EPISODE 9: COLLEEN BELL AND STEPHEN O’NEILL

Hello and welcome to “Akathisia Stories,” a podcast co-production of MISSD and Studio C.

MISSD, the Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin, is a unique nonprofit organization dedicated to honoring the memory of Stewart and other victims of akathisia by raising awareness and educating the public about the dangers of akathisia. MISSD aims to ensure that people suffering from akathisia's symptoms are accurately diagnosed so that needless deaths are prevented. The foundation advocates truth in disclosure, honesty in reporting, and legitimate drug trials.

In this episode of “Akathisia Stories,” we hear from Colleen Bell, the loving niece of Stephen O'Neill, who died in 2016 at the age of 48. Stephen was a devoted family man who Colleen describes as having dedicated his life to helping others. A talented singer-songwriter and guitarist, Stephen was well known to pub-goers and nursing home residents in Northern Ireland, playing frequent gigs, several of which were abruptly canceled in the summer of 2016 when he had what was later characterized as a catastrophic reaction to the antidepressant Sertraline, also known as Zoloft. Within 48 hours of starting the prescription, Stephen experienced the scariest night of his life. His heart was racing and his mind was in overdrive with a relentless stream of dark and disturbing thoughts.

[Colleen Bell]: He said that his thoughts were multiplied by a thousand. He could feel almost things crawling on his skin. And he felt like he couldn’t sit down. He couldn’t settle. I believe he went for a walk because he wanted to try and shake the agitated feeling that he had throughout his whole body, and he still didn’t feel any better. So he basically said that he just waited for the sun to come up so that he could go and get help.

We'll have Colleen and Stephen's full story in a moment.

MISSD has designated September 20th as International Akathisia Awareness Day to help increase the public’s knowledge of this medication-induced disorder that causes psychiatric side effects which can include extreme agitation, anxiety, self-harm, and violence. While medication-induced suicides are not the same as deaths of despair suffered by people who may be depressed, MISSD chose September 20th because September is Suicide Prevention Month and a good opportunity to spark conversations about adverse drug effects that can cause uncharacteristic behavior and sudden death. In fact, MISSD created this public awareness day for similar reasons that Colleen Bell created Prescribed Harm Awareness Day, which we’ll hear about in this episode.

Colleen Bell grew up in a small town in Northern Ireland and studied Law at the University of Ulster and went on to train as a lawyer at Queen’s University. She was admitted to the Roll of Solicitors in 2012 and shortly after emigrated to Melbourne, Australia. On the 29th of July, 2016, Colleen’s life changed forever when her Uncle Stephen died by medication-induced suicide. Returning to Ireland upon the devastating news of Stephen’s death, she settled into a career in local government, vowing to use all of her spare time to ensure some form of justice for Stephen was served. Using her legal expertise, Colleen led the family through the coroner’s inquest where it was agreed that Stephen had a catastrophic reaction to Sertraline and suffered akathisia. Following the inquest, Colleen founded Stephen’s Voice, a Facebook page that aims to generate awareness around side effects to prescribed medication and medication-induced suicide; she also launched Prescribed Harm Awareness Day [July 29] in 2020 and co-founded a pressure group, Families Bereaved by Medication-Induced Suicide, uniting families from all around the world to push for change. Her activism has found her a place on Dr. David Healy’s Politics of Care Forum. A busy mother of two wonderful children under three years old and a King Charles Cavalier named Buddy, she is supported by her husband, Patrick, who has been and continues to be an absolute rock to her. It is Colleen’s dream to one day be in a position to dedicate even more of her time and efforts to prescribed harm awareness.

We’re releasing this episode on July 29th, 2021, the fifth anniversary of Stephen O'Neill's death. It’s also Prescribed Harm Awareness Day, which Colleen and Stephen's Voice created in memory of of those who have lost their lives to medication-induced suicide, in support of their families, and of all those suffering around the world with iatrogenic illness. To find out more, please visit facebook.com slash stephenoneillsvoice. That's Stephen with a ph and two Ls in O’Neill.

