Tag Archives: postpartum psychosis

APP to speak at international perinatal mental health conference 

Members of the Action on Postpartum Psychosis (APP) team, including staff, trustees and ambassadors, will be speaking to a global audience of expert researchers later this month as part of the International Marcé Society for Perinatal Mental Health Conference. 

The conference takes place between Monday 19th and Friday 23rd September and will welcome leading experts in perinatal mental health from institutions and organisations around the world. The Society is led by a board of experts including APP’s very own trustee, Professor Ian Jones, who also serves as the conference’s co-chair.

Having the opportunity to speak at such an event will enable us to share best practice and stimulate conversation specifically around postpartum psychosis (PP), raising awareness of the illness, as well as our campaign asks, amongst a much wider pool of academics and health professionals. The more researchers and professionals we get talking about postpartum psychosis, the more collective power we have to build knowledge, effect change, challenge stigma and improve services for women and families affected.

The two sessions APP will be involved with or leading are:

What do women and families need from perinatal mental health services? 

This session will be chaired by Dr Clare Dolman (APP trustee and Vice Chair for the Maternal Mental Health Alliance) and feature our brilliant ambassador Laura Dockrill, who will be sharing her personal experience of PP, as well as our National NHS Contracts Coordinator, Hannah Bissett, who will be speaking about the value of peer support in perinatal services. They will be joined by Dr Henry Fay – a former GP with experience of PP as a partner, and current trustee with the Maternal Mental Health Alliance.

APP ambassador Laura Dockrill will be sharing her lived experience story

Postpartum psychosis: strategies and collaborations to increase knowledge, address stigma and improve care globally

This session will be chaired by our CEO Dr Jess Heron and will feature discussion from Hannah Bissett as well as Dr Sally Wilson, APP’s National Training and Research Coordinator. The APP team will present evaluations of some of APP’s projects including: APP’s health professional training in PP; peer support services; and the ongoing campaign for Mother & Baby Units. The discussion will focus on exploring the ingredients for lasting impact, lessons learned, and how this learning might be used to influence care for women and families affected by PP globally.

APP’s CEO Dr Jess Heron will be chairing a session

About the International Marcé Society for Perinatal Mental Health

The International Marcé Society for Perinatal Mental Health was formed at an international conference in 1980. The purpose of that conference was to bring together different strands of research in puerperal mental disorders. It was recognised that there needed to be a forum to discuss puerperal mental illness in its broadest sense, and as such the Society was formed. The Society was named after Louis Victor Marcé, a French psychiatrist who wrote the first treatise entirely devoted to puerperal mental illness, published in 1858.

Other notable sessions at this year’s conference include Postpartum Psychosis: Cross-cultural conceptualisation in Malawi, India and the UK; Advances in the Pharmacology of Mood Disorders during Pregnancy; Offspring of parents with Psychosis: Pre-postnatal indicators of risk and resilience; Consensus and Controversies in the classification of Postpartum Psychosis in DSM-V; as well as a session focused on fathers’ mental health: Fathers’ Perinatal Experiences, Mental Health and Impact on Family Health.

One of the key aims of this year’s conference is to highlight the UK’s best practice in lived experience involvement, and encourage this trend internationally. The conference events will take place both in London and virtually.

Find out more about the conference here

The conference itself is no longer taking delegate bookings, however, we’ll be sharing some of the key highlights and things we’ve learned, so watch this space for more info.

To join the APP network and sign up to our newsletter click here

If you’re attending the conference, please do join in the discussion on social media by using the hashtag #Marce22 and tagging us @ActiononPP

 

Joanne’s story: “It was heartbreaking to be separated from Joshua”

Joanne from Northern Ireland experienced postpartum psychosis in 2008, 13 weeks after giving birth to Joshua, her fourth child in five years. Joanne shared her story with APP and journalist Kate Skelton:

Unfortunately the birthing experience in hospital with my third child had left me traumatised. I suffered horrendous neglect during labour and up until delivery I didn’t know if either of us would survive.

In total contrast, and in a different hospital, Joshua’s birth could not have went better, which was such a relief for me. But at seven weeks old he was very ill and contracted bronchiolitis. He wasn’t breathing very well and needed urgent care so I had to take him to the hospital where I had been previously traumatised. He was admitted straight away and we were put into an insulation ward.

