All posts by Lucy Nichol

NHS partnership increases peer support across Black Country for mothers experiencing postpartum psychosis

Black Country Healthcare NHS Foundation Trust is partnering with national charity Action on Postpartum Psychosis (APP) to expand specialist peer support services across the region.

Recruitment is currently underway for a dedicated peer support facilitator to work with mothers based in the Black Country who have experienced postpartum psychosis – a severe postnatal mental illness. The service will be managed by APP in conjunction with the Trust, to support women on their road to recovery.

Postpartum psychosis is a debilitating postnatal mental illness that can occur out of the blue. New mums with postpartum psychosis may develop high or low mood, or fluctuate between them, alongside delusions, hallucinations or severe confusion. Many of these mothers have had no previous mental health diagnosis prior to onset – although women with bipolar disorder are at higher risk. It affects around 1400 women and their families every year in the UK and is always a medical emergency. However, it is eminently treatable and most women go on to make a full recovery with the right support.

Dr Jess Heron, CEO, Action on Postpartum Psychosis, said: “We currently run a number of successful peer support services across the country commissioned by the NHS, including one in partnership with nearby Birmingham and Solihull Mental Health Trust. In combining this type of peer support with the necessary clinical care required we can ensure that women receive a truly holistic, sustained and specialist treatment. It can be daunting leaving hospital after experiencing something as confusing and frightening as postpartum psychosis, so making this additional support available within the community is invaluable for ongoing recovery. Being able to support women and families at this critical stage is key to reducing the trauma, giving hope, and helping women and families feel less alone as they navigate the recovery process.”

Hannah Bissett, National Co-ordinator (NHS Contracts & Regional Projects), Action on Postpartum Psychosis, said: “As a woman who has personally experienced postpartum psychosis I know how isolating and afraid it can make you feel. Peer support is a vital piece of the recovery jigsaw and we now have over 2,800 lived experience users sharing their stories and receiving support from trained volunteers as part of our national peer support forum.

“Having somebody there for you who knows exactly what you’re going through and who can inspire hope will undoubtedly bring a sense of relief and reassurance to women in the region who may find themselves experiencing postpartum psychosis. We’re delighted to be partnering with Black Country Healthcare on this project and I’m looking forward to hearing from applicants with lived experience interested in the peer support role.”

APP already delivers successful and award-winning peer support services working in partnership with NHS Trusts around the UK, as well as managing a thriving online national peer support forum. The charity also provides peer support for partners of women who are experiencing or have experienced postpartum psychosis.

To find out more about the Peer Supporter role, visit www.app-network.org/jobs

 

 

Lobeh’ s story – It wasn’t until I had my fourth child that I experienced postpartum psychosis

 My first experience of psychosis was back in 2009. I was in my last year of university and really struggling with the pressure of studying, my placement and writing up my dissertation. I stopped sleeping for several consecutive days and I just couldn’t shut my brain down.

I was talking really quickly, and became quite aggressive and reactive, shouting in the workplace because I believed people – and even at one stage a cloud – were following me. It wasn’t long before I was sectioned.

It turned out I had experienced a psychotic episode and I was eventually diagnosed with bipolar disorder. I had treatment and psychotherapy and, for many years, I was fit and well.

I met my husband in 2012 after I’d qualified in my profession. Everything was going really well, we married had our first child, then our second, and I was still really well.

When I had my third child there were some indications that my mood was changing and that I was going through some hormone imbalances, but I didn’t experience another psychotic episode until after I had my fourth child in 2018 – nine years after my previous episode of psychosis.

Because of my bipolar disorder, I always knew I was high risk for postpartum psychosis. However, having had three children with no problems, I really wasn’t expecting it to happen. Sadly, though, there were lots of complications and trauma around the birth of my fourth child and I ended up having an elective c-section.

When my baby daughter was born she wasn’t breathing and needed resuscitation which meant that we had no body contact as she was immediately rushed off to intensive care. I was fit and well at the time so was officially discharged but I didn’t want to leave my baby so they allowed me to stay. Within two weeks we were discharged together.

The problems didn’t end there, however, and after a few days at home I experienced fits and, as these were markers for an infection, I was rushed back to hospital where I had to undergo more surgery. They found that some of my placenta had been left inside which had caused the problems.

Once the physical risks had subsided I returned home. This is when the symptoms of postpartum psychosis hit me.

Three days after coming home I started erratically gathering items from the home to sell at a car boot sale – I felt compelled to do it, even though I had just come home with my baby. My attention was so often diverted away from my baby and, as a result, I wasn’t caring for her properly. Sadly, I had lost all sense of reality and I didn’t really understand what was happening or what I was supposed to be doing.

I believed that people were trying to take my baby away, I was driving around disorientated for hours with no idea why and constantly collecting these items to sell. Every day it was as though I woke up on a mission, it was as though something else had control of my mind. I was completely confused, lost all inhibitions, was over thinking and over talking. I would find myself in places or doing things with no idea how I had got there.

My husband tried to support me and he sought medical help and spoke with other members of the family. But the problem was, it’s hard to detect postpartum psychosis because how can you know what is normal behaviour after having a baby? It’s only when it becomes really erratic that it becomes more apparent – and at that stage you always need emergency care.

Eventually, having travelled out of my area and being filed as a missing person I was found in an apartment and sectioned.

Why MBUs are so important

I was brought straight to a hospital, however, there weren’t enough beds in nearby Mother and Baby Units (MBU) so I ended up on a general psychiatric ward and separated from my baby. Unfortunately, when you’re separated from your child this can really trigger more paranoia and make things worse.

