All posts by Lucy Nichol

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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Danielle’s story: As a midwife, I was shocked that this thing I’d learned about in my career had actually happened to me

Danielle had been a midwife for over four years when she and her partner decided to try for their own family. Sadly, Danielle experienced a miscarriage before she was able to carry to full term, which meant that she was quite anxious while carrying her daughter. However, other than the worries and her morning sickness, Danielle’s pregnancy was relatively trouble free.

The birth, however, wasn’t the low lights, birthing pool experience that Danielle had hoped for and she had to undergo an emergency C-section after her induced labour didn’t go to plan. Add to that problems with an ineffective epidural, a haemorrhage and the fact that her baby became stuck resulted in a very painful and traumatic birth.

When Danielle got into the post op area she knew something wasn’t right but couldn’t put her finger on it. She felt emotionally and physically battered by the whole experience, and, instead of focusing on her baby, all she could talk about to her family, friends and colleagues was the trauma of the birth itself.

On day three, Danielle and her new baby daughter were able to go home which was both an anxious and an incredibly exciting time. As she walked in through the door and saw her pet husky, she immediately felt frightened that her beloved pet was evil and wondered why she was staring at her baby. She asked for her dog to be locked in another room.

As the days went by and visitors dropped in, Danielle could only talk of her traumatic birth and was able to focus on little else. She became unable to sleep and would stay awake all night for the feeds, rather than setting her alarm. Danielle also became obsessed with expressing milk however, because her mind was racing and she wasn’t eating or sleeping, she became unable to supply the breast milk her baby needed.

As the days wore on, Danielle became argumentative with her partner and everything became a huge issue. At this point, she convinced herself that she was suffering from postnatal depression. However, she also became convinced that her partner was suffering from post traumatic stress too and was preoccupied with finding him some help.

On day fourteen, after more arguments, Danielle told her partner to pack his bags, convinced that he was the problem. With this behaviour being so out of character, Danielle’s partner confided in both his mum and Danielle’s mum and both came to speak with her. On arrival, they found Danielle had locked all the doors and shut all the blinds and was unwilling to speak to anyone, getting angry and aggressive.

On that night, a GP visited Danielle and made her an appointment for a psychiatric assessment the following morning. At the appointment, Danielle couldn’t even read the papers in front of her that she was asked to sign - all the words had become blurry and back to front. At this stage she was sectioned.

While on the ward, Danielle had even forgotten that she’d given birth, having to check her caesarean scar to see if it had really happened. She became paranoid and was reluctant to take the prescribed drugs, thinking that the doctors and nurses were trying to kill her.

After a visit from her mum and her partner she eventually took her meds and slept for twenty hours straight. On waking, Danielle still felt incredibly confused, but she could feel parts of her old self coming back. She was given a leaflet on postpartum psychosis and was shocked that this thing she had learnt about during her career had actually happened to her.

Once the antipsychotics started to take effect, Danielle was moved to a mother and baby unit (MBU) to be reunited with her daughter. The MBU was brilliant and Danielle was able to meet other mothers going through the same thing and get the dedicated support she so needed. However, the MBU was three and a half hours away from home so it was a struggle for family to visit.

After less than ten nights in the MBU, Danielle was ready to go home. This is when the postnatal depression (PND) kicked in. Danielle says that the PND was so much worse than the psychosis because, with the psychosis, you don’t really understand how you feel or what is happening. She spent weeks continuing with her antipsychotic medication as well as antidepressants, but the depression persisted for around eight months and she really struggled. However, after eight challenging months, Danielle felt ready to return to work and started to feel like herself again.

Today, Danielle is feeling happy and confident as a mum and midwife and has a much greater understanding of postpartum psychosis having been there herself. She hopes to raise awareness to help other new mums who might be experiencing similar challenges.

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Charlotte’s story: I began campaigning so other mums didn’t have to go through what I did

Charlotte had never heard of postpartum psychosis (PP) when she gave birth to her first child in 2012. However, it was when she was still in labour that she first experienced the hallucinations, delusions and intense anxiety that comes with PP. Unfortunately, due to a lack of awareness at the time, it was wrongly assumed that Charlotte was suffering from PND (postnatal depression) and it would be another six months until the real nature of her illness was ever confirmed.

