All posts by Lucy Nichol

Charity’s story: "I became obsessed by the idea that the doctors thought I couldn’t look after my babies".

In May 2021 I was diagnosed with postpartum psychosis following the birth of our triplet baby girls. I had been hospitalised directly after the planned c-section and kept in hospital with my babies for twelve days. I had very little sleep as the babies were feeding on average every two hours by feeding tube. This resulted in me suffering with exhaustion - a dangerous level of exhaustion in my opinion! Looking back, I think my psychosis started not long after giving birth, as my consultant explained postpartum psychosis can come on soon after the placenta is removed. In my case I had not one, but three impressively sized placentas!

To begin with I was acting unusually elated, adrenaline-fuelled yet detached from the whole experience of childbirth. For the first eight days I was using social media in order to update everyone about the triplets and was hardly ever off my phone, even when I had three babies to admire. After this time I became withdrawn and absconded from social media, I failed to reply to messages and even rejected my family and friends. I became petrified and anxious every time my wife left me alone in the hospital, and I was fixated on being alone all the time. On one occasion, I became extremely tearful when my daughter had her feeding tube reinstated and I was crying constantly and focusing on the miscarriage we had the previous year.

 

Things started to get much worse however, and I became obsessed by the idea that the doctors and midwives thought I couldn’t look after my babies properly. I’d convinced myself they thought I was ‘mental’ and that they’d take the babies away from us.

On Easter Monday we were finally allowed home and, unlike me, I didn’t tell a soul. Sadly, what was supposed to be a joyous occasion turned to disaster. We were suddenly without the support of the hospital with three 4 lb babies equipped with feeding tubes and with very little sucking reflex. I was petrified. I had extreme anxiety, constantly worrying about the babies dying, how to feed them, how to get them in to a routine, and I was still obsessed about being left alone. I’d ask the same questions over and over, I’d run around the house panicking and doing tasks that didn't need to be done like writing down every tiny detail such as ‘shake bottle with lid on’. I simply couldn’t undertake simple tasks without my disorganised scribblings in front of me.

I became a shell of the strong woman Sarah had married.

At this point I asked the doctors for anxiety medication, presuming what I had was some sort of postpartum anxiety. As I rapidly went downhill I asked Sarah’s mum (a former nurse) to move in with us, but then became obsessed that she’d leave me on my own and, perhaps even more worrying, I started believing that her dog would eat my babies!

I just couldn’t switch off. At night time I barely slept, the babies’ cooing and lullabies going around and around my head. I was panicking about the babies nonstop - wondering if they’d die in the night.

I had paranoid thoughts about my medication, thinking it was being hidden one minute, then believing I was being drugged the next. I was obsessing over magpies and robins in the garden too, and would look out the window in order to find two magpies - because if I saw one, I’d assume death was coming. I would freak out when the babies were being bathed, I’d accuse them of bathing them without me then switch to saying they’d not bathed them.

I’d stopped eating and barely showered. The one time I managed a bath I tried to scald myself just to ‘feel something’, and I became fixated on Nirvana lyrics and Kurt Cobain’s famous quote “it’s better to burn out than fade away”. I’d wear my Nirvana hoodie constantly as I believed it was symbolic. I started telling my family about previous depressive states when I was young, self-harm and an assault - secrets I'd kept all my life were pouring out of my mouth and I was unable to stop it. I just wanted the pain to stop and to be me again.

As time went on I had contact with the perinatal mental health team who came to see me urgently after my family informed them that I had said I wanted to go out and ‘play with the traffic’. When the nurses came to assess me they could see just how paranoid I was. I told the nurses that I needed to go somewhere safe, and it was decided that this would be a mental health hospital as I didn’t want to go to a mother and baby unit (MBU) and take the babies away from Sarah, the closest MBU being many miles away. Sadly, there was no space for me at Longreach or Bodmin Hospital at the time so it was decided I’d remain at home on sleeping tablets as home was my ‘safe place’.

As the days wore on I was convinced everyone was talking in code and that they had a conspiracy against me. I thought people were talking to me through the babies and through animals. Then, I ran away from home and hid in the woods for a while, returning in floods of tears and telling Sarah that I needed help before I hurt myself. I was suicidal.

Sarah was straight on the phone to the out of hours team and my sister came to our home to try to calm me down.

Within hours I was sent two doctors and two Approved Mental Health Professionals (AMHPs).

They assessed me and finally found me a bed at Longreach Mental Health Hospital so I was driven there by the AMHPs that night, in the early hours and voluntarily admitted.

Hospital was scary and my paranoia was through the roof. I was put on antipsychotics and slept on and off for three days straight whilst meeting numerous doctors. I was also anaemic and lacking in folate, which in itself can cause confusion.

I was seriously ill but no-one I knew had heard of my diagnosis Postpartum Psychosis – and I had Postnatal Depression chucked in on top of that too just to complicate things. There were also discussions around possible PTSD from our miscarriage and from some previous bad experiences.

I remained at Longreach for two weeks, my visits with my wife and triplets had to be supervised, and I was given four meals a day to help me put on weight as I’d lost so much. My psychosis continued and, in addition to the paranoia, I had hallucinations, too.

Now, 13 weeks after going home on a week’s leave, and with the right support and medication, I’ve really turned a corner.

Postpartum psychosis is now something I accept and I know now that it isn’t a life sentence – although it does put me at higher chance of getting it again in pregnancy (not that I need any more kids!) and of relapse in the future.

I remain on medication for my diagnoses and am currently being supported by the wonderful Perinatal Mental Health team, the Early Intervention for Psychosis team and I undergo Cognitive Behavioural Therapy once a week.

Although there are still bits missing from my story, I hope that my experiences will help other people and one day I will explain to our three miracles what had happened to me. I just want them to know that I was there in their early days - even though I wasn’t all there.