I was also really scared on the ward which I don’t feel was managed very well and I had a particularly difficult time there. I had just had two major surgeries and some of the women on the ward were incredibly unwell. I got into a disagreement and I remember being kicked and punched. I was found unconscious and sent to A&E.

After I had been on the ward for a month a bed in a Mother and Baby Unit came up, but it was so many miles away from my home and family. MBUs are imperative for the safety and welfare of women who have just had children, and if I had been offered a place closer to home I would have accepted. But as this was so far away I petitioned through a tribunal to instead be discharged.

When you’re separated from your child this can really trigger more paranoia and make things worse

How I found recovery

Every woman has a different experience when it comes to treatment and recovery. In my case, I received antipsychotic medication to alleviate some of the psychosis and then, as I started to come round from the confusion, I started talking therapy to explore how I felt and what had happened. It enabled me to talk about the trauma of the birth which had obviously affected me greatly.

Because I wasn’t with my baby I missed out on some of the bonding time during my recovery so lost my confidence as a mother which was really hard. I also fell into a depression which was really challenging too. Recovery is gradual, and having the therapy and my family and friends around me helped a lot – as did my faith.

I also found lots of help through APP. When I first Googled postpartum psychosis and APP came up in the search, I felt as though I was the only woman in the world going through this. But when I was introduced to the peer support forum I realised that there were many women who had experienced this illness. I joined the monthly meet ups and it was fantastic being able to support and be supported by other women. I am especially pleased that APP is proactively encouraging engagement from BAME communities because mental health is such a taboo subject in some of our communities, so having more knowledge, awareness and engagement is key.

And that’s why I’m sharing my story today. I hope it inspires other women to feel confident in coming forward and asking for help.

 

New play shines humorous light into the darkest corners of motherhood

 

after birth, written by Zena Forster and directed by Grace Duggan, is a new comedy deeply rooted in the real life testimonies of women who have experienced postpartum psychosis, including many women within the APP network.

The play is being brought to life by Maiden Moor Productions and will open on Monday 10 June at the North Wall Arts Centre in Oxford. Imaginatively staged, with elements of stand-up and a dynamic original sound score, after birth takes us on a journey of recovery.

The story revolves around holiday camp entertainer Ann, who, alongside the Virgin Mary, has been detained without trial on a medieval plague island in the middle of the Venetian Lagoon.  Buffoonish and malevolent by turns, their doctors are intent on curing them of their heinous crime - Being A Bad Mum.   This is the world of Ann’s mind.  after birth’s protagonist is experiencing postpartum psychosis after the birth of her baby.

The lead character’s experiences might be extreme, but they are recognisable and relatable: what mother hasn’t felt judged, or been demoralised by the myth of the perfect mum?

Playwright Zena Forster said; “Just as the women I interviewed didn’t want to be defined by their illness, after birth isn’t a play about psychosis, it’s a play about a tough, witty woman who happens to have psychosis.  The women I interviewed were amazing – courageous, inspirational and often very funny, it was natural that my protagonist was like that too.”

Grace Duggan, Director said, “Zena has created this incredibly detailed and responsive play about the realities of postpartum psychosis.  after birth doesn’t hold its tongue, it doesn’t shield us from the truth, and it doesn’t stop us from awkwardly laughing with a psychotic mother. We want people to start talking about postpartum psychosis and continue the discussion about the pressure of motherhood. Through our characters and with this story we hope to expose it all and have a laugh along the way.”

after birth grew out of collaboration between Zena Forster and researchers at the National Perinatal Epidemiology Unit (NPEU), Oxford University. For 40 years the NPEU has been the ‘go to’ international centre of research into women’s physical and mental health.  Their annual reports have consistently shown that in the UK suicide stubbornly remains the leading direct cause of maternal death between six weeks and one year after birth, with women from ethnically diverse communities disproportionately affected. The NPEU were keen to find new ways of disseminating their findings with a view to effecting change.

Zena interviewed many women with lived experience of postpartum psychosis, travelling miles around the country to do so. Both Zena and director Grace Duggan dramaturged the piece extensively, developing it significantly for performance in 2021. after birth was awarded the Propeller 2020 opportunity by North Wall, Oxford which includes three performance dates 10, 11, 12 June 2021. A film of the staged performance is also being made and the NPEU are undertaking further research of how this filmed performance could be used in both therapeutic settings and in health professional education.

The time has never been riper for a recovery story. after birth is an opposite celebration of resilience in the face of inequality and adversity. There is a growing need and appetite for work that explores the disadvantages that women face in our unequal, patriarchal society.  Between eight and nine out of ten women in the UK will become mothers. The pandemic has exposed and heightened the inequalities they face.  More and more evidence is emerging that maternal mental health has suffered over the last year, with black and brown mums disproportionately affected. after birth creates a timely space for us to talk about these pressing issues.

As an international centre for research into women’s health and as a vibrant creative hub, Oxford was the perfect place for this play to be developed. Oxford’s North Wall has long been committed to nurturing creative talent – Alice Vilanculo (actor), Will Alder (sound design), Grace Duggan (director) all received early career support through the theatre’s various development programmes and are delighted to be back in Oxford as established artists.  Likewise, Oxfordshire Theatre Makers (OTM) and Arts at the Old Fire Station provided backing and opportunities to develop and promote the play.  Oxford’s supportive city council provided important early seed funding.  Oxford colleges have helped with funding too. after birth’s playwright Zena Forster is based in Oxford, as is Bafta award winning film maker Jo Eliot who will be filming the performance.

