Tag Archives: postpartum psychosis

In memory of Margaret Oates

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Here at APP we have all been deeply saddened to hear of the death of the hugely inspirational Dr Margaret Oates.

A Consultant Perinatal Psychiatrist at Queen’s Medical College, Nottingham, Dr Oates made significant strides in perinatal mental health care, positively impacting many women and families in the UK and beyond. Indeed, so significant is her legacy that there are two MBUs named after her - one in Nottingham and one in East London.

Dr Giles Berrisford, APP Trustee said:

“Dr Margaret Oates OBE has been an enormous inspiration to many throughout her life. She dedicated her working life to improving the lives of women and families affected by perinatal mental illnesses. She recognised the importance of the obstetric pathway and the psychiatric pathway working together, so that no women are left behind. She led to the opening of the Mother and Baby unit in Nottingham which is now one of two eponymously named MBUs in England – the other being in Homerton, East London

Dr Oates worked tirelessly to influence national policy– changing and shaping maternal mental health forever. She was the 1st Chair of the Clinical Reference Group for perinatal mental health for NHS Specialised Commissioning, advising on how MBUs should be commissioned.

The expansion of services around the UK since 2016 is a direct legacy of Dr Oates’s inspirational work. She has inspired many to pursue careers and to develop services in perinatal mental health. We have a lot to be very thankful to Dr Margaret Oates for and she will be greatly missed.”

Dr Oates was the pioneer behind the sub specialty of perinatal psychiatry and set up the specialist faculty within the Royal College of Psychiatrists. She was also responsible for developing the work of the Confidential Enquiry into Maternal Deaths in relation to mental health, identifying the impact of mental illness on the mortality of women during pregnancy and into the postpartum period.

She also established a series of ‘red flag’ warning signs to enable healthcare professionals to identify women at risk of perinatal mental illness, and established the Perinatal Quality Network as part of the College Centre for Quality Improvement, embedding lived experience at the heart of the system.

Dr Jess Heron, APP CEO said:

“Dr Oates worked with the same zeal and dogged determination whether she was addressing care inadequacies for an individual woman or putting systems in place which would improve the care of all women with severe postnatal mental illness.

She worked hard to ensure that perinatal mental illness and suicide were included in the confidential enquiries into maternal deaths, giving us a clearer picture as to the devastating impact of PP - and other serious mental health problems - on the lives of women and families nationally.

Her advocacy and truly anarchic approach has undoubtedly saved lives, and we her legacy will live on for generations to come”.

Members of our volunteer community who have been personally supported by Dr Oates have also shared their words and memories, including Cheryl McAulay-Wainwright who said:

“I first met Margaret in 2004 when I was suffering with postpartum psychosis. Margaret was my consultant at the time and I will be forever be deeply grateful for the care that she provided me. Her smile was warming and made me feel safe and at home. It was during a time where I had lost myself - and she helped me find me again.
I went on to work within the Hopewood Mother and Baby Unit when it was first opened and was named after Margaret Oates. I was lucky enough to spend time working alongside her colleagues who would often talk about what a presence Margaret was and the huge developments she made for National Perinatal services and the care that women received.
I wouldn't be where I am today without the care that Margaret and her team gave to me.
Dr Margaret Oates OBE is a true inspiration and will be missed by the women and children she cared for and of course many more.”

Our thoughts are with Dr Oates’ family. We will never forget all that she has done in the field of perinatal psychiatry and beyond.

Nicola’s story: I had to leave my dream job to look after our baby

Personal Experiences, , ,

My partner, Arina, was only in the MBU for a couple of months when she was discharged. It wasn’t that she was well enough to come home, it was because they said she wasn’t making any progress. Our baby had already been discharged, and I had taken time off work to be a full time parent. But then when Arina came home as well, I realised that there was no more support available to us and I had to leave my job as an ambulance care assistant – something I had worked so hard for.

