I think it’s really, really, really important to, one, be empathetic in the way you deliver, how you explain about something like ECT, but give it, give all, every single bit of information about ECT. It’s the only way somebody can decide whether it could be for them or not. And I think you have to give them the pros and the cons. And I personally think it’s quite useful to have some examples of, anonymously, of peoples experiences, because then they’re actually, the patient, if, if, depending on the, what level they’re at, because if you’ve got a completely incapacitated patient who’s not sleeping or drinking you’re not going to be able to, it’s going to be difficult to talk to them as a professional anyway, but if your patient has capacity to understand, to give the medical explanation of ECT and some patient examples. And then I think the person can then weigh up the pros and cons for themselves within the context of their situation. And explain kind of how many sessions, give times and dates of how often they might be, where they’ll be having them, can family be involved on the day that the treatments, you know, they’re going for their treatment? All different kind of options. And answer all that. Being available to answer questions after that meeting, because the patient will also be sitting thinking, Oh wait, I’ve got something else to ask. How available are you to be around for that person over the next maybe week or two it takes to, for them to make a decision?

And I think it was a, it was interesting that as young people there was an element that all of us struggled to communicate. And maybe young people who are e-, find it easier to communicate with their peers or have somebody to talk to may fare better than those of us who really, I don’t know, it’s not, it’s not as if we weren’t intelligent enough or couldn’t communicate, I just think we weren’t able to convey how we felt in a way that was going to be understood. Which is why, I think, they had things like art therapy, because you were able to draw, draw pictures relating to how you felt. We had drama therapy, where you were playing out situations that you found difficult. That was the better way of trying to explain how we were feeling. But, yes, that communication barrier, I think, results in you just bottling everything up. And I think it becomes too much when you bottle things up if you’ve not been able to explain it to other people.

Can you remember which antidepressant it was?

Yes, it was imipramine, I went on to imipramine. The lethargy got, the sedation got a bit too much over a period of time and I went on to the same group but without the sedation, a medication called lofepramine, which I think is the lower one of the group of tricyclics that doesn’t have sedation in it. And I was on that for a good couple of years before that kind of stopped working. I think antidepressants with me occasionally did have a habit of just stopping working, it would be a case of trying another one. But, no, it was, yes, and I still had a long way to go, there was still a long way to go and I still at times felt suicidal and, you know, self-harm and all that kind of stuff. So it was still quite difficult but I think it still helped me to, I think, work better within, certainly in psychotherapy sessions and things like that.

And gradually things start to, started to improve on the new medication, but the downside to that was a huge amount of weight gain. But I think, in kind of thinking about weight gain versus possible brain damage, it was like, Well, that’s okay. And after that, that was kind of 98 to 2000, I had a few kind of wobbly patches with admissions to hospital and a bit of medication changes. But then I started to, I think after my last admission in 2000 I felt I never really wanted to go back to that hospital again. I just hated the environment. I didn’t think it was supportive and I didn’t think it was for me. So I knew that I had to be part of making changes if I was going to get better. And I got a support worker from a mental health charity and I started exercising and running. I started to do charity runs, ended up training for a half-marathon and did a couple of 10Ks, 5Ks, and started Open Uni course. And all things, that was kind of over a period of four or five years that that kind of process, that whole process took. And actually the, although it feels as though that’s a long time, I think it, in terms of how long I’d been unwell I think it had to take that long to actually reverse everything that I’d kind of been through. And I felt so much better. And then in 20-, about 2006 I thought about starting some sessional relief work as a support worker. So I did, I worked as a support worker, support assistant, and I did mental health advocacy training, and continued with Open Uni. And just all these things combined with the support of the charity where I’d had a support worker, just things start to, started to improve.

I think what they didn’t do is they didn’t really explain anything about it. It was, it was just, they just said, Right, theres a decision. You can have ECT or you can change your medication. But there was no discussion about what ECT was, what it would involve, how many sessions I would have, you know, side effects, all that kind of thing. I think, because I wasn’t given any information, I d-, how on earth was I supposed to decide with not being given any information? It was just like, Well, come back to us when you’ve decided what to do. But, you know.