Commenting on  after birth, Professor  Rachel Rowe, Senior Health Services Researcher, National Perinatal Epidemiology Unit said “through after birth we hope to engage audiences with research evidence about maternal mental health, to raise awareness, reduce stigma, encourage discussion and ultimately improve care and outcomes for women affected by postnatal mental illness. The play promotes some key public health messages about postnatal mental health, but importantly it’s also funny and full of hope – it should be a really good night out.”

To book tickets, click here

Chloe’s story: I stopped trusting everyone. But now I’m recovered and love being a mum

I had planned for a calming water birth and, throughout my pregnancy, which was for the most part a happy and healthy pregnancy, I saw no reason why this couldn’t happen. However, things didn’t go to plan, and my labour ended up being incredibly exhausting and traumatic.

My little boy, Alfie, was very much wanted and, like all mums, I was excited to meet my baby. Sadly, however, at week 20 of my pregnancy, we suffered an unexpected family bereavement, my pregnancy became high risk due to a fibroid and my blood pressure began to increase. I went into a natural labour at 41 weeks but had pre-eclampsia and, after two hours of pushing, my baby’s heart rate kept dropping due to the cord around his neck. I was quickly prepped for an emergency c section.

The birth

Thankfully, they managed to deliver my little boy via forceps, but I lost a lot of blood and became anaemic and I was hooked up to monitors throughout. Alfie was eventually delivered, a little bruised but thankfully healthy, at 14.15, and, because I’d gone into labour at 23.00 the night before I was completely exhausted. Alfie was extremely sleepy, not waking to feed in the first 24 hours, but I was assured that this was normal for a forceps birth.

I was concerned that I wasn’t making very much milk and Alfie seemed jittery and a bit yellow, but I was discharged anyway after two nights – only to be readmitted the next day. Alfie had jaundice and had lost 11% body weight in just four days.

At this point they acknowledged my poor milk supply may have been due to anaemia, however, to me it felt as though nobody had been listening when I raised my concerns and this led to me not trusting any of the health professionals (despite my husband and I both being health professionals ourselves). Worse still, I didn’t trust my own instincts as a mother.

Three days later I was discharged again and the midwives were coming to check my blood pressure every two days, while the health visitors were coming several times a week. As the home checks mounted up, it felt as though every visit highlighted my incompetence as a mother and my self doubts and anxiety spiralled out of control.

My symptoms of postpartum psychosis

It all began as the worst anxiety I’ve ever experienced and developed into mania. Before long I had lost all concept of time and of what was real and what was not. I stopped sleeping, showering and eating and went to see the GP. By this point I believed that everyone around me was a doll, I was unable to follow storylines on TV, I couldn’t keep up with conversations and I couldn’t retain information. In retrospect the GP was amazing and immediately referred me to the perinatal mental health team. However, at the time, I believed they were trying to put me in prison, I thought everyone at the surgery was a social worker and that nobody trusted me to be around children. I didn’t feel able to tell anyone this as I thought everyone was in on the plot.

When I got home I refused to take the medication I was given as I believed it was poison that they were using to try and knock me out to get me to prison. I was hearing police helicopters outside and thought my house was full of cameras recording my actions. I paced constantly that night as my husband and baby were sleeping in the lounge (to allow me to try and get some sleep), and I kept thinking my husband was planning to leave and take the baby with him.

The perinatal mental health team came the next morning but unfortunately I had a nurse who was new to her role and she wrongly diagnosed me with postnatal depression. Luckily, my husband is a paramedic and he strongly suspected I had been misdiagnosed so he continued to seek more help.

My behaviour spiralled further out of control that day and, while my parents were caring for our baby, I woke my husband up from a nap to tell him that everyone was dead. He called the nurse back and I was sectioned and admitted to a Mother and Baby Unit (MBU) that night.

My admission to an MBU

When I got to the MBU I thought I’d been locked in prison and I refused to eat, drink, sleep, shower and take medications. I spent all my time pacing the unit trying to find a way out. As I was admitted at night no one was around and I believed they’d locked me up on my own because I was such a bad mum and a danger to others. I thought everyone was an actor and my hallucinations made them appear to have really strange eyes. I also started to believe that my husband was an undercover policeman. I spent hours looking at the photos of the staff on the wall thinking they were somehow linked to my normal life and that they’d all been undercover.

The turning point was two days later when they injected me with antipsychotics. At the time I thought this injection had aborted my baby and sterilised me. I’d also lost 10kg by then as I thought all food and drink smelled and tasted weird and was poison, and I had been told I might need to be moved to a different hospital to be tube fed. I’m a Dietitian by profession so I knew what this meant but at the time I couldn’t take it in. I kept asking the same questions over and over. I swapped between thinking Alfie was a doll and they’d taken away the real baby, to thinking that he wasn’t my baby at all or sometimes even believing that he had died. Because I’d had an epidural when I was in labour I hadn’t felt him be born and this was something I became obsessed with and was talking about as if it was evidence that he wasn’t mine. I thought the TV was talking about me and telling me things like I’d lost my career and would never work again and I believed that the songs on the radio were played especially for me. My husband bought me a magazine and it felt like everyone in it was pregnant and they were taunting me as I could never have a baby (thinking I had been sterilised). I wouldn’t use my phone as I thought it had been intercepted by the police and at first I thought I couldn’t even phone my husband as I wrongly believed he had asked for no contact, despite him visiting and spending most of the day with me every day.