It was December when Arina gave birth to our daughter. I hadn’t realised that there was anything wrong at first. Our baby cried a lot, and we were told she had reflux so Arina was naturally anxious and, because I’ve got three older children, I just put it down to it being early days.

Arina had struggled with mental health problems prior to giving birth, and she had been diagnosed with BPD (borderline personality disorder) which is a serious mental health issue that can cause overwhelming, distressing and changeable emotions.

When I was due to return to work after our baby daughter was born, Arina mentioned that she was feeling really anxious. It was New Year’s Day and, because I was expected in work on the 2nd, I contacted Arina’s sister who lived a couple of hours’ drive away to ask if she’d come and stay, which she did. However, she contacted me at work saying she was concerned about Arina who was really struggling and distressed, and she suggested she could take the baby for a couple of nights so that we could get Arina some help.

I reluctantly agreed, and we contacted the crisis team, who came out to see Arina but they weren’t very helpful – simply suggesting that she take a bath, have a cup of tea and get some sleep. But the problem was she couldn’t sleep. And I could see that she was incredibly vulnerable.

We were due a visit from our health visitor so I collected our daughter from Arina’s sister’s and brought her home. I was at work on the day of the visit, but they called me and said I needed to come home otherwise they would need to remove our daughter. They felt that it was unsafe to leave Arina and the baby alone as they suspected Arina had postpartum psychosis. I went straight home as they tried to find an MBU to get the care Arina clearly needed. However, it was a real struggle because the crisis team maintained that she didn’t need help.

Eventually, we managed to get Arina in to see the GP – she was incredibly anxious by this point. The GP agreed that Arina needed help and, the following day, we finally got the call saying that she could be admitted to the MBU.

Because of Covid, I literally had to drop Arina and my daughter at the MBU door, which was heartbreaking. Leaving your partner and daughter, not knowing how they might settle in or where they were going to sleep, was really difficult. I had also developed a really strong bond with our baby so it was difficult being separated from her as well having previously spent 24 hours a day with her.

The MBU was about a 45 minute drive away from our home as well, so I was having to work full time and travel every day for the one hour a day visit, and it was emotionally and physically draining.

After about a month, I was shocked when the MBU suggested our daughter should come home with me. Arina had mentioned that the MBU staff were still carrying out most of our daughter’s care, and they suggested that Arina needed some time on her own. I was worried because I needed to work to bring the money in, and also because I thought Arina should have the opportunity to bond with our daughter.

I arranged time off work, thinking it was just for a few days but, as time went on, nothing was mentioned about any plans for our daughter to return to the MBU. I was taking her back and forth every day to see Arina and then looking after her the rest of the time on my own.

I had been working with the Ambulance Trust and had only just started the job in the October, so I was devastated at having to take so much time off. Eventually, I was told by the MBU that Arina needed to be referred to an adult psychiatric ward for further treatment but that they couldn’t find a bed, so she would need to come home. We were told at that point that we would get some childcare support to enable me to go back to work part time but nothing materialised.

So, after two months in the MBU, Arina was also home, and I left my job and had to claim benefits to keep us going. Arina applied for PIP (Personal Independence Payment) but that was eight months ago and we still haven’t got it so we are relying on basic benefits – other than £5 a week for baby class. We just feel as though we have been left completely on our own.

It’s quite difficult, as a same sex couple, to access support because everything for partners seemed to be targeted at ‘dads’ or ‘fathers’. I couldn’t see anything that felt it might include me. However, during a conversation with an old friend who I discovered had herself been in an MBU, she told me that she’d seen a story on the APP website about a same sex couple so I had a look straight away and reached out to Ellie from the peer support team.

Since meeting Ellie, I’ve been put in touch with another female couple and we’ve been in contact regularly, texting back and forth, and it’s been a lifeline. It’s just so good to have someone you can actually relate to.

There are still challenges we are facing because of our situation though. For example, because I’m not on the birth certificate I have to adopt our daughter, so being classed as a full time parent I currently have the responsibility but not the legal rights, so I can’t even open a bank account for her or register her with a nursery. This is really tough because Arina is still struggling with her mental health as well. And, on the flip side, the social workers have told us that, once I adopt my daughter, they will no longer be able to support us at all – so it feels like a lose-lose situation.

