All posts by Lucy Nichol

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.

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.

17 January 2024

Francoise’s story: It was 24 years before I spoke to someone else who experienced PP – it’s never too late to access peer support

It took me 24 years to access peer support through APP after my experience of postpartum psychosis (PP) in 1998, but it has completely changed my life. I went from being a survivor to actually living my life, and the self-stigma I used to feel has diminished dramatically.

We had no idea what postpartum psychosis was.

I had never heard of PP when I was diagnosed with it after giving birth to my first child. While I’d had a fairly difficult birth, my pregnancy was fairly easy, and I had lots of support from my husband and family. In retrospect, however, my elation and need for perfection after the birth was a definite warning sign.

I wasn’t sleeping much but I figured that was normal for a new mum. One night, however, I had this terrible feeling – like I was being struck by lightning. It was like some kind of out of body experience and I became obsessed by the idea that my daughter was the second coming of Christ. I spoke to my husband and my mum and they both knew something was very wrong.

Sadly, however, even though my husband was calling our GP surgery, nobody spotted the problem. After four different GPs saw me and suggested I simply had baby blues, we eventually saw a psychiatrist who diagnosed me with PP. I was then rushed to hospital by ambulance and spent a night on a mixed ward.

My mother-in-law was also incredibly supportive, and she had trained as a nurse and had worked in midwifery so she knew about Mother and Baby Units (MBUs) and said that I needed to be treated at one. She and my husband pushed for a transfer and I was thankfully given a bed on the MBU in West London.

I was very delusional by this point and I ended up staying there, with my baby daughter Eva, for three months (although during the final month I was able to go home for short periods of time).

It was a really traumatic time. I wasn’t really aware of how unwell I was, and I found it incredibly upsetting that I was unable to breastfeed due to the medication I was on. It felt like a primal wound not to be able to breastfeed when I really wanted to.

My recovery felt quite sudden.

Although it took me a long while to get better, I remember waking up one day and feeling suddenly quite different. I was still incredibly anxious though and felt frightened at being left alone with my baby. And I was feeling very ashamed because I didn’t fully understand PP and knew nobody else who had experienced it.

Looking back, I think I was looking after my baby girl really quite well, but my lack of confidence was so low. It was a different time back then in the 90s, and I had no access to therapy or peer support, so I felt very isolated. However, I carried on, feeling more like a soldier than a mum.

I did access a local mother and baby group and made some good friends there, but I felt so ashamed talking about what I had gone through. The two friends I made through that group were so compassionate though, and my experience of PP didn’t put them off being my friend.

I gave birth to a second child, a boy, and it all went really well. I had been told that I was at risk of another episode of PP after giving birth again, but nobody said there was a risk of a psychotic episode months later. And this is precisely what happened when my little boy was three years old . I was eventually diagnosed with bipolar and experienced a few more episodes and hospital admissions over the years which deeply affected me. I felt as though I had this awful illness that I was stuck with forever, and I was overwhelmed with feelings of hopelessness.

Thankfully, I haven’t experienced another episode since 2015, but it’s not just the time that has elapsed that has helped me come to terms with my illness. It’s the peer support that I found through APP that has really helped me to feel more hopeful and less alone.

It was 2022 when I found out about APP’s peer support.

I reached out to APP and the first person I spoke to who had experienced PP was Ellie, and it was such a moving moment. After all these years, I’d finally found someone else who had been through what I had.

It was like after all these years, and this long ordeal that felt so hard and endless, I was able to see that there was light at the end of the tunnel. My husband and I also went along to an APP café group and we met all these beautiful people. They were much younger than me and my husband, but we both sat listening to them with tears in our eyes. We had never cried about the experience before. It was like relief. Finally, we could face what had happened and address it in a more open way.

I think in all the years previous to this I had been so determined to get through life that I forgot to address it, to face it head on. Now I am doing it all with my eyes open, with less shame and with so much more support. I always had my husband, my family and the brilliant staff at the MBU. But being with others who have been where you are is so powerful.

My daughter Eva is now 25 and she came along to one of the meetings too. They can help all family members – whether you have experienced PP yourself, your partner has or your daughter or parent has.

Now I feel like I can give something back, I can share my story so that other women going through this won’t feel as alone as I did.

There’s a dangerous myth about perfection in motherhood – and peer support reminds us that nobody’s perfect and that if we are struck by postnatal mental illness that is no reflection on who we are or how good a mother we are.