The road to recovery

I eventually started taking medication willingly and began to recover. The first time I was allowed for a walk on the beach with a member of staff and my husband I was so excited but I still had some paranoid thoughts, thinking that everyone was an actor and that if I went into the public toilet they would run away with my son while I was there. But these delusions began to subside.

I was on the MBU for two weeks and think I should have probably been there longer but I was able to convince everyone I was fully recovered -  Coronavirus had made an appearance and I was very aware that lockdown was coming and I wanted to get home before it did. Lockdown in fact happened just a week after I was discharged.

The mental health team reviewed me over the phone and I never disclosed how down I was feeling as I feared they would re-admit me and I wouldn’t be able to have visitors. I really struggled and did not want to get out of bed, leaving my husband doing a lot of the caring for our son. I didn’t feel a connection with Alfie at this point and felt awful that this magical bond hadn’t appeared. I knew I loved him but I was scared that he would never be able to love me.

Another major turning point came six months later when the GP treated me for an under active thyroid and I finally started to feel like me again. It was the final piece in my treatment jigsaw and really made a big difference.

I now have the best bond with my son and he is a complete mummy’s boy! I still feel sad and guilty about the time I feel I missed out on as I felt like I was living in a fog, but I’m so glad what we went through hasn’t seemed to affect him and he is a happy, healthy boy.

 

My recovery story: I thought I was in a computer simulation - now I’m back to being the old me

One mum shares her story of recovery to inspire hope...

If you were to ask my best friend a word to describe me, she will for sure say ‘anxious’. It’s a part of me that I’ve always carried and of course it showed up during my pregnancy too. I kept thinking ‘is the baby ok?’ ‘is the baby moving?’ But overall, everything was going fine…that is until the end of February 2020 when COVID-19 starting spreading across Europe. For me, being pregnant and away from home meant only one thing; there was no way my family would be able to be with me for this amazing moment in my life.

At 41 weeks of pregnancy, on 27th May, my little boy decided to make an appearance. I read a lot about people giving birth after pushing for ten minutes or an hour, but that was not the case for me. I don’t want to go into all the details of my birth, but to summarise we had a fair few complications and I felt completely traumatised by the end of the labour.

The days in the maternity ward proved to be more difficult than I had anticipated. I was in a foreign country with no knowledge of the standard hospital procedures, and this unfortunately created lots of unnecessary confusion and uncertainty. Nonetheless, the biggest challenge was taking care of the little one as I had never held in my hands such a tiny and precious human being.

My little baby decided to show his character from the beginning: he didn’t want to be forced in doing something he didn’t want to do (like his mum), which sadly included breastfeeding. We tried for a week to get him to latch, but he was crying so much that the whole process made me really really upset. Breastfeeding was not going to work and that left me feeling really guilty - I felt that I was not able to do the one thing I was supposed to do as a mum. I felt like a failure. It was only after months that I realised that a fed baby is a happy baby regardless of how they feed, and that a mum simply needs to be loving. The rest didn’t matter – I was doing my best.

After five days in hospital, it was time to go home. Unfortunately, after five days of very little sleep in hospital, I realised that the situation wasn’t going to improve at home either and I was exhausted.

I had a terrible feeling of doom, and I thought I was dying

On the first day back, the midwife came to check on the little one and, despite assuring me that we were doing everything correctly, my anxiety didn’t leave me. I ended up having a major panic attack and I feel that, looking back, this is when the psychosis also began.

During the panic attack, I had a terrible feeling of doom, and I thought I was dying. It felt as though my entire body was shaking despite my legs remaining completely still as stone when I looked at them. An ambulance came and I was taken to A&E. I spent a few hours there and everything seemed fine; they discharged me and suggested I get in contact with a perinatal mental health team. Little did they know that they would see me again in less than 24 hours…

Once I arrived back home after the first trip to A&E, things started quickly deteriorating. I really wanted to sleep but I wasn’t able to close my eyes. I began feeling that everything around me was unreal. My husband took me on a walk to show me that everything was just as it always had been, nothing outside had changed, but it didn’t convince me. My mind wouldn’t stop racing and at one point I convinced myself that I was in a coma – perhaps from the panic attack or from the birth – I wasn’t sure I just felt as though I was in another state and that the doctors were trying to communicate with me through computer simulation.

My head was spinning and I kept thinking I needed to pass levels – as though I was in a computer simulation - in order to stop certain situations playing over and over in my mind. It was only when a friend came to visit that she realised something was very wrong and a second ambulance was called resulting in another trip to A&E.

We spent 24 hours in A&E but the situation kept worsening. I was highly paranoid and kept repeating: Is the baby fine? Am I fine? Are we going to be ok? Why me? I was also really worried that I could have harmed my baby as I was not able to take care of him properly.

During this time, I truly convinced myself that I was indeed in a computer simulation. It also became clear that I was having hallucinations. It was as though I was projecting my feelings onto other people’s faces and I thought I could see my husband and the doctor crying, but when I asked them about it the tears suddenly vanished and their faces returned to normal.

It was at this point that another doctor came into the room and diagnosed me with postpartum psychosis.

I wasn’t scared of the diagnosis – I hadn’t heard of it so the name of the illness didn’t mean anything to me. But I was terrified by what I was experiencing and I just wanted it to stop. As things continued to deteriorate fast they made the decision to section me in a Mother and Baby Unit (MBU) which ultimately saved my life.

I had never heard of an MBU and I am not sure they actually exist in my home country.

