All posts by Lucy Nichol

7 November 2024

Jenni’s story: Having my baby by my side is something I’ll always be grateful for

Being able to wake up every morning with my baby daughter by my side was amazing. As sick as I was, I really held onto that and it definitely helped me in my recovery. Mother and Baby Units (MBUs) are so important for that reason. We were a long way from home, and it was devastating being sectioned, but having Isla with me throughout is something I’ll always be grateful for.

Jenni Semple at family at Disneyland, standing in front of the magical castle

Being a first time mum who was lucky enough to have an uncomplicated, happy pregnancy, I really wasn’t prepared for what followed.

The birth itself was really traumatic, resulting in a forceps delivery. But after that, I was strangely elated. I knew I would probably feel really happy because I’d just given birth to our beautiful baby girl. But, in hindsight, this was a whole different level of happiness. I couldn’t switch off. And I couldn’t sleep either.

I went home from hospital within a couple of days of giving birth and one of the first things I remember is that taking my pain relief was problematic. I couldn’t remember how to do it, and I kept writing down different dates, times and doses, but I still had no idea if I was taking too much or too little and it really scared me. On top of that, I was hit with a fear that they were going to take Isla away from me. My midwife would visit and spend several hours trying to reassure me, but no matter what she said, she couldn’t put my mind at rest.

Then I started worrying about more things and no matter what anyone said, I couldn’t stop obsessing. For example, I was convinced I was feeding Isla incorrectly and went as far as to hire a private lactation consultant. But even when she reassured me that I was doing OK, I just didn’t believe her.

I had a sense that something wasn’t right, and, because I also hadn’t slept, I wondered if I had some kind of baby blues or something. But when my mother in law came to visit and voiced her concerns, I got really angry and told her to leave. Still, I went to see the doctor with my husband genuinely believing they’d be able to give me a tablet, send me home and all would be well.

When I got there, however, I was completely unable to communicate with my GP. I couldn’t understand what she was saying, it all sounded muddled and scary. She immediately diagnosed me with PP and contacted the perinatal mental health team.

We waited in a separate consultation room but the perinatal team didn’t call back so we were sent home. It was a Tuesday, and that night was the worst. That night was when the hallucinations, the voices, started. And it felt like it went on for hours.

By Wednesday morning my husband chased the GP who chased the mental health team and a psychiatrist came to the house with a nurse and another doctor. I was immediately sectioned.

Just before they came, my behaviour became really scary for my husband. I was trying to kill myself. I remember my husband trying to hold me back from going out of the door. And when I look back on this I just feel overwhelmed with guilt that while all of this was happening, I simply wasn’t looking after Isla.

So that night I was taken by ambulance to Bournemouth MBU where I spent three weeks as an inpatient. It was an equally harrowing and scary experience because my illness convinced me that I was in prison and that I was never getting out.

At the same time, as it was early in 2020, the pandemic was just happening. So that all added to my paranoia – particularly around the belief that I wasn’t really in a hospital and it was all a set up.

Looking back though, during my three weeks in the MBU, the staff really were amazing. Not only did it mean I could recover with Isla by my side, but there were lots of activities to take part in – cooking, gardening, etc. And I bonded quite well with the other patients. It was a tough time, however, because the MBU was so far from home. We lived in Oxford at the time and our nearest MBU would have been Winchester but they didn’t have any beds so I ended up in Bournemouth. My husband literally drove 4,000 miles in three weeks in order to visit us!

After three weeks they decided I could go home, but the day I got released was the day we went into full lockdown - which did my paranoia no good! I was still very peculiar for a few weeks - I couldn’t listen to the radio or focus on the telly for a while. And I had to stay on medication.

Everything was kind of OK for a few weeks, and then depression hit. It took a really long time to come out the other end of the depression but I got there eventually.

Now, we’ve moved back to Norfolk to be near my family. I’ve changed jobs too and we’ve just got a puppy – so family life is really good.

I also have really good peer support through APP.

Jocelyn has been amazing – if ever I have a dip, she’s right there. She helped me through the acute phase but it’s so nice to know that there’s somebody else who has been through what I have who is always available to chat. Being able to share what you’ve been through with someone who just gets it is so important. I would encourage anyone going through PP to reach out for peer support.

 

15 October 2024

Natalie’s story: When I joined an APP café group it was so reassuring to know I wasn’t alone

 Nobody in my family had heard of postpartum psychosis before, and even some of the doctors who were first treating me didn’t know what it was. But getting admitted to an MBU and finding the APP peer support community has been an amazing help.

It was 2019 when I had my first baby. Our son was born after a relatively straightforward pregnancy and a really good birth. I’d taken a hypno-birthing course, practiced relaxations and visualisations, and, on the day itself, I enjoyed a very quick labour with no need for pain intervention. I felt so lucky and it’s a nice moment to look back on because, not long after leaving hospital, things went downhill very quickly indeed.

As a first-time mum I was really anxious.

You don’t get handed a manual and every child is different, so I was always worrying about whether or not I was doing things right. I also felt as though I got a lot of mixed messages from the different midwives and health visitors, so I found everything confusing.

I started writing lots of lists and obsessing over things like the number of dirty nappies he should have, and I struggled with breastfeeding too. Add to that a total lack of sleep (I think I must have got around eight hours in total during the first week at home after birth) and not eating well and my anxiety was through the roof.

The problem is, when you’re a first-time parent, you expect big changes, so we didn’t know if all this was normal or not. However, after being at home for a week there was a turning point when things got really bad.

I remember getting a shower and hearing my baby crying. I told my husband but, in reality, we knew that I couldn’t really hear him crying because he was too far away. I think that might have been my first hallucination.

After that, my moods became really up and down.

I had low mood and tears one minute, the next I’d be normal, and the next I’d be really high, hyper and giggly. It became really obvious to my husband that something was wrong, but he had no idea what it could be.

During an evening meal, around a week after the birth of my son, I was holding my baby and could see him turning blue and choking before my eyes. I was hysterical, I truly believed my baby boy was dying in my arms. Of course, he wasn’t turning blue or choking – this was another hallucination.

