Tag Archives: perinatal mental health

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.

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

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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

 

 

 

Help us campaign for a Mother and Baby Unit in Northern Ireland

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It’s World Mental Health Day today (10th October) and this year’s theme is ‘make mental health and wellbeing for all a global priority.’

For the 1,400 women in the UK and 140,000 around the world who develop postpartum psychosis (PP) each year, their experience of care varies hugely.

Northern Ireland (NI) is the only part of the UK that doesn’t have a Mother and Baby Unit. Mums with postpartum psychosis and other serious mental health issues are still being separated from their babies and admitted to general psychiatric wards.

Today, along with the Maternal Advocacy and Support Unit (MAS), and a coalition of over 40 charities and organisations, we will be presenting an open letter to the NI Health Minister Robin Swann to ask him to urgently prioritise setting up a Mother and Baby Unit (MBU). You can read the letter in full here.

The open letter is being presented alongside a petition from APP’s Regional Representative in Northern Ireland, Oorlagh Quinn, showing the strength of public support for an MBU.

In May 2022, an inquest into the tragic death of Orlaith Quinn, due to postpartum psychosis stated that her death was “both foreseeable and preventable”. Coroner Maria Dougan recommended that a specialist mental health Mother and Baby Unit (MBU) should be established in Northern Ireland as a matter of urgency.

The Northern Ireland Assembly has been discussing a unit for more than a decade. We want to make sure there are no more delays. There is a business case in development, but the coordinated action of charities, and sharing powerful stories with the media and public, will give the business case the best chance of success.

How you can help

Please follow and share our campaign posts on social media using the hashtag #MumBabyTogetherNI. You can find us on Twitter,  Instagram and Facebook - feel free to share any of our posts and graphics.

You could also write to your MLA encouraging them to back the campaign and sharing the details from our open letter. If you need help finding your MLA click here.

Thank you so much for your support.

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

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

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

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

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

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

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

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

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

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

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

 Read more about Catherine’s story here