MBU’s are psychiatric hospitals for mothers like me experiencing severe mental illness. They are a place you can recover keeping the baby with you the entire time. These are amazing places and the doctors that work in there are fantastic people; I cannot praise them enough.

The first day in the MBU was hard as I was still convinced I needed to reach my next level in the computer simulation, and that to do so would save me from being trapped in a coma. A doctor came to explain to me that I was experiencing psychosis and that I would need to begin taking special medications that same evening.

Both the medicine and the ability to sleep for an entire night helped enormously in my recovery. Indeed, the day after, I had a short psychotic episode but it lasted only 10 minutes…and I’ve never had once since then!

Time flew by in the MBU: I gained confidence with my baby and I also met some lovely mum friends, all of who were clearly experiencing their own battles (I wish them all the luck for the future).

My recovery went so well that I was discharged within three weeks, followed by home support from the perinatal mental health team. Coming home was scary and daunting but my husband and my family where there to support me (luckily my family managed to find a flight to reach me). I had ups and down at the beginning. I felt ashamed, sad about my illness and devastated about not being able to breastfeed. Nonetheless, I had my baby there with me and we had a beautiful bond. Everyday I was showing myself that I was in fact able to take care of that little human being and that really boosted my confidence. He was smiling and happy and that was all mattered to me.

After a few months had passed since my discharge from the MBU, the medication was stopped and I am happy to say that I am back to being the old me (and actually less anxious, which is better than before!) This month is going to be my baby’s 1st birthday and life couldn’t be better!

I wanted to share my story to show that postpartum psychosis is indeed a severe mental illness but you can recover very quickly with the right help. Reach out for help and, although you might think you’ll never be your old self again, that really isn’t the case. You will recover. There is help. Stay strong.

 

 

 

 

 

APP urges HSC Northern Ireland to invest in ‘critical’ Mother and Baby Unit to save lives

Representatives from Action on Postpartum Psychosis (APP) are speaking at the Northern Ireland Maternal Mental Health Conference this week to raise awareness of postpartum psychosis and the need for specialist life-saving facilities.

Postpartum psychosis is always a medical emergency and yet, while many parts of the UK now have specialist Mother and Baby Units (MBUs) to treat women experiencing this severe mental illness, Northern Ireland, North Wales, Northern Scotland and the Republic of Ireland currently have no such facilities.

MBUs accommodate multidisciplinary teams of experts able to care for both the physical and emotional needs of new mothers. They have specialist knowledge of the issues surrounding medication management in pregnancy and the postnatal period. Presently, because women in Northern Ireland do not have access to an MBU, they would be admitted to a general psychiatric unit – resulting in separation from their baby during this critical time, with potential lifelong consequences for both mother and baby.

Dr Sally Wilson, National Research and Training Co-ordinator, APP, who is speaking at the conference on Thursday (6 May) said: “Postpartum Psychosis is a devastating mental illness that can occur completely out of the blue and it always requires emergency specialist care. However, if affected families are able to quickly access the right treatment, the prognosis is good and women recover. MBUs are a vital service for mothers experiencing severe forms of postnatal mental illness, and we believe that every woman experiencing postpartum psychosis should have access to this critical specialist support.”

Postpartum psychosis is a severe postnatal mental illness that affects 1,400 women and their families every year in the UK – from all backgrounds. Half of cases are ‘out of the blue’ with women having no history of mental illness. Symptoms include hallucinations, delusions, mania, depression, restlessness, anxiety, confusion, and erratic behaviour  - which can manifest within days of childbirth. With the right treatment, women can fully recover.

Dr Jess Heron, CEO, APP said: “We’ve been campaigning for more Mother and Baby Units for many years. We hear so often from women and families about how traumatising and inappropriate general unit admission was. Our research shows that women who receive care for postpartum psychosis within an MBU feel more satisfied with the care they receive, they feel safer, more confident in staff, more confident with their baby, and are able to recover more quickly. These are essential services, not nice-to-haves, and they play a critical role in keeping families together and saving lives.”

The Northern Ireland Maternal Mental Health Conference takes place on Thursday 6 May during Maternal Mental Health Awareness Week. It aims to bring together parents, health services and the third sector to ensure that nobody is left alone to struggle with postnatal mental illness.

Both Dr Sally Wilson, National Research and Training Co-ordinator, APP and Ellie Ware, National Peer Support Co-ordinator, APP have experienced PP personally and will be presenting on behalf of the charity. Delegates can expect to hear more on what postpartum psychosis is, why it’s always a medical emergency, what care pathways for PP should look like, and why MBUs are essential. They will also discuss the importance of peer support and the myriad ways APP can support women and families, including some of the organisation’s future plans in Northern Ireland.

To book your place, and to find out more, click here

For further information on postpartum psychosis, or to access peer support, visit www.app-network.org

APP volunteer, Oorlagh Quinn, launched a petition calling for an MBU in Northern Ireland. To find out more about Oorlagh’s campaign and to sign, click here

Raising awareness of postpartum psychosis this Maternal Mental Health Awareness Week

This week (3 – 9 May) marks Maternal Mental Health Awareness Week, a campaign organised by The Perinatal Mental Health Partnership to raise awareness of the fact that 1 in 10 women experience a mental health problem during pregnancy or in the first year after birth.

At APP, we know that postpartum psychosis plays a key role within this and it can have a devastating impact on many women and their families. In fact, postpartum psychosis can affect 1-2 in every 1,000 new mothers in the UK each year, and a lack of awareness makes it harder for families to reach out for help and more challenging for health professional to spot the signs.