I now know I was being triggered and started reliving my traumatic birth experience.

I was petrified as I didn’t feel safe there - I didn’t sleep, I was worried sick about my baby and kept hyper vigilante to make sure Joshua was okay.

Thankfully Joshua got better and we were discharged.

It wasn’t until six weeks later during a visit to my parents for their wedding anniversary celebration that I began to experience symptoms.

I started to feel really cold and suddenly my feet and legs went numb. I told my parents to call an ambulance. Soon I was completely paralysed and I was unable to speak.

My Mum thought I was having a stroke. I got blue lighted to hospital - and yes, you guessed it, back to the one where I had been traumatised. My body went in and out of paralysis, I was hallucinating and my speech was incoherent. Something was badly wrong with my brain but the professionals had no idea what was going on. Soon I was displaying symptoms of mania and psychosis and had to be sectioned and admitted to the local psychiatric ward.

I clearly remember being surrounded by at least 12-15 members of staff, physically restrained, forcibly dragged and then thrown into a van that transported me to the locked ward. I must have been sedated as I woke up on the floor of the ward hanging onto the leg of a chair and the shoe laces of a male member of staff. I was a pathetic sight.

I kept asking  ‘where is my baby?’ but no one told me anything. I was terrified, helpless being separated from my family and now surrounded by all the other severely ill female patients. One young girl had obviously been self-harming and had injured herself by shaving her head and cutting herself with a razor blade. I was terrified, and totally freaked out. I had never witnessed anything like that before.

Alan Lewis - PhotopressBelfast.co.uk 29-6-2022

The old Victorian ward was awful - it was run down and painted in a horrible grey colour. It was more like a prison than a hospital ward with bars on all the windows and staff watching us patients from a secure room. All I heard was doors banging loudly and large bunches of keys being jangled. I knew I was locked up, going nowhere and I had no idea if or when I would ever get out.

To say the experience was traumatic is an understatement, definitely not the proper place for an unwell Mum to be who had recently given birth. General psychiatric facilities are totally inappropriate for women with postpartum psychosis as they require specialist diagnosis and treatment; plus their basic needs to be with or even see their babies are not provided for.

I wasn’t given a diagnosis of postpartum psychosis back then only of manic depression (bipolar disorder), so more information would have been helpful for me to try and make sense of what had happened. It was during my recovery and finding APP online that I first heard of postpartum psychosis and its connection to bipolar.

Northern Ireland and the whole of Ireland still have no perinatal wards or MBUs (Mother and Baby Units) which is outrageous in 2022 when so many women suffer postpartum psychosis.

I firmly believe if I could have been treated in an MBU it would have been life-changing for me; speeding up my recovery as I could have been with my baby boy instead of constantly fretting for him. It was heart breaking to be separated from Joshua when all I wanted to do was love and nurture him. I was denied the opportunity to both care for my baby in those early weeks and have the chance to further develop the crucial mother & baby bond – something I still feel very guilty about 14 years on.

 

 

Alison Cobb - author of A Secret Never to be Told

As Alison Cobb’s new book, A Secret Never to be Told is published, the author talks to APP about how the stigma surrounding mental illness almost prevented her from meeting her own mother.

My father was out for the evening and the house was empty. I was 13.  I was wondering what to do and so I went into my father’s secretary’s office - she had a typewriter that I loved to play with. The secretary wasn’t there, but I stumbled across two files on my father’s desk that intrigued me. One of the files had my grandmother’s name on the front (Mrs. E. Brittain), the other my mother’s name – Mrs. D. Brittain.

That was pretty much all I knew about my mother – her name - and that she had died. I began looking through the file and found lots of very dull papers and hospital bills for 25 guineas each. I realised she must have been very ill before she died to have been in hospital. But when I got to the end of the papers, I found that the latest bill was just a fortnight old. My mother must have still been alive!

I kept reading through the files, coming onto my father’s medical description of what had happened to my mother. Although my father didn’t know much psychiatry, he was an orthopaedic surgeon which is possibly why these notes read just like a doctor’s notes would.

I learnt that I was born 10 months after my father and mother married – probably conceived on their honeymoon. However, after my birth, my mother was overly excited, terribly suspicious, fearful of everything and unable to sleep. Eventually, my mother was placed in a psychiatric hospital and put under 24 hour surveillance because she was threatening to kill herself and crying constantly. She was incredibly distressed.