The illness is the illness, it is what it is, but the stigma and isolation need to be worked on. I was unlucky to get the illness, but I was lucky to have my husband’s love and the support of others. I feel very lucky and privileged in that sense and I don’t want young women to go through the same isolation that I did for all those years.

But I also think it’s important to mention that it’s never too late to benefit from peer support. Whether you’ve just experienced PP in the last year, or whether it’s something that affected you many years or even decades ago, reaching out and hearing from others is a comforting and life changing experience.

Don’t hesitate to find your community. It really has helped to change my life.

30 October 2023

Natalie’s story: If I had known what postpartum psychosis was, I might have asked for help.

I knew there was a possibility that I might get postnatal depression after giving birth and that really scared me. But nobody ever told me about the possibility of developing postpartum psychosis (PP).

In 2013 I gave birth to my beautiful daughter Maya. Everything felt amazing - almost magical. It felt like a miracle giving birth to this precious baby and I just couldn’t believe I was now a mum.

But things began to unravel really quickly, and I became very unwell.

Looking back, the first sign of PP for me was extreme happiness. Yes, you may think that is completely normal, but I was actually hysterically laughing at times while watching my baby. My mood felt high, as though I was drunk with excitement and my whole body felt like it had been pumped with adrenaline.

My mind and thoughts began to race constantly. I was speaking to anyone who would listen but I wasn’t making sense. It was like my mind was too tired to think but the words continued to jumble out of my mouth.

I began to feel stressed about the aftercare I received in hospital after my baby was born. The experience would play over and over in my mind so I told a midwife who suggested I write everything down.

Each day passed and new topics would pop into my head. I felt like my brain was going to explode and I began writing down all of my thoughts, feelings and ideas into a long essay. At one point I believed I had found the answer to why so many mums were getting postnatal depression, feeling suicidal and having their babies taken away.

However, deep down I knew that something wasn’t quite right. So when a midwife came to visit me at home, I mentioned that I felt like I was hallucinating. I also told her that I hadn’t slept in days and had too much energy. To me she seemed dismissive – or maybe she hadn’t heard me. I’m not sure but nothing much was said about it.

Because the midwife had a bad cough when she visited, I became anxious that she had passed an infection on to my baby. Worse still, I started to believe that this midwife would go back to the GP practice and infect all the pregnant women and newborn babies there. I believed it was my mission to stop this from happening by putting in a complaint and trying to close down the labour ward to stop the infection from spreading.

My mind had become delusional.

Around this time, a midwife mentioned to me that they would be improving their labour support and that any suggestions from new mums would be great to feed into their next meeting.

My brain misinterpreted this information completely. I believed that The Labour Government wanted new mums to come to a special meeting to discuss any changes we would like to see for women going through labour. I was excited about this high-profile opportunity which was very unlike me as I am usually quiet and certainly not someone who would enjoy public speaking! However, I decided I would present my findings on the essay I completed, believing them to be of great importance.

I then started to become extremely paranoid about the midwives at the hospital and believed that they were conspiring to stop me from speaking to the government. I was scared that they would falsely claim that I was mentally ill and shut me in a psychiatric hospital and take away my baby.

I was so anxious that this was going to happen that I packed my suitcase on several occasions, wanting to take myself and Maya to a secret location where we would not be found.

Then, while visiting my Nepalese mother-in-law, she noticed I was acting strangely and called a local witch doctor to perform a spiritual ritual to remove evil spirits from my body. It prompted me to suddenly start believing in the Christian Faith and I visited the church a few times - maybe as a way of getting help. But this was short lived and I did not return.

I also became concerned that the midwives were watching or filming me through the TV. So I picked the TV up and turned it around. I began to feel so scared to be left alone with my baby and begged my husband to take more paternity leave as his two weeks off were coming to an end.

I remember hallucinating when I was watching my daughter and I thought I could see her eyes change. While sleeping I could also see something black curled up at the side of my bed which I believed to be the shadow of another baby.

Road signs started to have deep personal meanings, and numbers started to pop into my head. I felt as though I was being given the winning lottery numbers so went out and bought a ticket. Of course I didn’t win!

Because of my paranoia about the midwives, I called up my work and asked a colleague for a character reference, thinking this would save me from being admitted to a psychiatric hospital. My colleague must have thought I was acting very strangely so they called the mental health team.

