Tag Archives: Peer support

Nicola’s story: I had to leave my dream job to look after our baby

Personal Experiences, , ,

My partner, Arina, was only in the MBU for a couple of months when she was discharged. It wasn’t that she was well enough to come home, it was because they said she wasn’t making any progress. Our baby had already been discharged, and I had taken time off work to be a full time parent. But then when Arina came home as well, I realised that there was no more support available to us and I had to leave my job as an ambulance care assistant – something I had worked so hard for.

It was December when Arina gave birth to our daughter. I hadn’t realised that there was anything wrong at first. Our baby cried a lot, and we were told she had reflux so Arina was naturally anxious and, because I’ve got three older children, I just put it down to it being early days.

Arina had struggled with mental health problems prior to giving birth, and she had been diagnosed with BPD (borderline personality disorder) which is a serious mental health issue that can cause overwhelming, distressing and changeable emotions.

When I was due to return to work after our baby daughter was born, Arina mentioned that she was feeling really anxious. It was New Year’s Day and, because I was expected in work on the 2nd, I contacted Arina’s sister who lived a couple of hours’ drive away to ask if she’d come and stay, which she did. However, she contacted me at work saying she was concerned about Arina who was really struggling and distressed, and she suggested she could take the baby for a couple of nights so that we could get Arina some help.

I reluctantly agreed, and we contacted the crisis team, who came out to see Arina but they weren’t very helpful – simply suggesting that she take a bath, have a cup of tea and get some sleep. But the problem was she couldn’t sleep. And I could see that she was incredibly vulnerable.

We were due a visit from our health visitor so I collected our daughter from Arina’s sister’s and brought her home. I was at work on the day of the visit, but they called me and said I needed to come home otherwise they would need to remove our daughter. They felt that it was unsafe to leave Arina and the baby alone as they suspected Arina had postpartum psychosis. I went straight home as they tried to find an MBU to get the care Arina clearly needed. However, it was a real struggle because the crisis team maintained that she didn’t need help.

Eventually, we managed to get Arina in to see the GP – she was incredibly anxious by this point. The GP agreed that Arina needed help and, the following day, we finally got the call saying that she could be admitted to the MBU.

Because of Covid, I literally had to drop Arina and my daughter at the MBU door, which was heartbreaking. Leaving your partner and daughter, not knowing how they might settle in or where they were going to sleep, was really difficult. I had also developed a really strong bond with our baby so it was difficult being separated from her as well having previously spent 24 hours a day with her.

The MBU was about a 45 minute drive away from our home as well, so I was having to work full time and travel every day for the one hour a day visit, and it was emotionally and physically draining.

After about a month, I was shocked when the MBU suggested our daughter should come home with me. Arina had mentioned that the MBU staff were still carrying out most of our daughter’s care, and they suggested that Arina needed some time on her own. I was worried because I needed to work to bring the money in, and also because I thought Arina should have the opportunity to bond with our daughter.

I arranged time off work, thinking it was just for a few days but, as time went on, nothing was mentioned about any plans for our daughter to return to the MBU. I was taking her back and forth every day to see Arina and then looking after her the rest of the time on my own.

I had been working with the Ambulance Trust and had only just started the job in the October, so I was devastated at having to take so much time off. Eventually, I was told by the MBU that Arina needed to be referred to an adult psychiatric ward for further treatment but that they couldn’t find a bed, so she would need to come home. We were told at that point that we would get some childcare support to enable me to go back to work part time but nothing materialised.

So, after two months in the MBU, Arina was also home, and I left my job and had to claim benefits to keep us going. Arina applied for PIP (Personal Independence Payment) but that was eight months ago and we still haven’t got it so we are relying on basic benefits – other than £5 a week for baby class. We just feel as though we have been left completely on our own.

It’s quite difficult, as a same sex couple, to access support because everything for partners seemed to be targeted at ‘dads’ or ‘fathers’. I couldn’t see anything that felt it might include me. However, during a conversation with an old friend who I discovered had herself been in an MBU, she told me that she’d seen a story on the APP website about a same sex couple so I had a look straight away and reached out to Ellie from the peer support team.