Alison’s mother Dorothy when she was pregnant, with her father, Tommy, at the Norfolk Broads.

As I’ve since discovered, my mother had a good pregnancy and was happy and healthy right up until my birth. She was doing all the things expectant mothers back then did – embroidering things, knitting a shawl for me. She was a very happy woman who was looking forward to becoming a mother. And then it all went very suddenly wrong and she was separated from us and sent to a psychiatric hospital.

As it turned out, my mother was diagnosed with ‘milk fever’, or puerperal psychosis – which is now known as postpartum psychosis. My father’s psychiatric colleagues told him that this condition could run in the family so he raised it with my mother’s parents which didn’t go down very well. They responded by denying any prior history of mental illness and by saying ‘Oh, so you think we sold you a pup do you!

The stigma was huge, but it manifested in tiny moments. I remember one of my cousins saying ‘I know something about your mother that you don’t’ but she wouldn’t tell me what.  It was all kept a big secret and my father later apologised to me for not telling me sooner.

However, even after I learnt about what had happened, my father didn’t like to talk about it and I was never able to visit my mother. But he suffered enormously keeping the secret, not being able to move on with his life, and all the while caring for somebody who, he was told, would never be well enough to leave hospital. The stress became too much. He took his own life when he was just 50 years old.

After I lost my father it took a long time for me to find out which hospital my mother was in. I would ask my aunts and they’d say not to go, that it would only upset her. In fact, my father was himself told by the hospital staff to stop visiting her for the same reason. So she was left alone in hospital and institutionalised for decades.

Of course, when I had my first child I was in absolute terror, staying awake all night watching her and wondering how long I had before it happened to me. Thankfully I stayed well throughout all my pregnancies and beyond.

Eventually I tracked my mother down after sending handwritten postcards to all the psychiatric hospitals in Suffolk. Finally I received a response and, after initially refusing to see me, my mother agreed. I was in my late 20s at this point and already had two of my three children.

My first husband was very supportive, as is my husband now, and he drove me to the hospital where we entered a huge ward with 60 beds in it, all painted silver, with no curtains or carpet. Suddenly I heard a clicking across the floor and my very small mother, in very high heels, came over to us. She wore a lot of make up, her eyebrows were drawn on and her lips painted in a Cupid’s bow that had been fashionable in the thirties. But she didn’t seem in any way ‘mad’.

The first thing she said to me was ‘You must be Alison. You’re terribly late.’ She said it was a terrible place for us to meet and asked if we could take her somewhere for lunch, which the hospital agreed to.

Alison’s mother, Dorothy

I had my two young children with us and she peered at the youngest and said how she looked just like my father. She hadn’t seen him in 30 years but that was the first thing she saw.

When we got into the hotel and sat down there was some butter in front of us. My mother asked if it was butter or marge. Told by us that it was butter, she ate it all with a knife and fork saying ‘we only get marge in the bin’.  And I thought, that’s a perfectly sane thing to say or do in the circumstance.

She wasn’t crazy, she was institutionalised.

But of course she had no recourse, because nobody believes you when you’re classed as ‘mad’. However, after my father died and we could no longer afford the cost of the private hospital, my mother was moved to an NHS hospital. It was here that she did much better, reconnected with her sisters who would visit her, and was eventually discharged. It’s comforting to know that my mother had eight happy years working as a live-in house help and living independently before she died.

I thank the heavens that today there are much more useful, helpful drugs and better services. But postpartum psychosis is still a very serious illness that needs to be diagnosed very quickly, because of the potential danger to the mother or her baby, which is why we need more awareness. The symptoms may be amongst the worst of the childbirth-related psychiatric disorders, but the illness has a very good prognosis and most women can go on to make a full recovery.

Hopefully today, more women are able to stay with their babies while they recover and not become separated, like my mother and I were all those years ago, with such damaging consequences for her, for my father and for me.

If you’d like to read Alison’s full story, you can buy a copy of her book, A Secret Never to Be Told, here

 

 

 

 

 

 

 

 

Author Catherine Cho announced as APP charity ambassador to raise awareness of postpartum psychosis

We are delighted to announce that author and literary agent, Catherine Cho, is now an official APP ambassador.