 

 

 

Cyclist to travel 850 virtual miles raising awareness of support needed for partners during postpartum psychosis

APPs Partner Peer Support Coordinator, Simon O’Mara, is embarking on a mammoth 852 mile journey to raise awareness of postpartum psychosis, its impact on partners and the need for more Mother and Baby Units (MBUs) in the UK.

Simon came up with the idea of a virtual tour of the UK’s MBUs to highlight their importance in caring for women who develop postpartum psychosis and their families. He hopes to raise awareness among women, partners and families of where the UK’s MBUs are and, importantly, the need for units in areas of the UK currently without them.

Simon, whose wife was diagnosed with postpartum psychosis 15 years ago, said: “When my wife was diagnosed it was a frightening time – not least because we had no prior knowledge of postpartum psychosis. But in many ways I feel that we were incredibly lucky in that we were able to access care in an MBU less than a 40 minute drive away – in my work with APP, I realise that many other families aren’t so lucky.”

Postpartum psychosis is a debilitating postnatal mental illness that can occur out of the blue in the days following childbirth. New mums with postpartum psychosis may develop high or low mood, or fluctuate between them, alongside delusions, hallucinations or severe confusion. Many of these mothers have had no previous mental health diagnosis prior to onset – although women with bipolar disorder are at higher risk. It affects around 1,400 women and their families every year in the UK and is always considered a medical emergency. However, it is treatable and women go on to make a full recovery with the right support.

Simon added: “APP has been campaigning for more MBUs for many years now, and cycling the distances between these services felt like a really good way to show just how these gaps in provision can affect families.”

Simon had planned to follow the route on the road, however, due to the pandemic, he invested in a smart trainer so he could complete virtual cycle rides using his own bike and smart technology. He will now follow the route virtually using the smart trainer, linking in with the MBUs along the way for online chats with MBU staff about partner support, and talking to other partners who have been affected by PP.

Dr Jess Heron, Chief Executive, APP, said: “Families across the four UK nations are often faced with difficult decisions about receiving specialist MBU care many miles from home or being admitted to a general psychiatric ward. As women can expect hospital treatment to last 8 to 12 weeks, and full recovery to take many, many months, this distance can be an enormous pressure on new families. Families in Northern Ireland, North Wales and the North of Scotland do not yet have access to an MBU in their region.

“While we know that experiencing a severe mental illness at this time can be devastating for women, our research shows that partners also describe the experience as the most traumatic of their lives. Many men describe long-term impacts on their own mental health. NHS England has made a commitment as part of the Long Term Plan to inform, signpost and support partners. We hope other regions of the UK will follow suit. MBUs play a vital role in supporting partners and entire family units at this time and have expertise that general psychiatric units do not have.

“We have been working with partners for a long time at APP to support them with information and signposting about postpartum psychosis and getting help, but we are delighted that we now have a dedicated peer support team who can provide email, telephone, forum and video call support for dads and partners. We work closely with all UK MBUs to ensure that all who need it have access to peer support when postpartum psychosis impacts their family.

”We are so grateful for Simon’s commitment to raise awareness of the support needs of partners and we will be cheering him on from the ‘virtual’ sidelines!”

APP delivers award-winning peer support services working in partnership with NHS Trusts around the UK, manages an online national peer support forum and facilitates impactful research into postpartum psychosis.

To find out more about Simon’s story, and to sponsor his cycle ride, please visit his JustGiving Page

If you are a partner and use Swift, Simon would love some support and virtual chats as he completes his journey. You'll also be able to follow him on Strava.

You can see  daily updates below; 

Day 1: Simon completed 41 miles, which is the equivalent from West of Scotland MBU (Glasgow) to St. John’s, Livingtston.

Day 2: 45.2 miles ridden, total mileage over the weekend now at 85.2 miles. 

Day 3: Simon is working in the week, so cycling in the evening. 24 miles done this evening.

Day 4: Simon cycled 26 miles in the evening, is 96 miles into stage 2, with a total of 136 miles completed to date.

Day 5: 26.5 miles completed with a 1,098ft climb.

Day 6; Sees Simon finish stage 2, a total of 179 miles into the journey and Beadnell MBU.

Day 7: Simon has now completed a total of 209 miles, and has a virtual meet with Beadnell MBU in the morning.

Day 8: Simon had a great virtual meet with Beadnell MBU this morning, having reached Morpeth last night. They talked about the support they not only provide for the mums but also the partners and families. A small unit and noticeable the large mileage between MBUs around this area, some partners/families having long journeys to visit their wife and baby. That's stage 2 complete. Simon is now 179 miles into the journey and about to start stage 3 a 121 mile stretch.

Day 9: Simon cycled a short stint today, just to keep the legs turning -10 miles. Stage 3 and Simon has completed 85 miles; only 35 miles to go till the end of this stage.

Day 10: A 24 mile ride, sees Simon only 12 miles from the end of stage 3 and shortly getting to Parkside Lodge MBU. 

Day 11: Another short cycle of 12 miles, keeping an average speed of around 22mph and sees stage 3 complete. Meeting with Parkside Lodge MBU today.

Day 12: Another quick 16 miles sneaked in. Meeting with MBU at Ribblemere meet on Sunday. Received a message of support from the MBU Bristol

Day 13: 342 miles in to the journey, around 40% of the cycle done. Another 26 mile ride competed tonight and 1038ft climbed, leaves just 24 miles to the end of stage 4 and the meet up on Sunday afternoon.

Day 14: Stage 4 complete and an extra mile started on stage 5. Just about to go and have a small ride for today

Day 15: Another small 16 miles ridden, well into stage 5 and today should see Simon finish that stage. Simon met up with Karen and Andrew at Ribblemere MBU, it was really good to meet and hear the support they provide.