Since meeting Ellie, I’ve been put in touch with another female couple and we’ve been in contact regularly, texting back and forth, and it’s been a lifeline. It’s just so good to have someone you can actually relate to.

There are still challenges we are facing because of our situation though. For example, because I’m not on the birth certificate I have to adopt our daughter, so being classed as a full time parent I currently have the responsibility but not the legal rights, so I can’t even open a bank account for her or register her with a nursery. This is really tough because Arina is still struggling with her mental health as well. And, on the flip side, the social workers have told us that, once I adopt my daughter, they will no longer be able to support us at all – so it feels like a lose-lose situation.

The thing that keeps me going, however, is reading the stories of others, and speaking to Ellie and the couple that APP put me in touch with. While everyone’s experience is different and unique, there is always something you can relate to. It makes such a difference knowing that you’re not alone.

 

Mental health is such a taboo subject in Africa – so finding peer support meant the world to me

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Anon

Mental health is still such a taboo subject in Africa. It’s so hush hush, and nobody likes to speak about it because people are so fearful of mental health problems. If you do talk about it, people might not believe you, they might think you’re faking it or, in some cases, they might even think you’re possessed.

I was born in the UK but my parents are from Uganda, East Africa, and my husband was born in West Africa. So when I became unwell with postpartum psychosis (PP) some of our wider family really didn’t understand – which is why I see peer support as invaluable.

I ended up being admitted to an MBU after having both of my children. The first time was because I had PP, and the second time it was because I had severe depression.

My first child was born in December 2014. I started to get symptoms of PP not long after the birth. I remember being in my living room and hearing voices, and everything around me seemed to be heightened. We had a train track outside the house and every time a train went by it felt so loud it was as though the train was actually going through the house.

My husband was worried that I might have the baby blues, and that when I was hallucinating the sound of my baby crying he thought it might be like hearing a phantom cry. But as my symptoms progressed, the hallucinations became terrifying.

I could hear voices telling me to kill my baby and I was convinced the devil was speaking to me, as though I was being taken over by some kind of evil spirit. I told my husband, and we decided to go and stay with my in laws because I was so scared staying on my own in the house. I was becoming really manic and I hadn’t really slept properly since the birth.

Other symptoms included being on high alert, talking really quickly and loudly, and over sharing.

As the days progressed I remember there was one night that I became really aggressive. While my daughter was sleeping soundly upstairs I was downstairs and not acting like myself at all. I picked up the dining table – which for someone who had just had a caesarean was no mean feat – and I tried to throw it across the room. My husband and his cousin, who was visiting at the time, tried to calm me down. Then my mother in law called the ambulance. The police arrived with them too and accompanied me in the ambulance.

Once we arrived at the hospital I was quickly assessed by a psychiatrist and admitted to a general psychiatric ward. Of course this meant I was being separated from my daughter which really upset me. As a new mum I was bleeding postpartum, and my breasts were leaking, and that all added to the anxiety and fear of being without my baby. I also developed a blood infection which in turn heightened my mental health symptoms even further. Plus, I wasn’t sleeping at all, so I was put on sedatives in addition to the anti-psychotics they were giving me.

I was there about a week but, in the background, my husband and father in law had been researching MBUs and were fighting to get me a place in one where I could be with my baby girl.

During that time, the director of the MBU at Bethlem Hospital came to visit me in person. She was really reassuring, saying that they did have a bed, but, because of how I presented, full of angst and distress, she warned me that they might not be able to manage me because of the other mums and babies in there.

Deep down, I knew that one of the reasons behind my continued angst was being separated from my baby, so I knew if I could be reunited with her I would feel less distressed. So I promised that I would be OK on the MBU and, as suspected, things got much better after I was transferred…

MBU admission

It was the following day that I was transferred, and it was honestly like a lightbulb moment in my recovery. There were still a few symptoms of the psychosis, but things weren’t as intense as they had been, although I was still very paranoid and wanting to isolate and cocoon myself away from everyone.

