Jade’s story: "Awareness is so important".

I finished work for my maternity leave in February 2020, just before the lockdown. My pregnancy had been smooth but the last few weeks were awful. He was ten days late and I was just so ready for him to come out. I wasn’t sleeping, I had a 72 hour labour, and I had to switch from having a water birth to going into a labour unit because I got to around 4 or 5cm and nothing was happening. Eventually, I went into hospital and had an epidural and forceps delivery.

When my baby was born he was immediately taken away. During the delivery his heart rate had dropped so he had to be put on an incubator in the neonatal unit two floors up.

During this time I started to feel like there was something wrong with me. I wasn’t sleeping well and something just didn’t feel right so I told the nurses. They reassured me that it was probably all normal, I’d been through a traumatic birth, etc. But the sleep wouldn’t come, and I started thinking strange things and not wanting to be around my family (other than my husband) which wasn’t like me at all. I was just pacing around the hospital day and night feeling anxious.

I became really distressed and starting thinking that if I fell asleep I would die. That’s when things really hit me.

I began seeing and hearing things, with imagery of heaven and hell and other religious visions playing a big part in it. I also thought that my own body was trying to kill itself which was terrifying. Plus, I kept thinking that I could hear my baby crying which was really upsetting. But I couldn’t have heard him because he was so far away.

My husband was really worried about me and kept speaking to the nurses and doctors, but the problem was that I sometimes appeared well and lucid when they checked on me. I finally agreed for my mum to come in and see me and that’s when I told her about my fear of dying if I fell asleep.

The hospital then moved me into my own private room because I was in so much distress, which I think they thought might help the other mums around me as well. They allowed my mum to stay over night with me too and, meanwhile, my husband was still urging them to get me some more help, because he knew there was something seriously wrong.

The hospital, however, suggested that I had the baby blues and at one point even suggested I was ready to go home! So my husband did his own research and found out about postpartum psychosis. He recognised the symptoms in me straight away.

He’d read about Mother and Baby Units (MBUs) and reached out to the one in Chorley not too far away. I was so lucky that they sent somebody to see me because, just prior to this, the hospital were considering sending me to a general psychiatric ward, which would have meant being separated from my baby.

I was transferred to Chorley MBU eight days after giving birth and I am so grateful that I got a bed there.

In those first few days I was really anxious. I didn’t know what was happening to me and I’d been googling things like schizophrenia, personality disorders and bipolar. I also remember googling ‘will I die if I have a mental breakdown.’ It wasn’t until I was settled in the MBU that I first read about postpartum psychosis in one of the leaflets they gave me, which also talked about how treatable it was. It was such a relief to know what it was that was happening to me, and to know that I could recover from it. Plus, I knew at that point that I was absolutely in the best place.

I was given anti-psychotic medication and the hallucinations stopped and I started sleeping again. But, after a while, I started to feel really unhappy and detached from my baby. I felt kind of dissociated from him and from being a mother. I wasn’t actively suicidal, but I felt like I didn’t want to live. That’s when the psychiatrist started discussing postnatal depression with me, and I was prescribed with additional medication.

Prior to this I hadn’t experienced any mental health problems at all. In fact, neither had my husband, so we were both really unprepared for it.

I kept telling the MBU nurses that I might be the only one who doesn’t recover from it all, because I really couldn’t see a light at the end of the tunnel, but they kept reassuring me. They told me to distract myself, to focus on my baby, and told me that it does take time to heal.

I also met Jocelyn, APP’s peer support worker, on the ward, as well as other mums who had experienced PP and recovered and that really helped me. To know that there are other mums out there who have gone through these same experiences really makes a difference.

Finally, by the back end of April, I started showing signs of getting better and they started talking to me about going home - just for a couple of hours at first. By this point I was very detached from the outside world so it was really daunting but I did go home for a little bit which felt strange.

I was finally discharged fully on the 21st May 2020. I wasn’t fully recovered, but I’d say there was around an 80% improvement by that point. I was still on meds, still getting support visits to the house however, even though the country was in lockdown at the time, I tried to get back to some sort of normality.

It took a while to get back to feeling like me again and it really affected my marriage. My husband had struggled with the trauma of it all as well. However, eventually, by November 2021 I came off all the medication and started to feel like myself again, which strengthened our bond as a family.

Looking back, I think for us, not having any idea what was happening was the most frightening thing. We didn’t know about PP, mental health was barely covered in the antenatal classes, other than a brief mention of depression, and the midwives didn’t seem to know too much about what was happening to me either. It wasn’t until I got to the MBU and met with specialist workers and peer supporters that things started to look up. I feel so grateful to have got a place at Chorley – I know not everyone is so lucky.