And what did you think ECT was? I mean you described sort of having seen it on TV and that sort of thing.

Well, that, yes, that’s exactly it. That’s, that’s, I thought it, well, I really thought, you see people, I mean they talk about obviously being, you know, being given an anaesthetic to be given ECT, and I’m thinking, Well, why do people jump about when they’re given ECT? You know, I don’t know. What’s that about? And then coming round, obviously other patients, you see them when they’re coming round. They didn’t know where they were, they couldn’t walk properly, having a really severe headache, memory loss, quite significant for some people afterwards. And somebody did say that they felt that they’d been permanently damaged by it. And all of that kind of information, it was like, Well, actually I don’t think I want to, really want to go through with this.

You were saying somebody said, was that from literature or somebody you knew?

It was in the, in the wards, yes, it was other people in the wards kind of saying, saying things like that. And I think it probably would have been more helpful to have had some discussion with the medical team exactly to clarify all the different kind of questions that I had about it and my husband had about it. And to also cla-, sort of explain to them what I’d heard from other patients and actually, Is, are these experiences real experiences and is it something to watch out for? What, what’s the percentage of incidence of that happening? that kind of thing. But there was no kind of information that came forward about that.

I think what they didn’t do is they didn’t really explain anything about it. It was, it was just, they just said, Right, theres a decision. You can have ECT or you can change your medication. But there was no discussion about what ECT was, what it would involve, how many sessions I would have, you know, side effects, all that kind of thing. I think, because I wasn’t given any information, I d-, how on earth was I supposed to decide with not being given any information? It was just like, Well, come back to us when you’ve decided what to do. But, you know.

And what did you think ECT was? I mean you described sort of having seen it on TV and that sort of thing.

Well, that, yes, that’s exactly it. That’s, that’s, I thought it, well, I really thought, you see people, I mean they talk about obviously being, you know, being given an anaesthetic to be given ECT, and I’m thinking, Well, why do people jump about when they’re given ECT? You know, I don’t know. What’s that about? And then coming round, obviously other patients, you see them when they’re coming round. They didn’t know where they were, they couldn’t walk properly, having a really severe headache, memory loss, quite significant for some people afterwards. And somebody did say that they felt that they’d been permanently damaged by it. And all of that kind of information, it was like, Well, actually I don’t think I want to, really want to go through with this.

You were saying somebody said, was that from literature or somebody you knew?

It was in the, in the wards, yes, it was other people in the wards kind of saying, saying things like that. And I think it probably would have been more helpful to have had some discussion with the medical team exactly to clarify all the different kind of questions that I had about it and my husband had about it. And to also cla-, sort of ex-, explain to them what I’d heard from other patients and actually, Is, are these experiences real experiences and, and is it something to watch out for? What h-, what’s the percentage of incidence of that happening? that kind of thing. But there was, there was no kind of information that came forward about that.

And I think, I think I just, I just didn’t know enough about it. There was too much kind of, you know, What does it do to the brain? They told me the understanding of how it works, but what does it do? And I think if you’ve got that gap where you don’t know everything about it, I don’t know if you can really, it’s an individual decision, I think.

So I went back to the hospital and it was then, that was the first time ECT was mentioned. And there were kind of, there were some options put in place. It was ECT and maybe not have a, a long stay in the hospital, or stay in the hospital a bit longer with a medication change. But it was a very difficult time and it wasn’t, the, I found the staff quite difficult and the environment was, I felt, quite unsupportive. So when my husband came to visit me, hed been mentioned ECT and he said, Well, are you really sure about, you know, ECT? He said, I’m going to go home and look it up on the Internet. So he went and looked online, sort of the Royal College of Psychiatrists’ website and the NHS website, and printed some information off on ECT and came back during visiting time the next day and we had a look at the information. And of course it’s probably hugely updated now, but we had real concerns about ECT, about kind of damage, would there be permanent memory problems? Damage to the brain, what would it actually feel like going through that whole experience? And would, you know, he was, very, my husband was very against it. I was of mixed feelings, although again I was very fearful of brain damage as well. And it’s just something you think about when you’ve seen kind of the things on the tele about ECT and actually seeing people have ECT. And also speaking to other patients, I think. While I’d witnessed some patients having had good experiences, I’d also witnessed some patients, you, you know, having been badly affected by ECT. And I think in the end I felt it was a risk I didn’t want to take. And I preferred to have the option of changing the medication to quite a new one that was out, and went down that route instead.