Shortly after admission, I was diagnosed with bipolar disorder. The psychiatric team noticed that I was more myself, but that my mood swings were really up and down, and my husband had noticed this as well. On reflection, my husband could now see that there were times before we had our daughter that my moods had become really heightened, but he just put it down to hormones.

My recovery

After being discharged, I spent about a year under the care of the mental health home treatment team and continued having appointments at Bethlem too.

I also started taking my daughter to playgroup from the age of three months. People wondered why I was taking her so young, but I wanted her to be around people, and I needed to interact with other mums too. I’m glad I did it, because today my daughter is so outgoing and happy.

My MBU doctor also told me to look up APP online and honestly, at first, I was sceptical. I thought what use is it going to do speaking to a stranger about my experience. But when I did it, I was like wow, this thing I went through is actually a real illness, and I’m not the only one. I’m not alone in this. It took me a while to attend an APP café group meeting but when I did and I was able to listen to many other stories it meant so much. I also got to meet APP’s ambassador, Laura Dockrill, who was so inspiring.

I love the peer support network so much that I recently did some training to become a peer supporter myself. I want to be able to give hope and comfort to other women like the APP support network gave to me.

The need for awareness

Today, looking back, and having no prior awareness of PP before my diagnosis, I think it’s incredibly important that midwives are made aware of it and of the symptoms, so they can pass that onto families who are expecting a child. They often talk about PND but PP is so rarely mentioned. I honestly think they should be giving out information at midwife appointments so you feel more prepared and able to spot the signs.

Because nobody in our family had ever heard of it, it was a huge shock and a really confusing time. I believe we could have reached out for help much earlier if we had known about PP.

I have learned, however, that experiencing PP does not make you a bad parent – it is an illness. We need to ensure we give ourselves time for self care and stop putting too much pressure on ourselves to be perfect parents. There’s honestly no such thing.

So if anyone is going through what I did, don’t feel afraid to speak out and ask for help. With PP, the longer you delay getting help, the worse it gets. But once you get that help, you can and will recover.

 

Stock Photos by Lawrence Crayton on Unsplash and charlesdeluvio on Unsplash and Elsa Lilja on Unsplash

 

 

 

 

 

 

 

Listen to APP’s festive playlist - and find out why we chose these popular songs

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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 →

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

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We’d been living in Spain for over ten years when I fell pregnant. My husband, Jamie, worked away a lot on an oil rig but we had a good network, had planned for Jamie to be home for a couple of months around the birth and the pregnancy was really straightforward. I felt lucky.

Our son was born in the September, and, when Jamie returned to work in the December, I made a return trip home to Ireland to visit family with our new baby.

Ruth with her toddler and her husband, Jamie, on a boat

While I was in Belfast I started struggling with bad joint pain. I’d had arthritis as a young child but hadn’t had any problems for years so it was a bit of a shock. I ended up in A&E and it made breastfeeding and holding my son really uncomfortable too. I was in so much agony.

When I got back home I got some treatment for the arthritis and everything seemed to settle back down. My baby was sleeping well, Jamie was working in Norway, everything felt like it was going to be fine.

Then, by the middle of February, I suddenly stopped sleeping and began panicking about everything going wrong – thinking that Jamie, might lose his job, worrying that there was something wrong with our son. I made the rash decision to move our son into his own room, and I would spend whole nights just staring at the baby monitor and listening to the buzz of it.

My mum came to stay and she remembers that I was just pacing the flat saying things like our lives are falling apart; there’s something wrong with the baby; he’s not well; he’ll be taken off us and I’ll be put in jail.

I went to the health centre and got an emergency appt with the nurse who prescribed diazepam to calm me down. It was around the time of lockdown so when I needed to go back it was a different nurse that I saw. The second time I was prescribed antidepressants, too.

Jamie was away at the time and I was continually phoning my best friend and cousin because I needed someone to listen. I was convinced there was something wrong with the baby, and I began struggling with breastfeeding and then bottle feeding – getting myself into this vicious cycle of feeling like I couldn’t feed my baby at all.