Having lived with extreme anxiety disorders, an eating disorder and alcoholism from a young age, mental health had always been of concern. So when Charlotte fell pregnant with her first child, her midwife referred her to the Cardiff perinatal mental health team – just to be safe. She was able to speak at length with a psychiatrist about the risks and was assured that, with Cardiff’s MBU in operation, there was a clear pathway to care should she need it.

Funding cuts, however, soon took away this much-needed safety net resulting in an extensive period of acute mental ill health for Charlotte.

25 years of age and overjoyed to be pregnant, Charlotte was looking forward to welcoming her first child into the world. However, things became difficult after 33 hours of labour, when Charlotte began hallucinating. She was convinced that there were men in white coats walking in and out of the labour suite, but when Charlotte asked her husband and midwife why they were there, they had to tell her that there was nobody there. The midwife assumed that Charlotte’s hallucinations were the result of confusion from extreme tiredness and the gas and air she was given.

The labour continued and was long and traumatic. Charlotte had had little to no sleep for a week and suffered a postpartum haemorrhage – further adding to her distress. Her husband was sent home three hours after the baby was born, and she was transferred to the maternity ward.

Left feeling alone and scared, coping with frightening delusions and hallucinations as well as learning how to hold and feed a baby for the first time, Charlotte was plunged into a world of paranoia and fear. Her head spinning, all she could hear was whispering coming from the cubicles around her, as if everybody was talking about her behind her back. Even though her baby was crying, she desperately wanted to run away and, at one point, sat on the wall outside of the hospital feeling detached from reality. Charlotte even believed at this point that she might be dead and looking down on herself from above.

The next morning, Charlotte was too terrified to tell her psychiatrist about the whispers and the hallucinations. She was already paranoid that people were trying to take her baby away, and so believed that confiding in them about the strange sensations she was experiencing would only strengthen their case for removing her child.

Instead, Charlotte assured her psychiatrist that all was well and that she just wanted to get home to sleep.

As the weeks went by, however, Charlotte’s mental health got much worse and her husband took her to see the doctor. Charlotte was still too afraid to tell anyone about the voices and whispers – as well as the new delusions she was experiencing – where she believed that her husband was drugging her. The doctors diagnosed her with PND.

At this point, Charlotte was seeing and hearing things that weren’t real on a daily basis – whether it was something small like a mouse running across the floor, or something big and traumatic, like her husband jumping through a closed window. Eventually, six months after giving birth, the mental health crisis team were called and came to see Charlotte in her home. She had been talking to the radio and her husband had witnessed this and been really taken aback – it was the first time he had seen first hand the extent of Charlotte’s symptoms. She was immediately diagnosed with PP.

But just when she needed the MBU in Cardiff for emergency care, she discovered it was due to close. Other than travelling hundreds of miles away from home, a general adult psychiatric ward was the only option for inpatient treatment. However, because Charlotte was unable to take her baby with her, and because she was already so terrified that people were trying to take her baby away from her, it simply would have made matters ten times worse.

Instead, Charlotte received home treatment which involved a combination of medications and lots of support from her husband, who had to dedicate his time to looking after her.

Eventually, Charlotte found herself responding positively to the treatment and, when her baby turned one, she was back to full health. But knowing what she knows now, that other women experiencing PP can often recover within weeks when they have access to specialist care at an MBU, Charlotte is determined to raise awareness and campaign for more of these services so that other mums don’t have to endure the year-long illness like she did.

Charlotte believes that, had the MBU been available to her in 2012, she would have If the MBU had been available to her in 2012, Charlotte

Knowing that increased awareness and having the right specialist support services close by would have given her back the year of her life that was lost to psychosis, Charlotte began campaigning to stop other mums having to go through what she did.

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Sally’s story: I believe that ECT and peer support saved my life

When I was separated from my baby daughter for hospital treatment I became convinced that something terrible had happened to her. For a time, I even believed that she might have died. For a woman experiencing postpartum psychosis (PP), the trauma, separation and anxiety was unbearable.

You have these ideas of starting family life in a bubble of happiness. Of course, we know that labour is painful and that sleepless nights are to be expected. But my experience was wildly different to what I was expecting.

Immediately following the birth of my gorgeous baby girl, Ella, was one of the most terrifying, inescapable nightmares I could ever have imagined. I was in such utter pain and despair day after day that I constantly thought of walking into the sea near our home in North Wales.