Soon after the hallucination that my son was dying in my arms, we went to my mother-in-law’s for a night. On the way to her house all I could hear was the baby crying, it was so distressing. Talking to my husband more recently, he told me I was deadly silent during the journey. Once we were at my mother in law’s I actually slept really well. But the next morning things got worse. I was convinced my baby had died – and that the baby I was holding was somebody else’s.

My husband talked me into going to A&E – saying we should get our son checked over. In reality, he wanted to get me seen by a doctor as he knew that I was the one who was unwell.

During that first visit to A&E I was really delusional and paranoid. I was admitted to hospital that night – to a geriatric ward (which was really inappropriate) – but I was so desperate to go home I did everything I could to convince them there was nothing wrong with me, that it was just a case of sleep deprivation. My husband said I was quite convincing at that point and I think that’s why, after being transferred to an MBU the following day, my initial admission was so short. I was there for three and a half weeks. Of course, when I went home, having convinced everyone I was well and stable, things gradually worsened.

My confidence was shot and I was full of anxiety and kept experiencing dips in mood. I struggled to go anywhere alone and became paranoid about bad things happening to my baby, so I found it really difficult to do things like taking him swimming. The intrusive thoughts were just awful.

Around this time I started going to baby groups and meeting up with other mums and family friends. I also had support in the community from the perinatal service and we eventually tapered me off my meds. Unfortunately, it was all too soon and then Covid hit – which was also a big trigger for me.

So, nine months after having my baby, I was admitted to an MBU once again. And, once again, I tried to convince them I was well and after a few short weeks I was actually discharged for a week, but I ended up being re-admitted.

By this point I think I became resigned to the fact that I was ill, and I was no longer able to convince everyone otherwise. I started engaging with the activities and therapies in the MBU – baking, painting my nails, having psychotherapy. I was also finally on the right medication.

When I came out of the MBU after the third admission, I was much more confident. I was happier to do things with my son, happier to socialise. I went back to work which was really difficult, but since then I changed jobs and my new team and management have been so supportive.

I have now been diagnosed with bipolar which would account for the first relapse when my son was nine months old, but I’ve had my daughter since and we had no problems or relapses, so, with the right help, things can be managed.

The experience of PP, although horrible and traumatic, has also given me some positives. I think I feel more confident and able to stand up for myself these days. I know I don’t want to become unwell again so I am much more able to identify when I need to practice some self-care.

Now, things are really good for us. My husband and I have been doing lots of fundraisers for APP which have been great fun to do, and we have also joined the charity’s peer support community. I attend café groups and it’s made such a difference. Meeting people who have had what you have – especially when you’d never previously heard of it – is so powerful. My husband also goes to the partner peer support groups and my mother-in-law is also involved in APP’s peer support. We also take an annual trip to Bournemouth MBU around my son’s birthday which is such a positive thing for us, the staff love seeing us and we look forward to the trip every year.

If anyone reading this is going through PP or in the early stages of recovery my advice would be to listen to the professionals and accept all the help you can. I truly believe I would have recovered a lot sooner if I was able to accept that I was unwell. I’d also say do everything you possibly can to get as much sleep as you can, whether that’s asking the MBU staff to have the baby overnight or asking a family member to help so you can get a cat nap during the day. But perhaps most importantly, I’d like them to know that, although it’s a really tough time, you should never blame yourself. It’s not your fault and there’s nothing you did wrong.

And you can recover – I am proof of that.

7 October 2024

Georgina’s story: I experienced postpartum psychosis while still in labour

At some point, I lost touch with reality and didn’t know what was real and what wasn’t. I was hallucinating and delusional, and I genuinely started to believe during labour that I could speak to the dead and that I too would die after the birth of my son.

I was diagnosed with postpartum psychosis. The tricky thing for me however, was that my psychosis began during labour, which is really unusual. I started acting really out of character – I got aggressive towards the nurses, shouting at the top of my voice. I developed really strong hallucinations and delusions. I genuinely thought my dead family members were in the room with me and that after I’d delivered my son, I’d die too.

Because I was so psychotic, my body just couldn’t proceed with what it was naturally trying to do – after two failed epidurals it was like my thoughts completely hijacked the process, stopping my progress in labour. Unfortunately, this stress caused our son’s heart rate to drop, which led to me being rushed to theatre for an emergency C-section.

Thankfully, Albie, our son, safely arrived. But whilst I was in recovery my psychosis continued to grow. I started to believe that if I slept, I’d die.

My delusion was so strong that I discharged myself from the hospital on the day I had my C-section because I strongly believed I wanted to go home to die. I felt no pain – I was able to stand, I even thought I could run.

After I left hospital, my parents and husband knew straight away that something wasn’t quite right. I kept saying to them, ‘if I sleep tonight, I’m going to die. You want me to sleep, so you must want me to die.’

Luckily my sister-in-law is a mental health nurse who deals with a lot of maternal mental health, so she was called to come and see me. She could tell straight away that I had postpartum psychosis – she said I had the ‘psychotic stare’, where my pupils were so large my eyes looked black. She told my husband to take me to a mental health centre for assessment.

When I arrived at the centre, I believed I was there to be locked up, and I thought my son was going to be taken away from me. I was so desperate to avoid this, I wrestled my husband to leave – and because I’d had a C-section the day before, they chose to let me leave to avoid causing any further damage to my incision. On the journey home I also attempted to take my own life by jumping out of the moving car on a dual carriageway. Luckily my husband contained me, and pulled over safely or else it could have been a very different situation.

Instead, psychiatrists and doctors were sent to my home to assess me. That’s when it became clear that I had postpartum psychosis. By that time I’d still not slept for five days, I’d lost all ability to speak and became very baby-like. I was quiet and could only write things down – it was probably one of the worst days in my life. I wanted to die. It was rock bottom for me.

It was at that point that my husband had to sign the paperwork that would allow me to be sectioned under the Mental Health Act. It was a really hard time for him too.

Postpartum psychosis doesn’t just affect you – it affects the people around you. For my parents to have to see me in a psychotic state – that’s not something any parent should see. And my husband… he was so great, but he went through so much, too. During what should have been a really special time for a new family, he actually had to sign me and our newborn over to social services.

Road to recovery

I was admitted to a mother and baby unit in a psychiatric ward, where I received treatment.