Day 16: Stage 5 complete and onto Stage 6. The next meeting is with Adele at Andersen ward, Wythenshawe MBU  on Tuesday, which represents the end of stage 5.

Day 17: Simon was able to get another 16 miles (climb of 912ft) done and get the total miles cycled up to 415m, just another 11 miles to go before he reaches half way. So he is on stage 6 heading towards the Beeches.

Day 18: Simon was able to get another 16 miles (climb of 912ft) done and get the total miles cycled up to 415m, just another 11 miles to go before he reach half way. He is on Stage 6 heading towards the Beeches.

Day 19: Simon completed a 23 mile ride, taking him over the half way mark and around 2 thirds of the way into Stage 6.

Day 20: Another meeting held and this time with the Andersen ward, Wythenshawe MBU

Day 21: Inbetween chattting to MBUs, and tired legs… Simon completed a 12 mile ride, which sees the end of stage 6 and the start of stage 7 towards Greenhaven.

Day 22: After a few days rest over half term, Simon got my legs back in to it with a quick 12 miles

Day 23: Another 12 miles completed this lunchtime; it sees stage 7 complete and onto stage 8, a longer stage of 60 miles . It’s great to see the status map filling up with green…

Day 24: Thursday night and Simon managed to sneak in a 45 minute ride, covering another 15 miles. This finally takes him over the 500 mile marker; total at 505m.

Day 25: A late lunch today and time in the saddle for 18 miles, 540 miles in total and over half way in stage 8. Simon  also met with Shelley from The Beeches this morning and had another great chat covering what APP offer on the partners side but also the grandparents cafés groups, Health Unlocked, the training side of APP, and the peer support.

Day 26: Simon is nearing the end of stage 8, with only 6 miles before he starts Stage 9. Simon also did an Instagram live with DadMatters whilst cycling!

Day 27:  Another 21 miles done today, which sees stage 8 complete and me Simon has got 15 miles into stage 9. It’s only 34 miles this one, so Simon is almost half way through already, heading towards the Barberry.

Day 28: Simon is now over two thirds of the way through, hitting a total mileage of 578. Another quick 15 miles last night sneaked in after work. Simon is pretty close to just 3 full stages to go, though the next one to Melbury Lodge is 133 miles! Onwards and upwards, looks like a 1000 ft climb is coming his way!

Day 29: A 910 ft climb and 19 miles, taking Simon to a total of 597 miles, the end of stage 9 and 15 miles into the larger stage 10. Simon also took part in an interview on BBC Radio Surrey -  tune in to 3.46 minutes  https://www.bbc.co.uk/sounds/play/p09zf6j6

 

 

 

 

 

 

Day 30: Simon managed to put in a 12 mile ride in amongst everything else, a busy day but it still means he is a few more peddles forward and 27 miles into stage 10. It’s fairly flat on this section and only small inclines. There’s a couple of 500 foot climbs later on in this stage but that’s pretty standard climbs on a lot of his sessions anyway.

Day 31: Simon has been on the saddle for 31 days so far! Today's session although small, only 14 miles, was a tough one, as Simon was later than normal getting on the bike and decided he needed to try and do a faster average speed. That short stint takes the total miles to 623 and 41 miles into stage 10.

Day 32: Friday morning and Simon had a virtual meet with the MBU at Birmingham and was joined by Hannah Bissett APPs National Coordinator (NHS Contracts & Regional Projects), and Natalie Thompson APPs Peer Support Facilitator, Birmingham and Solihull. Another hectic weekend but Simon managed a 25 mile ride on Sunday, so has now been 32 days in the saddle. He is around half way through stage 10 (66 miles) and a total mileage so far of 648.

Day 33: This is the second longest stage but Simon now has 192 miles to go until the overall finish. He has ridden a total of 660 miles, with a small 12 mile ride Monday night, leaving him with 52 miles left to ride in stage 10.

Day 34: Simon completed a 21 mile cycle tonight, bringing the total up to 681 miles and for stage 10 only 34 miles to do, before a meet up with Melbury Lodge MBU.

Day 35: Simon got on his bike first thing before work this morning  and did 12 miles. He had a catch up with the Brockington MBU on Thursday. It was lovely to talk to the staff, hear about the MBU, and chat about APPs partner support project. Simon found a little more time later in the day, jumped back on the bike wanting to finish stage 10 and rode 23 miles, making a total of 35 miles on day 35. This now means he is 1 mile into the start of stage 11; only a 136 miles left until the finish.

Day 36: The end of the cycle is getting ever closer. Simon is now 20 miles into stage 11, which leaves him a total of 117 miles left to complete the challenge.

Day 37: Simon completed a 24 mile ride this morning. Stage 11 completed and onto stage 12 the LAST stage! With now only 93 miles to the finish; so far he has ridden 759 miles over 37 days.

Day 38: Simon completed a 29 mile ride today, climbing a total of 755 feet, which leaves him just 64 miles until the finish line.

Day 39: Simon managed a small 10 miles tonight, leaves just 54 miles left to do.

Day 40: Simon managed to get a 35 mile ride done tonight; which leaves him only 19 miles left to ride tomorrow (Friday) , having ridden a total so far of 833 miles.  A poignant day for Simon today, meeting the staff at Melbury Lodge which is his nearest MBU. Simon is now close to his fundraising target and thanks go out to all those who’ve sponsored him.

Day 41: Simon has now finished stage 12, the last stage in his 852 mile cycle!

Simon says "It’s been great meeting the staff at the MBUs and hearing about what they’ve been doing especially with covid restrictions but there’s also been tough at times, dragging myself up the stairs when it would’ve been far nicer having a meal and then sitting on the sofa! I’ve also had moments where I was taken back through our own journey and also considered how much awareness and change APP have been a part of. Also had a few brilliant times in the virtual world of Zwift, when you just find yourself in a group of riders from around the world, in a pack all keeping up with each other, it just pulls you along and helps with motivation. Thanks to all those who have supported me."