Inferno: A Memoir of Motherhood and Madness, Catherine’s critically-acclaimed book about her experience of postpartum psychosis (PP), was published in 2021, providing readers with a poetic, honest and raw account of the illness and inspiring hope in recovery.

Catherine, who was shortlisted for the 2020 Sunday Times Young Writer of the Year Award, joins APP ambassadors poet, author and illustrator, Laura Dockrill (who experienced PP in 2018), and her husband, Hugo White (a musician and record producer, formerly of The Maccabees), to raise awareness of the illness.

PP is a severe and debilitating postnatal mental illness, triggered by childbirth, affecting 1,400 women in the UK and 140,000 women in the world each year. Half of all cases occur ‘out of the blue’ - with women having no history of mental illness. Symptoms include hallucinations, delusions, mania, depression, restlessness, anxiety, confusion, and unusual behaviour. With the right treatment, women can make a full recovery.

Catherine said: “It is important for me to become an APP ambassador, because it is so important to be open about postpartum psychosis. Maternal mental health, particularly postpartum psychosis, is something that holds so much stigma and shame, which makes it even more of a frightening and isolating experience. I hope that I can help APP in sharing my story and the stories of others. When I was in the midst of recovery, I couldn't imagine becoming well, but it was in finding this community and the kindness of others who were so open in sharing their stories that I could begin to hope that this would, one day, be a story from my past.”

 Jess Heron, CEO, Action on Postpartum Psychosis said: “Catherine has already done so much to raise awareness and challenge the stigma surrounding PP, not only through her book, but also through speaking in the media and at events. We are delighted to formalise and celebrate Catherine’s role with us, recognising the vast amount of work she continues to do.

“Suicide is the leading cause of maternal death in the UK. If we are to reach government targets of halving maternal deaths by 2030, more needs to be done. Women from black, Asian and minority ethnic communities report poorer experiences and barriers to care. Catherine’s networks and storytelling will help our charity deepen the discussion around the culture, community and stigma in the experience of PP, and begin to influence support for women affected by PP in the UK and around the world.”

APP is a collaboration between inspirational women with lived experience, world-leading academic researchers and specialist health professionals. Hosted by The University of Birmingham, APP runs an award-winning UK-wide peer support network, including a forum with over 2,800 users sharing experiences and receiving support; develops comprehensive patient information; trains frontline professionals; manages four NHS partnership contracts providing direct support to women in Mother and Baby Units; conducts awareness raising media work and facilitates research into the causes and treatments of the illness.

The charity also regularly works with authors, playwrights and screenwriters to raise awareness and tackle stigma, including supporting the publication campaigns of both Catherine and Laura’s memoirs. APP has supported a range of other fiction and non fiction books that explore postpartum psychosis including: A Secret Never to Be Told by Alison Cobb, Five Days Missing by Caroline Corcoran  and Are You Really OK by Stacey Dooley.

APP has supported a wealth of research on PP and will this year be publishing results of its second 10 year survey of care for PP in the UK, comparing Mother and Baby Units to General Psychiatric Units, and the charities’ 10 year impact report.

 Read more about Catherine’s story here

Gina’s story - My paranoia got worse on the psych ward – I only started to recover when I was reunited with my baby

I was taken by ambulance to an acute psychiatric mixed ward without my baby. I’d been having delusions since a couple of days after giving birth and at home things had got much worse. It was only when I was taken to Bethlem MBU and reunited with my baby that I finally started to trust people and get on the road to recovery.

My pregnancy was straightforward, a very lovely pregnancy. But I was overdue so things didn’t exactly go as planned and I ended up having an emergency c section. Unfortunately, both my baby and I had an infection so we ended up being on the postnatal ward for a week rather than the couple of days I was expecting. I had severe insomnia and I was taking strong pain medication and I think this might have all played a part in me getting unwell.

So I was in pain, medicated, emotional and exhausted. But I think the turning point was when I received a message from a friend with some bad news about another close friend of ours, which triggered some strange thoughts and symptoms in me and some extreme paranoia.

For example, I noticed that when someone sent me a message, my response wanted to say happy new year or happy Christmas and I couldn’t understand why I wanted to write it. I also believed that I was being tested as to whether or not I was a good enough mum. And every time there was a bleeping sound on the ward I thought it was because I had done something wrong.