When I arrived, I was sedated and slept for 24 hours – the first time I’d slept in seven days. I began anti-psychotic medication, and slowly started coming out of the psychosis.

The nurses were excellent. And what’s so important about mother and baby units is that they take care of you, so you can look after your baby. They also believe in keeping mothers with their baby through recovery to help with the maternal bond. I was able to get the sleep and medication I needed, so I could care for Albie. During the nights, they looked after him so I could sleep – which is such a crucial part to recovery.

Within a few weeks I was able to care for Albie with less supervision; I was so grateful that my maternal instinct was still there. Despite the psychosis I still wanted to be that new mum, bonding with my baby.

I had my section lifted within three weeks.

Transitioning back to work

I’d never suffered with my mental health before, so it’s been quite an eye-opening experience and I’m still recovering. Over the past 18 months I’ve been receiving support, including therapy and medication. I’ve also found it really helpful to connect with people who have been through this before. And I’m getting lots of support from my friends, family and professional support.

My employer has been amazing too; they’ve been so good to me as I transition back to work. My manager and I have weekly check-ins and there’s been no pressure or judgment – she’s been hugely supportive and flexible to get me back into a good place during my recovery and returning to work. If I didn’t have this support, I don’t think I’d have been able to get back here.

Sharing my story and raising awareness has become so important to me. I don’t want other people who are going through this to feel alone, which is why I want to get the word out on postpartum psychosis.

 

Empowering change

It’s really important to me to use my own experience to help others. That’s why, after my experience of discharging myself on the day of my C-section, I’ve successfully lobbied for the introduction of mandatory mental health assessments of new mums before discharge from hospital following childbirth. This means mums are now screened for maternal mental health issues, including postpartum psychosis, before they can leave the hospital.

 

4 October 2024

WITCHES, a new documentary by Elizabeth Sankey exploring perinatal mental illness

WITCHES, a powerful new documentary film by Elizabeth Sankey, examines the relationship between cinematic portrayals of witches and how we view women, motherhood, and mental health. It shows historical footage across film, television, and culture alongside personal stories.

We’re delighted that members of our community  were interviewed for the project and have their postpartum psychosis stories featured in the film, including APP trustee Catherine Cho and Dr Krystal Wilkinson. Documentary contributors also include Sophia Di Martino, David Emson, Dr. Trudi Seneviratne, Professor Marion Gibson and Shema Tariq.

Catherine Cho says: “I was asked to participate in the film as an interviewee, and I remember being struck by Elizabeth’s passion and dedication to bringing this project to life. Watching the film, I was struck by the parallels in history. Some of the most moving elements in the documentary are listening to the historical testimony of women who were found to be guilty of being a ‘witch’ or a vessel to the devil and realising that their experiences are what we would now know to be mental illness.

“The documentary weaves together Elizabeth’s perspective, her journey from being sectioned to trying to make sense of her experience, her love of cinema, and the stories of others with shared experiences of postpartum mental illness.

“There is a moment towards the end of the documentary where Elizabeth walks hand in hand with her son, and it brought me to tears, that in walking through darkness, through horrors, through a haunted place, we can emerge.

“It is not only a beautiful film, it is an important one, a shared testimony.”

Screenings take place over the next few months in London and Manchester. For further details and updates, check your local cinema listings.

LONDON

Tuesday 15 October 2024 20:30 BFI Southbank

Thursday 17 October 2024 18:00 Prince Charles Cinema

Sunday 20 October 2024 20:45 BFI Southbank

Book tickets here: https://whatson.bfi.org.uk/lff/Online/default.asp?BOparam::WScontent::loadArticle::permalink=witches-lff24&BOparam::WScontent::loadArticle::context_id= 

MANCHESTER

Friday 1 November 18:00 at Home Manchester

This includes a Q&A with writer-director Elizabeth Sankey, chaired by David Cox, Channel Editor at Film4 and co-curator of FilmFear.

Book tickets here: 

https://homemcr.org/film/witches/?utm_source=manchestertheatres 

💜 A note on the film content for our lived experience community:
Some of our team and volunteers have viewed the film and shared that certain scenes may be challenging or upsetting, depending on where you are in your postpartum psychosis journey. Please take care and decide whether it's the right time for you to watch.

If you'd like to find out more about the themes before watching WITCHES, please get in touch with us:

📧 Email: app@app-network.org

13 August 2024

Leanne’s story: Reading other people’s recovery stories has allowed me to process what happened to me

I have always been a worrier, but I felt pregnancy was a particularly long and very anxious time in my life. I only really began to relax towards the end and then suddenly here she was!

She was actually ten days overdue when we toddled to hospital for induction in May 2022. Labour was long, and it ended in a forceps delivery which was difficult.

Post delivery, though, I began perking up. I was in theatre, and, because we love Grey's Anatomy, it was kind of exciting to be there. Plus, I finally got some pain relief. But looking back, it's hard to determine if those feelings were actually the start of my symptoms of postpartum psychosis (PP).

Immediately after the birth, my husband and I burst into tears of happiness. I was on cloud nine, and for a fair stretch of time I rarely came back down. Just over a week after giving birth, I was diagnosed with PP and our world stopped turning.

We had been discharged two days after the birth and were at home for six days. Whilst at home I was struggling to breastfeed and found being a new mum challenging. However, I was in awe of our newborn and could not process the sheer amount of joy and stimulation she had brought to our lives. The first memories of her meeting friends and family were magical and I didn't want to miss a thing. So I didn't. Within the first six days I literally only slept a handful of hours which really took its toll. It's difficult to know if the lack of sleep triggered PP or if the lack of sleep was a symptom of PP. I'm sure this must be a common conundrum amongst other survivors.

It started off gradually but things became rapidly worse.

My behaviour became really out of character, and my husband described me as a different person. I had the energy of a Duracell bunny, talking erratically and making less and less sense as things progressed. My moods were very up and down but, because we were first time parents and had been told about baby blues and hormones, it took us a week to call for help as we thought it must be normal. But I progressively got worse and fluctuated between euphoric highs and tearful lows. I began gathering items for a tool kit in a strange manner which concerned everyone.