The thing that keeps me going, however, is reading the stories of others, and speaking to Ellie and the couple that APP put me in touch with. While everyone’s experience is different and unique, there is always something you can relate to. It makes such a difference knowing that you’re not alone.

 

Mental health is such a taboo subject in Africa – so finding peer support meant the world to me

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Anon

Mental health is still such a taboo subject in Africa. It’s so hush hush, and nobody likes to speak about it because people are so fearful of mental health problems. If you do talk about it, people might not believe you, they might think you’re faking it or, in some cases, they might even think you’re possessed.

I was born in the UK but my parents are from Uganda, East Africa, and my husband was born in West Africa. So when I became unwell with postpartum psychosis (PP) some of our wider family really didn’t understand – which is why I see peer support as invaluable.

I ended up being admitted to an MBU after having both of my children. The first time was because I had PP, and the second time it was because I had severe depression.

My first child was born in December 2014. I started to get symptoms of PP not long after the birth. I remember being in my living room and hearing voices, and everything around me seemed to be heightened. We had a train track outside the house and every time a train went by it felt so loud it was as though the train was actually going through the house.

My husband was worried that I might have the baby blues, and that when I was hallucinating the sound of my baby crying he thought it might be like hearing a phantom cry. But as my symptoms progressed, the hallucinations became terrifying.

I could hear voices telling me to kill my baby and I was convinced the devil was speaking to me, as though I was being taken over by some kind of evil spirit. I told my husband, and we decided to go and stay with my in laws because I was so scared staying on my own in the house. I was becoming really manic and I hadn’t really slept properly since the birth.

Other symptoms included being on high alert, talking really quickly and loudly, and over sharing.

As the days progressed I remember there was one night that I became really aggressive. While my daughter was sleeping soundly upstairs I was downstairs and not acting like myself at all. I picked up the dining table – which for someone who had just had a caesarean was no mean feat – and I tried to throw it across the room. My husband and his cousin, who was visiting at the time, tried to calm me down. Then my mother in law called the ambulance. The police arrived with them too and accompanied me in the ambulance.

Once we arrived at the hospital I was quickly assessed by a psychiatrist and admitted to a general psychiatric ward. Of course this meant I was being separated from my daughter which really upset me. As a new mum I was bleeding postpartum, and my breasts were leaking, and that all added to the anxiety and fear of being without my baby. I also developed a blood infection which in turn heightened my mental health symptoms even further. Plus, I wasn’t sleeping at all, so I was put on sedatives in addition to the anti-psychotics they were giving me.

I was there about a week but, in the background, my husband and father in law had been researching MBUs and were fighting to get me a place in one where I could be with my baby girl.

During that time, the director of the MBU at Bethlem Hospital came to visit me in person. She was really reassuring, saying that they did have a bed, but, because of how I presented, full of angst and distress, she warned me that they might not be able to manage me because of the other mums and babies in there.

Deep down, I knew that one of the reasons behind my continued angst was being separated from my baby, so I knew if I could be reunited with her I would feel less distressed. So I promised that I would be OK on the MBU and, as suspected, things got much better after I was transferred…

MBU admission

It was the following day that I was transferred, and it was honestly like a lightbulb moment in my recovery. There were still a few symptoms of the psychosis, but things weren’t as intense as they had been, although I was still very paranoid and wanting to isolate and cocoon myself away from everyone.

Shortly after admission, I was diagnosed with bipolar disorder. The psychiatric team noticed that I was more myself, but that my mood swings were really up and down, and my husband had noticed this as well. On reflection, my husband could now see that there were times before we had our daughter that my moods had become really heightened, but he just put it down to hormones.

My recovery

After being discharged, I spent about a year under the care of the mental health home treatment team and continued having appointments at Bethlem too.