I filled in a form to say that I wasn’t feeling great mentally, but as my paranoia got worse, I retracted the letter. I asked for it back and ripped it up. And then, even though I wasn’t well, at times I appeared, on the outside, to be fine. So it was decided that I was going home with my baby.

When I finally got home, all the paranoia ramped up and I never slept. I was stuck in the house and there were people coming and going – midwives, health visitors, family members.

It got to a point where I was really confused. I couldn’t give the midwife the correct information, and when my family visited from America I was confused about who was who and started imagining that my niece was my long lost daughter. Then I started going through phases believing that my son had died – so much so that when I went to register the birth I was convinced they were going to hand me a death certificate.

I just questioned everyone and everything felt really trippy, and I became obsessed with things like clocks, so my mum removed all the clocks from the house.

My family, realising there was something very wrong, tried to work together to get me some help. Eventually I was visited by paramedics and then a doctor who I think prescribed me an antipsychotic – they were trying to treat me at home at that point.

Meanwhile, my mum was doing her own research and found out about postpartum psychosis – so, in a way, it was my mum who diagnosed me! But I became quite aggressive and frightened, so they had to call the police and the paramedics, and I even had to be handcuffed in order to be taken to hospital.

They took me by ambulance to an acute psychiatric mixed ward without my baby.

The ambulance ride was frightening because I was convinced I was in grave danger and I thought all the medical professionals were fake – I thought they were really all terrorists.

So when I finally got into hospital I refused to eat or sleep or take medication. I was paranoid about everyone and everything.

Nothing was working and I was in full-blown psychosis, at the peak of my illness, and without my baby. Everything seemed crazy to me - but I was the one being crazy. I started doing morse code on the window, and became paranoid about different colours – anyone who had a pen or who was wearing anything in the colour blue I simply couldn’t trust.

As I wasn’t getting any better, they decided to take me by private ambulance to Bethlem Royal to the MBU there.

Thankfully, not long after getting to the MBU, things started to change.

I don’t know if I felt more comfortable because there were more women there, and because my son was able to come and stay with me, but I started trusting the staff and taking my medication.

I think it was also because there was more of a normal kind of atmosphere in the MBU and there was a really good programme with specialists who knew all about mums and babies. I had lots of help learning how to make a bottle up and how to change my baby’s nappy – something that was invaluable because, with PP, everything seems ten times harder. Plus, knowing my son was safe and close by meant I was able to start sleeping. I started getting a good eight hours sleep!

I stayed in the MBU for nine weeks.

I 100% believe that if I had gone in the MBU straight away I would have started my recovery straight away.

I think my parents and my husband were given the option of an MBU at the start, but they didn’t really understand what it all meant so I really wish there was more awareness about specialist services and why they’re so important.

Now I feel I’ve fully recovered. Since my son turned seven months I’ve been so active with him, visiting friends, going to baby groups. I love being a mum and I feel like I’ve been making up for lost time – doing all the normal things new mums do.

I’ve also gone back to work and I now work with a charity that helps people with learning disabilities and mental health problems. And I’ve started a mother and baby group to help provide peer support and a place for mums to be able to talk freely with other mums.

While the whole experience of having postpartum psychosis – and the anxiety and postnatal depression that followed - was frightening, in some ways I’m glad I experienced it. It’s helped me to relate to people, and to provide support to others because of my lived experience which is really valuable in my job, too.

I feel that its so important for me to be able to share that there is light at the end of the tunnel, there is hope - even when you’re seriously unwell like I was.

 

 

Ailania’s story - I was diagnosed early and treated in an MBU – others are not so lucky

I’d had some experience of mild depression in my late teens and early 20s, but nothing could have prepared me for becoming seriously unwell with postpartum psychosis.

Being pregnant for the first time, my husband and I were like fish out of water. However, it was a really straightforward pregnancy for the most part, and I felt in a good place mentally. We went along to antenatal classes – where there was a brief mention of postnatal depression – but I didn’t really consider it could be an issue for me as I felt really well.

However, towards the end of my pregnancy I became more anxious. I was overdue and I felt disappointed in myself because of that. Eventually, I went into labour naturally but had to have a forceps delivery because my contractions were inconsistent.