As such, we are going to be using the week to further raise awareness of this illness and campaign for better services – including more Mother and Baby Units to help keep families together and to recover more quickly.

 

How you can help

We’d love for as many people as possible to help us spread our message and signpost people to support and there are many ways you can do this:

  • Share our social media graphics. Hop on over to Twitter (@ActionOnPP) or Instagram (@actiononpp) and share our ‘What is Postpartum Psychosis’ content – not forgetting to tag us and use the relevant hashtags too (#postpartumpsychosis and #MaternalMentalHealthAwarenessWeek)


  • On your own social media, share why you think Mother and Baby Units are important, tagging @ActionOnPP

 

  • If you’ve experienced postpartum psychosis and would like to join our peer support or storyteller network, please sign up using this form.

 

 

 

For further information on postpartum psychosis please use this link

If you are in urgent need of help, please follow this link for useful information

 

Jocelyn’s story - I don’t know where I’d be today if it wasn’t for peer support

I was living abroad when I became unwell with postpartum psychosis. I had left friends and family behind in the UK and moved to Brazil to get married to a Brazilian I met while teaching there a few years previously. When I became pregnant, however, I did toy with the idea of having the baby in England, but it just wasn’t practical to come back at the time.

Of course, I knew that giving birth and looking after a baby would be hard work, but I had no idea of the scale and intensity of what was to follow...

84% of women in Brazil have C-sections and I was determined to have a natural birth. However, my baby’s heart rate dropped when I was being monitored in hospital and I ended up being rushed for an emergency caesarean.

At that point, everything was fine and I was sent home. However, after about three weeks I developed a fever and had a pain in my stomach. I had it checked out and, through CT scans, they found that they’d left a swab inside me. The language barrier made all of these conversations quite challenging, but one thing I was told by the doctor from the first c-section was that I nearly died due to loss of blood. This added to the confusion and paranoia of who to trust.

This is when things became really confusing for me. I was convinced that, because I’d had two operations, I must have had two babies. In Portuguese, they don’t pronounce Seth, my baby’s name, in the same we that we do in England. Instead they say ‘Sete’ (pronounced ‘Seche’) and it reinforced the idea that I’d given birth twice, that there were two different babies.

I became really anxious and paranoid, and I had a really heightened sense of smell, believing that I could tell which nurse was coming to see me just from the smell in the air.

After leaving hospital for the second time, I kept believing things were happening that weren’t real. We got on the bus in the middle of summer and I was absolutely convinced that I was bleeding everywhere – but I wasn’t bleeding at all. And when one of the drivers came to look at Seth in the pram I was convinced they were staring because I was pushing a pram around with no baby in – I truly believed at that point that Seth had died.

Other delusions included my mistrust of my husband, who I was convinced had installed cameras everywhere, and I stopped eating because I thought that lots of different foods were causing colic. I remember my husband trying to put me in a sleeveless summer dress too and I became really agitated, convinced that he was strapping me into a straitjacket.

I tried to find places or activities that might help to calm me. For example, there’s a saying in Portuguese – banho de sal grosso – which means cleansing yourself in saltwater. So I decided that if I went to the sea it would cleanse me and make me feel better and stop all of the fear and anxiety. So we kept going to the beach one time when I went in the water with my husband I thought I was dying.

I continued to be really concerned about Seth’s wellbeing too. At one point, I thought he was the devil and that he needed to be exorcised to save him – even though I wasn’t actually religious in any way.

As things became worse, we went to see a psychiatrist but, due to the difference in language and my complete confusion, I struggled to get across how I was feeling. They tried to sedate me but then just sent me on my way with six months’ antidepressants in my pocket.

I felt confused, frightened and as though I had no real medical support. To add to that, I was back at work when Seth was just four months old because you only get four months’ maternity leave in Brazil. By that point the psychotic symptoms were petering out (they lasted around two weeks in total), but I had really bad anxiety and depression – in fact, the anxiety stayed with me for over a year after giving birth. Because Seth was so young when I returned to work, I had to have him with me in the classroom where I was teaching English and try to use my hour a day for breastfeeding as effectively as I could.

It was such a challenging time and, feeling alone, I decided to do some of my own research. I started googling postnatal depression but it just didn’t sound at all like my experience. However, luckily, I stumbled across a website about postpartum psychosis and realised that I had all the symptoms. Upon further research, I found the Action on Postpartum Psychosis (APP) peer support forum which felt as though it was the only knowledgeable support that was out there – after all, my doctors hadn’t mentioned psychosis.

Reaching out to people on the forum was a lifeline – it was here that I found other women who had been through what I had. The first woman who responded to me really helped me and we are still in touch to this day. There was no judgment on the forum, no language barriers and I felt free to speak openly about what had happened to me and what I was going through.

We came back to England when Seth was nine months old and I saw some doctors over here who confirmed my diagnosis. As I started to make sense of my experiences, I decided to train to become a peer support worker with APP because I couldn’t bear the idea of another woman going through what I went through with no knowledgeable support.

I honestly don’t think I would be where I am today if it wasn’t for the voluntary peer support that I received. There’s a lot of stigma around psychosis, particularly around PP where people have these ideas that mothers want to harm their babies, but it really wasn’t like that. If anything, I was terrified of something happening to my baby. I was over-protective.

Everybody’s experience of PP and subsequent recovery is unique to them, but there are shared similarities between us and that means the world. It stops you feeling so lonely and ashamed.