My friend was concerned and she made an appointment with a psychologist at the nearby clinic. I remember taking my notebook with me because I was writing down pages and pages of numbers and dates relating to my baby and his feeding patterns and routines.

Back at home, I would just lay down on the floor and cry and I was having regular panic attacks. But outside of the home, I was doing all of the right things – trying to feed him, dressing him. It probably all seemed fairly normal on the outside but in the background I was panicking, not sleeping, not eating and obsessing over my baby.

The next thing I remember is waking up in hospital…

Apparently, one morning, around 4 or 5am, I’d left the flat, left the door open, with my baby asleep and my mum sleeping on the sofa. I had no shoes on and I got into my car. I drove along the motorway and parked my car on the hard shoulder and got out. What happened after that was devastating. The only thing I can remember is someone saying quick get her a blanket. Then I remember waking up in a hospital.

I’d walked out in front of a lorry. Luckily, I survived. I had some very deep cuts, some bad injuries and I needed stitches in my head. I had some deep wounds on my foot and scars all over my back.

It does cross my mind from time to time about how the driver is today. It must have been such a huge trauma for him and I truly hope he has he recovered from it.

Left to right is Ruth’s husband Jamie, Ruth and their toddler out on a walk in the countryside I was quickly transferred to the psych ward where I was sat outside in a wheel chair, covered in blood. We were waiting hours and hours for the psych team to assess me. They eventually decided to admit me and I was taken into a shared room where my family had to leave me due to lockdown rules.

My family were looking after my son and Jamie, who was working in Mexico at the time, flew back home. Meanwhile I was in the psych ward, unable to shower properly because I couldn’t get my injuries wet, feeling as though I was in a prison, with no furnishings or comfortable surroundings and unbelievably tall walls with barbed wire so nobody could escape.

I don’t feel I received particularly good treatment while I was there. And I remember another girl who was in there suggesting I start to write things down to keep track of the doctors I was speaking to and the meds I was put on. When my sister and Jamie came in to see me I saw a psychiatrist who granted me permission to go home under my husband’s care.

We then went into full lockdown and my husband had to try to look after both me and our son at the same time. I think he has so much strength to have been able to put up with what I now know was absolutely shocking and both terrifying behaviour.

The team of psychiatrists would come to our house twice a week and I had some zoom calls with my psychologist during lockdown. They were trying to find the right combination of meds for me but apparently they weren’t working and they suggested I go back to the psych ward without my baby – and of course no visitors were allowed because of lockdown, so I really didn’t want to go back there.

One of my friends in the UK who worked in health contacted Jamie because she had found my messages really concerning. She had heard about Mother and Baby Units in the UK and Jamie, who’s Scottish, got in touch with APP to find out more and then made contact with an MBU in Glasgow. They said I could be admitted.

Jamie had to drive us all from Spain to Calais and then to a friend’s in Cumbria before reaching Stirling, where he immediately got me an emergency doctor’s appointment. By that point my paranoia and symptoms were so bad the doctor called an ambulance and I was immediately admitted to the MBU with my baby.

Ruth, her baby and her husband Jamie smiling at the camera

Because I’d come from Spain I had to have ten days in isolation, so Jamie went back to work to bring in some money because nobody was allowed to visit me anyway.

I ended up spending five months in the MBU. I was admitted in the May, and discharged in the October.

I remember in the MBU there were quite big rooms and we had our own bathrooms, a nice play area and garden with picnic benches and windmills. They organised things like crafts, cookery and pram walks which I enjoyed, and I remember me and one of the other girls used to make apple crumbles.

Unfortunately, because I still didn’t seem to be improving, I had to have ECT. I was so nervous and I appealed it but Jamie gave permission because he thought it was my only chance of getting better.

The doctor I saw before each ECT session was so lovely, I remember he always reassured me. I never got to know his name and I’ve always wanted to thank him for his kindness. I had 18 ECT treatments in total. The only thing I complained about was having a sore head, but apparently that’s quite common.