FACTS AND FIGURES

Amount raised to date £1131.88   Equipment used
Total Distance travelled 852 miles   Mountain bike
Total Climbed 24,232 feet   Wahoo Kickr smart trainer
Challenge Completed over 41 days   Zwift (running on an iPad)
Total hours on challenge 45 hours 19 minutes   Fan – Big!
Average speed 18.8 mph   Towel…
Longest mileage in 1 session 45.2 miles   Me & legs!
Highest climb in 1 session 2345 feet    
Longest time in 1 session 2 hours 43 minutes    
Total fluids taken whilst cycling 45 litres    
Longest time in 1 session 2 hours 43 minutes    
Radio listened to Endless    
Latest ‘Dr Who’ series Watched 4 episodes
  • Hadn’t watched since I was a child, not telling who the Dr was!
Movies 2 – (1 Xmas movie!)

Status Map

 

 

 

 

 

 

 

 

 

 

Katherine’s story: "The best view definitely comes after the hardest climb".

My husband and I were very lucky in that it didn’t take long after we were married to conceive. When the positive pregnancy test came, my husband was over the moon but I struggled to believe my eyes and sent him to the shops to buy another test! I ended up taking a few before the reality actually sunk in and I could be confident in celebrating, but once it had we were both over the moon!

I absolutely loved being pregnant - it was an amazing feeling growing another little human. In the grand scheme of things my pregnancy was a breeze; I had the usual morning sickness but on the whole I felt pretty good all the way through (although, why they call it ‘morning sickness’ is beyond me... I had it all day!)

When I was 35 weeks pregnant lockdown hit the country, so I began working from home and worked up until I was 37 weeks pregnant. My work consumed my time and my thoughts, and if I’m honest, I hadn’t really given the whole idea of labour much thought.

As soon as I stopped working, however, there was a void and I felt quite lost; this meant I had time to think... or should I say overthink!

The idea of labour hit me and to be honest I wasn’t feeling good about it - I was so scared. But in April of the first lockdown, our lovely baby Jude was born. 

Despite the difficult Covid situation, the midwives at the hospital were just amazing and even worked over the time of their shift to deliver our bundle of joy.

In the first few days after birth, like any new mum I was emotionally delicate and felt a spectrum of emotions. My body felt like it had been hit by a bus! But we were in awe of Jude and so excited to bring him home. Naturally, we just wanted to share him with loved ones, but the pandemic meant we couldn’t do this in the way we wanted. I just craved hugs!

When people say in jest “be prepared for those sleepless nights” they are NOT kidding! I was exhausted and definitely suffered from sleep deprivation. Even when I did get the chance to sleep, I was unable to switch off and sleep soundly.

Then, exactly a week after I gave birth, I experienced a psychotic episode. It came on really quickly and escalated - in just ten minutes I went from feeling like myself to becoming a shaking wreck. My thoughts were racing and I was trying to write them down on my phone to get them out of my head but I couldn’t type quickly enough. I didn’t tell anyone about these racing thoughts but very quickly, they turned into delusions.

I believed that tapping my phone rapidly would transfer the thoughts from my head into my phone, and I thought rubbing my hands or tapping on myself quickly would slow down time. I began thinking about God creating the world in seven days and believed I could now understand how he did it. I started to think I was the second coming and that Jude’s birth was linked to this.

I was unable to swallow my food and was convinced that if I flushed the toilet it would trigger a Noah’s Ark type situation.

My mum and husband tried to get me to sleep and rang the hospital where I had given birth as they were so worried about me. They were advised to take me back into hospital. My husband drove us and my mum stayed at home to look after Jude. My delusions became much worse on the way and I believed the car was going to crash and that we would die. I then started to believe that the things that happened to Jesus would happen to me – betrayal, disbelief, crucifixion. I also became confused about who was who, and at one point thought that my husband was my dad.

I was given medication and diagnosed with postpartum psychosis. I woke up the next day feeling confused and I still had some strange beliefs but eventually I was calm enough to be discharged back home with the support of the crisis team.

Over the following months I continued to struggle at home. I experienced a range of emotions, and desperately hoped it would all pass and get better. But it just got worse...

I experienced panic attacks, I lost my appetite, I had blurry vision, mood swings, I felt numb and spaced out, I had constant anxiety and difficulty concentrating. Day to day things such as cooking became impossible as I was unable to process things, and I became obsessive with making lists and tidying. It felt as if the enjoyment had been sucked out of everything. I didn’t know long I could continue to go on for like this. I finally built up the courage to ask for help and admitted myself to a Mother and Baby Unit (MBU) where I spent a total of four months. I was lucky to get a bed just an hour away from home – something that isn’t currently a possibility for everyone and some mothers are admitted to a general psychiatric ward and separated from their babies.

Going to an MBU ensured I was able to recover with our baby by my side, but it was still a difficult journey being in a hospital environment and I found myself watching the clock all day every day and, due to COVID, visits were restricted to three times a week for just one hour per visit.

That being said, the staff were second to none. They were so caring and supportive and ensured you were listened to every step of the way; they were a real credit to the NHS! I also made friends with some of the other mums too, which made life a little less lonely.

It got worse before it got better, however, and my anxieties eventually turned into a severe depression. Now I know that the illness just had to run it’s course, however at the time it felt as if I’d never recover. Sometimes, when you’re in the midst of mental illness, you just can’t see any way out.

I was so home sick that I asked for day release - all I wanted to do was walk along the river. My leave was granted and we did what I’d been dreaming of for so long. For me this was the turning point; it was like the flick of a switch. The fog lifted and for the first time in a long time I felt more like myself. It was only a few weeks after this that I was fully discharged and able to continue my recovery from home with the family.

This is why I wanted to tell my story - to share hope with anyone out there suffering and seeing no way out.