I also started taking my daughter to playgroup from the age of three months. People wondered why I was taking her so young, but I wanted her to be around people, and I needed to interact with other mums too. I’m glad I did it, because today my daughter is so outgoing and happy.

My MBU doctor also told me to look up APP online and honestly, at first, I was sceptical. I thought what use is it going to do speaking to a stranger about my experience. But when I did it, I was like wow, this thing I went through is actually a real illness, and I’m not the only one. I’m not alone in this. It took me a while to attend an APP café group meeting but when I did and I was able to listen to many other stories it meant so much. I also got to meet APP’s ambassador, Laura Dockrill, who was so inspiring.

I love the peer support network so much that I recently did some training to become a peer supporter myself. I want to be able to give hope and comfort to other women like the APP support network gave to me.

The need for awareness

Today, looking back, and having no prior awareness of PP before my diagnosis, I think it’s incredibly important that midwives are made aware of it and of the symptoms, so they can pass that onto families who are expecting a child. They often talk about PND but PP is so rarely mentioned. I honestly think they should be giving out information at midwife appointments so you feel more prepared and able to spot the signs.

Because nobody in our family had ever heard of it, it was a huge shock and a really confusing time. I believe we could have reached out for help much earlier if we had known about PP.

I have learned, however, that experiencing PP does not make you a bad parent – it is an illness. We need to ensure we give ourselves time for self care and stop putting too much pressure on ourselves to be perfect parents. There’s honestly no such thing.

So if anyone is going through what I did, don’t feel afraid to speak out and ask for help. With PP, the longer you delay getting help, the worse it gets. But once you get that help, you can and will recover.

 

Stock Photos by Lawrence Crayton on Unsplash and charlesdeluvio on Unsplash and Elsa Lilja on Unsplash

 

 

 

 

 

 

 

Lee embarks on year-long challenge to raise awareness of PP

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This month, our incredible fundraiser Lee Smith of Washington, Tyne and Wear, will embark on the first of twelve physically demanding challenges to fundraise for APP and raise awareness of postpartum psychosis.

Sadly, almost exactly two years ago, Lee’s wife, Jess, developed postpartum psychosis and was admitted under section to Morpeth’s Mother and Baby Unit in Northumberland.

Two years on, now fully recovered and a happy and healthy family of four, Lee and Jess are doing all they can to raise awareness and much-needed funds - and for Lee this means taking on twelve difficult challenges starting on Sunday 11 December.

Read Lee’s story below. A link to his Just Giving page can also be found at the bottom of the article.

Continue reading Lee embarks on year-long challenge to raise awareness of PP →

Ruth’s story: We had to travel from Spain to Scotland during lockdown to access an MBU

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We’d been living in Spain for over ten years when I fell pregnant. My husband, Jamie, worked away a lot on an oil rig but we had a good network, had planned for Jamie to be home for a couple of months around the birth and the pregnancy was really straightforward. I felt lucky.

Our son was born in the September, and, when Jamie returned to work in the December, I made a return trip home to Ireland to visit family with our new baby.

Ruth with her toddler and her husband, Jamie, on a boat

While I was in Belfast I started struggling with bad joint pain. I’d had arthritis as a young child but hadn’t had any problems for years so it was a bit of a shock. I ended up in A&E and it made breastfeeding and holding my son really uncomfortable too. I was in so much agony.

When I got back home I got some treatment for the arthritis and everything seemed to settle back down. My baby was sleeping well, Jamie was working in Norway, everything felt like it was going to be fine.

Then, by the middle of February, I suddenly stopped sleeping and began panicking about everything going wrong – thinking that Jamie, might lose his job, worrying that there was something wrong with our son. I made the rash decision to move our son into his own room, and I would spend whole nights just staring at the baby monitor and listening to the buzz of it.

My mum came to stay and she remembers that I was just pacing the flat saying things like our lives are falling apart; there’s something wrong with the baby; he’s not well; he’ll be taken off us and I’ll be put in jail.