When my son was due to turn one, however, the MBU had to plan my discharge, because they were only funded to look after mums with babies less than a year old. I started going to my in-laws’ house on weekends and eventually was recovered enough to have a full discharge. However, I caught Covid, so we had to isolate in an Air BnB for a while which was really tough. Eventually, we made it back to Spain in a far better position than we had been when we left.

I’m still on medication today, but just a low dose of antidepressants. I’ve stopped the antipsychotics and things are slowly getting back to some kind of normality.

My son started going to nursery and he’s picking up both Spanish and English, which makes me so proud. And I went back to work in the September of 2021, so I had time to get back into normal life, start exercising again and focusing on me.

Looking back, it was a very scary and intense period, especially with it all happening during lockdown. But now Jamie and I are out the other side, we are both really keen to raise awareness, because nobody in my family had even heard of PP before I was diagnosed.

I’ve trained to be a peer supporter with APP, so I can share my experience and hope with other families who are going through what we did. I know that when Jamie first spoke with APP’s peer support lead, Ellie, when I was really ill, it made such a difference so I hope that we can now pass on that support. Just knowing that someone else has been where you are and come out the other side makes all the difference.

 

APP to speak at international perinatal mental health conference 

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Members of the Action on Postpartum Psychosis (APP) team, including staff, trustees and ambassadors, will be speaking to a global audience of expert researchers later this month as part of the International Marcé Society for Perinatal Mental Health Conference. 

The conference takes place between Monday 19th and Friday 23rd September and will welcome leading experts in perinatal mental health from institutions and organisations around the world. The Society is led by a board of experts including APP’s very own trustee, Professor Ian Jones, who also serves as the conference’s co-chair.

Having the opportunity to speak at such an event will enable us to share best practice and stimulate conversation specifically around postpartum psychosis (PP), raising awareness of the illness, as well as our campaign asks, amongst a much wider pool of academics and health professionals. The more researchers and professionals we get talking about postpartum psychosis, the more collective power we have to build knowledge, effect change, challenge stigma and improve services for women and families affected.

The two sessions APP will be involved with or leading are:

What do women and families need from perinatal mental health services? 

This session will be chaired by Dr Clare Dolman (APP trustee and Vice Chair for the Maternal Mental Health Alliance) and feature our brilliant ambassador Laura Dockrill, who will be sharing her personal experience of PP, as well as our National NHS Contracts Coordinator, Hannah Bissett, who will be speaking about the value of peer support in perinatal services. They will be joined by Dr Henry Fay – a former GP with experience of PP as a partner, and current trustee with the Maternal Mental Health Alliance.

APP ambassador Laura Dockrill will be sharing her lived experience story

Postpartum psychosis: strategies and collaborations to increase knowledge, address stigma and improve care globally

This session will be chaired by our CEO Dr Jess Heron and will feature discussion from Hannah Bissett as well as Dr Sally Wilson, APP’s National Training and Research Coordinator. The APP team will present evaluations of some of APP’s projects including: APP’s health professional training in PP; peer support services; and the ongoing campaign for Mother & Baby Units. The discussion will focus on exploring the ingredients for lasting impact, lessons learned, and how this learning might be used to influence care for women and families affected by PP globally.

APP’s CEO Dr Jess Heron will be chairing a session

About the International Marcé Society for Perinatal Mental Health

The International Marcé Society for Perinatal Mental Health was formed at an international conference in 1980. The purpose of that conference was to bring together different strands of research in puerperal mental disorders. It was recognised that there needed to be a forum to discuss puerperal mental illness in its broadest sense, and as such the Society was formed. The Society was named after Louis Victor Marcé, a French psychiatrist who wrote the first treatise entirely devoted to puerperal mental illness, published in 1858.

Other notable sessions at this year’s conference include Postpartum Psychosis: Cross-cultural conceptualisation in Malawi, India and the UK; Advances in the Pharmacology of Mood Disorders during Pregnancy; Offspring of parents with Psychosis: Pre-postnatal indicators of risk and resilience; Consensus and Controversies in the classification of Postpartum Psychosis in DSM-V; as well as a session focused on fathers’ mental health: Fathers’ Perinatal Experiences, Mental Health and Impact on Family Health.

