8 December 2022

Lee's story: "That night was hands down the worst of my life."

Lee’s story:

On 5th December 2020 our family grew from 3 to 4 with the arrival of Freya Rose smith, light at the end of a tunnel after a turbulent year due to the global pandemic or so we thought.  

Due to the restrictions in place because of covid-19 I was only allowed in for the birth and ushered out quite quickly leaving Freya in safe hands of Jess and the hospital staff. Jess spent the next 20 hours alone with our beautiful healthy baby, hourly checks from midwives to make sure mother and baby were doing ok, from the outside looking in all seemed well but Jess had been texting throughout the night saying she was struggling to sleep reassuring her that it was a strange environment and once she was home she’d get a good nights sleep and full support from me and Lola.  

I was able to collect both Jess and Freya and introduce Lola to her new baby sister the next day, Jess didn’t seem herself but I just put it down to sleep deprivation offering full support to do all the night feeds and nappy changes so she could catch up on sleep after all she had done the hard work the previous 9 months. Throughout the night Jess struggled to settle overly checking Freya and referring to her as “the baby”, talking a lot and doubting basic decisions being made of bottles, clothes and nappies-again putting this manic behaviour down to sleep deprivation I continued to offer support and reassurance, after-all this was second time round.  

Jess’ odd behaviour continued into the next day, a visit from the community midwife added Jess with some reassurance that everything was fine, Freya was healthy and eating well. With the community midwife leaving her number and offering a word of advice at the end of the phone if we needed anything- potentially a life saving decision.  

Jess’ thought process became more paranoid about the world around her, and a visit into the local shops ended quite abruptly and rudely from Jess stating everyone was looking at her and she may as well killer herself because she’s a rubbish mam demanding I needed to phone the midwife, storming off leaving me pushing the pram, for anyone that knows Jess knows how out of character this behaviour is.  

Becoming increasing concerned I phoned the midwife and asked her to come back out as something wasn’t right with Jess. Within the hour she’d arrived Jess’ behaviours almost changing by the minute, very visibly worried, asking strange and bizarre questions and referring to Freya as Lola or “that baby”. 

The midwife was quick to conclude something wasn’t right and thought she might have a water infection and booking Jess into the local go for a blood test for the morning, and prescribing some sleeping tablets to help Jess rest, she also left a “crisis” number if things got worse, I remember thinking this was strange thing to offer for a water infection.  

After just an hour I quickly recognised why I was given the crisis number- Jess’ behaviour became increasingly manic and it became clear that this was more than just a water infection, Jess was in fact having a psychotic episode and was really mentally ill.  

After a call for help to the crisis team it was clear that Jess needed help and help fast- Due to the pandemic medical help and the NHS was stretched to breaking point, a wait for an ambulance was 6 hours, the 999 handler advised to get Jess to A&E as soon as we could.  

The night of the 7th and morning of the 8th December were hands down the worst of my life, worry if I would ever see Jess again. Jess’ behaviours deteriorated rapidly and she ended up sectioned under the mental health act after jess having an episode of Postpartum Psychosis, Heart-breaking conversations with social workers, psychologists and doctors to have about your own wife.  

Jess was subsequently taken to a specialist mother and baby unit in Morpeth to aid her recovery, getting full mentoring and support for specialist doctors.  

Two years on and we are in a much better place- but it hasn’t been easy. 

The reason I write this is I want to raise awareness of mental illness within new mams and the impact it has on the surrounding families most specifically the dads and grandparents, I have found an amazing support Charity called Action on postpartum psychosis, and want to raise some money to support families going through what we have and raise awareness of what is quite a taboo subject.  

I have set myself a goal of completing at least one physically demanding challenge a month until December 2023 to raise the profile of Action on postpartum psychosis and collect any donations along the way.  

My first challenge is 11th December a 10 mile run along with my good friend David Douglass, we are being transported blindfolded 10 mile from Newcastle city centre with no technology, maps or help, blind folds removed at the drop point and make our way back.  

If you would like to sponsor me, or join in any of the planned challenges please don’t hesitate to get in touch with me to support this amazing charity. 

To support Lee’s fundraising challenge visit his Just Giving page.