If that’s you, you might not believe me now, but hold on and keep going. I promise it does get better.

And to my friends and family who checked in with me regularly, sent beautiful gifts through the post and held my hand when I was lost I want to say thank you - you helped me find me again.

Being ill for so long and having to fight so hard has given me a different perspective on life; it has made me appreciate and cherish all the little things so much more. Watching Jude grow and learn new things is my greatest joy. The best view definitely comes after the hardest climb.

Fiona's story: "When I became pregnant the second time around, I was much more sure of what I needed".

Fiona Putnam shares her experience of getting pregnant again having experienced postpartum psychosis.

I suffered from postpartum psychosis in 2015 after the birth of my first child, prematurely, at 31 weeks. My episode culminated in a suicide attempt and I stayed on a psychiatric ward and on a Mother and Baby Unit for two months while I put myself slowly back together (with the support of the staff there, my husband, my friends and family).

In 2018, knowing the risk of relapse, I got pregnant again and gave birth to my son. Despite complications with my physical health (I had a dangerous condition called Acreta, where the placenta attaches to the old c-section scar) I remained well, with the support of a fabulous midwife, a prophylactic anti-psychotic, my fabulous mum friends who had been so supportive when I was ill first time around, and my very nervous friends and family!

By day five, post hysterectomy and birth, the professionals knew that my chances of becoming unwell with pp had lessened, although the depression that I suffered from after my first episode did return. Second time around, I was much more sure of what I needed and sat in a doctor’s waiting room as he contemplated what to do with me and said, uncharacteristically, “I’m not leaving this room until you prescribe me an anti-depressant”

Mental illness can make you much more badass when you know you’re becoming unwell!

When my sleep was impacted by the depression, I got scared of more serious symptoms returning and fought to have a room on the mother and baby unit again. I was actually only there a week, as the medication kicked in quickly the second time around. The thing that struck me in that week was doing a drama therapy session (a bit of a bus man’s holiday as I worked for many years as an actor) where I drew a picture of what my ideal family life would look like, all sat around a fire, toasting marshmallows and laughing: just months later, I realised that that picture had become a reality, as we sat with friends on our allotment on bonfire night, my new baby in my arms. As with my daughter, I did struggle in that first year (the baby stage is not my favourite!) but I just accepted that I found it hard and didn’t send any more arrows my way.

When my son was one, I became energised for my career again, and started to retrain as a mindfulness teacher.

Mindfulness was a lifesaver for me when I was unwell. I set up my own coaching company, having spent years waiting for others to see my talents!, and I resumed writing with my writing partner, novelist Nuala Calvi, who I met at a group for mums who were struggling post-birth. This year I have started working part-time for the NHS as a peer engagement facilitator, working with women who are struggling postnatally, just like I did. It’s a great privilege to use my lived experience to help other women and to show them that mental illness doesn’t have to break you; it can, in fact, be a gift. I wouldn’t wish my experience on anyone, but I can honestly say it has been the greatest gift I’ve ever been given in life, along with my two gorgeous, loud, effervescent children.

 

 

 

A day in the life of…a Peer Support Facilitator

Natalie Thompson has worked with APP since 2019 and is based in our Birmingham and Solihull peer support team. Having experienced PP twice herself in 2003 and 2007, and later being diagnosed with bipolar disorder in 2010, Natalie helps support women and families affected by PP (or other illnesses featuring manic or psychotic symptoms). After treatment in an acute psychiatric ward and fantastic care at the Birmingham Mother and Baby Unit (MBU), Natalie knows how challenging it can be to settle back into everyday life.

Here, she shares a typical day in the life of her role with APP.

09:00

I always start the day with a cup of tea (never coffee!) to wake me up. Steaming hot brew at the ready, I’ll open up my laptop, check my emails to see if there’s anything urgent I need to respond to, and then I’ll make a plan for the day. I also have a paper diary to cross reference with to make sure I don’t miss anything – I haven’t quite managed to go entirely paperless yet!

09:30

Armed with another cup of tea, I’ll call the women on my caseload to check in and see how things are. In normal times, this might be a face to face chat but during the pandemic we have tried to stay in touch by phone or zoom meetings. I know from personal experience that chatting to someone who has been through what you have is such a big help and makes you feel less alone in your recovery (which also helps to speed up recovery). From these calls I’ll write up my notes to make sure I am able to reflect on any areas I need to follow up on.

11:00

To end the morning, I might refresh my skills by taking part in training and shared learning. Sometimes this will be provided by the brilliant team at APP, but, as a partner of the local NHS Trust, we are also able to access NHS training and development too. It’s always good to keep learning and hearing best practice and I feel lucky that this is something APP is so supportive of.

12:30

Time for a lunch break. One of the perks of working from home during the pandemic is that my husband always makes our lunch which gives me more time to simply switch off for a break. He usually prepares nice healthy meals – but always tends to over do it with the mayo! (Not that I’m complaining!)

13:30

After lunch, I might attend an MDT meeting (multi disciplinary team meeting – one of the by-products of working in health is the number of acronyms you become accustomed to!). This might be attended by clinicians, nursery nurses etc.... and some of the issues we might address could include women on the high risk pathway and admissions to the MBU. Next up – it’s finally time for my one and only cup of coffee of the day! If I have any more than one I'd be bouncing off the walls!

14:30

Next I’ll make sure I get moving and get some fresh air by doing a socially distanced walk with one of the women on my caseload who is recovering from PP. These ‘walk and talk’ peer support meetings have been great during lockdown – especially for women who feel anxious leaving the house alone and those who don’t have a great social network. Getting out is difficult for new mums as it is, but even more so when you’re recovering from severe mental illness – and we know that exercise and fresh air both contribute to wellness so it’s a win-win.