It’s now 2022 and I’m in a really good place. I’ve developed such a great bond with my boy, and he’s such a happy little boy too. So I get that excitement, that joy, that feeling of love now, as a mother, which is so incredible. I’m also back at work, taking care of myself, going to the gym and, importantly, my marriage is stronger than ever.

Now I can reflect on my experience I really want to help others by sharing my story. Awareness is so important, I think it would have helped us enormously if we had been armed with more knowledge from the start. Just being able to spot the signs, to know what help is out there and to know that you can recover would have relieved so much of the distress that I felt.

Susan's poem: Into the Deep.

 

Susan experienced postpartum psychosis in 2006. Here she shares her poem, 16 years on.


Into the Deep

From a rush with euphoria
Feeling on top of the world
To the sensation of exhaustion
Fear of falling to the ground.

The shower in the morning
Helped to make me aware
To feed, bath and love my baby
With much loving care.

The following weeks I carried on
Getting dressed everyday
It makes you feel better
Or so they say

I continued to do everything
As I thought I should
Hanging out the washing
Feeling reenergised
Thinking I was doing good.

No groups to join,
few visits from friends
Only when my midwife visited
She noticed I was drained.

I was starting to spiral
in to the deep.
I was running on empty
Suddenly unable to sleep.

I thought I could accomplish
Anything when I became Mum,
Within a couple of months
I began to feel numb.

Forget previous feelings,
Natural instincts I had,
Could not remember anything
Feeling I was going mad.

This itself was frightening
Not knowing who I was anymore
If I would get back to where I was
And who I was before.

Lack of sleep and eats
Plummeted me into despair
Catatonic some days
Not knowing if I was there

Being told I was getting better
Feeling like shouting out I am getting worse
But could not get the words out
I am here, I am not right, am I cursed?

Lack of understanding from all of those around
Caused more distress and isolation
As I felt this was my life
And I was not to be found

Fearing institutions and staff
throwing away the key
Thinking everyone else
would be better off without me.

Soon I did discover
That help was there for me.
Experts in their fields providing
Care for baby and thee.

As treatment started to work
And I started recovery,
Looking after myself first,
Allows me to look after my family.

Look after yourself, be good and kind.
Having an insight helps to maintain a healthy mind.

An Evening With The Good Enough Mums Club

The Good Enough Mums Club, a concert tour of songs from the musical of the same name, is going to be taking to the stage during April and May to delight audiences once again. The original musical, which includes a story of postpartum psychosis, has been produced, written, directed and performed by mums with the aim of ‘celebrating all the things, good and bad, that unite us as mums’.

In the safety of a local community hall, five mothers regularly meet with their young children, to share, compare, commiserate and comfort one another through the tough first years of motherhood.

The Good Enough Mums Club features songs such as “Only My Nose Is The Same”, “The Price To Be Paid” and “WTF’s Up With Kid’s TV?”. Toddle through the highs, lows and sleep deprivation of motherhood. From peeing on sticks to drooping tits, they share the love and dispel the myths with enough wipes on hand to mop the tears and clean away the snotty laughter.

When the Council threatens to close their local playgroup, five women thrown together by motherhood, overcome their isolation, loneliness, judgment and perfectionism to discover that they’re stronger as a group than as individuals, and that sometimes, being good enough is best.

Writer Emily Beecher said, “The Good Enough Mums Club grewout of my own darkest days of motherhood fighting postnatal depression and postnatal psychosis. When I shared my story, other women shared their own experiences with me, and it was so brilliant to realise all these things I thought I had been alone in were actually things that connected us.”

An Evening With The Good Enough Mums Club is a concert tour ahead of the full musical tour in 2023. You can catch it live at:

The Lowry, Salford - 22nd April (BOOK HERE)

Pleasance Theatre, London - 30th April (BOOK HERE)

MAST Mayflower Studios, Southampton - 6th May (BOOK HERE)

The Good Enough Mums Club podcast is entering its second season during the tour. You can listen to season one here or on all major podcast platforms.

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

 

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

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

So far so normal.

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

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

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

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

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

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

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

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

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

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

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

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

Eventually I started trusting their care and taking the meds, which brought me back to my usual self.

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

After about three months in the MBU, I left the MBU and received care at home from the perinatal mental health team and my family supporting me along the way. I started to think I was much better. However, after the psychotic symptoms died down, I was hit with depression and anxiety. All of these different mental health problems were affecting me. Before giving birth, I hadn’t experienced any mental health problems at all...