7 December 2022

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

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 here. To support Lee’s fundraising challenge visit his Just Giving page.

1 December 2022

Sarah's Miles for Mums and Babies Walk

Sarah Honeywood from Northumberland has chosen to take on a Miles for Mums and Babies challenge to help raise awareness of and funds for APP.

Sarah will be walking 305km over the next few months – which is a particularly impressive challenge when you find out that Sarah is a midwife, mum of a 1 year old and is trying to fit these kilometres in before her second baby is born!

Here Sarah explains why she chose 305km for this challenge and why APP is such an important cause for her:

‘305. Does that sound a lot? I suppose if you're talking about elephants it's a fair number, but if you're talking about grains of sand, it's hardly anything at all.

305 is the number of days I received support from the fantastic perinatal mental health team. This included a stay on the Beadnell Ward Mother and Baby psychiatric unit, outpatient care from the community mental health nurses and support from Action on Postpartum Psychosis. Knowing I wasn't alone during this time was so important and the comforting words of people who had been where I'd been was priceless, both in person and online.

The recurrence rate of severe perinatal mental health problems is conservatively estimated at 50%, so the decision to have more children wasn't an easy one. Knowing that HALF of the women who have had similar experiences to me go through it all again and that I am just as likely as not to end up in the same situation again is terrifying. If it wasn't for the knowledge that I'll be so well supported, Arthur might have been an only child. Come what may, I know that my Hillcrest/Northumbria colleagues, perinatal mental health team and support groups will be there to offer both peer and professional support.

For this reason I have decided to fundraise for Action on Postpartum Psychosis. The presence of their volunteers on Beadnell Ward and the brilliant resources they provide are invaluable and I'd love to help. However, as I'm not much of an athlete I'm going to be walking instead of running! My aim is to walk 1 kilometre for every day that I received care by the time the new baby arrives, so 305km in the next few months

I really hope that some of you can spare a few pennies so help APP continue their fantastic work and supporting families like mine to get through the most difficult period of their lives.’

Thank you so much Sarah for supporting APP and we’re wishing you all the best for your challenge, and with your new baby.

If you'd like to add your support to Sarah's Miles for Mums and Babies efforts, you can find her fundraising page here: www.justgiving.com/fundraising/sarah-honeywood

24 November 2022

Clover MBU take on the #MilesforMumsandBabies challenge!

A huge thank you to the wonderful team at Clover Mother and Baby Unit (MBU) in Winchester. They are taking on a #MilesforMumsandBabies challenge this November to help raise vital funds for APP.

A mighty team of staff, mums and dads at the MBU are aiming to run, walk and push buggies 428 miles during November. 428 miles represents the trip that one of their mothers and her family had to make between her home and Winchester MBU to receive care.

The team has been out in all weathers clocking up the miles and they've already raised nearly £700.  You can follow their updates on Instagram at @clovermbu_winchester and  add your support here: https://www.justgiving.com/fundraising/winchester-mother-and-baby-unit

15 November 2022

Buy a virtual gift and help support APP

Struggling to find a present for the person who already has everything this Christmas?

We may have the answer -  a virtual gift that helps APP to support mums and families affected by postpartum psychosis.

Not only is this a quick and easy way to tick someone off your Christmas shopping list, you'll also be raising awareness of postpartum psychosis,  helping us support even more families next year, and giving the recipient that warm and fuzzy feeling of knowing they're making a difference.

Click here to donate, then simply email fundraising@app-network.org and we'll reply with your downloadable APP gift card, ready to email direct to the recipient, or to print, wrap and pop under the tree. You can do this right up til 5pm on Christmas eve!

Your gift will make a difference. Thank you.

Did you know you can also support APP by buying your festive greetings cards via www.bit.ly/APPcards ?

 

APP selected to receive a share of CharityJob's annual giving

We're delighted to announce that APP has been selected as one of the recipients of CharityJob's annual charitable giving initiative.

More than 700 charities applied for a share of the £100,000 made available by CharityJob, and only seven were chosen, with APP being awarded £15,000. The donation will go towards supporting mothers and families affected by postpartum psychosis through our peer support projects; our work around awareness raising and combatting stigma; and through developing and disseminating high quality, reliable information and training on PP for families and healthcare professionals.

