This Christmas, we want to raise awareness of some of the challenges faced by families affected by postpartum psychosis, as well as the hope and inspiration they found, by giving new meaning to our favourite festive songs.
Check out and enjoy the playlist below, and read personal stories of hope, recovery and love that relate to each song.
Continue reading Listen to APP’s festive playlist - and find out why we chose these popular songs
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.
It’s hard for partners – and men generally – to admit there’s a problem that they just can’t fix themselves. But when my wife became ill with postpartum psychosis (PP) and continued to struggle for many months, I felt as though I’d failed as a husband. In reality, we simply didn’t get the help we desperately needed as a family.
We’ve got two boys. Our first son was born in 2019 and everything was fine with the pregnancy, but when it came to the due date things started to go wrong. It was all a bit traumatic and when he was eventually born many hours later he looked like he’d gone ten rounds with Mike Tyson - all bruised from the forceps. Then the first three weeks were pretty full on as we were in and out of hospital and with all the trips to the hospital, I was pretty much living in my car.
While my wife was in hospital she was really on edge and worried about everything – especially cleanliness. She was cleaning the hospital room constantly and not sleeping. But nobody really noticed anything because we were kind of just left to it.
After three weeks she finally came home. However, we were due to move when our first son was six weeks old, so there was a lot of packing, people coming and going, we were both tired and worn out.
When we moved and I started my new job, my wife seemed to be doing really well on the outside, going to mother and baby groups and things. But in the background she was struggling with postpartum psychosis – and I had no idea.
I’d come home from work and ask how things were and she’d tell me things were good and tell me little stories about the mother and baby groups – but I know now that she had stopped going.
Around this time she became really worried about locking all the doors and checking the windows, and she became convinced that somebody was outside the house watching and waiting for her. Plus, I didn’t know it at the time, but she was convinced that I was trying to poison her, and she could hear sounds that weren’t really there, like the phone ringing when it really wasn’t.
Because my wife is a midwife, I think she knew what to say and how to behave to keep her problems hidden and to make everything seem OK. But it really wasn’t.
A few months later I was at work when my wife rang me begging me to come home and look after our son. When I got home she was sitting on the sofa with our son asleep in her arms, but she was stuck in this circle of changing emotions. She was happy, then she was crying, then she was angry and then she looked terrified. She kept looking behind her as well as if she thought somebody else was there.
I tried to talk to her but it was as though she just wasn’t there. So, not knowing what to do, I called 111 and told them I thought my wife was having a mental breakdown. They advised us to go to the GP and I managed to get her in the car, but once we were in the waiting room, even though we were only there for a couple of minutes, it felt like the longest time ever. She was crying and going through all these emotions and people were looking.
When the doctor called us and we walked down the corridor we got half way before she stopped and screamed. She began clawing at the wall, wanting to get out. When we got into the doctor’s room she wasn’t able to speak, and they immediately referred us to the crisis team, telling us to go home and wait.
After we got home, my wife started coming round and snapping out of it a little. She asked me what had happened so I explained it all to her.
The crisis team, a man and a woman, came to visit the house the next morning but the man was really unhelpful, not listening to my wife and interrupting her when she was trying to explain the feelings and thoughts she had. They left, said they’d follow up, but we never heard from them again. And things carried on much the same with my wife feeling paranoid and anxious.
Eventually, we tried for another baby and my wife fell pregnant with our second son. When she went to book in with the midwife and told her everything that had been happening the midwife was like woah stop, that’s not right.
She immediately referred us to the perinatal mental health team and it was only then that we started to get proper help.
Within two days we had a mental health nurse visit, who said that my wife was suffering from postpartum psychosis. We were both quite upset, but it was also a relief to know that there was a reason behind everything that had happened.
They put her under their care, came every week, put her on medication and sorted some therapy, saying that the main goal at that point was to get her through the pregnancy and that after the birth, they’d review things.
After the birth things started off really well and her medication was changed which seemed to stabilise things. But then one week things suddenly went back to the way they were, with my wife convinced there was somebody in the garden and feeling really terrified. This time we had a consultant to call and they came out the next day and told us that it would be best if my wife went to a Mother and Baby Unit (MBU).
We were both shocked and upset, my wife was crying. But the consultant said we needed proper help.
I remember her looking at me and saying that she could see that I was drained and that I couldn’t do this by myself anymore and she was right. I’d held the fort for two years.