Since my PP episode I have had a relapse and since then been diagnosed with Bipolar. This does not affect me and I feel now more than ever more capable and confident to help others going through mental illness.

I’ve personally found a lot of support and strength through APP’s network and I want to give something back and to let others know that you can recover from a mental illness. You may not feel like you will whilst you are experiencing it but YOU WILL and YOU DO get better.

 

APP’s Danielle Thomas shares her story with Stacey Dooley

Danielle Thomas, APP’s Wales Assistant Co-ordinator, shared her PP story with BBC investigative journalist Stacey Dooley for her latest book, Are You Really OK? published by BBC Books.

Published in February 2022, the book is an exploration of the mental health crisis in Britain and its particular impact on young people. Danielle, who is also a midwife, shared her experiences of postpartum psychosis with Stacey over a zoom call, talking about her traumatic birth and the PP symptoms she experienced after returning home with her baby.

Danielle’s story forms part of a wider collection of first person stories about mental health, as well as comments from medical experts, counsellors, campaigners and health practitioners who give detailed insights into the conditions and environmental factors that play a part in affecting mental health - including poverty, addiction, identity, pressures of social media and the impact of Covid- 19.

Are You Really OK? also includes positive stories of recovery that can inspire and offer hope to those going through mental health problems and those around them. Recovery is possible is a very strong message; just hearing it may give that bit of hope needed to keep going through the tough times. It doesn’t immediately free someone from the illness, of course, but it might help them see that with the right help they can get through a crisis, manage their mental health and carry on living as normally as possible. This book is about opening up the conversation around mental health, sharing experiences and offering hope and proof that it is possible for things to get better.

Stacey Dooley is one of the UK's most loved documentary presenters. Across her 15 year career, Stacey’s series include Stacey Dooley Investigates, Women in Dangerous Places and Stacey Dooley Sleeps over, to name a few. She has examined a variety of topics from sex trafficking and under-age sex slavery, to domestic violence. In 2018, Stacey was awarded an MBE for her outstanding contribution to broadcasting. Her debut book, On The Frontline With The Women Who Fight Back was a double Sunday Times Bestseller in both hardback and paperback.

To order a copy of the book, click here.

Theatre: ‘after birth’ is returning to the stage for a UK tour

 

‘after birth’ is a dark comedy deeply rooted in the testimonials of women who have experienced postpartum psychosis. Read on for dates and a review.

"A powerhouse story told with clarity, wit and integrity"
Daily Information

"At the centre of my play is Ann – razor-witted and indomitable – her character is rooted in the funny, resilient women who fearlessly shared their recovery stories with me"
Zena Forster

Dates and tickets

LONDON, Omnibus Theatre 22 - 26 February 2022. Book tickets. 
NORWICH, The Garage - 11 March 2022. Book tickets.
GRAVESEND, The Woodville - 16 March 2022. Book tickets. 
WOLVERHAMPTON, Arena Theatre - 18 March 2022. Book tickets. 
LYME REGIS, Marine Theatre - 24 March 2022. Book tickets.

Please note, the performances on the 15th March 2022 and 23rd March 2022 are closed performances for invited guests.

Watch the trailer

‘after birth’ review

In June 2021, two members of the APP team, Ellie and Jessie, and one of APP’s volunteers, went to see ‘after birth’ at the North Wall theatre, Oxford. ‘After birth’ is set in a Mother and Baby Unit: the main character, Ann, has a bipolar diagnosis and is experiencing postpartum psychosis.

Ellie writes: "‘After birth’ has been written by Zena Forster who worked with APP as part of her research, speaking to several members of APP staff and volunteers with lived experience. The play follows Ann in her experience of postpartum psychosis, and the action we witness on stage is through her eyes, starting in the middle of her paranoid and scary psychotic episode. It depicts her slow journey to recovery, her growing trust of the professionals helping her, her relationships with her mother and partner, and the grief and trauma she experiences. The play also shows her relationship with another patient in the unit, showing the importance of the connection between the two women with lived experience.

As we all know, the impact of experiencing postpartum psychosis is wide reaching and complex and affects so many parts of a person’s life – their self-esteem and well-being, identity, creativity, relationships, relationship with their baby and feelings about becoming a mother. Zena managed to weave all of this complexity, and more, into the play, at the same time creating a believable, likeable, and rounded character at its heart, who we were rooting and feeling for. The fact the audience was with Ann throughout her whole experience of PP and seeing everything through her eyes, meant that the play was a powerful tool for helping the audience to really understand, connect and empathise with the experience of postpartum psychosis, and to truly feel and understand what women go through.