Dr Jess Heron, APP's CEO said: 'This donation will make a real difference to the lives of mums affected by PP and their families. We know our peer support work changes and saves lives, with around a third of respondents to our recent survey saying they may not be alive if they hadn't found APP. It can be difficult to find funding for projects supporting severe maternal mental health illness, so we're very grateful to CharityJob for choosing APP for this award.'

9 November 2022

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

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.

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.

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.

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.

 

8 November 2022

How to send a card to a mum friend or family member who is staying in a Mother and Baby Unit

When a mum friend or family member is unwell, it can be hard to know how to be of most help and show that you care. Sending a card is something encouraging and cheerful that a mum can have in their hospital room. It can also be a lovely keepsake for a mum to come back to, sometimes months and years later in her recovery journey, and treasure your thoughtfulness at such a difficult time.

Soukaina Bennani works as an Action on Postpartum Psychosis (APP) peer support facilitator in the Chamomile Suite Mother and Baby Unit, part of the Birmingham and Solihull Mental Health NHS Foundation Trust.

Here she tells us how you can send a mental health get well soon card to a new mum in a Mother and Baby Unit.

What is a Mother and Baby Unit?

An Mother and Baby Unit (MBU) is a specialist inpatient treatment unit where mothers with mental illness are admitted with their babies. In MBUs, mothers experiencing postpartum psychosis can be supported to care for their babies whilst having the specialist care and treatment they need.

At the Chamomile Suite Mother and Baby Unit, mums have their own bedrooms where they can put out their cards.

How can I find out the address to send the card to?

Find out the name of the Mother and Baby Unit they are staying at from a family member or friend. Search online for the address, for example, searching ‘Birmingham Mother and Baby Unit address’ to find the official NHS page for the unit.

All Mother and Baby Unit addresses are also available on the NHS WebBeds website:https://www.nhswebbeds.co.uk

Finding the right words

It can be difficult to find the right words to say when someone is unwell. Here are some example messages of encouragement you could add:

  • I’m sorry to hear that you are feeling unwell at the moment
  • I’m sorry you are having a tough time
  • I’m so sorry that you’ve had to have a stay in hospital
  • It's okay not to be okay
  • You will get better
  • We are thinking of you
  • Sending lots of love
  • Sending you a big hug
  • Hope you feel better soon
  • I hope you know I’m always here for you
  • Sending you lots of positive thoughts

Read the comments on this Facebook post for more ideas from our community:

You can also read the comments on the Instagram post for more ideas.

Which card could I send?

You can send any card, perhaps with a 'thinking of you' or 'get well soon message.

You could choose to send a printed card that includes some information about Action on Postpartum Psychosis (APP), which may be helpful to your friend and their family.

We work with Making a Difference cards, which offer personalised cards for every occasion. Sending a card through this service will also help to raise funds for APP.

You can add names, photos and messages and they can be delivered directly to the recipient, or to you so you can add a handwritten message.

Find out more and select a card here: https://gb.makingadifference.cards/supporting/action-on-postpartum-psychosis

Should I expect a response from the mum or family?

Mums can sometimes stay in a Mother and Baby Unit for a number of months as they recover. We also know that many mums find it difficult to remember too. So don't be disappointed if they don't say thank you personally. They will get better and be back in touch when they can.

Find out more about postpartum psychosis and APP’s peer support

If you'd like to find out more about recovery from postpartum psychosis, take a look at our guides and our information webpages.

APP’s peer support service connects you with people who have been there. We can support you if you’ve had postpartum psychosis, or experienced high mood or mania after the birth of your child, or if you are a partner or family member of someone who experienced postpartum psychosis. Find out more about peer support here.

If you live in the Birmingham area, or were treated at Chamomile Suite MBU (recently or many years ago), APP has a monthly café group which supports women and families affected by postpartum psychosis (PP) - no matter how long ago your experience was. To find out more, get in touch via email: birmingham@app-network.org

Learn more about our partnership projects with the NHS

Around the country we have monthly café groups, Peer Support Facilitators and volunteer teams based within some NHS services and Mother and Baby Units. Find out more about our regional projects in the NHS.

31 October 2022

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

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.

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.

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