And now we’ll hear my conversation with Colleen.

AM: To begin, I’d like to have you tell me about yourself, and then about Stephen and the kind of relationship that you had.

CB: I’m Stephen’s niece, Colleen. And Stephen and I had a very close relationship growing up. Stephen wasn’t much older than myself. He was my mother’s brother and we actually grew up in the same house together. I grew up in a house with my three uncles, Stephen, Patrick, and Damien. So I suppose I like to think of it in some way as three men and a little lady. (Laughs.) We were all quite close, but Stephen and I had a very special relationship.

AM: And why? What was that based on?

CB: Well, I suppose love of music. Stephen loved music and he would introduce me to various bands and country singers that he loved.

AM: And he was a musician himself.

CB: Yeah, he was a musician, too, and so he would have sang and he played the guitar. He wrote music himself. He was an Irish country singer. He was just great. He was a great entertainer. People would have traveled from all over to see Stephen sing. He had just a real good persona as well. You know, people just loved Stephen for who he was, just very caring and kind. And then, as I suppose I grew older, he became a good friend, too, like someone I could go to to chat with. And he was just always there for me; you know, throughout my life, Stephen was there. He was much more than an uncle. You know, he really was, I suppose, the cornerstone of our whole family. He kept the wider family together, really. He could listen to people and really comfort them and, I suppose, give them the advice that they needed to hear. He was just great in that way. You know, you could always rely on Stephen.

AM: And you’ve written that he lived a healthy lifestyle, running marathons and cycling quite a bit, never touched a drop of drink in his life, didn’t take drugs, and there were no money worries. So there was nothing to really indicate any trouble on the horizon, and in fact, what happened was he had some trouble sleeping and switching off at night.

CB: Yeah. So that was basically it. He was having trouble sleeping and it was in his medical notes and records, too, that, you know, he alluded to mild anxiety. So when he went to the doctors that day, he actually was with my father and he made no secret that he was going to the doctor’s. My father picked him up afterwards and he got into the car with him and he actually told my father, you know, the doctor has prescribed me antidepressants. Stephen was very open. You know, he would have talked about anything. There was no stigma attached. You know, he said look, I’ve got antidepressants here. You know, he was kind of hemming and hawing about whether he would actually take them. But he, I suppose, trusted the doctor. He felt — you know, he felt OK, so he would go ahead and take the prescription.

AM: So it’s June 16th, 2016. Stephen’s prescribed 50 milligrams of Sertraline for mild anxiety and sleep disturbance. In the early hours of the 18th of June, after taking the tablets for about 48 hours, everything changed.

CB: Yeah. So for Stephen it was almost an immediate reaction. So he began the tablets on the Wednesday the 16th and then on Friday the 18th, late at night, things just got, I suppose you could call it really out of control for Stephen. We found out later that that night he was just in a high state of agitation. He could feel almost things crawling on his skin. He felt like he couldn’t sit down. He couldn’t settle. He said that his thoughts were multiplied by a thousand. His mind was just racing. He tried to snap out of the feeling, you know — I think he knew immediately that it was the drugs, and, you know, to try and bring himself around he ran the shower and it probably would have been around 2:00 a.m., 3:00 a.m. in the morning; he got into a cold shower to try and snap out of it. Then, after that, I believe he went for a walk because he wanted to try and shake the agitated feeling that he had throughout his whole body, so he went for a walk and came back and he still didn’t feel any better. So he basically said that he just waited for the sun to come up so that he could go and get help.

My mother and my auntie went into the house a day or two later and they had seen that the Sacred Heart picture was off the wall, so Stephen had actually taken the picture off and I suppose prayed, prayed for his safety through the night. The next morning he then went to my auntie, who lives next door. And Stephen would always be very smartly kept; like, anyone that knew Stephen, you know, knew he was always well dressed, well presented. He appeared to Jacqueline and he was just completely disheveled. His shirt wasn’t even tucked in. His hair wasn’t fixed. And he just said, Jacqueline, I need to see the doctor; something has happened; these tablets have done something to my head. And unfortunately, it was a Saturday so Jacqueline was like, Stephen, look, the doctors aren’t open today. He said, well, I need to see someone immediately.