When we eventually called NHS 24 they recommended that I should go straight to A&E. From there, I was admitted to the Mother & Baby Unit (MBU) where I stayed with my daughter for the next five weeks, at first voluntarily and then under section.

After entering hospital I declined even further and it was clear that I was extremely unwell. Despite mainly being on a high and euphoric, I was also confused and angry at the situation and responded slowly to medication, leading to the decision to receive Electroconvulsive Therapy (ECT), which was a turning point in my recovery. I began to improve almost immediately - within just two sessions. The effects allowed me to slow down and rest and in turn begin to process things at a more suitable speed.

After both myself and my daughter tested positive for Covid the decision was taken that we would best recover at home. We were close to beginning the transition to home visits and I received great support from the MBU and the Acute Care and Support Team. At the time I was desperate to get home and begin our life as a family of three, however this was just the beginning in accepting what had happened.

I have since struggled a lot with the stigma of having mental health issues which is why I became so interested in raising awareness around the topic and sharing my story. When I was ill I became obsessed with music and the playlist I had prepared for labour. Sadly, we were never able to use it during the birth but, because I have always loved music, I have since found it therapeutic to listen to during my recovery. I have also enjoyed reading memoirs written by survivors as well as other books focusing on perinatal mental health. Reading different recovery stories has been the most helpful thing to process what happened to me in peace and feel like my story and feelings are valid. Despite the challenging symptoms and experiences that I would not wish on anyone, reading that I was not alone and that others had experienced similar things was the biggest help in terms of finding acceptance.

On the ward I regularly put my checkered Vans on (I thought of them as my ‘getaway shoes’) and tried to make a break for it, but in the time that has passed since leaving hospital there have been many days when I would be grateful to go back to the MBU for a break from my head. I wish it was known that if you require admission and some help at this vulnerable time, that its not something to fear - the care and support on an MBU is incredible, in my experience. I will be eternally grateful to the nurses and psychiatric team who looked after my tiny bundle and me - and also supported my husband and immediate family through a critical period. Having no diagnosed history of mental health issues in the past, my experience came as a big shock for us all as we managed new expectations and grieved the newborn period we had hoped for.

I had no idea such vital and important work was going on every day in a hospital, a few minutes away.

Upon my discharge from the MBU, I received leaflets from the charity Action on Postpartum Psychosis (APP). I have since benefited from their online forum, informative website, one to one support, cafe zoom groups and the continual updates on fundraising and positive recovery stories. Speaking to others who have also experienced PP has been really helpful to me, finding a community and others who can relate to my story makes me feel less alone.

We are now thrilled to be raising money for this incredible charity by walking in the Edinburgh Kiltwalk on Sunday 15th September. The walk is a unique way to raise funds for a charity you care about.

And hopefully, our now two-year-old little red head will meet us at the finish line.

To find out more about Leanne’s Kiltwalk fundraiser and to donate, click here.

30 July 2024

Kayleigh’s story: I was so unwell I was completely catatonic and unresponsive. But now I feel like we have the perfect family

When I suffered with postpartum psychosis after having my first daughter Daisy in 2014, me and my family had never heard of this illness. I had never suffered from any mental illness in the past but I was lucky that my family and my midwife knew that something wasn't quite right and I got the help I needed very quickly.

My labour with Daisy was long, painful and complicated which ended in me having an emergency c section. When she finally arrived I was so grateful she was here safe and healthy. I was totally in love with her, it felt like I was in a little bubble. The baby who we had waited so long for was here and life was perfect.

A picture of the author, Kayleigh, holding her newborn baby daughter, Daisy who is wearing a white and red sleep suit and red and black hat.
Kayleigh holding her newborn daughter Daisy

When it was time for us to leave the hospital I suddenly felt a huge wave of fear.

This tiny little baby was my responsibility to keep safe. What if I couldn't do it? What if I forgot something? How could I keep her safe from everything? I remember getting her ready to leave the hospital panicking if I had enough layers of clothes on her, would she be warm enough or would she be too hot, had I put her in the car seat right, was her head supported enough....

When we got home things started to get worse. I couldn't sleep at night thinking about all the things I needed to do and worrying I wouldn't have time to do it. I would have bursts of energy feeling like I was able to do everything at once then I would have times when I couldn't even feed Daisy feeling like I would do it wrong. I started making lists in case I forgot to do things like feed her and change her. I was frightened to bath her in case I did it wrong.

I became very suspicious of my midwife and health visitor thinking that they were coming to take my baby away from me and that they had been planning this my whole pregnancy thinking I was a bad mam. When watching telly I thought I was getting messages warning me that bad things were going to happen, that our family dog would attack the baby.

On advice from my midwife I was taken back to the maternity ward where things got frighteningly worse. I suddenly lost sight of reality and thought I had died during childbirth and that I was going to hell for something bad I had done. I remember screaming out to my husband to help me as I didn't know what to do. I was assessed by the mental health crisis team and the decision was made to section me as by this time I wasn't communicating. I had gone into a catatonic state and I couldn't move my body. I remember being put into a wheelchair and I didn't know where I was going. I felt like I was in a dream and that I needed to fall or jump to wake myself up.

A bed became available for me and Daisy at St George's Mother and Baby Unit in Morpeth so I was transferred there by ambulance. I could see my family around me but they didn't seem like the people I knew and loved - they felt like intruders or actors. I was very suspicious of them thinking they were going to hurt me.

A photo of the author, Kayleigh, holding her baby girl and brushing her hair while sitting on a bed in the Mother and Baby Unit with a pink blanket
Kayleigh and daughter Daisy in the MBU

When I arrived at the Mother and Baby Unit I thought I was being taken to hell and that I would be locked in a dark room forever and that horrible and unimaginable things were going to happen to me. I was still catatonic so in my mind I was dead and that's why I couldn't move or speak. I was given medication to help me get out of the psychosis but I was still unresponsive so I was then taken to another hospital for a brain scan to see if there was anything else going on. I remember being in the ambulance but I felt like it was all fake like they were trying to trick me into thinking it was all real. At this point I still wasn't aware of what was happening to me and I still hadn't spoken for hours. I remember being put into the machine for the brain scan and thinking I was going to be abducted by aliens. I jumped up and this was the first time I had spoken or moved in hours. The catatonia was over but my thoughts were still spiralling out of control.