15:30

Next, I might prepare for the APP café group – a session where several women get together to share their experiences or just to socialise with others who have been through similar experiences. When restrictions allow, these are all done in a physical space, so I’ll check out the venue, make sure they have good facilities and space, etc. Then, I’ll email participants a little reminder or, where outdoor café groups take place, check on the dreaded weather!

16:30

Time to clock off. That’s the great thing about working for a charity that’s committed to mums and babies spending time together – they like to ensure your work doesn’t eat too much into your family time! So even when I work from home I’m pretty strict about clocking off at the end of my shift and joining my family for a relaxing evening.

To find out more about current APP peer support job vacancies, click here.

 

 

 

 

Hugo’s story: "Don’t be too proud to ask for help – both for your partner and for yourself".


Hugo White, formerly of The Maccabees, is a musician and, we’re proud to say, an APP Ambassador, alongside his wife, author Laura Dockrill, who experienced PP in 2018.

Here, Hugo shares his story...

'I’d known Laura since we were kids, and we’d always been close friends. But we didn’t actually get together until years later, aged 30, when the stars aligned and our worlds brought us back together.

So when Laura found out she was pregnant if felt like the most perfect thing. I knew there was nobody else I’d rather go on that journey with.

Of course, becoming a parent is rarely straight forward and, in our case, it was incredibly traumatic, resulting in Laura’s diagnosis of postpartum psychosis (PP).

The birth had been extremely traumatic – way beyond what our anxieties could have anticipated – and Laura had to have an emergency ceasarean. The problem was, as first time parents, we had no idea what was considered a normal response to the trauma. Sadly, because PP is still so misunderstood, the doctors didn’t spot it for some time either.

I was so relieved to hear our baby boy, Jet, screaming as, due to the complications we endured, we’d been told he was starving in the womb. From that moment it felt as though the trauma of the birth had been released from me, but it was an entirely different story for Laura.

Having been through so much trauma – physically, mentally and emotionally – Laura was completely exhausted. Even so, as a new mum, she had no respite, as Jet was so skinny and was needing to feed constantly. Laura and Jet stayed in hospital for five days so we were relieved when we were all able to be at home together as a new family. And I really believed at that point things would be OK.

Sadly, however, that wasn’t the case.

Laura kept telling me that something wasn’t right. There’s a blurred line when it comes to mental health after someone’s had a baby because you kind of expect there to be some upheaval, the baby blues etc. So that can get in the way of spotting something more serious like postnatal depression or postpartum psychosis. But Laura kept persisting, telling me that something was very wrong so we visited the doctor on several occasions but they kept reassuring us that everything was normal.

In between these visits, Laura developed extreme paranoia, delusions and hallucinations, which turned to suicidal thoughts. It kind of crept up on us but even though I could clearly see that Laura was delusional, no midwives or doctors were able to pinpoint what was going on.

Thankfully, Laura’s best friend, Adele, did some online research after we discussed the symptoms. She found some information on PP and Laura ticked every single box. As soon as I saw this I knew we needed emergency help so I called a psychiatric doctor – something I had to do privately as I couldn’t get an NHS appointment for several days and all the information I had been reading impressed upon me how urgent care was a necessity.

Laura was very quickly admitted to hospital.

The scariest time was being at home alone with Jet. I had my three week old baby sleeping in my bed, and Laura wasn’t with us. I had no idea if she could get well again or if she was even coming back at all.

Thankfully the doctor was really reassuring. He looked directly in both of our eyes and he told us that Laura would 100% recover. Being able to put my trust in him and knowing that she was in the right place really helped me hold onto that hope.

Finding recovery took a long time, and, although Laura was only in hospital for three weeks, it took much longer for her to reach full recovery. At that point it was my job to put everything else to one side and really focus on supporting Laura and Jet.

Laura worked really hard at her recovery and I felt lucky that she was so open about how she was feeling. Being able to talk about things honestly with each other was really important and Laura went through a lot of therapy as well, learning lots of new tools to support her recovery.

A year later, with Laura feeling fully recovered, I almost completely sank. I started experiencing anxiety and panic attacks – something I’d never experienced before. I think it was some sort of delayed reaction to the trauma we’d all been through as a family.

Being able to share what I was going through with Laura was so helpful. Having been through so much anxiety herself as part of the illness, Laura had learnt so much in terms of how to deal with panic. While I saw my GP who also helped me, I really credit Laura for coaching me through it and, after around a month, I felt much better.

In some ways, I feel that our relationship is even stronger now because of these experiences. We have a much better understanding of ourselves and of each other, and our bond as a family is as strong as ever.

Feeling too proud to ask for help as the partner of someone who has been through such a serious mental illness actually only makes things harder for everyone involved.

Of course its going to have an impact on you and, the sooner you acknowledge that and get support, the better it is for everyone.

When it comes to PP, there are so many others who have been through what you have – both in terms of the women diagnosed and the partners or close family members who support them through it. You shouldn’t feel ashamed of the impact that it can have on you. It really is traumatic. But there is help out there – from your doctor, from APP’s partner peer support network and from all the information that is available online.

It’s reassuring to know there are others out there when you feel so alone so don’t hesitate to reach out – to get help for your partner, but also for yourself.'

Laura presents a BBC Radio 4 Appeal for APP, broadcasting on 24th March 2024.

 

Gails poem: Don’t You Remember.

 

Don’t you remember?

Im sorry, I can’t!

That’s how it begins

But it ends in a rant

 

A rant about tablets

A rant about hope

A rant about weight gain, this body, the bloat

 

But it’s made you all better

You’re finally free

I see that, I’m thankful

I just can’t see me

 

I wish I could tell you

“I’m better, life’s great!”