The perinatal mental health team got involved at that point and a doctor came to visit, diagnosing me as having experienced a hypomanic episode. I gave part truths of my symptoms as I thought if I was completely honest about what was happening they’d take me to a psychiatric hospital.

In the end, I didn’t go into hospital or receive any treatment. My illness lasted around three weeks but I was lucky – it could have been so much worse.

Four years later, I realised that I was actually suffering from postpartum psychosis – yet I refused to share that realisation with the midwife during my second pregnancy out of stigma and fear. However, I reluctantly admitted my hidden illness during my third pregnancy to protect my children should I experience PP again.

There continues to be huge stigma surrounding mental illness and it’s so difficult for mothers and family members to come forward and ask for help. After my experience of PP I have never felt the same and went on to battle postnatal depression and anxiety after having my second and third child. This battle continues to this day, but I have recently found comfort in the church to cope and heal.

It pains me to see so many stories of mothers dying by suicide - so much more awareness is needed to increase knowledge of this often hidden and misunderstood illness and the devastating outcomes that can happen when people don’t get help.

I hope that sharing my experience will play a part in this awareness. I refused help because I was scared. But I’ve learnt that it’s important to be honest with the health team if you are experiencing any symptoms which are out of character. They are there to help new mums – not the opposite. I know it is a very scary experience to go through but getting help is vital for yourself and your baby.

Stock photo of baby’s hand by Aditya Romansa on Unsplash

7 September 2023

APP calls for more support for maternal mental health this World Suicide Prevention Day

This World Suicide Prevention Day (10 September), APP is calling for more awareness and support for perinatal mental health as maternal suicides continue to devastate families around the world.

Suicide accounts for around 20% (1 in 5) deaths in the postnatal period worldwide. Before APP existed as a charity, postpartum psychosis (PP) was responsible for almost half of all maternal suicides in the UK. While there has been a sharp decline in PP related deaths over the last decade since the charity’s inception, numbers have been on the rise since the pandemic.

Dr Jess Heron, CEO, Action on Postpartum Psychosis, said: “Over the last decade, national awareness of PP has improved, health professional training increased, we have more Mother and Baby Unit (MBU) beds and better support services for women struggling with PP.

“But we are concerned that, following a decade long decline in PP related deaths, we have recently seen an increase in bereaved families coming to APP. This rise in PP related deaths has multiple and complex causes that need to be explored and responded to before more women’s lives are tragically and needlessly lost. In the meantime, we all need to know how to look out for PP in our loved ones as they start their families.”

PP is a serious but eminently treatable perinatal mental illness that affects around 1400 women every year in the UK. It occurs in the days, weeks or months after birth, and should always be treated as a medical emergency, with swift admission to a specialist MBU wherever possible.

Symptoms might include hallucinations, delusions, severe confusion, mania and agitation. Early warning signs might include feeling overly excited or elated, being unable or not wanting to sleep, becoming paranoid or anxious, extremely active or feeling like ‘super mum’ or as though everyday events on the TV or radio have special personal meaning.

Earlier this year in Northern Ireland – where there are currently no MBU beds – a coroner ruled that the tragic death by suicide of Orlaith Quinn, who was suffering from PP, was both foreseeable and preventable. Spotting the signs early and arranging for an emergency referral to a specialist MBU is paramount in preventing PP related deaths, and yet there is no mandatory training in PP for health professionals, antenatal education rarely includes mention of awareness of PP, and there is a shortage of beds across the UK – particularly in NI, Northern Scotland and North Wales.

Dr Heron added: “All PP-related deaths are preventable. But we need the right treatment pathways in place – and healthcare professionals, be they GPs, crisis teams or first responders - need a basic awareness of the signs and symptoms so women and their families can be supported as a matter of urgency. That’s why we are encouraging participation in our short training programmes. Having just a basic knowledge and some understanding of what to look out for could save a life. And that is no exaggeration.”

Free webinar for health professionals

In light of this, APP is hosting a Memorial Lecture in October, in memory of Alex Baish, a teacher and new mum who died while experiencing the symptoms of PP last year. Taking place on Wednesday 18 October between 12pm and 1.30pm, the free webinar is aimed at GPs, midwives, antenatal educators and frontline responders. The event titled “Essential Knowledge for Preventing Maternal Suicide” will describe the symptoms, red flags and actions needed to support and protect women who develop the condition and includes a Q&A with speakers and APP’s clinical, academic and lived experience experts.