I was taken back to the Mother and Baby Unit and as I walked down the corridor I could see all my family waiting for me. I could see white doors at the end of the corridor, which were actually fire exit doors, but in my mind they were the doors to heaven and I was walking there to say my goodbyes to my family.

I don’t remember much after that but the medication must have been taking effect as it helped me to sleep for the first time in days.  When I finally woke, I realised I wasn't actually dead and everyone in my family was ok, my baby was ok. I felt like I had won the lottery. The feeling was unreal and I explained to my family what I had felt and thought. It was as if all the craziness had lifted from my mind and I was me again. I was so happy to be alive.

Unfortunately, that feeling didn't last long and I was hit with a wave of crippling depression which consumed my mind. I felt like I had lost my bond with Daisy and I didn't really want to see any of my family apart from my husband Dave.

I thought I would never get better and was going to spend the rest of my life in hospital.

As the days and weeks passed, I was allowed to try an overnight home visit, thinking back at the time I don't feel I was ready for this. The Mother and Baby Unit had now become my safe place. I knew I could look after Daisy there as I had the help of the nurses. But at home it was all on me and I didn't think I could do it. I was right, as soon as I got home the rooms seemed smaller, the fear, the anxiety, the depression it all came flooding back. Then I hit rock bottom, I felt like I didn't want to be here anymore, I wanted to just curl up in a ball on the floor and die. I needed a way out of this. I couldn't see myself getting any better. I couldn't live like this. I thought Dave, Daisy and my family would all be better off without me. I thought of ways to end my life. This was the lowest I had ever felt.

I had relapsed and couldn't make it through the night at home. I broke down and the only option my family had was to take me back to the Mother and Baby Unit.

Over the next few weeks I was helped by the nursing staff and psychologists to put things in place so that I could return home and I did, this time only for a few hours but it was lovely, totally different from my last home visit. I felt like I was where I should be at home with my beautiful little family.

Home visits became more regular and I was now spending a week at home. Everything was starting to click into place and it felt amazing. I finally believed I could be the mam that I had always wanted to be. I was discharged from the Mother and Baby Unit after six weeks and could finally start enjoying normal life again as a family. I was to continue with my medication for 12 months and be supported by a community mental health nurse who would visit me at home. I continued to recover from the illness but did relapse a year later, again out of the blue, but this time I could be supported at home and did not need to be admitted.

In 2017 we decided that we would try for another baby. We knew the risks and that there was a 50/50 chance that I would become poorly again but I was determined to put things in place this time to ensure it didn't happen. I was placed under a consultant who I would see regularly and I stopped my medication. We were lucky enough to fall pregnant quite quickly and plans were put in place for me to try to prevent another episode of postpartum psychosis. I was given the option to return to my medication soon after having the baby. I would also stay on the maternity ward for five days after the birth so I could be monitored, and a bed was even held for me at the same Mother and Baby Unit in case I needed it.

Author Kayleigh in a close up photo with her family of four all smiling at the camera with a blue sky background. Left to right Jasmine, Daisy, Kayleigh and husband Dave
Kayleigh’s family: Left to right Jasmine, Daisy, Kayleigh and husband Dave

 

On 1st August 2018 after the most perfect labour our second daughter Jasmine was born and our little family was now complete. I agreed to stay on the maternity ward for five days after birth as that's when my psychosis happened with Daisy and I was advised if it was to happen again it would be the same time frame. Everything was perfect. I didn't have any of the anxiety or depression that I had experienced previously and we could go home and enjoy life as a family of four.

Eight lovely months passed and we were the perfect family. Then one day the hallucinations came back and I started to see and hear things that weren't there. Having felt like this previously I told my husband Dave that I thought my psychosis was happening again. My family contacted the crisis team and by the time they came to assess me I was catatonic again. I was sectioned and admitted for the second time to the same Mother and Baby Unit.  I have been told by my family that this psychosis was way worse than the first and I'm thankful that I actually don't remember a lot of it. I think my mind somehow blocked all the bad stuff out. It took longer for the medication to work this time and after a while my family were concerned that I didn't seem to be getting any better.

It was agreed by my family that I would have electroconvulsive therapy (ECT) which is a treatment that involves sending an electric current through your brain. This causes a brief surge of electrical activity within your brain and helps to relieve severe symptoms of mental health problems. The treatment seemed to work, and I was again allowed home visits starting off with a few hours, then progressing to an overnight stay. Eventually, I was going home for a full week’s home leave.

As with my previous episode of psychosis, I was discharged from the Mother and Baby Unit six weeks after being sectioned. To this day I continue with my medication as I know this is a huge preventative measure to stop me having psychosis in the future.

Author Kayleigh on the right taking a selfie of her with her husband Dave, wearing a purple APP t-shirt during their fundraising walk.
Dave and Kayleigh on their fundraising walk from Sunderland to the Morpeth MBU

It’s now been over five years since my last psychosis and for the first time I’ve felt ready to share my story and raise awareness of this heartbreaking illness. Me and my husband Dave completed a 27 mile charity walk in May for which we walked from our house in Sunderland to St George’s MBU in Morpeth to raise funds for Action on Postpartum Psychosis.  We left our home at 5:40am and arrived at St George’s at 4:10pm, 27 miles and 10 and a half hours later, greeted at the end by our lovely daughters Daisy and Jasmine which was a very special moment.

We have the perfect family with our two beautiful daughters and because of what we have been through together it makes me even more grateful for what we have. The whole experience has definitely brought us closer together.

6 June 2024

Eli’s story: PP made me miss the first 3 months of being a mum – but we found ways to make up for it

Going home from the Mother and Baby Unit (MBU) was bittersweet. I had missed out on the first three months of being a mum in my own home, but we started afresh, creating a nest, opening presents and taking a short family holiday. It was a truly great way to mark my recovery from such a horrible illness.

I always knew there would be some risk of postpartum psychosis (PP) because I had been previously diagnosed with bipolar. I did all the research, spoke to my doctor and decided to come off my meds while we were trying to get pregnant. When it happened, everything seemed to go smoothly, except in the background, as I have since discovered, things weren’t quite going to plan, as I wasn’t classed as high risk in the system, so my risk wasn’t properly flagged and planned for throughout the process.