My wife wasn’t keen but eventually she agreed to go willingly. It was during the pandemic, so I wasn’t able to go in with her and simply had to drop her off. She was able to keep our second son with her but not our first son, but I was lucky in that my employer was really supportive, telling me to stay at home, look after myself, my sons and my wife.
Eventually, my wife was discharged and she’s been on the up ever since. She’s now off her medication and is back to herself and doing great, and being a brilliant mum.
For me, not knowing what to do, it felt like the worst rollercoaster ride ever when we were in the midst of her illness. I didn’t have a clue what was really going on, then when I found out how she had been feeling I felt like I’d failed, and that I should have known. I beat myself up for a long time about it but I did eventually seek help for myself, and I got some counselling, which really helped.
The perinatal mental health team signposted us to APP and, when we felt ready, we joined the forum and began talking to other people who’d been through it.
Peer support makes you know you’re not alone.
And it provides ways for you to give back and help others. It’s a big thing for me and my wife to have that opportunity, to try and help somebody else.
We’ve also had our experience of services investigated - this was something the perinatal mental health team instigated. And we now know that our experience is going to be talked about in health professional training – another way in which we are able to do our bit to stop anyone else having to go for so long without getting the diagnosis and help they need.
Finally I’d like to say that, for anyone else who is supporting somebody with PP and struggling, know that it’s not your fault. And look after yourself. Just because you can’t fix this on your own it doesn’t mean you’ve failed. It’s hard to admit that you need outside, professional help but make sure you let somebody else in. You don’t have to do it alone.
It’s World Mental Health Day today (10th October) and this year’s theme is ‘make mental health and wellbeing for all a global priority.’
For the 1,400 women in the UK and 140,000 around the world who develop postpartum psychosis (PP) each year, their experience of care varies hugely.
Northern Ireland (NI) is the only part of the UK that doesn’t have a Mother and Baby Unit. Mums with postpartum psychosis and other serious mental health issues are still being separated from their babies and admitted to general psychiatric wards.
Today, along with the Maternal Advocacy and Support Unit (MAS), and a coalition of over 40 charities and organisations, we will be presenting an open letter to the NI Health Minister Robin Swann to ask him to urgently prioritise setting up a Mother and Baby Unit (MBU). You can read the letter in full here.
The open letter is being presented alongside a petition from APP’s Regional Representative in Northern Ireland, Oorlagh Quinn, showing the strength of public support for an MBU.
In May 2022, an inquest into the tragic death of Orlaith Quinn, due to postpartum psychosis stated that her death was “both foreseeable and preventable”. Coroner Maria Dougan recommended that a specialist mental health Mother and Baby Unit (MBU) should be established in Northern Ireland as a matter of urgency.
The Northern Ireland Assembly has been discussing a unit for more than a decade. We want to make sure there are no more delays. There is a business case in development, but the coordinated action of charities, and sharing powerful stories with the media and public, will give the business case the best chance of success.
Northern Ireland is the only part of the UK with no Mother & Baby Unit. Today with @WRDA_team & a coalition of over 40 charities & organisations, we present an open letter to the NI Health Minister Robin Swann to ask him to urgently prioritise setting up an MBU #MumBabyTogetherNI pic.twitter.com/IcNyHtFfB8
— Action on Postpartum Psychosis (@ActionOnPP) October 10, 2022
NI is the only part of the UK with no Mother and Baby Unit. along with @ActionOnPP and a coalition of over 40 orgs, we presented an open letter to the Health Minister Robin Swann to ask him to urgently prioritise setting up this servicehttps://t.co/MQsGkYmLNW #MumBabyTogetherNI pic.twitter.com/e56TR7v9Yd
— WRDA (@WRDA_team) October 10, 2022
How you can help
Please follow and share our campaign posts on social media using the hashtag #MumBabyTogetherNI. You can find us on Twitter, Instagram and Facebook - feel free to share any of our posts and graphics.
You could also write to your MLA encouraging them to back the campaign and sharing the details from our open letter. If you need help finding your MLA click here.
Thank you so much for your support.
Joanne from Northern Ireland experienced postpartum psychosis in 2008, 13 weeks after giving birth to Joshua, her fourth child in five years. Joanne shared her story with APP and journalist Kate Skelton:
Unfortunately the birthing experience in hospital with my third child had left me traumatised. I suffered horrendous neglect during labour and up until delivery I didn’t know if either of us would survive.