Through APP I feel that I have found my tribe – these amazing women who have been through such intense struggles, but who are united in joining forces to help others. And while NHS support often has time restrictions placed on it, peer support is there forever. I’m so grateful to benefit from and, today, play a part in that much-needed service.

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Catherine’s story - one day I did remember him, and I felt like a mother again

There’s a Korean tradition that when a baby is born, mother and baby stay home for the first 21 days. The first 100 days are considered a vulnerable time, and so we are meant to be cautious. It’s a belief rooted in keeping mothers and babies safe from harm, but in modern life, it’s a difficult tradition to follow. For me, it felt impractical and unreasonable, and I spent the first days out of the hospital inviting friends to our home and going out to restaurants and parks. We even decided to travel to the US when my son was two months old on an extended trip to visit family and friends. However, in the back of my mind, I would remember this tradition of confinement, and it was a decision I would question when I was eventually diagnosed with stress-induced postpartum psychosis.

I cannot link my postpartum psychosis to tradition or culture, I’ve learned from this experience that postpartum psychosis can happen to anyone, and I can trace the roots of my psychosis to something that started well before my decision to make this trip.

My psychosis started while I was in the United States, I’d wanted to introduce Cato to family on the West and East Coasts, and to celebrate his 100 days with family and friends.

It was towards the end of our trip, while I was staying with my in-laws that the symptoms of psychosis started. I hadn’t been sleeping for weeks, and the stress of travel and concerns from our families had taken its toll. I did not realise that what I was experiencing were symptoms of postpartum psychosis. I’d become paranoid, believing that my mother-in-law was signalling to me in a language separate from the others in the family. The house had Nest cameras installed for security, but I thought I could hear the cameras in the walls, I thought I was being watched. The warnings and concerns expressed kindly by my in-laws took on a darker meaning, I felt increasingly worried, and I could not sleep. It culminated in a moment when I looked at my son’s face, and his face was not his own, but the face of a devil.

I did not know what was happening. The moment felt too surreal to believe, but it felt so real to me. I did not understand. I knew that I needed to leave the family home, I had a sense that something very bad was about to happen, I just didn’t know what. I begged James, my husband to take us to a hotel, and he immediately packed our bags, and we left.

At the hotel, things descended quickly. I thought we were being tracked, and so I deleted all the apps on my phone. I started to see figures in the halls, people with strange faces staring at me, brushing past me. And my son’s eyes were still like the eyes of a devil. In the hotel, my husband tried to get me to sleep, but I couldn’t. I started losing sense of time, each moment was replicated a multitude of times. I thought I heard the voice of God, telling me that I was in hell, that my life had been a simulation, and that my son was going to die.

In some ways, it felt like a relief to hear this, it seemed to make sense, everything I’d been experiencing, all the stories of my past, of my family’s histories, I could see the patterns in them. I didn’t tell my husband what I ‘knew’, because I didn’t want to frighten him. He could tell that I wasn’t well, and so he asked his parents to come take our son, and then he drove me to the emergency room.

At the hospital, I lost all sense of what was real and not real. I started tearing off my clothes in the waiting room, I was attacking the nurses, they looked like demons. I remember hearing my husband shouting for help and being forced onto a gurney.

The next days are fragmented. I was given different medications, but nothing was working, and I still couldn’t sleep. I didn’t sleep for four days. I lost all sense of who I was, I thought I was my husband, my son, sometimes I was my mother. I remembered different versions of my life, versions that couldn’t be true. My husband would call my parents to come and help take care of me, but I didn’t recognise them. I thought that one of the nurses was the angel Gabriel, and I couldn’t eat because I thought the food I was being given was human flesh. There were times I remembered I had a son, that I knew who I was, but most of the time, I was terrified.

I would experience what I thought was the end of days

After four days, the decision was made that I would be sectioned to a general psychiatric ward. I was transferred via ambulance, and I remember thinking that the medics taking me were taking me to be euthanized. I am still grateful to the medic who held my hand the entire way, while I talked nonsensically and screamed at the animals surrounding us.

At the psychiatric ward, I would experience what I thought was the end of days – it was partly in reaction to the roughness of the staff who were trying to calm me, but it ended with me stripping off my clothes and urinating on the floor. I was sedated, and for the first time, I slept. I do not know how long I slept, I think it was for two days, but I woke up in a blank room with my hair tied in a strange way, with fragmented memories of who I was and what had happened. I spent eight days in the psychiatric ward, following instructions, attending the classes and waiting desperately to be released.

I was released to the care of my husband. I felt like myself, but I know now that I still wasn’t well. My time away from my son had taken its toll – I felt completely separated from him, and I had no memory of my bond with him. It felt physically painful to touch him. When I thought about it later, I would believe that this was my mind’s way of protecting him, of protecting him from a mother who could not be trusted.

We would return to London, where I was referred to the perinatal mental health team. A few weeks after psychosis, I would fall into a deep, clinical depression. It happened suddenly, where one morning I woke up, but I couldn’t move or get out of bed. Those months were some of the most difficult times of the experience. It felt unending, and I felt despair, because I couldn’t imagine being well again.

My husband made the decision to keep me at home instead of admitting me to a mother baby unit. One day when I was feeling too much pain to lift a spoon, my husband called my psychiatrist, and she referred me to the mental health crisis team. The crisis team would visit our flat every morning. Each visit forced me to get out of bed, and they would give me a task for the day. I started keeping lists of simple tasks – making a cup of tea, brushing my hair. They would smile at me, even as I sat unmoving and silent, unable to speak. They promised me that I would feel better, that one day this would be a memory. I tried desperately to believe them.