The birth itself was simply magical.

I had a rare en caul birth, where my baby boy was born still in the sack, and it was a water birth too. It was a wonderful experience having to break the sack and meet him and, even though this was in the midst of the first lockdown and my partner, James, was only able to be there for the active labour, everything felt right. I was discharged quickly and was home by the following morning.

For the next few weeks I was seemingly quite well, aside from feeling a bit down because I couldn’t have anyone visit and fawn over the baby due to lockdown. However, when he was about a month old I started getting paranoid thoughts, collapsing and having panic attacks. I’ve got a big family and we’re very close so I was calling them all, telling them that there was something wrong with me. I started getting paranoid that James was having an affair and that resulted in me going to stay with my parents for a week.

By this point I hadn’t been sleeping, and I had been off my meds for about a year.

My psychosis quickly intensified, from paranoid thoughts and panic attacks to acting out, believing strange things, praying on the ground and vomiting. I ended up being admitted to an MBU (Mother and Baby Unit) and I was quickly put back on my meds, but it took a little while to get back on track - probably because my hormones were all over the place. I also think it’s quite normal to have a dip when you’re first admitted, and I certainly didn’t do all that well at first. I had to have 24-hour observation so there was always someone watching me which was a bit unnerving. In fact, when I was acutely unwell, in some ways it felt like the end of the world, because I had no idea what was real and what wasn’t.

After a while though I started to improve. I began working more positively with the professionals and getting involved in all the activities on offer – from the sensory room and baby massage, to pampering for the mums, exercise classes, arts and crafts and baking.

I also accessed peer support in the MBU, and I met Jocelyn and Hannah from APP who would pop in a few times a week. We’d have cups of tea and chat and it made such a big difference to me. Finding other women who had been through the same things as me was really reassuring and it gave me so much hope.

In total, I was in hospital for about ten or eleven weeks, and then finally I was able to go home.

I was really excited about getting back home. I was desperate to make my nest with my baby and catch up on all the things we’d missed out on at the start of our parenting journey. It was August so we treated ourselves to a short break to Wales, spending time outside and on the beach which was lovely. And at home, with all our home comforts around us and the new baby presents we hadn’t been able to open when I was so poorly, things were starting to get much better. We started our baby memory book, and I began going to baby yoga classes and meeting up with other mums for short walks outdoors. I was really proud of myself and how far I’d come.

I was under the perinatal team for some time, having a nurse visit each week, but I found this really helpful and we had such a good rapport. If there were any problems I knew I could turn to her. But my recovery was going really well at the time.

Sadly, I did have a brief relapse in 2022. While my bipolar and pregnancy obviously created a risk for PP, it was then discovered that I also had Graves Disease – a hyperthyroid problem that can trigger very similar symptoms to bipolar. I didn’t experience psychosis this time around, but it was an episode of mania that resulted in another hospitalisation. I’ve since found out that hyperthyroidism runs in my family and it can be triggered around pregnancy and childbirth. While it was some time after giving birth that I became manic, I do still wonder if there was a hormonal link.

Since that episode though everything has been managed well and I’m back on my bipolar meds, as well as my thyroid medication.

I’ve felt stable and well and feel really positive about the future.

It was after this relapse and well into my recovery from it that I had a kind of full circle moment. I was thinking about all the peer support I received at the MBU, as well as through the APP café groups I attended after my hospital discharge. I really wanted to give something back, so I applied for a role as an APP volunteer, and then, after some time volunteering, I applied for a job as a sessional peer support worker, which I was offered and still do to this day. It feels amazing being able to pass on that support and help other women.

James and I have decided not to have any more children, which is difficult to come to terms with and in some ways feels like a sort of grief. However, the risk of PP happening again, combined with my age and the fact that I am taking hyperthyroid meds kind of brought us to that conclusion. It’s sad, but I am so grateful for the wonderful family I have.

We’ve had our ups and downs but if anything, this experience has just made us stronger. Coming back from an illness like PP is hard, but we’ve found our groove, and now we’re just focusing on making happy memories together.

4 June 2024

Shaheda’s story: A foot spa on the MBU turned into a really powerful peer support session

While I was unwell and under the care of a Mother and Baby Unit (MBU), I accepted the offer of a foot spa from a lady on the ward. I thought it was just a pampering session to help me feel better but meeting her was to prove far more powerful than that.

Mental health isn’t talked about enough in the Bangladeshi community. I for one had no prior mental health problems and had never heard of postpartum psychosis (PP) until I was diagnosed with it in 2018. It came like a bolt out of the blue and, while my faith and spirituality has always got me through the tough times, I realised I needed more support than ever during that period.

My journey to giving birth wasn’t easy. I had two back-to-back miscarriages and was referred for investigations in 2017. However, the doctor advised us to keep trying, and I fell pregnant again at the start of 2018.

I felt really anxious about it, but Birmingham Women’s Hospital were great, really looking after me and the pregnancy seemed to progress really well. After the first trimester, I started to relax into it.

 

Photo of Shaheda looking out to sea with her pram

 

However, as the birth approached, things didn’t quite go as planned. Three days before my induction date they found signs of preeclampsia, and I was kept in for monitoring. I spent two nights on a labour ward and wasn’t able to sleep due to everything that was going on around me. Once the induction was started it did not progress well, so I ended up having a Caesarean and then my beautiful baby girl finally arrived.

By this point I hadn’t slept in over six days and, looking back, this is when I started to become unwell.

I remember the first morning in hospital after the birth the noises around me felt piercingly loud – cleaning, banging, bins clattering, mops and buckets. My senses were heightened and I couldn’t wait to get home. I was exhausted and completely overwhelmed with emotions.

I thought being at home would make everything OK, but I was still extremely emotional. I was unable to sleep, I struggled with breastfeeding and I felt like a failure.

One night in bed, my husband gave me a piece of Indian sweet that I usually love, but when I put it in my mouth it felt like superglue. I started thinking somebody was trying to poison me and I became really anxious and felt like I couldn’t breathe.