For more information or to book your free place click here or email training@app-network.org

Photos by Hollie Santos on Unsplash and Andrae B. Ricketts Instagram:https://www.instagram.com/alttr_photography/

26 July 2023

Samantha’s story: I was diagnosed with schizoaffective disorder after PP - but it’s not the life sentence I thought it was going to be

I’d never experienced any real mental health problems prior to being diagnosed with postpartum psychosis. However, six years later, following another psychotic episode, I was diagnosed with schizoaffective disorder and told I’d need medication for life. But after learning how to better manage my health and wellbeing, I’ve been symptom-free for over seven years. Now, I want to inspire others by showing that, despite your diagnosis, you can go on to live a healthy and happy life.

In 2005 I gave birth for the first time. I had quite a large baby - he was nearly 10 pounds and, following a forceps delivery, I lost a lot of blood. It was a terrifying time, I had to have a blood transfusion, I hadn’t slept for three days straight before the birth and I really believed I was going to die.

Looking back, it definitely felt as though this trauma marked the beginning of my mental health problems.

After the blood transfusion I could feel that something wasn’t right. I even joked that they’d ‘given me the blood of a mad man’. They wanted me to see a psychiatrist at this point but I denied that there was anything wrong with me and they let me go home with my baby.

After getting home my family became really concerned. I trashed the house and experienced visions, so they got the mental health team involved and I ended up being sectioned.

My memories of that time are still quite hazy and I feel I have blocked a lot of it out as a protection mechanism, but some of the visions I experienced are still very vivid. I am certain I was never suicidal and I didn’t have any worrying thoughts about my baby, but things definitely weren’t right with me.

Unfortunately, there wasn’t a Mother and Baby Unit (MBU) nearby and my then husband had to make a decision for me to go into a general psychiatric ward, as I wasn’t able to articulate myself how I wanted to be treated.

My experience on the mixed ward was not a good one, and there were some awful incidents that traumatised me. I wasn’t sleeping and was continually walking around the wards apparently putting myself at risk amongst some of the unwell male patients. I remember being restrained and put in seclusion on more than one occasion. I also felt uncomfortable when there were usually just male members of staff on duty especially at night. I had already had a traumatic time giving birth and all of this just added to the distress. This would not have happened had I been sent to where I should have been – an MBU. I ended up staying on the general ward for 28 long days.

I was told that there was a 50% chance of me getting PP again if I had another baby. However, 19 months later, having given birth to my daughter, I felt more prepared.

I had a planned c-section, knew what to look out for and felt more supported. I had a mental health team keep an eye on me throughout the process but refused any type of medication. Thankfully, I didn’t experience PP following my daughter’s birth.

However, after being well for six years, I experienced a psychotic episode, which I believe was linked to the trauma and I ended up back in the psychiatric unit for 28 days again. This was in 2011 and between then and 2016 I ended up being sectioned four more times for subsequent episodes.

I was initially diagnosed with bipolar disorder and then told it was actually schizoaffective disorder which was a real shock as there is so much stigma attached to the label. My family were told that my condition was so severe I would need medication for life, which really affected me as I had always preferred a holistic approach, so I kept stopping the medication they supplied me with. Because of this they were unable to trust me and had to give me monthly injections which I also found traumatic.

My last episode was in 2016 due to a lot of stress in my life within a short period and I was hospitalised for three months. During that time my mind and body totally shut down and I couldn’t communicate with anyone. Luckily, this time, I was in a women only ward.

After this last event I was referred to an extremely good NHS psychiatrist who did not believe that everyone with this condition needed to be on medication for life. He worked with me over a long period of time and carefully weaned me off my medication so that by 2019 I was medication free. It was at this time I decided to work on healing myself and dealing with past traumas through reiki and other holistic therapies.

My experiences inspired me to want to give something back to others, and I now work full time supporting adults with learning difficulties.

Another big achievement was buying my own house in 2020 – something I never believed would be possible.

There’s a lot more to my story but for the last seven years things have been great. I have had my ups and downs like everyone else - especially during Covid and working in a care home. I have dealt with a lot during this time but have managed to stay well. I really want to express that a psychiatric diagnosis doesn’t mean you are written off and it doesn’t have to be a life sentence. I am now leading a normal and happy life and in some ways, I wouldn’t change a thing as it’s made me the strong woman I am today.