I was in so much pain and so exhausted when my little boy was born, I felt like I was in a state of numbness. I just felt so relieved that the birth was over.

After a little time in hospital, I started to feel really confused. I was given charts to fill in about feeding times and I just couldn’t get my head around them, which I found really distressing. I put it down to just being really tired.

We were discharged and I went home with my husband and new baby, and things seemed OK for the first couple of days. But then everything went downhill really quickly, and my husband suggested we go back to the hospital to speak to someone.

From my point of view, everything was really confusing at that point. I hadn’t slept for about five days straight, and my thoughts were just running wild – but there was no cohesiveness to them. I had this overwhelming sense that something terrible was going to happen, and I kept thinking that I might die, so I was in a state of constant panic. I also started to exhibit some quite unusual behaviour at that time, for example, I was dressing in winter clothes even though it was springtime, and I was obsessively cleaning the house.

That’s when my husband noticed that things weren’t right and phoned the hospital.

He shared his concerns and was advised to bring me straight back to the maternity ward.

By this point I had become obsessed with colours and the need for things to be colour co-ordinated in order for everything to be OK. I remember a nurse carrying a mug that was the same colour as her coat and I remember telling her that it made me feel better because the colours matched. I had this awful fear of something bad happening and I felt I had to prevent that by surrounding myself with matching colours.

I also started believing that I might have died, or that my baby might have died, and that the other parents in the hospital were actors and their babies fake. It felt as though we were in a film set or something, but I also remember thinking the TV set was sending messages to me and I was having auditory and visual hallucinations by then as well, and often not being able to recognise my own baby.

I was seen by a psychiatrist really quickly and she diagnosed me straight away with postpartum psychosis, explaining everything to my husband and mother in law and referring me to the nearest Mother and Baby Unit (MBU).

I was so lucky to be sent almost immediately to the MBU, which was only about 25 miles from our home in Edinburgh.

I’m from Belfast, and there is currently no MBU in the whole of Northern Ireland, so I knew that other mums in my situation wouldn’t have been so lucky.

My symptoms started to decrease during my time on the MBU, where I spent around seven weeks altogether. Initially I was under 24 hour observation, but then, as I started to get better, I was able to start building back my confidence and gaining my independence again.

After being discharged, I was still under the care of the MBU, and was regularly visited by an occupational therapist and a community psychiatric nurse – the same one I had met on the MBU.

Sadly, when my son was around seven months old, I became unwell again – but this time with depression. The first time I was admitted to the MBU it was on a section but this time I volunteered my admission, because I knew I needed help to get well and bond with my baby – and I knew that the MBU was the best place for me.

Getting a bed on an MBU twice meant that I was doubly lucky and it meant I was able to recover quickly and strengthen my bond with my baby. With the help of the staff at the Unit, I began growing in confidence as a mum and my love for my son really grew.

It was only during my recovery that my diagnosis was properly explained to me. At the time of my illness, I wasn’t able to process anything at all. But I remember feeling really upset because I’d never heard of PP and I felt really alone in it.

As I started to do my own research on what this illness was, I stumbled across APP and realised that I wasn’t alone at all – all these other mums had been through what I had. It made everything a lot easier to process.

Since my illness I’ve had a diagnosis of anxiety and PTSD, so I’ve just finished cognitive behavioural therapy for that, which has really helped.

Now I want to raise awareness of PP so that other families feel less alone, because it’s such a traumatic experience to go through. However, I do feel lucky that I got the diagnosis - and therefore the specialist care I so badly needed - really quickly.

Women need MBUs because they work. It’s frightening to think that some places, like my home of Northern Ireland, still don’t have them.

Action on Postpartum Psychosis statement: tragic news of Orlaith Quinn in Northern Ireland

We are deeply saddened by the tragic news about Orlaith Quinn in Northern Ireland. Our thoughts are with Orlaith’s family at this awful time. Our peer supporters are here for family members and anyone else who has been affected by postpartum psychosis.

Orlaith Quinn

Postpartum psychosis affects 1-2 in every thousand women who give birth in the UK. It should always be treated as a medical emergency and the recommended care involves immediate access to a specialist Mother and Baby Unit - of which there are currently none in Northern Ireland.