I went to the health centre and got an emergency appt with the nurse who prescribed diazepam to calm me down. It was around the time of lockdown so when I needed to go back it was a different nurse that I saw. The second time I was prescribed antidepressants, too.

Jamie was away at the time and I was continually phoning my best friend and cousin because I needed someone to listen. I was convinced there was something wrong with the baby, and I began struggling with breastfeeding and then bottle feeding – getting myself into this vicious cycle of feeling like I couldn’t feed my baby at all.

My friend was concerned and she made an appointment with a psychologist at the nearby clinic. I remember taking my notebook with me because I was writing down pages and pages of numbers and dates relating to my baby and his feeding patterns and routines.

Back at home, I would just lay down on the floor and cry and I was having regular panic attacks. But outside of the home, I was doing all of the right things – trying to feed him, dressing him. It probably all seemed fairly normal on the outside but in the background I was panicking, not sleeping, not eating and obsessing over my baby.

The next thing I remember is waking up in hospital…

Apparently, one morning, around 4 or 5am, I’d left the flat, left the door open, with my baby asleep and my mum sleeping on the sofa. I had no shoes on and I got into my car. I drove along the motorway and parked my car on the hard shoulder and got out. What happened after that was devastating. The only thing I can remember is someone saying quick get her a blanket. Then I remember waking up in a hospital.

I’d walked out in front of a lorry. Luckily, I survived. I had some very deep cuts, some bad injuries and I needed stitches in my head. I had some deep wounds on my foot and scars all over my back.

It does cross my mind from time to time about how the driver is today. It must have been such a huge trauma for him and I truly hope he has he recovered from it.

Left to right is Ruth’s husband Jamie, Ruth and their toddler out on a walk in the countryside I was quickly transferred to the psych ward where I was sat outside in a wheel chair, covered in blood. We were waiting hours and hours for the psych team to assess me. They eventually decided to admit me and I was taken into a shared room where my family had to leave me due to lockdown rules.

My family were looking after my son and Jamie, who was working in Mexico at the time, flew back home. Meanwhile I was in the psych ward, unable to shower properly because I couldn’t get my injuries wet, feeling as though I was in a prison, with no furnishings or comfortable surroundings and unbelievably tall walls with barbed wire so nobody could escape.

I don’t feel I received particularly good treatment while I was there. And I remember another girl who was in there suggesting I start to write things down to keep track of the doctors I was speaking to and the meds I was put on. When my sister and Jamie came in to see me I saw a psychiatrist who granted me permission to go home under my husband’s care.

We then went into full lockdown and my husband had to try to look after both me and our son at the same time. I think he has so much strength to have been able to put up with what I now know was absolutely shocking and both terrifying behaviour.

The team of psychiatrists would come to our house twice a week and I had some zoom calls with my psychologist during lockdown. They were trying to find the right combination of meds for me but apparently they weren’t working and they suggested I go back to the psych ward without my baby – and of course no visitors were allowed because of lockdown, so I really didn’t want to go back there.

One of my friends in the UK who worked in health contacted Jamie because she had found my messages really concerning. She had heard about Mother and Baby Units in the UK and Jamie, who’s Scottish, got in touch with APP to find out more and then made contact with an MBU in Glasgow. They said I could be admitted.

Jamie had to drive us all from Spain to Calais and then to a friend’s in Cumbria before reaching Stirling, where he immediately got me an emergency doctor’s appointment. By that point my paranoia and symptoms were so bad the doctor called an ambulance and I was immediately admitted to the MBU with my baby.

Ruth, her baby and her husband Jamie smiling at the camera

Because I’d come from Spain I had to have ten days in isolation, so Jamie went back to work to bring in some money because nobody was allowed to visit me anyway.

I ended up spending five months in the MBU. I was admitted in the May, and discharged in the October.

I remember in the MBU there were quite big rooms and we had our own bathrooms, a nice play area and garden with picnic benches and windmills. They organised things like crafts, cookery and pram walks which I enjoyed, and I remember me and one of the other girls used to make apple crumbles.

