12 month period and really I just got, I just got better.
Tania was in a private hospital when a doctor first recommended she should have ECT twenty years ago. Although she was a voluntary patient she signed because she thought she would be sectioned if she didn’t agree.
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Tania was in a private hospital when a doctor first recommended she should have ECT twenty years ago. Although she was a voluntary patient she signed because she thought she would be sectioned if she didn’t agree.
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And he was like, “you’re going to have it, you know, if you don’t sign the form.” I remember him holding out the form, and saying you know, “This is the form…” And I’m like, “But I don’t want to have the treatment. Why would I sign the form?” And he was like, “Well, you know, what you’re going to sign it, or you will have it signed for you, and if you have it signed for you, you will be sectioned, and if you’re sectioned that will be it. You know, you’ll never be able to… You know, it will go on your passport, you’re never going to be able to go and visit your brother in America anymore. You won’t be able to…” You know, these were kind of things and so it just, [laughs] I was really scared about the whole thing.
Tania now has an “advance statement”. She feels reassured that ECT can be carried out involuntarily when she is very unwell.
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Tania now has an “advance statement”. She feels reassured that ECT can be carried out involuntarily when she is very unwell.
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I’ve actually kind of, I’ve almost sort of pretty much authorised that with an advanced statement, you know, which actually kind of came into play last time, because it did get to the point when I was in hospital when I was so ill that I suddenly became quite paranoid and I didn’t want to have the treatment and with my ability to act like there’s nothing going on, I probably, you know, I would have been able to convince a Mental Health Tribunal that it wasn’t necessary for me to have the treatment. But because I’d signed this piece of paper, you know, I knew actually that there was no choice. I mean I kind of asked my doctor and he said, “Yes, you know, what I will show them the piece of paper.” So, and it worked, and in the end I said, “Yes, I’ll have it.” And I agreed, because I knew there was no choice. I knew if I didn’t agree, I was going to end up having it any way. And its, you know, that is better to kind of walk into the room willingly rather than be dragged in, but I do know that in my future, I may well get ill again at some point, and if I do, you know, I may well need it, need the treatment and I might decide that I don’t want the treatment, that it’s not the right thing and you know, it may happen that I do have literally, as happened to me before, be kind of you know, held down and it sort of, until I’m under the anaesthetic and I actually accept that.
And I’m pleased that, bizarrely people, I don’t think anyone who has never been in this position could understand it, but I’m pleased for my own sake and I’m mainly pleased for the sake of my family that the law has those powers to do that. I’m pleased that there is an element in the Mental Health Act that allows ECT to be carried out on people involuntarily, because I think actually for me, my life probably depends on that law being there, and I think if they eradicated that law, it would actually be a breach of my human rights, rather than the law itself being a breach, you know, if the law was eradicated.
After Tania had first been seriously unwell at university, having cognitive behavioural therapy helped her recover and stop taking sleeping tablets.
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After Tania had first been seriously unwell at university, having cognitive behavioural therapy helped her recover and stop taking sleeping tablets.
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Tania thinks that ECT has huge success rates and shouldn’t be written off because of the bad press. Although it was used in the wrong way in the past, she wouldn’t be alive today without ECT.
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Tania thinks that ECT has huge success rates and shouldn’t be written off because of the bad press. Although it was used in the wrong way in the past, she wouldn’t be alive today without ECT.
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Tania says, one thing that can make a frightening experience less frightening is if you are spoken to as a human being. For her this means seeing the patient as a regular person who is having strange experiences.
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Tania says, one thing that can make a frightening experience less frightening is if you are spoken to as a human being. For her this means seeing the patient as a regular person who is having strange experiences.
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I mean you know, not treating them as if they’re stupid and they’re not going to understand what’s going on, and equally, you know, not treating them as if they’re, you know, just to treat them as if they’re a regular person and even if the experiences which they’re having might be really strange experiences, just, they’re just a person whose having those strange experiences rather than them, you know, being defined by what’s going on in their head. And anything like that that you bring across to someone who’s going in for ECT or otherwise, you know, is a valuable, a valuable thing.