Tag Archives: Peer support

16 February 2022

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

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

So far so normal.

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

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

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

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

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

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

From that point on things became blurry. My 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.

26 November 2021

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

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

 

16 November 2021

Simon's story: "Cycling boosts my mental wellbeing".

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.

22 July 2021

A day in the life of…a Peer Support Facilitator

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

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

09:00

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

09:30

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

11:00

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

12:30

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

13:30

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

14:30

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

15:30

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

16:30

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

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

 

 

 

 

8 June 2021

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why MBUs are so important

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

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

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

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

How I found recovery

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

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

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

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

 

26 April 2021

Peer support service launches in Morpeth for mothers experiencing postpartum psychosis

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