I’d had a relatively smooth pregnancy – nothing out of the ordinary. However, I was a week overdue and I was showing some signs of preeclampsia, so I was induced. The labour was difficult and Ella’s heart rate kept dropping and she was in distress, so eventually, she was born by Caesarean Section. But as I came round from the anaesthetic my confusion was off the scale.

I didn’t understand what was happening and, as such, I had a brain scan for a suspected stroke, which thankfully came back negative. I was simultaneously pleading with the nurses to sit with me as I was so scared about what was happening, and paranoid that they were talking about me. A few days later I got up to go to the toilet and collapsed, sobbing and refusing to get up.

In my mind, I believed that I'd died.

Everything was frightening and intense. The sound of babies crying was deafening, the whirr of the air conditioning unit overwhelmed me and the canteen trolleys sounded like trains crashing through the ward; lights being switched on were like explosions and I could see shadows on the wall. I saw a midwife take Ella away, and immediately believed she was being resuscitated because something awful had happened or perhaps I'd harmed her.

All throughout, I remained convinced that I'd hurt my baby and that I had died and was now living in the 'after life', a kind of hell. The nurses brought Ella to see me, to reassure me she was ok, but I was convinced they'd swapped her and that she really wasn’t OK.

I now know that I was having a psychotic episode.

My husband, Jamie, was informed that I was suffering from PP and I was transferred to a general psychiatric ward. I was prescribed anti-psychotic and anti-anxiety medication. I was also separated from my baby which made me constantly anxious and reinforced some of the beliefs I had about her being swapped or coming to harm.

A week later, I had a review with the consultant and I told him things were better than they were just to be allowed out of there. A home treatment team was arranged to visit me every day but things didn't improve much. I'd manage to help meet Ella's basic needs, change and feed her. But I was going through the motions.

I then hit an extreme low, a bleak depression punctuated with psychotic symptoms.

Ten months after coming home, I told Jamie that I couldn't go on. My husband, who'd done so much to help me, was distraught. Determined to help, Jamie did a literature review on PP treatments and  electro-convulsive therapy (ECT) came up a lot. We found and asked to be referred to a world-renowned expert in PP. He agreed that ECT might help me.

There’s a lot of stigma around ECT – and you immediately think it's a barbaric, horrible treatment, involving being strapped to a chair and electrocuted. To be fair, it is fairly dramatic - you're anaesthetised and electrical currents are passed through your brain to trigger a seizure. But for someone like me, who was so acutely and chronically unwell, it was something that really helped.

Half way through the ten sessions, there was a shift in my thinking. Something terrible was being lifted from me. I believe ECT, along with the amazing peer support I received from other women who had experienced what I had, saved my life.

Gradually, I've grown stronger and my bond with Ella has become stronger too. It's sad to think about what I've missed out on but now I look at her and get excited that everything's ok and that we're here - happy and healthy.

Once you've suffered from PP there's a high chance of it recurring with subsequent pregnancies. It's a very personal choice, but even if there was only a slight risk of going through that again, for us, it's just not worth it.

But it's very important to me to give hope to others going through the horrors of PP. You'll be convinced it will never, ever end. I was convinced too. But today, I am recovered and living a happy and fulfilling life.

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Peer support service launches in Morpeth for mothers experiencing postpartum psychosis

A partnership between Cumbria Northumberland Tyne and Wear NHS Foundation Trust (CNTW) and national charity Action on Postpartum Psychosis (APP) is creating an invaluable peer support service for women experiencing severe mental illness following the birth of their child.

The Beadnell Mother and Baby Unit in Morpeth, which is run by CNTW, has contracted APP to deliver this much-needed support. APP is currently recruiting for someone who has experienced postpartum psychosis to join the team as a part time Peer Support Worker.

The Mother and Baby Unit exists to support women experiencing severe mental illness in pregnancy and following birth, with specialist support available to treat conditions such as severe postnatal depression and postpartum psychosis. The Unit also provides specialist mother and baby classes, activities such as parent and child swimming and baby massage classes, and overnight facilities for partners – with the core aim of keeping families together to support a faster recovery and better quality of life.

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.