So Stephen then went down to the pharmacist who dispensed the medication and straight away Stephen told her also, you know, this medication has done something to my head. So she phoned then an out-of-hours doctor service and over the phone, then, they agreed that obviously there was some kind of reaction and that he was to immediately stop the Sertraline.

AM: But they gave him this other prescription.

CB: Well, yeah. That’s it too. They give him Diazepam and then he came home and later on that night he phoned my mother, then, and he said, “Bernadette, I’m not feeling good.” At this stage, my mother had no idea what — you know, that anything had happened, that there was anything wrong. She thought perhaps he had some kind of a cold or a flu or just was feeling under the weather. So she — I think he was supposed to be singing that night also and he maybe canceled his booking. So she went and lifted him and brought him back to our home — (inaudible). And he didn’t really speak much that night to mummy, and everyone just went to bed. But when mummy woke up the next morning, Stephen was already awake. I don’t think he had really slept. And he basically then told her everything. He said, “Look, Bernadette, I took medication on Thursday and it’s done something to my head. It’s made me feel like I want to” — like, we live beside a lake. He was saying that he was having thoughts of jumping into the lake. He said that everything was just magnified, that he couldn’t sit still; he was having thoughts that he never had before, dark thoughts, as he called them.

AM: And when you said jump in the lake, you mean to end his life.

CB: Yeah. Well, yeah. Yeah, to end his life. You know, it was something that my mother had never had to — something, you know, she has never dealt with before, someone presenting with suicidal thoughts, so she really was shocked. She just hugged him. I think they both cried and she then phoned a crisis team, which is attached to, I suppose, a local psychiatric unit, to seek help, so the crisis team then came out to my mother’s house and Stephen told them the same as he had told my mother and then he voluntarily went into their psychiatric unit that night.

While Stephen was down there, it was noted in his records that he wasn’t clinically depressed. I actually have his medical notes and records here, if you would like me to read out some extracts from that.

AM: Yeah. Whatever you think is relevant. And I was going to say, too, just to clarify: This is all happening that first weekend. We’re talking about the Thursday through the weekend period.

CB: Yes. So it was an immediate reaction.

So these are from Stephen’s medical notes and records. This is from the 19th of June. This is when he voluntarily admitted himself into a psychiatric unit.

“Mood up until Thursday has been good over the last number of months. Never had suicidal thoughts before. Appetite has been great up until started antidepressant, has reduced due to nausea. Kempt, smartly dressed, nil sign of neglect, good eye contact, nil sign of mild depression. Sleep seems to be the main issue and this reaction to Sertraline. Seems to have a fair idea that the Sertraline has affected him, rather than being him acutely depressed. He feels that Sertraline has caused deterioration in his mental health.”

So that was from the first weekend. That was medical notes from the first weekend. You know, it does — it makes very hard reading to read those notes again because it’s all there in black and white. To think that Stephen could still be here today, had a different course of action been taken, is heartbreaking.

AM: Yeah. So they discharged him fairly quickly?

CB: Yeah. They discharged him after I think it was two days. And they discharged him with an actual letter for his doctor. And on the letter it states that Stephen had an adverse reaction to Sertraline.

AM: Yeah. So they’re affirming his suspicion and his well-founded suspicion that this is a drug-induced reaction.

CB: Yeah. Exactly.

So Stephen was discharged from the psychiatric unit with no more medication, but when he went to his doctors then with the letter to state that he had an adverse reaction — and obviously still feeling not himself, obviously very frightened because of what happened at the weekend. You know, Stephen had never experienced anything like that before. You know, it was a terrifying experience. So when he went to the doctor’s, he actually came back then with more medication. Stephen was then prescribed Quetiapine.