Unfortunately, because I still didn’t seem to be improving, I had to have ECT. I was so nervous and I appealed it but Jamie gave permission because he thought it was my only chance of getting better.

The doctor I saw before each ECT session was so lovely, I remember he always reassured me. I never got to know his name and I’ve always wanted to thank him for his kindness. I had 18 ECT treatments in total. The only thing I complained about was having a sore head, but apparently that’s quite common.

When my son was due to turn one, however, the MBU had to plan my discharge, because they were only funded to look after mums with babies less than a year old. I started going to my in-laws’ house on weekends and eventually was recovered enough to have a full discharge. However, I caught Covid, so we had to isolate in an Air BnB for a while which was really tough. Eventually, we made it back to Spain in a far better position than we had been when we left.

I’m still on medication today, but just a low dose of antidepressants. I’ve stopped the antipsychotics and things are slowly getting back to some kind of normality.

My son started going to nursery and he’s picking up both Spanish and English, which makes me so proud. And I went back to work in the September of 2021, so I had time to get back into normal life, start exercising again and focusing on me.

Looking back, it was a very scary and intense period, especially with it all happening during lockdown. But now Jamie and I are out the other side, we are both really keen to raise awareness, because nobody in my family had even heard of PP before I was diagnosed.

I’ve trained to be a peer supporter with APP, so I can share my experience and hope with other families who are going through what we did. I know that when Jamie first spoke with APP’s peer support lead, Ellie, when I was really ill, it made such a difference so I hope that we can now pass on that support. Just knowing that someone else has been where you are and come out the other side makes all the difference.

 

How one family’s history inspired a theatrical exploration of postpartum psychosis

News, Personal Experiences,

We spoke to Company Four founder Gemma Whiteley about how her ancestral research inspired a theatrical exploration of postpartum psychosis. Here’s what she told us:

My mum had watched a lot of Who Do You Think You Are? on TV and it sparked her interest in our own family history. One of the things she was really keen to find out more about was her grandad Jack, my great grandad, because she knew he had been raised by his grandmother rather than his mother. We’d heard that his mother, Mary (my great, great grandmother), had died of pneumonia when Jack was a young baby.

However, as we started to delve into our family history, we discovered that this wasn’t actually the truth…

My mum managed to get hold of some records relating to Jack’s mum and one of the files she managed to find was her death certificate. I remember being upstairs and my mum shouting up at me to come down and take a look because something didn’t add up.

My mum showed me the certificate and I remember she seemed confused and said ‘am I reading this right?’

 The certificate stated that the place of death was Cheddleton Asylum – so we obviously thought that was unusual because we didn’t believe people were put in an asylum for pneumonia – even back in 1900 when Mary passed away. So that led to us asking the asylum for the relevant records to find out more.

They unearthed three or four pages of information and documents which they sent on to us. When we read them we learned that Mary had what they then called ‘puerperal mania’ – which we now know as postpartum psychosis (PP).

The documents were quite detailed, telling us how Mary was behaving, what she was doing and saying. For example, it said she was throwing books out of her window and saying she could walk on water. And of course it mentioned Jack, and how Mary’s mother was the person who raised him after taking Mary to the asylum.

The notes also painted a picture of who Mary was as a person before she became unwell. She was a dressmaker, she had kicked her husband out for being a ‘ne’er do well’ and was often a naughty child who played truant from school. She worked in factories from the age of 13 and seemed to be full of life, somewhat ahead of her time and extremely strong-willed. Her mother painted a very vivid picture of how strong she was growing up.

In terms of her illness, however, it sounded as though her case was really acute and she wasn’t getting better at all, but the only treatment we read about was sedation.

An old picture of Jack seated in a chair taken before he joined the army
Jack before he joined the army

But even though we look back on these notes, wondering why the only treatment she was given was sedatives, it’s interesting to remember that, back in the day, that would have probably been considered the right treatment for her symptoms. In fact, the doctor who was looking after her became known as a leading expert in maternal mental health. Speaking with experts now, however, we know that the sedatives would have stopped her sores from healing, so they will have ultimately had a detrimental effect on her at the time. And of course sedatives alone do not tend to cure symptoms of psychosis.

