Postpartum psychosis

Postpartum psychosis is a psychiatric emergency that can start very suddenly in the days or weeks after having a baby. It can happen to anyone and often occurs completely out of the blue.

In this episode we are joined by Sally Wilson from Action on Postpartum Psychosis to talk about her experience of postpartum psychosis and the work that she is doing with APP to support and advocate for women and families who have been affected by this serious but treatable condition.

If you would like to learn more about this topic, you can follow APP on twitter @ActionOnPP and check out the resources on their website. 

If you or someone you know is struggling with mental health difficulties, there is lots of help available. You can contact your primary care provider in the first instance, or if you are based in the UK the NHS perinatal mental health website will help you to find support in your local area.

Transcript

[00:00:13] Lynsey: Hi, everyone, and welcome to the podcast. My name is Dr. Lynsey McAlpine. I'm a trainee in adult psychiatry. 

[00:00:19] Chrissy: ... and my name is Dr. Chrissy Jayarajah. I'm a consultant perinatal psychiatrist and clinical lead. 

[00:00:25] Lynsey: And this is Beyond Baby Blues, the podcast where we talk about all things relating to, maternal mental health. Today we're going to be talking about something called postnatal psychosis, and we're really delighted to be joined by Sally Wilson, who's going to be talking about her work with Action on Postpartum Psychosis. Sally, welcome to the podcast. Tell us a bit about yourself. 

[00:00:48] Sally: Thank you, and thanks for having me. So, yeah, my name's Sally, and I've got one daughter, and I'm the training lead for Action on Postpartum Psychosis, which is a UK charity that, supports families affected by postpartum Psychosis

[00:01:02] Lynsey: Thanks for being here. So, I suppose to get started, we should probably explain what we mean by postpartum psychosis. Chrissy I know that you've seen a lot of it in your clinical practice. What is it? 

[00:01:14] Chrissy: so postnatal psychosis is a psychiatric condition that happens around the time of birth, where a woman may experience a change in her mood or her mental state. . So there are certain symptoms that come up in psychosis. So essentially it's a detachment from reality. I think that's the easiest way to think about it. It's quite rare it affects about two in a thousand women 

[00:01:39] Lynsey: that's right, and although it's uncommon, it can happen very suddenly and unexpectedly, either during or immediately after giving birth.

Sally, I know that you've had your own experience of postpartum psychosis. Could you tell us what happened? 

[00:01:54] Sally: Yeah, of course. Yeah. Just to start with, I had no previous mental illness before, I had my daughter, I had little bits of anxiety, but then everyone has a bit of anxiety. My pregnancy was fine. I was overdue and showing signs of pre eclampsia, and sort of suspected infection. So something going on physically there. So I went in to be induced, and. I won't go through the long couple of days of , painful labor, but it wasn't progressing.

So the baby's in distress, so it suggested that, I should have an emergency c section under general anaesthetic, just because of infection and everything. So when I came around from the general anaesthetic, I was just really confused, which is quite normal, obviously, after general anaesthetic.

 But, that confusion went on through that day, really. So I was still in the labor room, couldn't really make sense of anything, couldn't understand where. You know, my daughter had come from, couldn't understand why there were all these doctors and nurses and midwives in the room. 

Felt a bit dizzy, sort of headachy, so maybe, you know, suspected kind of stroke from the preeclampsia. So I had to see a CT scan but in my mind, there just, there just something wasn't quite right, but I couldn't put my finger on it. I couldn't really make sense of time so just for me personally the first kind of signs of it for me looking back with that just real confusion of what was going on really.

And then as the kind of couple of days went on I was quite teary, um, mood up and down. was My mind sort of really busy, really racing, just wouldn't switch off, but.

I guess from the outside, it didn't look anything different. I just looked a bit exhausted, a bit vague, but just, lots of busy and racing thoughts and not able to switch off really. And then as time went on, I started to get those kind of paranoia feelings and seeing and hearing things very loudly at first.