Sadly, there still isn’t enough awareness of postpartum psychosis - not only amongst the general public, but also amongst health professionals. This needs to change. Around half of women who experience postpartum psychosis have experienced no prior mental illness. Spotting the signs can be life-saving.

Action on Postpartum Psychosis works with health professionals to provide short training sessions that can significantly impact early diagnosis - helping professionals know when, where and how to signpost to specialist services. We also have a wealth of information available online to anyone who needs to find out more about the illness and its symptoms.

If postpartum psychosis is diagnosed quickly and treated appropriately, women make a full recovery from this severe and life-threatening illness.

Our trained peer supporters are here if you’d like to talk to someone. Find out about Action on Postpartum Psychosis peer support or contact us at app@app-network.org.

Find out about Action on Postpartum Psychosis training for health professionals.

Read about Action on Postpartum Psychosis research and campaigns.

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.

 

 

 

Nia’s story: I had to travel many miles from home to access an MBU

Living with bipolar meant that we had lots to consider when we were planning a family. We had to get the perinatal mental healthcare team involved from the very start to make sure we had a plan if anything were to go wrong. I knew that, because of my bipolar diagnosis, there was a chance that giving birth could trigger my symptoms, so there was talk of me being admitted to a Mother and Baby Unit (MBU) should I need that extra support.

I didn’t really know anything about MBUs at that point, and I was feeling really well so I felt confident that all would be OK. However, towards the end of my pregnancy more problems arose – I had preeclampsia, high blood pressure and gestational diabetes. It meant that I was under additional pressure, but my mental health still seemed to be on an even keel.

However, I was then told I had to have an elective caesarean and, because I’m on medication for my bipolar, I had to come off it 24 hours before the surgery. This was to allow the medicine to be removed from my body before giving birth.

I had the caesarean as planned on the 17th May 2019. Unfortunately, they had problems getting the epidural into my back so I had to be sedated. When I came round, they initially gave my baby to me but then immediately took him away again because he had a temperature and wasn’t feeding. He was taken into special care.

In the personalised care plan that the perinatal mental health team had put together at the start of the pregnancy, it stated that I needed to have my own, quiet room as lack of sleep can be a big trigger for bipolar symptoms. Unfortunately, somebody else needed the room so I was moved to a ward with crying babies. At this point, my baby boy was still in another part of the hospital.

Eventually, we were given a special care room together because, in addition to my bipolar risks, my little boy had to be tube fed. But by this point I was already becoming unwell. My mind was racing and I wasn’t sleeping.

The next thing I remember is waking up in the MBU in Manchester – many miles from our family home in North Wales.

Prior to being moved to the MBU, I was in a state of psychosis and my memories of this time are a complete blur. I think my mind has just shut out memories of the trauma, but it was a different matter for my husband, who was in the throes of it all, desperately trying to get me the right help. It was really difficult for him because the midwife was off, as was the care coordinator and the psychiatrist! I was initially transferred to a PICU (Psychiatric Intensive Care Unit) in North Wales but then I was moved to the MBU in Manchester as there was nothing closer to home.

I was grateful to have access to an MBU, as it meant that I was able to stay with my baby. But the fact that we had to travel two hours from home made life really difficult. Each day, my husband was travelling for four hours between the hospital and our home, and doing a full time job in between all the travel. The stress he was under was immense.

Regardless, Tommy continued to visit every day and that’s something I am so grateful for because, when you’re in hospital so far from home, it can feel really isolating and lonely. Two hours is a long time when you’re in mental health crisis. I did make some friends in the MBU, but when you’re so far from home it makes everything feel ten times harder.

I had to have ECT (Electro Convulsive Therapy) whilst I was at the MBU, but this was a treatment that had worked for me in the past and, combined with the medication, I started to slowly recover.

Eventually, I was allowed overnight stays at home, then visits for a few days at a time and then, by around the end of July, I was finally discharged. Getting home was such a good feeling, and I really started to feel well again.

However, unless something changes, I don’t think we’d consider another baby as the experience was far too stressful and traumatic for the family.

There’s a national shortage of MBUs overall but, where I live in North Wales, we literally don’t have one at all. I remember the doctor telling me that, if we decided to have another baby, I would probably need to give birth in England so that I had quick access to specialist care if I became mentally unwell again. Because I’m Welsh, I really wouldn’t want to feel as thought I was forced to have my baby in England.