But sometimes I wonder

If the madness was fate

 

They say it takes time

But what time do I have

A babe under two

You’re having a laugh

 

The days do seem better

Now I have a routine

But some days it feels

Like I’m still in a dream

 

A big fog to wade through

A bleary eyed mess

But then nap time comes

And you lay on my chest

 

My troubles forgotten

The smell of your hair

These things I’ll remember

For now there’s no fear

 

No fear that I’ll break you

No fear you’re not loved

Just look at you growing

For now, that’s enough

 

Gail Whitehouse

PP warrior 2020

 

Emma’s story: "I suffered panic attacks so bad that my heart raced until I passed out".

I’d never heard of postpartum psychosis (PP) until I was diagnosed with it. Even then, nobody really explained to me what was going on. It was the most terrified I’d ever been.

My first pregnancy was fairly straightforward and I was really excited about becoming a mum. I had a natural birth, however, it was fairly traumatic and I suffered a severe tear, resulting in surgery after the labour.

From the moment I gave birth it was like somebody had flicked a switch in my head.

I no longer felt like me, in fact, I felt as though my body had been possessed. But this was just the start of a frightening journey that caused me to experience hallucinations, delusions, acute anxiety attacks and debilitating depression.

Worst of all, because the illness wasn’t broadly understood by the health professionals who were treating me, it took over two weeks for my exhaustion, agitation, change in mood, lack of sleep and extreme restlessness to be properly diagnosed as PP and treated accordingly. Up until then, I was left in a hospital bed, fed sleeping pills to make me sleep and told that what I was going through was normal for a new mum.

But it was far from normal.

My memories of the first three nights in hospital are a complete blur, and what followed was a terrifying rollercoaster ride. My mind was racing with so many worrying, intrusive, dark and scary thoughts and my behaviour was so erratic and out of character that my family knew there was something very, very wrong.

I became extremely paranoid and suspicious, thinking that everyone wanted to have me locked up because of a conspiracy theory that I knew about. Yet despite all of this, I was sent home with my baby. Because my behaviour was so erratic, my mum came to stay while my then partner took our little boy to his mum’s house with him.

One evening, I woke up at 4am and was convinced someone was trying to break into the house. I barricaded the bedroom door and became completely hysterical, calling the police and telling them we were going to die because somebody was out to get us.

That night, I was sectioned and sent straight to a psychiatric ward by ambulance.

It was only at this point that a doctor told me I had ‘puerperal psychosis’ (another name for postpartum psychosis) but nobody explained to me what that meant. Eventually, however, they found a place for me on a Mother and Baby Unit at Wythenshawe Hospital where I was reunited with my baby.

Having the specialist care and support that being in an MBU brings, I began to steadily recover. I had the right medication, the right expertise and lots of support that enabled me to keep my little boy by my side – something which I discovered was so important to the rate of my recovery.

My speech began to slow back down to a normal pace, and the delusional thoughts were becoming less and less. My anxiety, however, was through the roof, and I suffered panic attacks so bad that my heart raced until I passed out.

After 28 days, the length of my Section, it was decided that I still wasn’t quite ready to go home and, to be honest, I knew the doctor was right in making that decision because I didn’t feel ready either. It was around this time that the depression really ramped up. I also found out that my nanna had passed away which was another devastating blow.

While the psychosis had diminished, the depression and anxiety became chronic, and I was on medication for more than three years to manage it.

During that time, we decided to try for another baby. We knew that I was at high risk of developing PP again, so it was a difficult decision, but we wanted a brother or sister for our little boy. In 2015, I gave birth to my daughter, and once again, I experienced PP.

Unfortunately, this time, there was no space at the MBU close to home, so I was sent to a unit nearly two hours away, where I spent Christmas away from my partner and our little boy. However, I was pleased to be able to begin my road to recovery with my baby daughter by my side. I was so relieved that we were able to stay together and develop that special bond, with my treatment beginning almost as soon as the symptoms manifested this time around – because we knew straight away what was happening.

I was too ill to return home for Christmas Day, so my then partner and son brought all the presents for us to open together and we made the most of it, playing music and games and enjoying a buffet in the evening. The staff were just brilliant, doing all they could to make our day as special and as normal as possible.

After five weeks, I was transferred to a nearby MBU closer to home to start home leave. After another six weeks, I was able to return home and begin rebuilding my life with my family complete.

Having PP gives you a really different outlook on life - it really changes how you think. But one thing I want other women to know is that they really will recover and go on to live a healthy and happy life. We just need to ensure that women are able to access the right treatment as soon as possible as it can be such a devastating and life-changing illness if left.

BACK TO STORIES

NHS partnership increases peer support across Black Country for mothers experiencing postpartum psychosis

Black Country Healthcare NHS Foundation Trust is partnering with national charity Action on Postpartum Psychosis (APP) to expand specialist peer support services across the region.

Recruitment is currently underway for a dedicated peer support facilitator to work with mothers based in the Black Country who have experienced postpartum psychosis – a severe postnatal mental illness. The service will be managed by APP in conjunction with the Trust, to support women on their road to recovery.

Postpartum psychosis is a debilitating postnatal mental illness that can occur out of the blue. New mums with postpartum psychosis may develop high or low mood, or fluctuate between them, alongside delusions, hallucinations or severe confusion. Many of these mothers have had no previous mental health diagnosis prior to onset – although women with bipolar disorder are at higher risk. It affects around 1400 women and their families every year in the UK and is always a medical emergency. However, it is eminently treatable and most women go on to make a full recovery with the right support.

Dr Jess Heron, CEO, Action on Postpartum Psychosis, said: “We currently run a number of successful peer support services across the country commissioned by the NHS, including one in partnership with nearby Birmingham and Solihull Mental Health Trust. In combining this type of peer support with the necessary clinical care required we can ensure that women receive a truly holistic, sustained and specialist treatment. It can be daunting leaving hospital after experiencing something as confusing and frightening as postpartum psychosis, so making this additional support available within the community is invaluable for ongoing recovery. Being able to support women and families at this critical stage is key to reducing the trauma, giving hope, and helping women and families feel less alone as they navigate the recovery process.”