This is the thing that we are completely baffled by now because Stephen presented originally on the 16th of June; Stephen would have presented originally as himself. You know, there was no agitation, no restlessness. You know, my father was with him that day. The doctor should have known then that the medication has caused Stephen to become suddenly unrecognizable. You know, it affected him so severely that I don’t understand — none of us understand now why then medication wasn’t just stopped completely. You know, Stephen was fine before the medication. The medication caused issues. You know, why put him back on to any type of medication? Why not just let his body rest, his mind rest, get some sleep?

AM: Especially when it had been so quick because he had only been on the drug for a few days. It wasn’t like he had been on it for a year and needed to taper off of it. He had already stopped taking it and he kind of had a clear path to go drug-free at that point, but then —

CB: Exactly. I think at that point all Stephen would have really needed from a medical professional was to hear that “Stephen, yes, you were completely right; you suffered a side effect and you did; you went through a traumatic experience, and now what you need is to heal from that.” Just that reassurance that it wasn’t Stephen; it wasn’t, you know, all in his head. It wasn’t —

AM: It wasn’t him.

CB: Yeah, exactly. It wasn’t a mental breakdown. It was the medication. You know, so — and he didn’t hear that. You know, what he was — I suppose, then, everyone had limited understanding of what happened to Stephen. I think as well the family missed out on getting educated at that point. I think if we had have understood more about what an adverse reaction was — you know, we had no idea that one in 100 people who start Sertraline may have suicidal thoughts and behaviors. You know, that’s quite a significant number of people. We had no idea that medication that is supposed to help you mentally that we believed, you know, helped a person who was depressed become suddenly happy and not depressed, we didn’t know that it could cause such extreme distress.

So yeah, at that point, then, he was prescribed Quetiapine, which then went on to just really prolong his symptoms. You know, it wasn’t just Sertraline. Yes, Sertraline was the catalyst. It was, I suppose, the beginning of the end. It didn’t have to be, but because they kept throwing more medication at him, each one was, you know, just prolonging the agony for Stephen, magnifying everything.

AM: And you told me in a previous conversation that he had the feeling that mice were crawling on his skin and that noises were magnified. You mentioned the walking as well, that he would walk miles a day.

CB: Yeah, so at the time we didn’t understand why Stephen walked so much. We thought he was just looking to clear his head. He was behaving so out of character and he just was so restless that he couldn’t sit still. If he couldn’t go walking outside, you know, where he would walk for miles, he would be walking around the kitchen table. He just couldn’t — he literally couldn’t sit still.

AM: And another sort of characteristic of the suffering that he had during the weeks before he died was that he couldn’t stand to be alone, and I believe you said that he was with your mother the whole time. Does that mean that he had moved in with her, or what was the arrangement there?

CB: He took turns staying between houses, like, he would have either stayed with his other sister Jaqueline or his other brother Patrick or else my mother.

AM: He had his own place but he just couldn’t stand to be there alone?

CB: Oh, yeah. Stephen owned his own home. He was very house-proud. Prior to taking the medication, he had started to really redecorate the house; he was painting and, you know, doing things around the house. And after he took the medication, then, he just didn’t want to be in the house. He didn’t want to be alone. So he would have stayed between everyone, then, which was highly unusual too, you know, because he was a very independent man; you know, he had lived on his own previously.

AM: And I would imagine that in doing that all of the different family members that took him in would have had the clear sense that there’s something really wrong here.

CB: Oh, yeah. Yeah. Everyone knew that there was something seriously wrong with Stephen. But it was the lack of communication from the doctors to the family — you know, we were told that they’ve seen this a thousand times before, that this is just what happens when you take medication, and that it has to get worse before it gets better.

AM: Yeah, that’s not very reassuring.