In total contrast, and in a different hospital, Joshua’s birth could not have went better, which was such a relief for me. But at seven weeks old he was very ill and contracted bronchiolitis. He wasn’t breathing very well and needed urgent care so I had to take him to the hospital where I had been previously traumatised. He was admitted straight away and we were put into an insulation ward.
I now know I was being triggered and started reliving my traumatic birth experience.
I was petrified as I didn’t feel safe there - I didn’t sleep, I was worried sick about my baby and kept hyper vigilante to make sure Joshua was okay.
Thankfully Joshua got better and we were discharged.
It wasn’t until six weeks later during a visit to my parents for their wedding anniversary celebration that I began to experience symptoms.
I started to feel really cold and suddenly my feet and legs went numb. I told my parents to call an ambulance. Soon I was completely paralysed and I was unable to speak.
My Mum thought I was having a stroke. I got blue lighted to hospital - and yes, you guessed it, back to the one where I had been traumatised. My body went in and out of paralysis, I was hallucinating and my speech was incoherent. Something was badly wrong with my brain but the professionals had no idea what was going on. Soon I was displaying symptoms of mania and psychosis and had to be sectioned and admitted to the local psychiatric ward.
I clearly remember being surrounded by at least 12-15 members of staff, physically restrained, forcibly dragged and then thrown into a van that transported me to the locked ward. I must have been sedated as I woke up on the floor of the ward hanging onto the leg of a chair and the shoe laces of a male member of staff. I was a pathetic sight.
I kept asking ‘where is my baby?’ but no one told me anything. I was terrified, helpless being separated from my family and now surrounded by all the other severely ill female patients. One young girl had obviously been self-harming and had injured herself by shaving her head and cutting herself with a razor blade. I was terrified, and totally freaked out. I had never witnessed anything like that before.
The old Victorian ward was awful - it was run down and painted in a horrible grey colour. It was more like a prison than a hospital ward with bars on all the windows and staff watching us patients from a secure room. All I heard was doors banging loudly and large bunches of keys being jangled. I knew I was locked up, going nowhere and I had no idea if or when I would ever get out.
To say the experience was traumatic is an understatement, definitely not the proper place for an unwell Mum to be who had recently given birth. General psychiatric facilities are totally inappropriate for women with postpartum psychosis as they require specialist diagnosis and treatment; plus their basic needs to be with or even see their babies are not provided for.
I wasn’t given a diagnosis of postpartum psychosis back then only of manic depression (bipolar disorder), so more information would have been helpful for me to try and make sense of what had happened. It was during my recovery and finding APP online that I first heard of postpartum psychosis and its connection to bipolar.
Northern Ireland and the whole of Ireland still have no perinatal wards or MBUs (Mother and Baby Units) which is outrageous in 2022 when so many women suffer postpartum psychosis.
I firmly believe if I could have been treated in an MBU it would have been life-changing for me; speeding up my recovery as I could have been with my baby boy instead of constantly fretting for him. It was heart breaking to be separated from Joshua when all I wanted to do was love and nurture him. I was denied the opportunity to both care for my baby in those early weeks and have the chance to further develop the crucial mother & baby bond – something I still feel very guilty about 14 years on.
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 |
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| Movies | 2 – (1 Xmas movie!) | ||
Status Map
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.
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.
Representatives from Action on Postpartum Psychosis (APP) are speaking at the Northern Ireland Maternal Mental Health Conference this week to raise awareness of postpartum psychosis and the need for specialist life-saving facilities.
Postpartum psychosis is always a medical emergency and yet, while many parts of the UK now have specialist Mother and Baby Units (MBUs) to treat women experiencing this severe mental illness, Northern Ireland, North Wales, Northern Scotland and the Republic of Ireland currently have no such facilities.
MBUs accommodate multidisciplinary teams of experts able to care for both the physical and emotional needs of new mothers. They have specialist knowledge of the issues surrounding medication management in pregnancy and the postnatal period. Presently, because women in Northern Ireland do not have access to an MBU, they would be admitted to a general psychiatric unit – resulting in separation from their baby during this critical time, with potential lifelong consequences for both mother and baby.