28 April 2022

Anneka’s story: "The mother and baby unit was incredible, I owe my life to them".

In March 2021 I gave birth to a perfect little boy called Ralph and my family was complete.

I had a very easy pregnancy and loved every minute of it, I couldn’t wait to be a Mum. After a short stay in hospital because Ralph had an infection, it was time to come home. Looking back I wasn’t right from the moment I got home but we just thought it was an extended set of the ‘baby blues’ - as did the midwife who came to see me.

Shortly after being home I was terrified someone was going to take my baby from me, that the house had to be tidy and if it wasn’t something really bad was going to happen.
I couldn’t remember anything and had to carry a notepad with me at all times to write down everything I had to do or had already done, from Ralph’s feeds to nappy changes.

The final straw for my husband and family to intervene was when I started to open presents and cards and couldn’t remember who anybody was.

My husband, Laurence, decided I needed medical attention ASAP but there was no chance I was going back into hospital and leaving Ralph. He told me I had a water infection and just needed to go in for some antibiotics so I agreed. Getting me into the hospital was very difficult as, by this time, I couldn’t remember anything about Covid and didn’t understand why I needed to wear a mask. I was taken straight to A&E where I was asked a series of questions which I couldn’t answer, including which day it was and who the prime minister was. By this point I had started to hallucinate and thought that every doctor was against me. The police were nearby with another patient and seeing them made me think that they were going to section me.

I ended up staying in hospital for a few days having all sorts of tests to rule out anything medically wrong with me before the psychiatric team would get involved. By this point my husband had found out about postpartum psychosis and that the best place for me would be a mother and baby unit.

By now I was very unwell and believed that I, and the midwife looking after me, had been arrested for committing a terrorist attack on the hospital. Every nurse or doctor that came to see me I thought was a member of my family or friends. Laurence was bringing in Ralph everyday so we could continue to bond, but by this point I thought Ralph had died so this became quite stressful. I believed my room was under surveillance and armed police were outside my room. When my Mum came to see me I thought our meeting was being broadcast on national TV. It all seemed so real.

The day before my 30th birthday I was transferred by ambulance to a mother and baby unit.

The first few days in the mother and baby unit I didn’t speak, I spent my 30th birthday mainly in my room believing I was still under arrest and my room was a prison cell. By this point the radio had started speaking to me and I couldn’t watch the TV because I believed that it was still covering the terrorist attack I’d committed. The staff were incredibly patient and understanding.

I was extremely lucky to get a place at a mother and baby unit close to home and my husband visited us every day. I remember so clearly asking him when we first arrived “How long will I be here?” to which he replied “it normally takes 6-8 weeks for people to recover.”
3 months, a relapse and being put under section later we finally returned home.

The mother and baby unit was incredible, I owe my life to them.

Without them who knows what would have happened. Every member of staff helped myself and Ralph bond through my recovery and supported my whole family. I also made some friends for life in the other mums that I speak to most days now. We were thrown together and have all been through such an experience together, I will be forever grateful for them.

I remain on medication for my diagnoses and am currently being supported by the wonderful Perinatal Mental Health team and the Early Intervention for Psychosis team who I see every other week.

Postpartum psychosis is scary and can affect anyone, including me who had no mental health problems in the past. My advice for anyone experiencing it now is, you will get better, take the support and treatment given to you. It’s helped me to put life into perspective and know what’s important. I’m not angry it happened to me, it’s part of who I am and now I want to give back to all the people who helped me recover.

27 April 2022

Jade’s story: "Awareness is so important".

I finished work for my maternity leave in February 2020, just before the lockdown. My pregnancy had been smooth but the last few weeks were awful. He was ten days late and I was just so ready for him to come out. I wasn’t sleeping, I had a 72 hour labour, and I had to switch from having a water birth to going into a labour unit because I got to around 4 or 5cm and nothing was happening. Eventually, I went into hospital and had an epidural and forceps delivery.

When my baby was born he was immediately taken away. During the delivery his heart rate had dropped so he had to be put on an incubator in the neonatal unit two floors up.

During this time I started to feel like there was something wrong with me. I wasn’t sleeping well and something just didn’t feel right so I told the nurses. They reassured me that it was probably all normal, I’d been through a traumatic birth, etc. But the sleep wouldn’t come, and I started thinking strange things and not wanting to be around my family (other than my husband) which wasn’t like me at all. I was just pacing around the hospital day and night feeling anxious.