CB: No, not at all. And even though Stephen had told the doctors that he had put a belt around his neck — you know, it wasn’t just suicidal thoughts at this stage; it was suicidal actions — they were still — in Stephen’s notes and records and to the family they were still (relaying ?) Stephen as a low-risk patient. So we had no idea that what Stephen was suffering was akathisia, that [what] he was suffering was just solely down to the medication. We were kind of led to believe that Stephen was having some kind of mental breakdown. We believed the doctors when they said, no, he needs to keep taking the medication.

AM: Why do you think, in retrospect, that everyone came to that conclusion, based on the fact that Stephen had really minimal experience with, you know, mental health issues?

CB: Well, everyone just came on quite suddenly and I suppose there’s a lot of awareness around suicide now and mental health, so we were just in complete shock. We didn’t know what to do to help, really. You know, it was our family’s first time experiencing anything like this. And I suppose there’s a lot of awareness around mental health and suicide, but there’s no awareness around medication and, you know, reactions to medication. So that’s one of our big regrets is really, you know, we trusted completely, we put our faith into the medical system. We didn’t doubt what Stephen was saying was true, that the medication was causing issues. You know, we did believe him. But at the same time, we trusted what the doctors were saying and that — sorry, I’m just getting upset here because, you know, it doesn’t make sense what they were telling us verbally compared to what’s in his notes and records. You know, we were kind of made to believe that there was something wrong with Stephen and that the medication would rectify what was wrong. It was almost as if they were trying to find other reasons why Stephen might be feeling this way, you know, so they were talking him through different, like, life experiences and that and, you know, he was telling them it was the medication, but Stephen then began to search for other ways to get better. All that he wanted to do was get better. He wanted to beat the feeling. He wanted to, you know, get bloods done to see if there was a physical reason why he was feeling like that, because he was being completely gaslighted by the medical professionals. You know, they weren’t really taking on board what he was saying so he did start to kind of panic and doubt himself and think, well, if they’re all telling me that, you know, it’s not the medication, keep taking the medication, well, then it must be something else.

AM: Yeah. And I recall from our previous conversation that you actually suspected that it was possibly bipolar disorder.

CB: Yeah, I did.

AM: And you’re in Australia at this time, where you then lived.

CB: Yeah. So I had moved to Australia in 2012 and this was then obviously 2016. My mother rang me when I was going to work and I remember the phone call so well. She was like calling, something’s happened to Stephen, something’s seriously wrong, and I said, what do you mean? And she said, he’s had some kind of mental breakdown. And I said, well, what do you mean a mental breakdown? What’s he saying? Like, how is he acting? And she said, he’s just acting completely out of character; he’s not himself. And at this point she did mention that he had begun medication and that he was saying it was the tablets. And I remember almost not laughing but almost saying, mummy, how could it be tablets? How could tablets cause that? You know, so I am so angry with myself and I don’t think I’ll ever get over what I did next. Instead of researching medication and tablets and what Stephen was saying, I typed in Stephen’s symptoms and, lo and behold, it came up bipolar and it seemed to be that Stephen matched nearly almost every symptom, you know, where he was up and down with mood, he was just acting out of character, and all the different symptoms anyway. So that was when I was first made aware of what was happening and I just will always regret, I suppose, not initially looking for the medication, because if I had have, you know, Stephen could still be here today. Like, if I had just done that from that initial conversation, you know, we would have known as a family to tell Stephen, look, Stephen, you’ve took this reaction; it is very scary; you know, we understand what’s happening to you, and you just need to stay away from this type of medication for a long period just until you get yourself back to yourself again.

AM: Well, I mean, in retrospect, of course, that’s your wish and your regret, but at the time, he needed to hear that message from doctors and they weren’t delivering that message either, and the doctors presumably, you know, would know better.

CB: Exactly.

AM: So I think it’s — you know, when I’ve spoken to different people in this podcast series, I’ve repeatedly heard that, we trusted the doctors absolutely; we had no reason to doubt the doctors. And in retrospect, the doctors’ advice looks very bad, but at the time, I mean, that’s the mindset that most of us have which is, well, if the doctor says it, the doctor would know.