One of the key aims of this year’s conference is to highlight the UK’s best practice in lived experience involvement, and encourage this trend internationally. The conference events will take place both in London and virtually.

Find out more about the conference here

The conference itself is no longer taking delegate bookings, however, we’ll be sharing some of the key highlights and things we’ve learned, so watch this space for more info.

To join the APP network and sign up to our newsletter click here

If you’re attending the conference, please do join in the discussion on social media by using the hashtag #Marce22 and tagging us @ActiononPP

 

Jenny and family's fundraising for APP 10 years on

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Jenny Stevenson and a team of family members spent a month clocking up some ‘Miles for Mums and Babies’ 10 years after Jenny experienced postpartum psychosis (PP).

Jenny experienced PP after the birth of her first son, Toby, in 2012. Admission to the Brockington Mother and Baby Unit (MBU) in Stafford, prompt specialist treatment, and good support from family and friends all aided a relatively quick recovery. Peer support, via APP’s online forum and reading personal experiences and stories on APP’s website, subsequently played a huge role in helping Jenny to come to terms with what had happened. Jenny attended an APP volunteer event the following year and trained as a peer support volunteer at the beginning of 2015. She is now working as one of APP’s National Peer Support Coordinators.

Jenny wanted to mark the 10 year milestone by raising some money and awareness for APP. She decided to take on a ‘Miles for Mums and Babies’ fundraising challenge between the dates she was an inpatient on the MBU (exactly one month) in 2012. The initial target was to jog and walk 37 miles during the month, the distance from her home to the MBU. With help from family members, the hope was to double this distance and cover the return journey.

Over the course of the month, Jenny’s team (Jenny, Toby, Jenny’s mum, sister and brother-in-law) jogged, walked and swum 375 miles between them. Each mile completed as part of this challenge reflects the journeys mums, babies, partners and families travel to be together, whilst mums receive care in Mother and Baby Units. 375 miles reflects five return journeys from Jenny’s home to the MBU in Stafford, a journey travelled by her husband every day during her stay.

The team raised £1275 for APP and by asking people to donate via the Big Give, which match-funded donations during the month of July, APP received double this amount – a total of over £2500.

JennJenny pictured with her mum, son, sister and brother in law, all wearing purple APP t shirtsy says, “I’m delighted to have raised so much money for APP and that the money raised via the Big Give will be used to help grow the peer support service. Peer support is vital to so many women and families affected by postpartum psychosis – I see first-hand the positive difference it makes.”

Jenny is pictured here with her mum Sharon, son Toby, sister Juliet and brother in law Stephen.

 

 

Anneka’s story - The mother and baby unit was incredible, I owe my life to them

Personal Experiences, ,

In March 2021 I gave birth to a perfect little boy called Ralph and my family was complete.

I had a very easy pregnancy and loved every minute of it, I couldn’t wait to be a Mum.  After a short stay in hospital because Ralph had an infection, it was time to come home. Looking back I wasn’t right from the moment I got home but we just thought it was an extended set of the ‘baby blues’ - as did the midwife who came to see me.

Shortly after being home I was terrified someone was going to take my baby from me, that the house had to be tidy and if it wasn’t something really bad was going to happen.
I couldn’t remember anything and had to carry a notepad with me at all times to write down everything I had to do or had already done, from Ralph’s feeds to nappy changes.

The final straw for my husband and family to intervene was when I started to open presents and cards and couldn’t remember who anybody was.

My husband, Laurence, decided I needed medical attention ASAP but there was no chance I was going back into hospital and leaving Ralph. He told me I had a water infection and just needed to go in for some antibiotics so I agreed. Getting me into the hospital was very difficult as, by this time, I couldn’t remember anything about Covid and didn’t understand why I needed to wear a mask. I was taken straight to A&E where I was asked a series of questions which I couldn’t answer, including which day it was and who the prime minister was. By this point I had started to hallucinate and thought that every doctor was against me. The police were nearby with another patient and seeing them made me think that they were going to section me.