So there were real sounds, amplified and then those eventually turned into things that weren't really there and sort of seeing. shadows on the wall and flashing lights and hearing people talking about me, but that didn't happen in real life. So yeah, so those early signs and symptoms then graduated into delusions and hallucinations. 

[00:03:55] Lynsey: It sounds like it would have been really frightening. You mentioned the paranoid thoughts. I wonder what kind of thoughts were going through your head at the time., 

[00:04:04] Sally: I started to think that the nurses and midwives were talking about me and saying sort of, oh it's really sad, she's so poorly, she was such a nice girl but I know that didn't happen in real life, you know, and the overriding feeling was fear, and feeling scared, and this like deep gloom, doom that something was about to happen. That's the only way I can describe it, like something horrific was about to happen. 

[00:04:28] Lynsey: And it sounds like, I mean, in yourself you felt very different, what did other people notice about you at the time? 

[00:04:35] Sally: Um, I don't think People did notice because they didn't sort of know me . But as, as the days went on, my behaviour got more and more strange. So, a few days after my daughter was born, I was awake for the whole night. And, a lovely midwife stayed with me through the night. I was just so scared, I didn't want her to leave. My husband had gone home to get some rest. And I just, I kept asking her what happened. I couldn't understand what happened. I was very anxious, very scared. I kept asking her what I'd done and why I could hear people talking about me. So at that point, she knew that there's something wasn't right. quite right, really. 

[00:05:12] Lynsey: Sure, so it took a little while for people to pick up on, how bad things were for you.

Yeah. So a lot of the symptoms that you described are really typical of postpartum psychosis. In your case, you started to notice symptoms pretty much immediately after giving birth, and things deteriorated very rapidly from there. And normally that's what we see, the symptoms starting within hours or days after delivery. Although, in some cases, the onset can be more gradual, and we don't start to see symptoms emerging until a few weeks after the delivery has taken place.

you talked about feeling really fearful and scared and thinking that people were talking about you. It seems like those beliefs and those fears became more intense and more fixed over time. That's what we describe as a delusion, a strongly held belief that's not based in reality. In your case it was paranoid delusions that people were trying to harm you. Some people will develop other types of delusions, for example, believing that something really strange has happened or that they've developed special powers.

The other symptom that you described was hearing and seeing things that weren't real. That's something that we describe as hallucinations, where your brain is playing tricks on you and creating something that seems real, even though it's not. They're both really frightening experiences, and we know that these are really common symptoms in people that experience psychosis. 

[00:06:33] Chrissy: Absolutely. And, I was just curious, Sally, did any of your symptoms impact on your relationship , with your daughter at all? 

[00:06:41] Sally: Yeah. So acutely in those four or five days leading up to when I got admitted I couldn't really look after her then because I was so confused. I didn't know what was going on. I was trying to feed her, but my milk wasn't coming in. So she was really, really hungry. So eventually, we ended up feeding her formula. So yeah, the midwives and the nurses were looking after my daughter in the night and, and really helping us through that time whilst we were trying to work out what was going on. 

I didn't even think she was mine, so I couldn't understand where she'd come from. I couldn't understand that I'd given birth, partly because I was under general anaesthetic, so I didn't really see it or know what had happened. And she kind of looked different every time I looked at her, so she was sort of, her features would change and I I just could not connect,

so, yeah, quite rooted in something to do with her, really. 

[00:07:30] Chrissy: Yeah, I mean that sounds terrifying what you've discussed and I think it's a, it's really important that question about thinking about the baby so the symptoms can start to affect the bond and the attachment . I've looked after women who have been quite suspicious about their baby or suspicious that other people are trying to hurt their baby. Um, so it's really important, to check on both, not just the mum, but also how they're feeling about their newborn.

[00:08:03] Lynsey: Yeah, and I've certainly worked with a lot of women who've developed unusual beliefs about their baby and that can be really hard to articulate it can be really scary to admit that you believe strange things about your baby. 