I became really distressed and starting thinking that if I fell asleep I would die. That’s when things really hit me.

I began seeing and hearing things, with imagery of heaven and hell and other religious visions playing a big part in it. I also thought that my own body was trying to kill itself which was terrifying. Plus, I kept thinking that I could hear my baby crying which was really upsetting. But I couldn’t have heard him because he was so far away.

My husband was really worried about me and kept speaking to the nurses and doctors, but the problem was that I sometimes appeared well and lucid when they checked on me. I finally agreed for my mum to come in and see me and that’s when I told her about my fear of dying if I fell asleep.

The hospital then moved me into my own private room because I was in so much distress, which I think they thought might help the other mums around me as well. They allowed my mum to stay over night with me too and, meanwhile, my husband was still urging them to get me some more help, because he knew there was something seriously wrong.

The hospital, however, suggested that I had the baby blues and at one point even suggested I was ready to go home! So my husband did his own research and found out about postpartum psychosis. He recognised the symptoms in me straight away.

He’d read about Mother and Baby Units (MBUs) and reached out to the one in Chorley not too far away. I was so lucky that they sent somebody to see me because, just prior to this, the hospital were considering sending me to a general psychiatric ward, which would have meant being separated from my baby.

I was transferred to Chorley MBU eight days after giving birth and I am so grateful that I got a bed there.

In those first few days I was really anxious. I didn’t know what was happening to me and I’d been googling things like schizophrenia, personality disorders and bipolar. I also remember googling ‘will I die if I have a mental breakdown.’ It wasn’t until I was settled in the MBU that I first read about postpartum psychosis in one of the leaflets they gave me, which also talked about how treatable it was. It was such a relief to know what it was that was happening to me, and to know that I could recover from it. Plus, I knew at that point that I was absolutely in the best place.

I was given anti-psychotic medication and the hallucinations stopped and I started sleeping again. But, after a while, I started to feel really unhappy and detached from my baby. I felt kind of dissociated from him and from being a mother. I wasn’t actively suicidal, but I felt like I didn’t want to live. That’s when the psychiatrist started discussing postnatal depression with me, and I was prescribed with additional medication.

Prior to this I hadn’t experienced any mental health problems at all. In fact, neither had my husband, so we were both really unprepared for it.

I kept telling the MBU nurses that I might be the only one who doesn’t recover from it all, because I really couldn’t see a light at the end of the tunnel, but they kept reassuring me. They told me to distract myself, to focus on my baby, and told me that it does take time to heal.

I also met Jocelyn, APP’s peer support worker, on the ward, as well as other mums who had experienced PP and recovered and that really helped me. To know that there are other mums out there who have gone through these same experiences really makes a difference.

Finally, by the back end of April, I started showing signs of getting better and they started talking to me about going home - just for a couple of hours at first. By this point I was very detached from the outside world so it was really daunting but I did go home for a little bit which felt strange.

I was finally discharged fully on the 21st May 2020. I wasn’t fully recovered, but I’d say there was around an 80% improvement by that point. I was still on meds, still getting support visits to the house however, even though the country was in lockdown at the time, I tried to get back to some sort of normality.

It took a while to get back to feeling like me again and it really affected my marriage. My husband had struggled with the trauma of it all as well. However, eventually, by November 2021 I came off all the medication and started to feel like myself again, which strengthened our bond as a family.

Looking back, I think for us, not having any idea what was happening was the most frightening thing. We didn’t know about PP, mental health was barely covered in the antenatal classes, other than a brief mention of depression, and the midwives didn’t seem to know too much about what was happening to me either. It wasn’t until I got to the MBU and met with specialist workers and peer supporters that things started to look up. I feel so grateful to have got a place at Chorley – I know not everyone is so lucky.

It’s now 2022 and I’m in a really good place. I’ve developed such a great bond with my boy, and he’s such a happy little boy too. So I get that excitement, that joy, that feeling of love now, as a mother, which is so incredible. I’m also back at work, taking care of myself, going to the gym and, importantly, my marriage is stronger than ever.

Now I can reflect on my experience I really want to help others by sharing my story. Awareness is so important, I think it would have helped us enormously if we had been armed with more knowledge from the start. Just being able to spot the signs, to know what help is out there and to know that you can recover would have relieved so much of the distress that I felt.

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