CB: Exactly.

AM: So in terms of the life that Stephen still had in front of him — it was a brief six weeks that remained in his life once he went on the initial medication — and I believe during that time you had been in touch with him until he went on the medication, but I recall, from our previous conversation, that you weren’t really in direct contact with him during those six weeks.

CB: Yeah. So that was in itself very unusual. When I first moved to Australia, Stephen had set up WhatsApp purely just to keep in contact with me, so when I was in Australia, the time difference is almost 12 hours, so when it’s morning time at home it was night time in Australia, and Stephen and I would have sent videos, text messages, photographs, like, very frequently, you know, weekly, sometimes daily. Up until he took the medication, we were phoning one another. You know, it would be my morning break time and I would phone Stephen and chat to him before he went to bed. So when I first heard that Stephen obviously had taken some kind of breakdown, as we thought it was, I remember sending Stephen a text message and I just said to him: “I hope you’re feeling better. Stay safe. Mummy told me you’re not sleeping right. Don’t forget, your night is my daytime so I’m always here if you fancy a wee midnight yarn.”

You know, at that stage, I was trying to reach out to him and he would have normally texted back straight away; you know, there would have been a phone call. I did try to phone him a few times and he didn’t answer his phone. Then, over the next few weeks, I started to send him photographs of us when we were young to try and lift his mood and maybe make him think of better times, but, again, he’d seen the messages and didn’t respond. So that was completely — that wasn’t Stephen at all. He just had cut himself off from everything he loved. You know, he couldn’t do anything anymore. And one of the words of advice or one of the exercises that the crisis team had given to Stephen during that time was to write down 10 things each day and do them, basically, but Stephen was not much of a state that he couldn’t settle himself, you know, to do anything; he couldn’t put his name to anything to even try and distract himself from the way he felt. And, you know, there was just so many times in them six weeks where he just — he almost — he couldn’t trust himself even to stay alone so the thoughts and the feelings that he was getting must have been very, very dark and very scary.

He did also — about three days before he died, he did come to my auntie, his sister, who lived next door to him, and he did tell her that, you know, he’s feeling really bad again, you know. He admitted then that at the weekend previous he had woken up with a belt around his neck, and she said, Stephen, what do you mean woken up with a belt around your neck? What do you mean? And he said, I don’t know. He said, you know, he had laid down to rest and when he opened his eyes again, he was standing in his hallway with the belt around his neck; he didn’t know how he got there. You know, it was very, very frightening. It was almost as if he was in some kind of a trance. So at that point she phoned the crisis team again. And Jacqueline said, well, look, Stephen’s been on medication and it hasn’t been helping. And I think at that point she even said to them he wants to come off the medication. And the doctor said to him, then, well, how long has he been on it? And Jacqueline said a few weeks, and the doctor just said, look, no, he needs to stay on it; you know, he needs to be on it six weeks. And Jacqueline said, well, I think he really wants to come back down to the unit; he wants to admit himself again. And the doctor said, no, there’s no need for him to come down, just to stay on the medication. And within three days, then, Stephen was dead.

AM: And you were in Australia on that day and got the information from family?

CB: Yeah, so when I got the phone call, I knew straight away. I was out doing a bit of shopping, grocery shopping, and I knew straight away because of the time difference that it wasn’t the right time for my mother to be phoning. And when I answered the phone, then, I just answered the phone to screaming, wailing. I’ll never forget just the sound of my mother down the phone. And she was just screaming that Stephen had done it. The feeling I had when Stephen died in this way, it was as if something was just ripped out of me. I can’t describe it.