I ended up staying in hospital for a few days having all sorts of tests to rule out anything medically wrong with me before the psychiatric team would get involved. By this point my husband had found out about postpartum psychosis and that the best place for me would be a mother and baby unit.

By now I was very unwell and believed that I, and the midwife looking after me, had been arrested for committing a terrorist attack on the hospital. Every nurse or doctor that came to see me I thought was a member of my family or friends. Laurence was bringing in Ralph everyday so we could continue to bond, but by this point I thought Ralph had died so this became quite stressful. I believed my room was under surveillance and armed police were outside my room. When my Mum came to see me I thought our meeting was being broadcast on national TV. It all seemed so real.

The day before my 30th birthday I was transferred by ambulance to a mother and baby unit.

The first few days in the mother and baby unit I didn’t speak, I spent my 30th birthday mainly in my room believing I was still under arrest and my room was a prison cell. By this point the radio had started speaking to me and I couldn’t watch the TV because I believed that it was still covering the terrorist attack I’d committed. The staff were incredibly patient and understanding.

I was extremely lucky to get a place at a mother and baby unit close to home and my husband visited us every day. I remember so clearly asking him when we first arrived “How long will I be here?” to which he replied “it normally takes 6-8 weeks for people to recover.”
3 months, a relapse and being put under section later we finally returned home.

The mother and baby unit was incredible, I owe my life to them.

Without them who knows what would have happened. Every member of staff helped myself and Ralph bond through my recovery and supported my whole family. I also made some friends for life in the other mums that I speak to most days now. We were thrown together and have all been through such an experience together, I will be forever grateful for them.

I remain on medication for my diagnoses and am currently being supported by the wonderful Perinatal Mental Health team and the Early Intervention for Psychosis team who I see every other week.

Postpartum psychosis is scary and can affect anyone, including me who had no mental health problems in the past. My advice for anyone experiencing it now is, you will get better, take the support and treatment given to you. It’s helped me to put life into perspective and know what’s important. I’m not angry it happened to me, it’s part of who I am and now I want to give back to all the people who helped me recover.

 

 

 

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

Personal Experiences,

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

So far so normal.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Simon completes 852 virtual miles raising awareness of support needed for partners during postpartum psychosis

fundraising, News, ,

We are absolutely thrilled that today, our brilliant partner peer support coordinator, Simon O’ Mara, completed his mammoth 852 mile journey raising awareness of postpartum psychosis, its impact on partners and the need for more Mother and Baby Units (MBUs) in the UK.

Marking the launch of a new support project for the partners of women who develop postpartum psychosis, Simon challenged himself to complete a virtual tour of all UK MBUs to highlight their importance in caring for the whole family unit at this critical time.

Simon, whose wife was diagnosed with postpartum psychosis 15 years ago, said: “As a partner, when all hell’s breaking loose and your wife and child have to go to an MBU, even though it’s the right thing, you feel like you’re losing them. But for some people, due to lack of services in their local areas, they have the added difficulty of travelling a really long way to see their loved ones.

“I initially planned to do the journey out on the road, but due to lockdown restrictions in the early stages of planning, I changed my plans to complete the cycle ride on my smart trainer.

“Doing a smart cycle ride of 852 miles felt like it might actually be a little easier – you don’t have to contend with the weather or road traffic. But it proved really hard at times, especially after a long day’s work when all you really want to do is relax and put your feet up with your family.

“Using the Zwift software and cycling virtually with others from all around the world was a real motivating factor though, as was meeting with some of the MBUs along the journey via Microfost Teams. It’s really kept me going and I’m delighted to have raised £800 for Action on Postpartum Psychosis.”

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.”

Dr Jess Heron, Chief Executive, Action on Postpartum Psychosis, 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 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 have 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 raising awareness of the support needs of partners and we’ve all been cheering him on from the ‘virtual’ sidelines! We are all incredibly proud of what he has achieved.”

