Tag Archives: postpartum psychosis

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

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.

 

 

 

Nia’s story: I had to travel many miles from home to access an MBU

Living with bipolar meant that we had lots to consider when we were planning a family. We had to get the perinatal mental healthcare team involved from the very start to make sure we had a plan if anything were to go wrong. I knew that, because of my bipolar diagnosis, there was a chance that giving birth could trigger my symptoms, so there was talk of me being admitted to a Mother and Baby Unit (MBU) should I need that extra support.

I didn’t really know anything about MBUs at that point, and I was feeling really well so I felt confident that all would be OK. However, towards the end of my pregnancy more problems arose – I had preeclampsia, high blood pressure and gestational diabetes. It meant that I was under additional pressure, but my mental health still seemed to be on an even keel.

However, I was then told I had to have an elective caesarean and, because I’m on medication for my bipolar, I had to come off it 24 hours before the surgery. This was to allow the medicine to be removed from my body before giving birth.

I had the caesarean as planned on the 17th May 2019. Unfortunately, they had problems getting the epidural into my back so I had to be sedated. When I came round, they initially gave my baby to me but then immediately took him away again because he had a temperature and wasn’t feeding. He was taken into special care.

In the personalised care plan that the perinatal mental health team had put together at the start of the pregnancy, it stated that I needed to have my own, quiet room as lack of sleep can be a big trigger for bipolar symptoms. Unfortunately, somebody else needed the room so I was moved to a ward with crying babies. At this point, my baby boy was still in another part of the hospital.

Eventually, we were given a special care room together because, in addition to my bipolar risks, my little boy had to be tube fed. But by this point I was already becoming unwell. My mind was racing and I wasn’t sleeping.

The next thing I remember is waking up in the MBU in Manchester – many miles from our family home in North Wales.

Prior to being moved to the MBU, I was in a state of psychosis and my memories of this time are a complete blur. I think my mind has just shut out memories of the trauma, but it was a different matter for my husband, who was in the throes of it all, desperately trying to get me the right help. It was really difficult for him because the midwife was off, as was the care coordinator and the psychiatrist! I was initially transferred to a PICU (Psychiatric Intensive Care Unit) in North Wales but then I was moved to the MBU in Manchester as there was nothing closer to home.

I was grateful to have access to an MBU, as it meant that I was able to stay with my baby. But the fact that we had to travel two hours from home made life really difficult. Each day, my husband was travelling for four hours between the hospital and our home, and doing a full time job in between all the travel. The stress he was under was immense.

Regardless, Tommy continued to visit every day and that’s something I am so grateful for because, when you’re in hospital so far from home, it can feel really isolating and lonely. Two hours is a long time when you’re in mental health crisis. I did make some friends in the MBU, but when you’re so far from home it makes everything feel ten times harder.

I had to have ECT (Electro Convulsive Therapy) whilst I was at the MBU, but this was a treatment that had worked for me in the past and, combined with the medication, I started to slowly recover.

Eventually, I was allowed overnight stays at home, then visits for a few days at a time and then, by around the end of July, I was finally discharged. Getting home was such a good feeling, and I really started to feel well again.

However, unless something changes, I don’t think we’d consider another baby as the experience was far too stressful and traumatic for the family.

There’s a national shortage of MBUs overall but, where I live in North Wales, we literally don’t have one at all. I remember the doctor telling me that, if we decided to have another baby, I would probably need to give birth in England so that I had quick access to specialist care if I became mentally unwell again. Because I’m Welsh, I really wouldn’t want to feel as thought I was forced to have my baby in England.

I’m also not confident that we’d be able to get in to the Manchester MBU again. There is such a shortage of MBU beds, so, if we couldn’t get in, it could mean travelling even further away – and the strain on Tommy, and myself and the baby, would be unbearable.

I know how lucky we are to have our baby boy but we’d love for him to be able to have a baby brother or sister. For women like me living in North Wales who are at risk of serious postnatal mental illness, there needs to be specialist care closer to home. I know I definitely communicate better in Welsh, especially when I am unwell, so having support in the Welsh language is also really important.

This is why I’m campaigning for an MBU for North Wales – so other new mums and their families can access support in their first language and to stop so many having to travel so far from home to get the essential care they need.