I’m also not confident that we’d be able to get in to the Manchester MBU again. There is such a shortage of MBU beds, so, if we couldn’t get in, it could mean travelling even further away – and the strain on Tommy, and myself and the baby, would be unbearable.

I know how lucky we are to have our baby boy but we’d love for him to be able to have a baby brother or sister. For women like me living in North Wales who are at risk of serious postnatal mental illness, there needs to be specialist care closer to home. I know I definitely communicate better in Welsh, especially when I am unwell, so having support in the Welsh language is also really important.

This is why I’m campaigning for an MBU for North Wales – so other new mums and their families can access support in their first language and to stop so many having to travel so far from home to get the essential care they need.

 

Zebunisa’s story: As a psychology graduate I had lots of technical knowledge about mental health – but I still couldn’t see how bad my illness really was…

Having a baby is a significant, wonderful and stressful time of life. But when giving birth coincides with family weddings and various other things that life throws at you, that stress can be amplified tenfold. In the days after I gave birth, I remember feeling vulnerable, exhausted and highly emotional.

So far so normal.

However, by day five things for me and my family were definitely not normal.

I became quite elated but I was also really confused and, I’m told, acting in quite a bizarre way. Running naked around the room was certainly not normal for me, and neither was telling anyone and everyone my personal problems. So after seeing the breastfeeding support team and speaking with them as if they were my counsellors, they suggested I see the crisis team. They could tell something simply wasn’t right.

However, for some time it was difficult for the people around me to see just how unwell I was. Because I have a masters in forensic psychology, I was regularly articulating all this knowledge and all these psychological terms and, seemingly, demonstrating insight into what was happening to me.

But in reality, I wasn’t just a bit switched on and alert, I was far too switched on. In fact, you could say I was behaving like a mad scientist!

By this point I had racing thoughts and I was hearing and seeing things that weren’t there. I was also talking at a hundred miles an hour, sending hundreds of messages to people and constantly writing and researching. These behaviours were symptoms that I recognised from my study, but, unfortunately, even though I recognised what was happening it didn’t instil in me just how unwell I was.

Conversely, I was elated. I felt as though I was solving some kind of puzzle and having my eyes opened to the experiences that others I had worked with had gone through.

From that point on things became blurry. My husband called the crisis team and I know that they assessed me over a period of five days and told me that I needed to go to a Mother and Baby Unit (MBU), but I refused to go.

Eid was fast approaching and I was determined to stay at home and host the family for the big day as we had planned. I kept telling everyone that I knew my rights, that I had insight and I was informed enough to make decisions but, even though I had all the technical knowledge, my illness stopped me from seeing just how poorly I had become.

Eventually, they managed to get me admitted to an MBU in Nottingham, so it wasn’t too far from home. When I arrived there I was both confused and elated – I’d worked in these kinds of environments and I became excitable. At one point I believed I was there to deliver a PowerPoint presentation to the doctors! I was constantly ‘researching’ but I wasn’t using books or Google – I was using my mind and my racing thoughts and writing everything down.

I didn’t trust anybody, so when they tried to give me medicine it was a real challenge. I would ask for all the relevant paperwork, requesting printouts and saying I needed to be kept fully informed.

After a while, I remember finding a leaflet in the MBU about postpartum psychosis and when I read up on it I began to recognise that it was what was happening to me. I had been told by health professionals that this was probably my diagnosis but until that point I refused to believe them.

Eventually I started trusting their care and taking the meds, which I continue to take to this day.

However, my moods were all over the place and it was as though everything about my personality was 10x what it normally was. I’m a clean person, but I became obsessed by cleanliness, at one point spending three hours straight in the shower. I also became really angry with my husband when he tried to decorate the room for Eid and I ripped everything back down again. I was constantly having tantrums but my husband kept visiting, he kept supporting me and just being there for me.

Although I don’t remember all of this, the staff and family have since filled me in on some of the things that happened.

After about three months in the MBU, I started to think I was much better. However, after the psychotic symptoms died down, I was hit with depression and anxiety. All of these different mental health problems were affecting me. Before giving birth, I hadn’t experienced any mental health problems at all...

Now I want to help others. I personally found a lot of support and strength through APPs network and I want to give something back and to let others know that you can recover from PP.