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

To find out more about Simon’s story, or to add to his fundraising efforts, visit his JustGiving Page 

To support the petition for an MBU in North Wales click here

 

APP fundraiser story: How cycling boosts my mental wellbeing

fundraising, Personal Experiences,

Our Partner Peer Support Co-ordinator,  Simon O’Mara, has been incredibly busy raising awareness of postpartum psychosis and raising lots of money for APP by cycling 851 virtual miles.

Here he talks about why cycling is so good for his mental health.

When I get on my mountain bike, riding through narrow tracks at speed, tree branches within an inch of each handlebar, I can’t afford to think of anything else. It’s impossible, in fact. Mountain biking for me, requires technical focus, care and attention, and to let my mind wander elsewhere would be dangerous.

It’s the same with motorcycling, another passion of mine. It’s so good for the soul because when you’re out on the road, you can’t focus on anything else. You need to be acutely aware of the conditions of the road, the weather, other traffic – and of course every move you’re making; it’s critical to keep you safe.

But this need for focus is also why it’s so good for my mental health. The escapism and mindfulness that cycling affords me is invaluable. The fact that it’s good for my physical fitness is merely a by-product for me because, first and foremost, I enjoy it – and that’s why it has such a positive impact on my life and my health – both mentally and physically.

Fifteen years ago, after the birth of our son, my wife was diagnosed with postpartum psychosis (PP) – a severe and debilitating postnatal mental illness. It was a frightening time for the whole family not least because, at the time, we had no real understanding as to what PP was.

It all started in the first couple of weeks after my wife gave birth, I had noticed subtle changes in her mood, but, as a first-time father, I didn’t really know what was ‘usual’ or ‘unusual’ after birth. A few weeks later and these changes took a sudden and dramatic turn for the worse, things became very scary, very quickly.

Over the next few days, she woke in the early hours ‘ghost like’, her mood had plummeted, she was anxious, confused, pacing around the house, having delusions and hallucinations, ultimately it all ended in a 999 call.  I found myself in complete turmoil and throughout our journey with PP, had times where I went through every emotion possible - from being terrified, to feeling isolated, worried about the future and even feeling guilt-ridden for decisions I’d had to take; with little sleep, the pressure I felt was enormous, however, the support we received from family, friends and eventually specialist health professionals treating my wife was vital.

Postpartum psychosis as a father or partner, feels very much like a journey with a number of possible stages, from the initial crisis, potential admission to hospital, returning home and recovery - all of which bring different feelings and concerns to the fore. Just holding it together, having to keep strong for your wife or family members can sometimes see you not considering or letting on how worried you are, which in turn can lead to fathers suffering with their own mental ill-health.

It goes without saying that, whilst in the midst of the illness, mountain biking wasn’t really an option. I did give it a go while my wife was in hospital, but I couldn’t concentrate and was too acutely aware of everything that was going on at that time, so I wasn’t able to give cycling all my attention and I wasn’t able to get the enjoyment and mental health benefits from it.

When my wife came home, as her partner, I still had real worries about whether she might relapse and how we would cope if she did. I wondered if things might be drastically different for us and how life might be in the future. So it wasn’t until she was firmly into her recovery journey that I was able to stop and think about how I was coping, how I was feeling. It was during this period of my wife’s recovery that mountain biking became a significant part of my own recovery from the stress and trauma that PP had on our family.

But it isn’t even just the time that I’m on my bike when I notice a change in how I’m feeling. Even when I’m putting the bike back on the car, ready to head home, I feel refreshed, ready to deal with anything that life throws at me. It not only gives me those moments of mindfulness, it re-sets everything and helps build longer-term resilience.

This is why I was so keen to combine my learnings from our family’s experience with my love of cycling to raise awareness and funds, and to campaign for specialist services for postpartum psychosis. Since October, I’ve been cycling a virtual route of 851 miles to demonstrate the gaps in service provision around the UK and the miles many families have to travel to access this care.

 

I’m cycling on behalf of APP. If you’d like to sponsor me, visit my JustGiving page for more information.