Allison Spiers, Ward Manager at the Beadnell Mother and Baby Unit, said: “We work very closely with APP to support mothers who are experiencing postpartum psychosis, and we are really pleased to be growing that relationship by welcoming a new Peer Supporter employed by APP into our team.  Not only will they offer vital one-on-one support to new mothers at a very distressing time in their lives, this Peer Supporter will also support group work with the women on our unit, and provide training to ensure our whole team continue to develop an in-depth understanding of postpartum psychosis. At CNTW we believe that service users and carers with lived experience of mental ill-health should be at the heart of everything we do, and employing Peer Support staff is an integral part of this.”

Dr Jess Heron, CEO, Action on Postpartum Psychosis, said: “We know that CNTW are already big believers in the value of peer support and lived experience engagement. The service that they provide to new mothers and families at the Mother and Baby Unit is outstanding, and, by combining this with the new peer support role women will receive a truly holistic and specialist treatment. Being able to support women and families at this critical stage, as they go through this frightening experience and begin to recover, is key to reducing the trauma, giving hope, and helping women and families feel less alone as they navigate the recovery process.

“This vital service will benefit women affected by postpartum psychosis and their families across the wider North East region. As a national charity we are campaigning to see more Mother and Baby Units like this one open up around the UK, to help save lives, promote recovery and to keep families together.”

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 CNTW on this project and I’m looking forward to starting to build our volunteer team and 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, click here

 

Only Mother and Baby Unit of its kind in Wales to open in Swansea Bay

A new unit has been set up to help women in Wales who experience serious mental health problems during pregnancy and following the birth of their child.

Uned Gobaith (‘Unit of Hope’) will be the only inpatient unit of its kind in Wales to offer multidisciplinary mental health care to women from 32 weeks of pregnancy until their baby is one year old.

Until now, mothers who needed serious mental health care have either been supported in the community, admitted to acute mental health wards without their babies, or have had to travel to one of the specialist mother and baby units in England.

At present, the closest unit for women living in the Swansea Bay UHB area is in Bristol.

Based at Tonna Hospital, near Neath, the new unit is designed to be a home away from home where mums will have access to specialist care for themselves and their babies.

It has six individual bedrooms for women and their little ones. Mums who are admitted will also have access to a shared living room and kitchen areas along with a playroom, quiet room and sensory room.

In addition, accommodation will be available for family members travelling from further away to visit their loved ones.

Supporting the mothers and their babies on site will be a multidisciplinary team that includes psychologists, mental health nurses and psychiatrists, as well as social workers, health visitors and midwives.

Nursery nurses will be on hand around the clock too, to look after babies while mothers rest or receive treatment.

Uned Gobaith was commissioned by the Welsh Health Specialised Services Committee, and made possible thanks to Welsh Government funding and support from mental health specialists in community and inpatient care.

A patient and service user group also gave crucial feedback during the development process, and chose the unit’s name.

Dr Jess Heron, CEO, Action on Postpartum Psychosis (APP), added “APP’s staff and lived experience volunteers in Wales have been campaigning for this unit for several years, and we have worked closely with the MBU development group to ensure that the voices of women with Lived Experience have shaped all aspects of the design of the new unit. Today’s news is testament to the power of positive collaboration, shared experiences and person-centred approaches to care.”

Toni Evans, 34, from Port Talbot, experienced serious mental health problems during and after her second pregnancy. Now a member of the patient group, she believes a local unit like Uned Gobaith would have made a huge difference to her treatment and recovery.

“It just got worse and worse as the pregnancy went on,” Toni said.

“The depression just got unbearable. I remember ringing my husband on the way to work one day saying that I was going to drive into a wall because I just needed help. Obviously I didn’t, but I just wanted to get out of it.

“Once the baby was born, I started medication straight away, but within two weeks my mental health deteriorated even further.”

Toni was seen by a mental health crisis team and, with the support of her “amazing” midwife, she was admitted to an acute mental health ward.

This type of ward has no facilities for babies or small children so Toni spent three days away from Sarah while she was assessed.

While she was in hospital, a member of the Perinatal Response and Management Service (PRAMS) team (which works with women at risk of developing mental health problems during pregnancy and after birth) told Toni a space was available at a specialist mother and baby mental health unit in Derby.

“At this point I couldn’t really think, I couldn’t answer questions so my husband had to say yes for me,” Toni said.