 

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. So 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 believed I was there to deliver a PowerPoint presentation to the doctors! 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.

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 I continue to take to this day.

However, 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.

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 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 APPs network and I want to give something back and to let others know that you can recover from PP.

 

A day in the life of…a fundraising assistant

Kelly Ashcroft has worked with APP as Office Administrator and Fundraising Assistant since September 2020, and prior to that she worked as a peer support volunteer. Kelly, who had no previous mental health problems, experienced PP in 2006, three months after the birth of her son. She had her second child in 2011 and no recurrence of PP, although she still lives with anxiety and depression during times of increased stress.

Here, Kelly shares a typical ‘day in the life’ of her role with APP.

9.30am

I usually start work around 9.30am after the school drop off. The main part of my role is helping people who want to fundraise for APP, whether this is an individual fundraiser or a group of people fundraising as a team. I provide help with setting up a fundraising page on platforms such as JustGiving, GoFundMe and Facebook, and I post out fundraising materials including APP branded running vests, t-shirts, loose change collectors and balloons.

As a charity, we sometimes purchase places in events such as the Royal Parks Half Marathon, so I also help to register our runners' details on the charity consoles.

11.00am

I often help to promote our fundraiser’s stories and campaigns by sharing them on the APP website, through our social media channels and our newsletter. So sometimes the latter part of the morning is spent writing up an inspirational story which is always lovely to do.

I also encourage our fundraisers to join the APP Events and Fundraising Teamspace, and the Running, Walking and Cycling groups on Facebook so that everyone feels supported and part of a community. I might also be sending out thank you emails, certificates and medals to anyone who has recently completed a fundraiser for us.

12.30pm

I usually eat my lunch in the  garden so I can get some fresh air, and read a magazine to help me switch off. After lunch on a Tuesday we always have a team meeting, where each member of the APP team updates on the work they have been doing and what they have coming up. During this meeting we can ask for guidance and support from our colleagues/managers.

1.30pm

I also like to check in on any current fundraising challenges to see how fundraisers are doing and cheer them on. We recently had a fundraiser (APP’s very own Partner Coordinator Simon O'Mara!) complete an epic 851 virtual mile cycle ride for APP, so I always checked in on his daily progress, updated the news article on the APP website and offered him words of encouragement.

We’ve been so lucky to have lots of amazing fundraisers getting involved recently. Amy Coutts-Britton took part in the Oswestry 10k and we had had four runners in the Royal Parks Half Marathon; Nicola Ball, Jeni Dibley-Rouse, Anneka Harry and Sally Hogg. We also had Steve Bushell run the Yorkshire Marathon, Abi France ran the Liverpool Rock n Roll Marathon and we had several runners in the London Marathon; Jason Sales and Andy Rolfe ran in the live event, and Dave Orridge, Sophie Raynor, Esther Land and Karen Lacey ran in the virtual event. The team from the Brockington Mother and Baby Unit even climbed Snowden for APP! We also still have some ‘Miles for Mums and Babies’ fundraising challenges ongoing. I am continually amazed and inspired by our brilliant fundraisers!

2.30pm

As part of my Office Administrator role I might also be answering the APP phone and monitoring the main APP email where I respond to queries or forward them onto relevant colleagues. The administrator role is really varied and can involve things like booking meetings on Zoom, posting out copies of our Insider Guides and leaflets, updating databases, and updating the APP website. Soon, I’ll be writing and sending out Christmas cards to this year's amazing fundraisers which is always a joy to do.

5.00pm

By 5pm I finish work and make a start on the tea for my two children and my husband. Working from home gives me a better work balance by not being stuck in the rush hour commute so life is always a bit more relaxed at teatime these days!

Anyone who is interesting in finding out more about fundraising for APP can contact Kelly by emailing fundraising@app-network.org

 

 

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You can see  daily updates below; 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

FACTS AND FIGURES

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

Status Map

 

 

 

 

 

 

 

 

 

 

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

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

  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

 

 

 

 

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

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

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

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

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

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

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

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

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

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why MBUs are so important

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

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

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

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

How I found recovery

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

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

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

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

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