Dr Sally Wilson, National Research and Training Co-ordinator, APP, who is speaking at the conference on Thursday (6 May) said: “Postpartum Psychosis is a devastating mental illness that can occur completely out of the blue and it always requires emergency specialist care. However, if affected families are able to quickly access the right treatment, the prognosis is good and women recover. MBUs are a vital service for mothers experiencing severe forms of postnatal mental illness, and we believe that every woman experiencing postpartum psychosis should have access to this critical specialist support.”
Postpartum psychosis is a severe postnatal mental illness that affects 1,400 women and their families every year in the UK – from all backgrounds. Half of cases are ‘out of the blue’ with women having no history of mental illness. Symptoms include hallucinations, delusions, mania, depression, restlessness, anxiety, confusion, and erratic behaviour - which can manifest within days of childbirth. With the right treatment, women can fully recover.
Dr Jess Heron, CEO, APP said: “We’ve been campaigning for more Mother and Baby Units for many years. We hear so often from women and families about how traumatising and inappropriate general unit admission was. Our research shows that women who receive care for postpartum psychosis within an MBU feel more satisfied with the care they receive, they feel safer, more confident in staff, more confident with their baby, and are able to recover more quickly. These are essential services, not nice-to-haves, and they play a critical role in keeping families together and saving lives.”
The Northern Ireland Maternal Mental Health Conference takes place on Thursday 6 May during Maternal Mental Health Awareness Week. It aims to bring together parents, health services and the third sector to ensure that nobody is left alone to struggle with postnatal mental illness.
Both Dr Sally Wilson, National Research and Training Co-ordinator, APP and Ellie Ware, National Peer Support Co-ordinator, APP have experienced PP personally and will be presenting on behalf of the charity. Delegates can expect to hear more on what postpartum psychosis is, why it’s always a medical emergency, what care pathways for PP should look like, and why MBUs are essential. They will also discuss the importance of peer support and the myriad ways APP can support women and families, including some of the organisation’s future plans in Northern Ireland.
To book your place, and to find out more, click here
For further information on postpartum psychosis, or to access peer support, visit www.app-network.org
APP volunteer, Oorlagh Quinn, launched a petition calling for an MBU in Northern Ireland. To find out more about Oorlagh’s campaign and to sign, click here
A partnership between Cumbria Northumberland Tyne and Wear NHS Foundation Trust (CNTW) and national charity Action on Postpartum Psychosis (APP) is creating an invaluable peer support service for women experiencing severe mental illness following the birth of their child.
The Beadnell Mother and Baby Unit in Morpeth, which is run by CNTW, has contracted APP to deliver this much-needed support. APP is currently recruiting for someone who has experienced postpartum psychosis to join the team as a part time Peer Support Worker.
The Mother and Baby Unit exists to support women experiencing severe mental illness in pregnancy and following birth, with specialist support available to treat conditions such as severe postnatal depression and postpartum psychosis. The Unit also provides specialist mother and baby classes, activities such as parent and child swimming and baby massage classes, and overnight facilities for partners – with the core aim of keeping families together to support a faster recovery and better quality of life.
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.
Allison Spiers, Ward Manager at the Beadnell Mother and Baby Unit, said: “We work very closely with APP to support mothers who are experiencing postpartum psychosis, and we are really pleased to be growing that relationship by welcoming a new Peer Supporter employed by APP into our team. Not only will they offer vital one-on-one support to new mothers at a very distressing time in their lives, this Peer Supporter will also support group work with the women on our unit, and provide training to ensure our whole team continue to develop an in-depth understanding of postpartum psychosis. At CNTW we believe that service users and carers with lived experience of mental ill-health should be at the heart of everything we do, and employing Peer Support staff is an integral part of this.”
Dr Jess Heron, CEO, Action on Postpartum Psychosis, said: “We know that CNTW are already big believers in the value of peer support and lived experience engagement. The service that they provide to new mothers and families at the Mother and Baby Unit is outstanding, and, by combining this with the new peer support role women will receive a truly holistic and specialist treatment. Being able to support women and families at this critical stage, as they go through this frightening experience and begin to recover, is key to reducing the trauma, giving hope, and helping women and families feel less alone as they navigate the recovery process.
“This vital service will benefit women affected by postpartum psychosis and their families across the wider North East region. As a national charity we are campaigning to see more Mother and Baby Units like this one open up around the UK, to help save lives, promote recovery and to keep families together.”
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 CNTW on this project and I’m looking forward to starting to build our volunteer team and 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, click here