Well, the story started when I was a teenager. I struggled in school a great deal. I’d been through a lot of problems with family, parental divorce and issues with step-parents and step kind of siblings and, and issues like that. And it was around the age of 14 when I really started to struggle in school and it was very much put down to, I remember one of my school reports said, You’re in the midst of the doldrums. Which was an interesting concept because obviously I think young people now, it’s more understood that, for them experiencing depression. So I thought a change of school would be helpful. I was at school down south in England and I came up to Scotland to do my Highers and was still experiencing significant problems with lethargy, apathy, very, poor concentration, inability to study, any, kind of retain any information, memory, problems with sleep, anxiety. And I had taken an overdose when I was 16 when I was, a weekend away from the school, I was at boarding school, and I went into hospital to have treatment. And my family were really quite appalled. Theres no, theres no kind of, theres nothing in my family where ever, anybody’s ever had depression or anxiety. Maybe some stress, but they wouldn’t really recognise it as a mental health issue. So one of the duty doctors there, I went back to school to try and, you know, finish my higher study, and one of the doctors saw me every, sort of every six to eight weeks and he felt that my family would be the ones that should support me through any problems. But I was, I was, I was unable to speak to my family. One, because they didn’t understand, but two, just too close to the whole kind of issues and situation that, that related to how I was feeling.

So I had really felt quite isolated.

And before I was due to take my Highers I’d taken another overdose and ended up in the, our local psychiatric hospital on an adult ward for about six weeks before one of the staff came from a young peoples unit that was on the same site as the hospital and came to do an assessment and said, Would you like to come and stay at the young peoples unit and we can look in more depth at what’s going on? At that time there was no mention of, still no kind of mention of the na-, the term depression. It was, some of the doctors had mentioned, you know, adolescent crisis or, or just something that would maybe peter out and would sort itself out. But I went to the young peoples unit. And they have a lot of questionnaires that you fill in that they’re able to ascertain kind of really how you, you’re feeling, because communication can still be difficult when you’re younger. And then they officially said that, that I did have depression and maybe had done so for a couple of years. So at that point there was some kind of relief there, but also I didn’t really understand a lot about it and I didn’t really understand how the treatment or support that would be put in place would help.

And I think for him, finding out as much information as well, I think that was important. Not that every, well, you kind of use the term quite loosely, carers, but not that every carer’s going to, going to, you know, have to do the same with different people, you know, because I’m obviously going to be different to somebody else with depression. But he, he read what he could and, and got support where it was offered and kind of used that in terms of supporting me. But, yes, I think I, at times I did drive him a bit mad [laugh].

You were saying you sort of use the term carer quite loosely.

Yes.

Is that how would you sort of define that?

Well, I don’t know. I mean it, it’s not quite the same as caring for somebody physically, I mean they’re not caring to the point where somebody is having to get you physically out of bed and dress you and, it’s not that type of caring. The caring is kind of more emotionally caring and caring for your safety, caring to make sure you’re okay. I mean he would ma-, I mean he makes, he still does actually, it’s a pattern that’s continued to this day, he makes the, he makes the tea every night. But hes done that from the very beginning and that was part of his caring role then, making me dinner and kind of to help with the housework, sharing the chores. I was, because I was quite apathetic a lot of the time, quite tired, very often didn’t get up till lunchtime, you know, the he had a part to play as a carer. But hes my husband. So I kind of, I don’t know, it’s a, it’s, I don’t know if theres any other word for it, but he was, he was supportive.