I don’t remember too much about what happened next but my family came round, and they were frantically checking my pulse, my blood pressure and my sugar levels. They then called an ambulance because I was acting so out of character and was in so much distress.

The first time the paramedics came out I was behaving quite normally again – this can happen with PP, where you have these episodes but your behaviours can seemingly return to normal in between. However, I must have got much worse after they left that first time because the next thing I remember is waking up in an ambulance as I was taken to A&E.

I remember feeling like I couldn’t trust anyone - I didn’t even trust my family with my baby and I believed the doctors were all fake.

At that point I was just sent home with medication, but things got much worse over the following days. I became obsessed with cleanliness, obsessed with prayer. I began feeling paranoid, thinking that someone was out to get me, and then I started thinking that my daughter was special and that I had the secret to the universe in my head.

So many things were going round and round in my mind, I felt scared all the time to the point I couldn’t go to the bathroom alone. I couldn’t eat because of weird tastes in my mouth. I kept trying to connect dots and draw special meanings from everything around me. I felt like my brain was firing on all cylinders; that I had a higher knowledge and special abilities.

I ended up going back to the GP but this time it was because my daughter had some gastric problems. But while I was there, I had another episode, throwing a cup of water on the floor and demanding to see a different GP.  The doctor realised I was really unwell and referred me to mental health services.

By the Monday, when my midwife and health visitor came, they found me dancing around, falling on the floor and trying to hide under the sofa. It was this episode that sparked the emergency admission to a general psych ward. It was awful – my thoughts were racing and it felt like the end of the world. I thought I was going to be locked away forever.

After two nights on the ward I was referred to a Mother and Baby Unit (MBU). It was Christmas Eve when I was admitted and most of the patients had gone home. This made my beliefs about the nurses and doctors not being real even more intense.

But slowly, I started to have this realisation that being in hospital was indeed real and just what I needed. I picked up a leaflet in the corridor that explained what PP was and I started googling it and reading about it on my phone. It was all starting to make sense.

At the MBU I was reunited with my daughter and my husband was able to come and help too. Although I was reluctant to interact with other patients, I bonded with some of the staff. I started journaling, noting down dates and times, setting things out chronologically. I started following a routine and this helped me to stay calm. Simple actions like waking up and showering, making breakfast, and keeping to a set pattern really helped my recovery.

Something truly wonderful also happened while I was staying on the MBU.

The lady who was there giving manicures and pedicures to patients treated me to a foot spa, and it was while we were chatting that she told me she also had experience of PP. This was the first time I heard somebody else talking about going through exactly what I had. I was blown away by how much we had in common. She was Greek so we shared some of our cultural experiences about mental health awareness in our communities too. Just talking about those paranoias and fears that went through my head was so helpful.

By the February, after a few days at home, I was discharged into the community team. By the September I went back to work. I was more or less fully recovered. I gave up my psychology sessions because I felt well enough but I do regret not talking about it more.

Thankfully, the lady I met on the MBU sent me some leaflets about APP and the support on offer. I didn’t reach out right away, but when I did, I met Natalie and had some great peer support sessions over a coffee. It was a while after that when APP’s CEO, Jess, asked me if I’d like to get involved in the charity’s diverse communities programme and I haven’t looked back.

I’m now a peer support worker helping other women and hosting the Muslim women’s café group, as well as raising more awareness of PP in Black and Asian communities. I really want to get people talking about PP. I, for one, believe if I had known about PP I could have got help sooner.

I think speaking to others is really important because you realise that you’re not alone. My husband and my family have been brilliant, especially my husband who bore the brunt of everything. I can’t thank him enough for all the support he gave me. But it’s also good to talk to someone who has been there. I urge anyone who has been through PP or is recovering from it to reach out for support. Don’t struggle on alone.

5 April 2024

Jenny’s story: Postpartum psychosis left me with PTSD – earlier diagnosis might have stopped this from happening

PTSD is so often associated with external traumas – people experiencing a serious incident such as a car crash or serving in a war zone, for example. But while PTSD is a mental health problem in its own right, I discovered that it can actually be brought on by other mental health problems – in my case postpartum psychosis.

In April 2020, I gave birth to my first baby. Within days, I was presenting with signs of postpartum psychosis (PP) – a serious postnatal mental illness that affects around 1,400 women every year in the UK.

Neither myself or my wife had ever heard of PP, so we had no idea what was happening or indeed what to expect – but it was an incredibly distressing period.

When I gave birth, we were in national lockdown. This meant that I was alone most of the time as I wasn’t able to have any visitors. I remember that I wasn’t eating properly, and it got to the point that I simply couldn’t stomach any food or drink – even a little sip of water would be spat straight back out. I was becoming really anxious and frightened as well and I wasn’t sure why, but I was constantly pacing the room alone.

After a while I started watching films on my phone as a distraction, but the sounds from the films became really overwhelming and disturbing, so I stopped watching almost completely. I was also struggling with my memory and wasn’t able to recall simple instructions the midwife was giving me, and my moods became erratic too. I would be really low in the early part of the day, but by around 4pm each day I became really wired, like I was buzzing on a high level of adrenaline.

I started believing strange things, for example that the painkillers I was taking were building up in my throat, and I got songs stuck in my head, tormenting me as I tried to sleep. But sleep simply wasn’t happening, so I would just sit awake all night staring at my baby daughter. One night, I felt so overwhelmed that I asked the nurse to take my baby away for a while. I don’t think I’ve ever gotten over the guilt that I felt about that, and it formed a big part of my illness because I was so ashamed by it.

When I went home from hospital, friends started worrying because my text messages were a bit strange, and I refused to let anybody else, including my wife, hold my daughter. I started experiencing suicidal thoughts, stopped speaking to people and refused to leave the house. There was lots of pacing and I had really bad pins and needles and I felt very confused.

After many sleepless nights, extreme distress and being unable to properly eat or drink I was diagnosed with PP. I was so terrified of going back into hospital though, especially as it was during lockdown, so I was treated at home by the community team.

Eventually, the medication I was given started to work and the PP symptoms began to subside. However, even after all the psychotic symptoms disappeared, I realised that there were certain triggers and times of the year that made me feel really anxious and unwell again.