So I just remember just dropping everything and my husband just escorting me out. And then within — I think within 48 hours we just packed up everything we could. We left a lot of stuff there, furniture and everything, and we just came home. I was then home in time for the wake and I was able to spend a day with Stephen, and then the funeral was the next day. And then I think it was the day after the funeral where I finally decided to look into the medication, because that’s all my mother and her sister kept saying was it was them tablets; it was the tablets; Stephen kept saying it was the tablets. They were just absolutely beside themselves. Initially I remember feeling sorry for them, feeling, you know — you know, I didn’t understand what was happening; like, I was in a complete state of shock, too, but I thought perhaps that they were looking for something to blame, you know, that it was almost them lashing out. But then, the more I heard them speak and the more they told me about Stephen within those six weeks because they were with him like every second of every day almost, I knew things weren’t right. So that’s when I decided to just type in, to Google, “Can Sertraline cause suicide?” and it was just there, everything.

AM: And how would you describe your life during this time, in those first weeks and months that you had returned to Northern Ireland?

CB: Yeah, we were just completely — devastated isn’t even the word. We couldn’t function. We sat around the kitchen table it felt like for months like still unable to really function; to even go to the shop, to even go out shopping was too much. We couldn’t face really the outside world to even make conversation with anyone.

AM: And when you say “we,” who do you mean?

CB: Sorry. Me and my mother. When I came home then I moved in with her, to support her, because she was absolutely devastated too. So then I began to work on preparing for an inquest.

During those six months I was really — I was researching a lot, you know, I was finding all this information, but to actually begin anything, it was kind of too much at that point. And —

AM: I mean, I would imagine that the research was at that point more part of your grieving process, to just know what had happened, to know more for yourself.

CB: Exactly. Yeah.

AM: But then that information that you gleaned from that process became useful in another context once you started to do this more formal gathering of information for the inquest.

CB: Exactly. So I think after a couple months we did get a letter from the coroner service asking us did we want an inquest. So we knew immediately yes, we do want an inquest so we responded to that.

AM: And for listeners who might wonder, can you just describe what an inquest involves and when one would take place?

CB: Yeah, so basically, if a person dies suddenly, unexpectedly, or kind of in abnormal circumstances, the coroner here can request an inquest, and so in most instances of suicide, there will be an inquest. The coroner then — it’s really a fact-finding exercise for the coroner then to basically declare how a person died. So we were 100 percent of the mind frame that we wanted a full inquest, but I knew that we — first of all, we could easily get an expert opinion from David Healy, and I knew that he was more than happy to provide us with an expert opinion.

AM: And you didn’t just speak to David Healy; you spoke to anyone who knew Stephen and gathered statements.

CB: Yeah. So basically we gathered statements from bars and restaurants that Stephen had been singing with prior to the tablets and they were able to — you know, they were able to confirm that, you know, Stephen was himself, he was fine, and then out of the blue, they got a phone call to say, you know, all bookings are canceled. We got statements from a local priest. You know, Stephen would have been quite religious too. You know, he would have had — he would have been a man of great faith and he would have went on pilgrimages and he would have known the priest quite well, as well, so he was able to provide a statement.

The inquest actually was quite ferocious, then. You know, it was a three-day inquest and we had Professor Healy in as an expert witness, and I don’t think he’s ever experienced anything like it. I think he did allude to that fact as well. You know, he was treated almost as if he was a criminal on trial. You know, the counsel, the barristers for the hospital and even the coroner’s counsel, the doctor’s solicitor, you know, they were very much on the attack, as if Healy was telling lies. (Laughs.) At the end of the day, Healy is a worldwide renowned expert in his field. You can’t get anybody with more expertise on these issues than Professor David Healy, in my opinion. (Laughs.) So yeah, he was — it was very intense questioning, you know, almost a cross-examination of Professor Healy’s written statement.

AM: Were they aggressive toward anyone else involved?

CB: No.

AM: OK. So he bore the brunt of that.

CB: He bore the absolute brunt, yeah. (Laughs.)

AM: So after all this happened, you started a Facebook page, Stephen’s Voice, where you wrote his story in his voice.

CB: Yeah.

AM: And as you told me before, it went a “wee bit viral.”

CB: It did.

AM: And people started to tell their stories, which you didn’t necessarily expect.

