Tag Archives: MBU

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

APPs Partner Peer Support Coordinator, Simon O’Mara, is embarking on a mammoth 851 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 update 02/10/21: Simon completed 41 miles, which is the equivalent from West of Scotland MBU (Glasgow) to St. John’s, Livingtston.

Day 2 update 03/10/21: 45.2 miles ridden, total mileage over the weekend now at 85.2 miles. 

Day 3 update 05/10/21: Simon is working in the week, so cycling in the evening. 24 miles done this evening.

Day 4 update 06/10/21: Simon cycled 26 miles in the evening, is 96 miles into stage 2, with a total of 136 miles completed to date.

Day 5 update 07/10/21: 26.5 miles completed with a 1,098ft climb.

Day 6 update 08/10/21; Sees Simon finish stage 2, a total of 179 miles into the journey and Beadnell MBU.

Day 7 update 09/10/21: Simon has now completed a total of 209 miles, and has a virtual meet with Beadnell MBU in the morning.

Day 8 update 10/10/21: 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 update 11/10/21: 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 update 12/10/21: A 24 mile ride, sees Simon only 12 miles from the end of stage 3 and shortly getting to Parkside Lodge MBU. 

Day 11 update 12/10/21: 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 update 13/10/21: 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 update 15/10/21: 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. Catching up with Kieran at Dad Matters Friday afternoon for a live Instagram.

Day 14 16/10/21: Stage 4 complete and an extra mile started on stage 5. Just about to go and have a small ride for today

Day 15 17/10/21: 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 18/10/21: 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 19/10/21: 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.

 

 

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

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

  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

 

 

 

 

APP urges HSC Northern Ireland to invest in ‘critical’ Mother and Baby Unit to save lives

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

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