Hannah Bissett, National Co-ordinator (NHS Contracts & Regional Projects), Action on Postpartum Psychosis, said: “As a woman who has personally experienced postpartum psychosis I know how isolating and afraid it can make you feel. Peer support is a vital piece of the recovery jigsaw and we now have over 2,800 lived experience users sharing their stories and receiving support from trained volunteers as part of our national peer support forum.

“Having somebody there for you who knows exactly what you’re going through and who can inspire hope will undoubtedly bring a sense of relief and reassurance to women in the region who may find themselves experiencing postpartum psychosis. We’re delighted to be partnering with Black Country Healthcare on this project and I’m looking forward to hearing from applicants with lived experience interested in the peer support role.”

APP already delivers successful and award-winning peer support services working in partnership with NHS Trusts around the UK, as well as managing a thriving online national peer support forum. The charity also provides peer support for partners of women who are experiencing or have experienced postpartum psychosis.

To find out more about the Peer Supporter role, visit www.www.app-network.org/jobs

 

 

Lobeh’s story: "It wasn’t until I had my fourth child that I experienced postpartum psychosis".

 My first experience of psychosis was back in 2009. I was in my last year of university and really struggling with the pressure of studying, my placement and writing up my dissertation. I stopped sleeping for several consecutive days and I just couldn’t shut my brain down.

I was talking really quickly, and became quite aggressive and reactive, shouting in the workplace because I believed people – and even at one stage a cloud – were following me. It wasn’t long before I was sectioned.

It turned out I had experienced a psychotic episode and I was eventually diagnosed with bipolar disorder. I had treatment and psychotherapy and, for many years, I was fit and well.

I met my husband in 2012 after I’d qualified in my profession. Everything was going really well, we married had our first child, then our second, and I was still really well.

When I had my third child there were some indications that my mood was changing and that I was going through some hormone imbalances, but I didn’t experience another psychotic episode until after I had my fourth child in 2018 – nine years after my previous episode of psychosis.

Because of my bipolar disorder, I always knew I was high risk for postpartum psychosis. However, having had three children with no problems, I really wasn’t expecting it to happen. Sadly, though, there were lots of complications and trauma around the birth of my fourth child and I ended up having an elective c-section.

When my baby daughter was born she wasn’t breathing and needed resuscitation which meant that we had no body contact as she was immediately rushed off to intensive care. I was fit and well at the time so was officially discharged but I didn’t want to leave my baby so they allowed me to stay. Within two weeks we were discharged together.

The problems didn’t end there, however, and after a few days at home I experienced fits and, as these were markers for an infection, I was rushed back to hospital where I had to undergo more surgery. They found that some of my placenta had been left inside which had caused the problems.

Once the physical risks had subsided I returned home. This is when the symptoms of postpartum psychosis hit me.

Three days after coming home I started erratically gathering items from the home to sell at a car boot sale – I felt compelled to do it, even though I had just come home with my baby. My attention was so often diverted away from my baby and, as a result, I wasn’t caring for her properly. Sadly, I had lost all sense of reality and I didn’t really understand what was happening or what I was supposed to be doing.

I believed that people were trying to take my baby away, I was driving around disorientated for hours with no idea why and constantly collecting these items to sell. Every day it was as though I woke up on a mission, it was as though something else had control of my mind. I was completely confused, lost all inhibitions, was over thinking and over talking. I would find myself in places or doing things with no idea how I had got there.

My husband tried to support me and he sought medical help and spoke with other members of the family. But the problem was, it’s hard to detect postpartum psychosis because how can you know what is normal behaviour after having a baby? It’s only when it becomes really erratic that it becomes more apparent – and at that stage you always need emergency care.

Eventually, having travelled out of my area and being filed as a missing person I was found in an apartment and sectioned.

Why MBUs are so important

I was brought straight to a hospital, however, there weren’t enough beds in nearby Mother and Baby Units (MBU) so I ended up on a general psychiatric ward and separated from my baby. Unfortunately, when you’re separated from your child this can really trigger more paranoia and make things worse.

I was also really scared on the ward which I don’t feel was managed very well and I had a particularly difficult time there. I had just had two major surgeries and some of the women on the ward were incredibly unwell. I got into a disagreement and I remember being kicked and punched. I was found unconscious and sent to A&E.

After I had been on the ward for a month a bed in a Mother and Baby Unit came up, but it was so many miles away from my home and family. MBUs are imperative for the safety and welfare of women who have just had children, and if I had been offered a place closer to home I would have accepted. But as this was so far away I petitioned through a tribunal to instead be discharged.

When you’re separated from your child this can really trigger more paranoia and make things worse

How I found recovery

Every woman has a different experience when it comes to treatment and recovery. In my case, I received antipsychotic medication to alleviate some of the psychosis and then, as I started to come round from the confusion, I started talking therapy to explore how I felt and what had happened. It enabled me to talk about the trauma of the birth which had obviously affected me greatly.

Because I wasn’t with my baby I missed out on some of the bonding time during my recovery so lost my confidence as a mother which was really hard. I also fell into a depression which was really challenging too. Recovery is gradual, and having the therapy and my family and friends around me helped a lot – as did my faith.

I also found lots of help through APP. When I first Googled postpartum psychosis and APP came up in the search, I felt as though I was the only woman in the world going through this. But when I was introduced to the peer support forum I realised that there were many women who had experienced this illness. I joined the monthly meet ups and it was fantastic being able to support and be supported by other women. I am especially pleased that APP is proactively encouraging engagement from BAME communities because mental health is such a taboo subject in some of our communities, so having more knowledge, awareness and engagement is key.

And that’s why I’m sharing my story today. I hope it inspires other women to feel confident in coming forward and asking for help.