CB: No. I was so nervous. You know, we had chatted about doing this to try and raise awareness for a long time, but I was very nervous about doing it because I felt that there was going to be some backlash possibly, because here in Northern Ireland there are so many people on antidepressants. You know, I have a lot of other family members and friends, you know, work colleagues, different people, that are on antidepressants, and I felt that if we told Stephen’s story that we would have a lot of people saying, “How dare you?” You know, “These antidepressants saved my life.” You know, I thought there would be a lot of trolling, as they would say. But we were completely taken back by the response. You know, it was kind of like a MeToo moment where we were getting hundreds of people, either publicly or privately, telling us their stories. I’ve actually goosebumps just thinking about, you know, all those people who have been affected and still are affected. You know, it’s obvious that there is a serious issue around the prescribing of these medications. You know, we need to stop shying away from the fact that they can cause harm and we need to start opening up conversations around the harm that they can cause, you know, so people know that they’re not alone, that other people know that it’s not just them, you know, that it’s the medication that’s causing it. Like, I had a young woman who was prescribed antidepressants after having a baby and she had a very similar reaction to Stephen, and only she had seen Stephen’s story. She truly — she was made to believe that she was having a mental breakdown, but she had seen Stephen’s story and she said no, this is what’s happening to me. So she relayed this then to her health provider, health care team, and they then stopped her medication and her issues resolved. You know, and she did get back to me since and, you know, couldn’t thank us enough for bringing this awareness because if she didn’t have that then, her, like many others, would be just on a route to more pills, more drugs. You know, it’s kind of like a vicious cycle.

AM: And it sounds like the awareness and the education are just as needed for medical professionals.

CB: Completely. Completely. Yeah. It’s actually quite scary. I know my other uncle, Damien, and I both attended a suicide prevention conference about a year after Stephen died and this conference was primarily aimed at medical professionals and charities. But we decided to buy tickets and we went along anyway. We sat at a big round table and we were, you know, sitting beside doctors, suicide prevention charities, different professionals, and we made a point that day of asking as many people as we could, have you heard of akathisia? And not one person sitting in that room had heard the word. They actually said, “aka-what?” You know, they didn’t even know how to spell it. So that really made us see how important it is for that awareness to be out there, to be on every kind of platform it can be, you know. And very importantly, too, the suicide charities, the people — the help lines that people are phoning, you know, they need to be clued up to all this as well, to be able to give the right advice.

AM: Very importantly, yeah.

CB: Yeah.

AM: Your activism, though, is not anti-drug.

CB: No. Not at all. No completely. Like we have said from day one that we are not anti-medication in any sense. We just want to provide people with information. You know, we want to provide as much awareness as we can.

Now, legally, in my opinion, surely, then, but for Sertraline, you know, Stephen would still be alive today. If Stephen had never have consumed Sertraline, then he wouldn’t have went into that state and the events that happened thereafter would never have happened.

The Stephen's Voice Facebook page is available at facebook.com slash stephenoneillsvoice. That's Stephen with a ph and two Ls in O’Neill. And no apostrophe.

If you'd like to find out more and get the best information about this important topic of akathisia, the MISSD website is a great place to start.

[Wendy Dolin] "If you go to our website, the section that says What Is Akathisia? you will see the two MISSD videos, as well as we have an educational PDF that you can print off. We also are on Facebook and Twitter. If you like this podcast, learn more about akathisia and just send it to your contacts. And this is the way we spread our message. And I hope that people will really look at the signs and symptoms of akathisia. They’re listed in the videos, listed on the website."

That's MISSD founder Wendy Dolin.

You've been listening to the “Akathisia Stories” podcast. We'll have another episode next month. If you'd like to share your own story for this podcast, please email studio.c.chicago@gmail.com, and please share this podcast and subscribe.

I'm Andy Miles and I'd like to thank Colleen Bell for her time and candor, and I'd like to thank you for listening.

{Also available: two podcast extras}

GO TO THE AKATHISIA STORIES MAIN PAGE