April is a particularly difficult time for me.

So many simple, everyday sights and sounds take me back to the feelings I experienced when I was unwell in 2020. From the Spring sunlight streaming in through the window to the birds singing in the morning and even the bin men coming to collect the bins - all these things trigger memories of postpartum psychosis and the distress and shame I was feeling at the time.

Over a year after experiencing PP, I realised that what I was now going through was PTSD connected to those traumatic memories of being so unwell and anxious. I found a trauma therapist who specialised in birth trauma, and we spent some time looking at anxiety and how to deal with triggers – as well as the worries about future triggers which form a big part of my PTSD. We also did some relaxation exercises and some counselling linked to the guilt I was feeling about being so unwell and asking the midwife to take my baby away from me overnight. I also tried some EMDR Therapy (Eye Movement Desensitisation and Reprocessing which helps you process traumatic memories). Combined, all these treatments, as well as moving house which was incidental, helped me to put some distance between me and my experience of PP.

Since having these treatments, Springtime last year was much better – I wasn’t completely trauma and anxiety free, but I was definitely in a better place.

I am still a bit anxious about this year’s change of season being just around the corner, but I am hoping it will be better still and am prepared to do more work with my therapist if I need to.

I still have feelings of guilt and regret relating to my experience of PP, but I have accepted that it wasn’t my fault and it doesn’t make me a bad mum. And our family, which has since grown adding two more children to the mix, is so close and bonded.

I don’t think many people realise that experiencing a mental health problem can actually trigger PTSD longer term. The symptoms of psychosis might have gone long ago, but I do have to keep working at the residual trauma of it all and learning how best to manage the triggers. It’s definitely getting better, but I think it’s something we should talk about more, and I also think that, if there was more awareness of PP amongst the general public and health professionals, I could have been diagnosed earlier, which may have decreased the intensity of the trauma I experienced.

One thing I have learnt throughout all this is that it’s so important not to minimise what you’re going through. The sooner you can get help and support the less traumatic the experience will be.

5 February 2024

Name revealed for new Mother and Baby Unit

The name of a new regional Mother and Baby mental health unit has been revealed.

Preparatory building work officially started in November on the £7.5m single storey building, which is the first of its kind across Cheshire, Merseyside, and North Wales.

The name ‘Seren Lodge’ has been chosen by Mums who have experienced maternal mental ill-health and features a nod to the new cross-border partnership with NHS Wales.

 

Nia Foulkes, APP storyteller, said: “It was important to the group to choose a name which signified hope and positivity, but also something which was welcoming to families no matter where they live. The name ‘Seren’ translates as ‘star’ in Welsh and ‘lodge’ felt homely and not clinical at all, which we thought was perfect.

 

Sarah Dearden, APP storyteller, added: “Having previously been admitted to a unit which was really far away from home, it is particularly exciting to see the new site as it today and know that our ideas and designs are being put into action. Units like this make a huge impact by keeping babies and their mothers together at a crucial time.”

 

The unit is a result of a partnership between Cheshire and Wirral Partnership NHS Foundation Trust (CWP), Betsi Cadwaladr University Health Board (BCHUB), Mersey Care NHS Foundation Trust, NHS England and NHS Wales and will see a disused training centre transformed into a new specialist, eight bedded unit for perinatal mothers, babies and their families. Once open the unit will work alongside the existing regional Community Perinatal Mental Health service who already care for thousands of women every year.

 

The occasion was marked with a special ground-breaking ceremony. Mums from across the region joined members of the clinical, construction and project teams to place the first official spade in the ground.

 

Preparatory work on the project is progressing well with both external and internal designs agreed, enabling building works underway and recruitment for the new centre set to begin imminently.

 

 

 

Suzanne Edwards, CWP director of operations and deputy CEO, said: “The new unit will support new and expectant mothers in a therapeutic environment which has been purposefully designed for people experiencing maternal mental health difficulties, such as post-natal depression, psychosis or a relapse of an existing mental health condition.

“It is estimated that one in four women experience mental health problems in pregnancy and during the 24 months after giving birth. Whilst only a small number of women will need admission to a specialist unit like Seren Lodge, I’m delighted that we’ll be able to offer this care closer to home, in addition to the thousands of families we see in the community every year.”

 

 

A group of people in hi vis jackets and hard hats, holding a spade. The photo includes APP storytellers Sarah (front row, second left) and Nia (front row 3rd right), along with APP’s national co-ordinator Hannah Bissett (front row 2nd right) join the team to celebrate the groundbreaking
APP storytellers Sarah (front row, second left) and Nia (front row 3rd right), along with APP’s national co-ordinator Hannah Bissett (front row 2nd right) join the team to celebrate the groundbreaking

 

 

Dr Alberto Salmoiraghi, medical director for Betsi Cadwaladr University Health Board’s Mental Health and Learning Disabilities Division, said: “We’re delighted that Seren Lodge will enable high quality specialist care to be provided to new and expectant mothers from across North Wales, Cheshire, Wirral, and Merseyside in a purpose built, recovery focused environment.

“Women from North Wales who have a lived experience of perinatal mental illness have played a central role in designing this new service and we’re very pleased to see that this is reflected in the name of the unit. We look forward to continuing to work with our partners in Cheshire and Wirral Partnership NHS Foundation Trust to deliver this much-needed unit.”

 

Once open, Seren Lodge will provide a home from home for women and their babies and include a nursery, sensory room, and multiple lounges to support quiet time and family visits. Having access to outside spaces is central to the development with two garden areas and a walking pram loop, with families benefitting from close access to the Countess Country Park.

 

Dr Jessica Heron, APP’s chief executive, added:
“We are so delighted to see the progress being made. The new unit will mean new mothers across North Wales, Cheshire and Merseyside with severe postnatal illness will be cared for appropriately and supported with parenting, without having to travel miles from their families to other areas of the UK or ending up in adult psychiatric wards separated from their newborn. APP has been working with the team to ensure the voices of lived experience are heard throughout the development process, inputting into the design and functionality of the MBU. APP volunteers are keen to ensure the unit meets the needs of families from across North Wales and Cheshire and Merseyside.”

 

Seren Lodge is set to open next winter.