Mary was just 27 at the time of her death.

A theatrical exploration of PP

Through my theatre company, Company Four, we do a lot of devising work, exploring new ideas and themes to take to the stage. My Company Four partner, Suzi, had mentioned mental health as a possible next topic and I shared our newly discovered family story. We were both equally intrigued and decided to take it further.

I had some pre-conceived ideas about what PP was, but finding out what happened to Mary made me realise that I hadn’t been well informed at all. Suzi agreed that she didn’t know much about PP or about maternal mental health generally so we were both really interested in learning more. And being able to tell a story about a different time – the 1900s and the asylums – was also an exciting concept, as we could explore the difference between then and now.

We did our own research and we also worked with APP to speak to women with lived experience.

What we discovered was that, while there were lots of differences all those years ago, for example the name of the illness and the types of treatment, some things haven’t changed. We found on speaking to women that far too many births are still difficult and traumatic. We also found that PP, particularly, seems to be something that people are worried about discussing due to the stigma that surrounds it. Many people seemed to react with fear or worry when we told them what we were making a show about.

Members of Company Four, seated and standing with a puppet between them representing baby Jack
A rehearsal picture with a puppet as baby Jack

Working with real experiences and voices of people from the APP network, we developed performance material and shared this with an invited audience for feedback. We used performance and audio recordings and puppetry, and we’re now looking at how to take the story further, so we are seeking a commitment from a venue to host a production, and funding to produce it as a full length piece. It can be a long process putting on a production, but it’s also been an exciting and life-changing process – I’ve really changed the way I feel about motherhood and speaking to the women and them sharing their stories with me is something I’ll always hold close to my heart.

We honestly had no idea just how emotional a journey it would be, but we’ve had lots of fun and laughter along the way too. Now we just need to get those funding bids in so we can continue to play our part in raising awareness of PP. And we really hope the audiences walked away from our initial sharing with more understanding and less fear.

To find out more about Company Four’s R&D process and to view more of the photography, visit the web page here

 

 

 

Alexander’s story: I felt as though I’d failed as a husband

Personal Experiences, ,

It’s hard for partners – and men generally – to admit there’s a problem that they just can’t fix themselves. But when my wife became ill with postpartum psychosis (PP) and continued to struggle for many months, I felt as though I’d failed as a husband. In reality, we simply didn’t get the help we desperately needed as a family.

We’ve got two boys. Our first son was born in 2019 and everything was fine with the pregnancy, but when it came to the due date things started to go wrong. It was all a bit traumatic and when he was eventually born many hours later he looked like he’d gone ten rounds with Mike Tyson - all bruised from the forceps. Then the first three weeks were pretty full on as we were in and out of hospital and with all the trips to the hospital, I was pretty much living in my car.

While my wife was in hospital she was really on edge and worried about everything – especially cleanliness. She was cleaning the hospital room constantly and not sleeping.  But nobody really noticed anything because we were kind of just left to it.

After three weeks she finally came home. However, we were due to move when our first son was six weeks old, so there was a lot of packing, people coming and going, we were both tired and worn out.

When we moved and I started my new job, my wife seemed to be doing really well on the outside, going to mother and baby groups and things. But in the background she was struggling with postpartum psychosis – and I had no idea.

I’d come home from work and ask how things were and she’d tell me things were good and tell me little stories about the mother and baby groups – but I know now that she had stopped going.

Around this time she became really worried about locking all the doors and checking the windows, and she became convinced that somebody was outside the house watching and waiting for her. Plus, I didn’t know it at the time, but she was convinced that I was trying to poison her, and she could hear sounds that weren’t really there, like the phone ringing when it really wasn’t.

Because my wife is a midwife, I think she knew what to say and how to behave to keep her problems hidden and to make everything seem OK. But it really wasn’t.