They asked me to spend time with Cato each day, to help rebuild our bond. I would do this as a practice, and I didn’t understand how I couldn’t feel a connection to my own son.

I would remain on an antipsychotic and antidepressant for a year. It was several months before I could start noticing moments of light. I would be sitting and realise I wasn’t feeling pain, that I was noticing the colours around me, and I would know that I was getting better. Those moments would be temporary, and then the darkness would come again, but eventually the darkness would come less frequently, and I would feel I’d reclaimed myself.

The bond with my son took longer to build. I approached it with intention. I went through the steps, and I hoped he would understand that I was working to come back to him, that I was trying to remember.

And one day I did remember him. I was holding him and feeling his weight against my body, and it felt familiar. And I felt like a mother again.

For more of Catherine’s story, you can read her memoir, Inferno, which is out now in hardback and paperback from Bloomsbury. You can also watch this moving film that Catherine recorded in March for the Maternal Mental Health Alliance.

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Claire’s story - If there was more awareness of postpartum psychosis, I believe my second episode could have been prevented

When I was 30, I experienced a frightening psychotic episode that came completely out of the blue. I think it may have been linked to what was, at that point, an undiagnosed under active thyroid problem – but I don’t know for sure. Regardless, I took a year out of university but was, thankfully, able to return the following year.

Four years later, when I was pregnant with my little boy, I enjoyed a fairly smooth pregnancy until I reached labour. At that point, my contractions were all over the place and I ended up being in labour for four days – initially being sent home from the birthing centre and then admitted to a local hospital for the delivery.

After six or seven hours at the hospital, I was given an epidural and emergency C-section because my baby became stuck. This was incredibly traumatic and frightening, and because the labour lasted so long, the epidural was ineffective during the C-section, so the pain was seriously bad! I also hadn’t eaten or drank anything for four days, and hadn’t slept a wink either.

Looking back, I’m convinced that the psychosis started there and then on the operating table.

As I was being wheeled out of theatre, I honestly believed that I had died and they were wheeling me through the gates of heaven! I was put into a recovery room but, because of the trauma and shock that you would probably expect following such a difficult labour, it took a while for anyone to notice that there was something else going on.

However, when my husband left my side briefly to collect a change of clothes, he noticed a change in me when he came back to the hospital. He said I was incredibly distressed and anxious – far more than he would have expected. From there on, the distress escalated significantly.

Sadly, because there wasn’t much awareness of postpartum psychosis at the time, it took a while for us to receive the diagnosis. In the meantime, I was placed on a renal unit – a ward for people with kidney problems – the theory being that, because there were older people on that ward who also experienced memory loss and distress, that would be the most suitable place for me.

But it really wasn’t.

I was so anxious at this point that I regularly tried to abscond and ended up having two security guards on the door which made things even more intimidating. As the psychosis became worse, I was given the anti-psychotic, haloperidol, which I don’t think I responded well to, as it made me almost zombie-like! Shortly after, I was sectioned.

However, even after the section the psychiatrists refused to take me to the mental health unit until all other possible physical causes had been ruled out. These investigations took a long time, and it was only after seven days that I was admitted to the general psychiatric ward. At this point, my psychosis had gotten much, much worse, and, due to the separation from my baby, I was so scared about what had happened to him. I even thought he might have died.

Of course, full recovery took some time...but things settled down and we got on with life as a family

Eventually, I was given a bed at a Mother and Baby Unit and, once reunited with my little boy, my recovery was really swift. After one month, I was enjoying leave and eventually moved back into our family home.

Of course, full recovery took some time, and I was incredibly anxious looking after my little boy. I was scared that something might happen unless I focused literally all my energy on him all of the time. But things settled down and we got on with life as a family.

Three years later, I had my daughter and, knowing that there was a 50/50 chance of developing postpartum psychosis again, I planned every detail of the birthing experience really carefully. Because of the risks, I had an appointment with a psychiatrist prior to giving birth, and I was advised that the psychiatrist would visit the maternity unit the day after the planned C-section.  However, the psychiatrist didn’t show up, so I ended up with no mental health support at all and no specialist treatment when the psychosis did start to creep in.

Because the feelings were familiar the second time around and I was able to recognise them, I quickly shared my concerns with the doctors and requested to see a psychiatrist - but it became clear that nobody was coming. Because I wasn’t getting the right help and because I was so uncomfortable in the maternity ward, I decided that going home and trying to manage my illness and reach out for the right treatment myself was going to be best. So I went home and, in desperation, dialled 111 and requested a walk-in appointment. We then had to wait over five hours while I was actively psychotic, hearing voices and feeling really frightened and anxious, whilst we were also trying  to cope with a newborn baby and a three year old. Eventually, I approached the nurse and explained what postpartum psychosis was and that I needed emergency help. I was then seen quite quickly but the doctor would only prescribe sleeping tablets, rather than the required antipsychotics. Even though I knew immediately after giving birth what was happening, it was seven days after leaving the hospital that I eventually received any support from psychiatric services.

Following this, I stayed in the MBU over the Christmas period and, although I wish I could have been admitted right at the beginning, the care within the MBU was outstanding. I even managed to enjoy a short but sweet Christmas dinner with my husband and our children.

Given the insight I had following two previous episodes of psychosis, I truly believe that my second experience was entirely preventable – if only there was more awareness of postpartum psychosis.

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