Toni and Sarah made the daunting 180-mile journey with two chaperones and a driver she had not met before. Arriving at 8pm, she struggled to get her bearings properly in a completely unfamiliar place.

“When we finally got to the unit, I didn’t want the chaperones to leave – they were part of home, they were Welsh, they were from where I’m from,” Toni said.

“I was being left in England, in a different country to where my family was.”

While Toni did make good progress in the seven weeks she was at the unit, the distance between her and Sarah in Derby, and her husband and son at home in South Wales was very hard for them all.

“My husband would come and visit but it had to be every other weekend because he had to take time off work and take my son out of school,” Toni said.

“And it cost a lot of money, driving up there and staying in a hotel.”

If there had been a unit closer to home, Toni believes it would have made a real difference to her family, her recovery and her transition back to home life.

“The people that I was in the unit with were local so they would have visitors a few times a week. I really was on my own up there,” she added.

The distance also meant that Toni went through a different going home process. While other patients would get to go back to their families for a few hours at a time before building up to overnight stays or weekends, Toni travelled to Port Talbot for week-long stays.

She had the support of local mental health specialists but it was hard for her to drop back into home life again.

“That was a difficult transition to go from being in the unit where you are so incubated and then back into the big wide world for a week with the baby and your family and everyday life,” Toni said.

“Some mums would go home for a little bit and it would be too much but they could go back to the unit.

“I didn’t have that choice. I had to travel four hours home and then if I didn’t like it, I’d have to go four hours back.

“It was just more pressure. I didn’t want to make my husband do that trip unnecessarily when he was doing it on weekends. It felt like I should suck it up and get on with it at home.

“It made a big difference to my recovery.”

After seven weeks of support and mental health treatment at the unit in Derby, Toni and Sarah made the journey home for a final time.

That was not the end of Toni’s mental health journey, however. When Sarah was six months old, Toni had a manic episode and went back into hospital for four weeks.

But this time there were no beds available in any mother and baby unit, so Toni was taken to a mixed acute mental health ward - without Sarah.

Toni has since been diagnosed as bipolar and is taking positive steps forward in her mental health journey.

But she feels that if she had been able to go to a unit closer to home, her experience of inpatient treatment would have been “completely different” – and is vital for other mothers’ recovery.

“I think it would have been a lot smoother and I wouldn’t have felt so isolated there. I was missing my son – at the time he was four years old – and my husband.

“I felt like I had taken the baby away from them because they weren’t able to visit,” Toni said.

“A unit here is just going to make an unbelievable difference for mothers in Wales. It definitely would have made a difference to me.”

Uned Gobaith is due to open in mid-April and will be accepting mothers and babies for treatment immediately.

Janet Williams, Associate Service Director of Mental Health and Learning Disabilities at Swansea Bay University Health Board, has been part of the team leading the unit’s development.

Janet said, “When Uned Gobaith opens, we will be able to help women like Toni who are experiencing serious mental health problems, and their babies, in a safe environment much closer to home.

“This important service will significantly enhance perinatal care services across Wales and we are very proud to be hosting it in Swansea Bay University Health Board.

“It will be the only mother and baby unit of its kind in Wales, and its development has only been possible with support from a wide range of experts, teams and patients across the country.”

Minister for Mental Health and Wellbeing, Eluned Morgan, said: “It is fantastic news that we have our own perinatal mother and baby unit in Wales to support those struggling with their mental health.

“This will make a significant difference to the experience of new mothers as they will be able to get the specialist support that they and their babies need closer to home.

“We all know that the pandemic restrictions have added to the challenges during this last year and so I welcome the addition of this facility which will complement our strengthened perinatal community offer.”

Sharon Fernandez, National Clinical Lead for Perinatal Mental Health, said: “The opening of Uned Gobaith is a huge step forward for the treatment of pregnant women and new mothers experiencing severe mental distress.

“Providing this kind of specialised mental and emotional support for women at one of the most vulnerable times in their life is essential, and the family-friendly environment Uned Gobaith offers means that partners and older children can be involved and get the support they need too.

“As a network, we were very pleased to play a role in the development of Uned Gobaith.

“Its opening is a tribute to the hard work and commitment of everyone involved, especially the many women who shared their own personal experiences of perinatal mental health difficulties in order to improve services for others.”