A few months later I was at work when my wife rang me begging me to come home and look after our son. When I got home she was sitting on the sofa with our son asleep in her arms, but she was stuck in this circle of changing emotions. She was happy, then she was crying, then she was angry and then she looked terrified. She kept looking behind her as well as if she thought somebody else was there.

I tried to talk to her but it was as though she just wasn’t there. So, not knowing what to do, I called 111 and told them I thought my wife was having a mental breakdown. They advised us to go to the GP and I managed to get her in the car, but once we were in the waiting room, even though we were only there for a couple of minutes, it felt like the longest time ever. She was crying and going through all these emotions and people were looking.

When the doctor called us and we walked down the corridor we got half way before she stopped and screamed. She began clawing at the wall, wanting to get out. When we got into the doctor’s room she wasn’t able to speak, and they immediately referred us to the crisis team, telling us to go home and wait.

After we got home, my wife started coming round and snapping out of it a little. She asked me what had happened so I explained it all to her.

The crisis team, a man and a woman, came to visit the house the next morning but the man was really unhelpful, not listening to my wife and interrupting her when she was trying to explain the feelings and thoughts she had. They left, said they’d follow up, but we never heard from them again. And things carried on much the same with my wife feeling paranoid and anxious.

Eventually, we tried for another baby and my wife fell pregnant with our second son. When she went to book in with the midwife and told her everything that had been happening the midwife was like woah stop, that’s not right.

She immediately referred us to the perinatal mental health team and it was only then that we started to get proper help.

Within two days we had a mental health nurse visit, who said that my wife was suffering from postpartum psychosis. We were both quite upset, but it was also a relief to know that there was a reason behind everything that had happened.

They put her under their care, came every week, put her on medication and sorted some therapy, saying that the main goal at that point was to get her through the pregnancy and that after the birth, they’d review things.

After the birth things started off really well and her medication was changed which seemed to stabilise things. But then one week things suddenly went back to the way they were, with my wife convinced there was somebody in the garden and feeling really terrified. This time we had a consultant to call and they came out the next day and told us that it would be best if my wife went to a Mother and Baby Unit (MBU).

We were both shocked and upset, my wife was crying. But the consultant said we needed proper help.

I remember her looking at me and saying that she could see that I was drained and that I couldn’t do this by myself anymore and she was right. I’d held the fort for two years.

My wife wasn’t keen but eventually she agreed to go willingly. It was during the pandemic, so I wasn’t able to go in with her and simply had to drop her off. She was able to keep our second son with her but not our first son, but I was lucky in that my employer was really supportive, telling me to stay at home, look after myself, my sons and my wife.

Eventually, my wife was discharged and she’s been on the up ever since. She’s now off her medication and is back to herself and doing great, and being a brilliant mum.

For me, not knowing what to do, it felt like the worst rollercoaster ride ever when we were in the midst of her illness. I didn’t have a clue what was really going on, then when I found out how she had been feeling I felt like I’d failed, and that I should have known. I beat myself up for a long time about it but I did eventually seek help for myself, and I got some counselling, which really helped.

The perinatal mental health team signposted us to APP and, when we felt ready, we joined the forum and began talking to other people who’d been through it.

Peer support makes you know you’re not alone.

And it provides ways for you to give back and help others. It’s a big thing for me and my wife to have that opportunity, to try and help somebody else.

 We’ve also had our experience of services investigated - this was something the perinatal mental health team instigated. And we now know that our experience is going to be talked about in health professional training – another way in which we are able to do our bit to stop anyone else having to go for so long without getting the diagnosis and help they need.

Finally I’d like to say that, for anyone else who is supporting somebody with PP and struggling, know that it’s not your fault. And look after yourself. Just because you can’t fix this on your own it doesn’t mean you’ve failed. It’s hard to admit that you need outside, professional help but make sure you let somebody else in. You don’t have to do it alone.

 

 

APP to speak at international perinatal mental health conference 

News, , , ,

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”

Personal Experiences, , ,

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

Personal Experiences

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