[00:08:14] Chrissy: And sometimes actually the symptoms can be out of love and protection. So we always think it's about being paranoid or suspicious. And yes, of course that's a huge element of it, but in postnatal psychosis, we certainly have women who. Act out of love and protection for their child their behaviors might seem a bit bizarre to other people for example I need to make sure me and my baby are safe from other people So they're doing it with a good intention in their hearts. So I think always just bear that in mind as well 

[00:08:43] Lynsey: I wanted to pick up on one other thing that Sally mentioned, which is about how much your mood was changing over those first few days. And I think that's another symptom that we often see in postnatal psychosis 

unlike most other types of psychosis, we describe postnatal psychosis as an affective psychosis, and what we mean by that is that it doesn't just affect your relationship with reality, it also affects your mood at the same time, and so we often see women who have the extreme highs and extreme lows of mood as part of their presentation, and that can change quite rapidly, especially at the beginning. 

The other thing that you talked about, Sally, was some of the things that may have been triggers for postpartum psychosis. Chrissy, I wonder if you could tell us some more about the triggers that we see.

[00:09:28] Chrissy: Yeah, absolutely. So, obviously, physical health issues um, poor sleep, being under significant stress as well, if not stressful, it's certainly a life transition, isn't it? It's a big change that someone has to go through, particularly if it's their first child. 

[00:09:45] Lynsey: Yeah, that's true. We know that being a first time mother is a risk factor for developing postpartum psychosis. We also know that there is a genetic component, so if someone has a close family member who has had postpartum psychosis in the past, so a mother or a sister, then they are at higher risk of developing it themselves.

And we know also that people who have a diagnosis of bipolar disorder or people who've had postnatal psychosis themselves in the past with previous pregnancies are also at higher risk.

So Sally, you've told us about what happened in the days following your birth. It seems like eventually it was noticed that things were not quite right . What happened from there? 

[00:10:25] Sally: Um, I guess there was quite a big event that happened on the postnatal ward, so over those days things had been getting more and more strange for me and much more fearful and then hadn't slept for about four or five nights and just couldn't switch off and um, I had this kind of huge realization about what everything had been leading up to.

So in my mind, I'd had this huge epiphany of what happened basically. And I turned around to see the midwives. taking my daughter off to be kind of resuscitated and 100 percent believed I'd done something at that time.

And it was, it was more out of fear. You know, I didn't want to do anything. You've talked about that kind of bond with almost like overprotection. Like I was so scared that I'd done something I was, I was living in some kind of afterlife and being punished for what I'd done to my daughter, 

I was admitted to a psychiatric unit. So it's a general ward. So I was admitted without my daughter and just, yeah, a really, really scary place , I was really poorly, didn't understand where I was, didn't have my baby, but didn't fully believe I'd had a baby anyway. Then my milk started coming in and there was just so much confusion going on 

and so I was, Prescribed anti psychotics, anti anxiety and anti depressive medication and monitored for a couple of weeks in the acute ward there. Um, my family visited and my daughter, came in a couple of times in those couple of weeks.

And then I was eventually discharged into the community and treated at home. Um, and , lots of different medication trialing and it's really hard to monitor when you're poorly if you're getting better or not, but nothing was really getting better and then alongside the psychosis, which continued also developed severe depression as well, which can sometimes happen after that acute psychotic phase.

 So yeah, I was just really, really, really poorly and not getting better. So eventually I. Came across a second psychiatry opinion service through Action on Postpartum Psychosis and they were able to work with my team where I lived and suggested electroconvulsive therapy or ECT. And that was the kind of turning point for me really

[00:12:32] Lynsey: so you had tried quite a few different medications by that point and it seemed like none of them were really helping, so ECT was suggested. ECT is a treatment that we sometimes use when medications have not worked. It involves having a general anaesthetic, and then having electrical pulses pass through the brain to cause a seizure or a fit. It's thought to help change some of the brain activity that has gone wrong when people get unwell. How did you feel about that treatment?