‘after birth’ will tour in 2022, and we highly recommend that you take the opportunity to go and see it when it does. We found it a powerful, accurate and stigma-busting portrayal of PP.”

'after birth' grew out of a collaboration between playwright Zena Forster and researchers at the National Perinatal Epidemiology Unit  (NPEU), Oxford University.

Find out more and book tickets here: https://linktr.ee/afterbirth2022

Get in touch with APP

If you would like to talk to the APP team about ‘after birth’, please email app@www.app-network.org 

 

New report commissioned by the Maternal Mental Health Alliance

A new report commissioned by the Maternal Mental Health Alliance shows that investing in training for midwives and health visitors, and recruiting more specialist perinatal mental health midwives and health visitors could save the NHS up to £52 million over the next 10 years by ensuring that women receive timely support. This investment could also improve the quality of life for women and their families with an estimated £437 million saving over 10 years on costs to society such as loss of employment due to poor mental health.

Luciana Berger, Chair of the MMHA, says: "It is vital that we make it easier for pregnant women and new mums to access mental health support during routine contacts with their midwives and health visitors."

Sarah Hughes, Chief Executive of Centre for Mental Health, says: "Supporting midwives and health visitors with the training and time to meet women’s mental health needs is a sound investment that could make a difference to many thousands of women and their families.”

At APP, we know how critical the role of midwives and health visitors can be in identifying postpartum psychosis and ensuring that women receive the support they need.

APP have delivered lived experience talks and training to over 13,500 midwives, health visitors and other health professionals, enabling them to have greater confidence in identifying and responding to postpartum psychosis.

APP fully support the recommendation to invest in more midwives and health visitors with specialist skills in perinatal mental health to improve access to timely support for women and families.

Read more about the report here >

Mother and Baby Unit Pamper Packs

A huge thank you to APP volunteer Gemma for organising pamper packs to be delivered to each of the UKs 22 Mother and Baby Units (MBUs). Gemma delivered pamper packs to the Derby, Nottingham and Stafford MBUs in December, and APPs Peer Support Facilitator Jo Derry helped to send pamper packs to the other MBUs in January.

The packs included make-up items from Boots UK and Soap & Glory to help mums feel special, and leaflets about APP’s peer support for women and families. Gemma organised the packs as a way of giving mums a little bit of “me time” to help their recovery, alongside the invaluable help and treatment the MBUs provide.

Gemma has been a volunteer with APP since 2018, and has also held fundraisers for us. She says “I suffered with postpartum psychosis in 2017.  Through this I gained an understanding of severe anxiety and depression and wanted to train as a peer supporter in 2018 in order to support others through their recovery journey. I also support the Birmingham project through attending the cafe group and really enjoy making a positive impact on others’ recovery. At Christmas 2019 I returned to my own MBU in Stafford and was able to thank staff and provide a small amount of pamper packs. At Christmas 2020, and again in 2021/22 I wanted to reach every MBU in the UK. I feel this is such an important step for mums not only to promote relaxation and self-care, but more importantly to raise awareness of APP, the support available and the ways in which they can get in touch.”

We have received some lovely feedback from MBUs across the UK. The Nottingham MBU said: “Massive thankyou to APP for the very generous gifts for our mums at Christmas. It is very much appreciated.” The East London MBU said: “Thank you so much to APP for donating amazing pamper packs for our lovely mums on the ward”.

Thank you to Gemma and Jo for all your hard work in organising and delivering the packs to the MBUs.

 

 

 

 

 

 

 

 

 

 

Bulb planting

Last year the Royal Horticultural Society joined forces with BBC’s The One Show to bring the ‘Garden of Hope’ to the world-famous Chelsea Flower Show (21st to 26th September 2021). The garden has now been donated to the Mother and Baby Unit (MBU) Rosewood (part of Kent and Medway NHS Social Care Partnership Trust). The beautiful blooms will help create a sanctuary and place of hope for the mothers and babies there. There are more details about the project in this article.

To tie in with this lovely idea, APP volunteer Gemma Vinter has been sourcing donations of bulbs to give to the UK’s 22 MBUs to help brighten up their grounds.

Gemma teamed up with APP’s Peer Support Facilitators Natalie Thompson and Joanne Derry in January to plant bulbs donated by J.Parker’s Dutch Bulbs in the ward gardens at Derby MBU.

Gemma says she hopes that spending time outside with lots of lovely plants and flowers will encourage a little bit of “me time” to help patients’ recovery, alongside the invaluable help and treatment that MBUs provide.

APP would like to thank Gemma, Natalie and Joanne for their hard work and support.