[00:12:59] Sally: Um, at the time, I thought it was made up still, because I was still thinking, all the healthcare professionals, everyone in my life is made up, I was still living in a parallel universe.

But in the same time, I had some insight, so I kind of, I knew. that I needed to get better. So I believed that there was an illness, but I still half kind of believed it was made up. And I believed ECT was like this thing that didn't happen anymore. It happened in the movies years ago and it wasn't a real thing. So that was quite scary going into it, just not really knowing, what was going to happen . I was so desperate that I was willing to try anything really at that time, I'd had months and months of severe depression, hopelessness, intrusive thoughts, but also desperately wanting to get better, but not knowing how. So for me, I was just willing to try it, 

[00:13:47] Chrissy: ECT is a fantastic treatment actually for people who have experienced severe depression and what you describe, Sally it makes you think, doesn't it? I mean, you, you've been through so much so after having ECT, what happened next? 

[00:14:02] Sally: So it was very gradual. And I had about 10 sessions over about five weeks. About three or four sessions in, I started to believe these little glimpses of reality. So I thought, Oh, maybe this is a real psychiatrist and maybe this is a real ECT suite and it's not made up. Those little moments just got more and more over time.

 It was gradually these little. I call it hope that things weren't going to stay the same . And that was the start of my recovery. I felt where suddenly I'd realized that I'd been severely unwell for, you know, nearly a year, back in the room, back into reality, Kind of working on my relationship with my daughter and everyone around me and building my life back up .

[00:14:45] Lynsey: So, Sally, your little girl was born eight years ago now, and as you know, a lot has changed in perinatal psychiatry in recent years. And I think one of the biggest changes has been the expansion of mother and baby units, which are specialist psychiatric wards that are designed to allow mothers and their babies to be admitted to hospital together for treatment.

[00:15:03] Chrissy: So we avoid that separation, which would happen if a patient needs to go to a general psychiatric ward, because obviously babies aren't allowed on general psychiatric wards. 

[00:15:13] Lynsey: That's right, Chrissy. In mother and baby units, we have child friendly wards and a whole multidisciplinary team who have special expertise in looking after pregnant women and new mothers. And the treatment is not just about medication, although that is important. The treatment involves nursery nurses, occupational therapists, psychologists, parent infant psychotherapists and peer support workers. 

We, we try to take a more holistic approach and the whole ethos is to keep mums and babies together because we know that it is so important for recovery and for supporting mums to develop confidence and build on that bond with their baby as they recover.

[00:15:49] Sally: Yeah, and we've done some work in APP looking at outcomes of mother and baby units versus general psychiatric units. And we know that, you know, that the recovery process actually starts in, you know, in that inpatient unit as well. And we found that those that treated in a mother and baby unit. For postpartum psychosis, so much more satisfied with the care, they have shorter time of recovery. They have increased confidence with their baby and less trauma. So we know that, you know, that's where mums and babies need to be. 

Yeah, I mean, I think it's important to recognise that there are still circumstances where mum and baby may need to be separated, for baby safety So , there may be circumstances where it'd be better for mother to be admitted alone to a psychiatric ward.

[00:16:34] Chrissy: But similar to what you were just saying, Sally, the inpatient part is just one piece of the puzzle. actually a lot of the work starts when you get home and the recovery process and myself as a community perinatal psychiatrist we work with women up to two years post natal and you can see why there is so much to unpack even after a relatively short experience of postnatal psychosis, um, that it does take, you know, months to make a full recovery. And it's a holistic recovery process, you know, I'm not just thinking about medication, but we're thinking about the attachment and bond between parent and infant. And we're thinking also about processing essentially a trauma, you know, someone's been through a traumatic experience with postnatal psychosis.

They may often experience a depressive episode afterwards and it's how we can support them to get back on their feet,

Sally, I was wondering if you could tell us a little bit about your life now as I know you're working with Action Postpartum Psychosis. 

[00:17:37] Sally: Yeah, so it probably took me a few years to recover from everything.

I guess mine is just one example of experience. It's quite a long psychosis and depression. So it did take a long time to recover. And as you've talked about the different treatments, you know, it's very individual in terms of recovery process. I was able to access peer support through APP, which was a massive part of my recovery. So I was able to talk to another woman that had been through a very similar experience to me, and she offered that hope that Things weren't always gonna be that way and that, you know, we, we can recover from this.

 So that was a massive part of my journey. And then I trained to be a peer supporter myself through the charity. So helping women and families going through it. and then just using my background in academia and my lived experience. I then managed to, get a job with a PP. 

So what we do in APP is use lived experience. It's at the core of the charity, really. So we're a collaboration between clinicians, academics and lived experience. And we use academic and research, but also the lived experience input to help train health professionals across the UK.

 And one of our aims really is to make sure that everybody that comes into contact with families in that perinatal period knows about postpartum psychosis. So That's my role in terms of my job trying to, you know get that message out there that we need to know about it. but we can do something about it and there is that hope that people recover from it.

Um, and then in terms of my daughter, I was obviously very worried in the beginning about a kind of rocky start to life for her but, um, She's very happy and engaged and seems to be doing okay in life at the minute. So we're, yeah, enjoying family life. Very lucky to be able to do all the things that we do

[00:19:21] Lynsey: that's amazing, Sally. That's good to hear. And I think that's a really important message for people to take from this episode is that, postpartum psychosis is a really scary condition. It's frightening and it can be very serious, but people do recover from it. And in my clinical practice, and I'm sure in yours as well, Chrissy, the vast majority of people that we see make a really good recovery. 

[00:19:42] Chrissy: Absolutely. 

[00:19:43] Lynsey: In addition to all the work that APP does around postpartum psychosis, they also do a lot of work to support partners and family members of people who've been affected. Could you tell us a little bit more about that? 

[00:19:58] Sally: Yeah, of course. It's incredibly traumatic for partners and, family going through it . What we do is support partners through that process. So again, we've always offered peer support to partners or anyone that's affected by postpartum psychosis.

But now we have a specific partner project where at any point, whether that's during the crisis moment when they've been admitted to general psychiatric unit or mother and baby unit or further down the line, we have trained peer supporters to support partners through that. And I guess. Health professionals see, parts of it. But partners will just go through everything, all that trauma working out if things are ever going to be the same again, you know, someone being admitted to psychiatric units, it's incredibly traumatic and then having a newborn to deal with as well, 

[00:20:42] Lynsey: yeah, 

and just to finish up, what advice would you give to people who think that they might be experiencing these symptoms themselves or who might have noticed these symptoms in a loved one?

[00:20:51] Sally: If something doesn't feel right for that person, there's no harm in, you know, asking for help, I guess. Unfortunately things can escalate really quickly and that's why we need to get that help really quickly. So it's better to ask for help than not. 

[00:21:04] Chrissy: Absolutely, I totally agree, Sally, with what you said. And also just to bear in mind that we do consider it as a psychiatric emergency, so symptoms can come on suddenly, they can also fluctuate and kind of come and go, which can be quite confusing as well. If you find yourself in that situation or a loved one is in that situation, do come to your local accident emergency or local hospital for support. A& Es across the country have mental health support 24 hours a day, seven days a week, so you can access support through that and then be referred to the right people and the right places if needed.. 

[00:21:40] Lynsey: It also recommend for anyone that's interested that you can look at the app website where they've got lots of great information and resources. We'll put the link in the episode description so that you can check it out.

Sally, thank you so much for joining us today. We really appreciate you sharing your story and telling us about some of the amazing work that APP is doing. 

We'd also like to thank the Royal College of Psychiatrists and specifically the perinatal faculty for their support with the podcast.

If you've enjoyed this podcast, you can find more episodes on Spotify, Apple Podcasts, or wherever you get your podcasts.