All posts by Lucy Nichol

27 April 2021

Sally’s story: "I believe that ECT and peer support saved my life".

When I was separated from my baby daughter for hospital treatment I became convinced that something terrible had happened to her. For a time, I even believed that she might have died. For a woman experiencing postpartum psychosis (PP), the trauma, separation and anxiety was unbearable.

You have these ideas of starting family life in a bubble of happiness. Of course, we know that labour is painful and that sleepless nights are to be expected. But my experience was wildly different to what I was expecting.

Immediately following the birth of my gorgeous baby girl, Ella, was one of the most terrifying, inescapable nightmares I could ever have imagined. I was in such utter pain and despair day after day that I constantly thought of walking into the sea near our home in North Wales.

I’d had a relatively smooth pregnancy – nothing out of the ordinary. However, I was a week overdue and I was showing some signs of preeclampsia, so I was induced. The labour was difficult and Ella’s heart rate kept dropping and she was in distress, so eventually, she was born by Caesarean Section. But as I came round from the anaesthetic my confusion was off the scale.

I didn’t understand what was happening and, as such, I had a brain scan for a suspected stroke, which thankfully came back negative. I was simultaneously pleading with the nurses to sit with me as I was so scared about what was happening, and paranoid that they were talking about me. A few days later I got up to go to the toilet and collapsed, sobbing and refusing to get up.

In my mind, I believed that I'd died.

Everything was frightening and intense. The sound of babies crying was deafening, the whirr of the air conditioning unit overwhelmed me and the canteen trolleys sounded like trains crashing through the ward; lights being switched on were like explosions and I could see shadows on the wall. I saw a midwife take Ella away, and immediately believed she was being resuscitated because something awful had happened or perhaps I'd harmed her.

All throughout, I remained convinced that I'd hurt my baby and that I had died and was now living in the 'after life', a kind of hell. The nurses brought Ella to see me, to reassure me she was ok, but I was convinced they'd swapped her and that she really wasn’t OK.

I now know that I was having a psychotic episode.

My husband, Jamie, was informed that I was suffering from PP and I was transferred to a general psychiatric ward. I was prescribed anti-psychotic and anti-anxiety medication. I was also separated from my baby which made me constantly anxious and reinforced some of the beliefs I had about her being swapped or coming to harm.

A week later, I had a review with the consultant and I told him things were better than they were just to be allowed out of there. A home treatment team was arranged to visit me every day but things didn't improve much. I'd manage to help meet Ella's basic needs, change and feed her. But I was going through the motions.

I then hit an extreme low, a bleak depression punctuated with psychotic symptoms.

Ten months after coming home, I told Jamie that I couldn't go on. My husband, who'd done so much to help me, was distraught. Determined to help, Jamie did a literature review on PP treatments and  electro-convulsive therapy (ECT) came up a lot. We found and asked to be referred to a world-renowned expert in PP. He agreed that ECT might help me.

There’s a lot of stigma around ECT – and you immediately think it's a barbaric, horrible treatment, involving being strapped to a chair and electrocuted. To be fair, it is fairly dramatic - you're anaesthetised and electrical currents are passed through your brain to trigger a seizure. But for someone like me, who was so acutely and chronically unwell, it was something that really helped.

Half way through the ten sessions, there was a shift in my thinking. Something terrible was being lifted from me. I believe ECT, along with the amazing peer support I received from other women who had experienced what I had, saved my life.

Gradually, I've grown stronger and my bond with Ella has become stronger too. It's sad to think about what I've missed out on but now I look at her and get excited that everything's ok and that we're here - happy and healthy.

Once you've suffered from PP there's a high chance of it recurring with subsequent pregnancies. It's a very personal choice, but even if there was only a slight risk of going through that again, for us, it's just not worth it.

But it's very important to me to give hope to others going through the horrors of PP. You'll be convinced it will never, ever end. I was convinced too. But today, I am recovered and living a happy and fulfilling life.

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

 

24 March 2021

Only Mother and Baby Unit of its kind in Wales to open in Swansea Bay

A new unit has been set up to help women in Wales who experience serious mental health problems during pregnancy and following the birth of their child.

Uned Gobaith (‘Unit of Hope’) will be the only inpatient unit of its kind in Wales to offer multidisciplinary mental health care to women from 32 weeks of pregnancy until their baby is one year old.

Until now, mothers who needed serious mental health care have either been supported in the community, admitted to acute mental health wards without their babies, or have had to travel to one of the specialist mother and baby units in England.

At present, the closest unit for women living in the Swansea Bay UHB area is in Bristol.

Based at Tonna Hospital, near Neath, the new unit is designed to be a home away from home where mums will have access to specialist care for themselves and their babies.

It has six individual bedrooms for women and their little ones. Mums who are admitted will also have access to a shared living room and kitchen areas along with a playroom, quiet room and sensory room.

In addition, accommodation will be available for family members travelling from further away to visit their loved ones.

Supporting the mothers and their babies on site will be a multidisciplinary team that includes psychologists, mental health nurses and psychiatrists, as well as social workers, health visitors and midwives.

Nursery nurses will be on hand around the clock too, to look after babies while mothers rest or receive treatment.

Uned Gobaith was commissioned by the Welsh Health Specialised Services Committee, and made possible thanks to Welsh Government funding and support from mental health specialists in community and inpatient care.

A patient and service user group also gave crucial feedback during the development process, and chose the unit’s name.

Dr Jess Heron, CEO, Action on Postpartum Psychosis (APP), added “APP’s staff and lived experience volunteers in Wales have been campaigning for this unit for several years, and we have worked closely with the MBU development group to ensure that the voices of women with Lived Experience have shaped all aspects of the design of the new unit. Today’s news is testament to the power of positive collaboration, shared experiences and person-centred approaches to care.”

Toni Evans, 34, from Port Talbot, experienced serious mental health problems during and after her second pregnancy. Now a member of the patient group, she believes a local unit like Uned Gobaith would have made a huge difference to her treatment and recovery.

“It just got worse and worse as the pregnancy went on,” Toni said.

“The depression just got unbearable. I remember ringing my husband on the way to work one day saying that I was going to drive into a wall because I just needed help. Obviously I didn’t, but I just wanted to get out of it.

“Once the baby was born, I started medication straight away, but within two weeks my mental health deteriorated even further.”

Toni was seen by a mental health crisis team and, with the support of her “amazing” midwife, she was admitted to an acute mental health ward.

This type of ward has no facilities for babies or small children so Toni spent three days away from Sarah while she was assessed.

While she was in hospital, a member of the Perinatal Response and Management Service (PRAMS) team (which works with women at risk of developing mental health problems during pregnancy and after birth) told Toni a space was available at a specialist mother and baby mental health unit in Derby.

“At this point I couldn’t really think, I couldn’t answer questions so my husband had to say yes for me,” Toni said.

Toni and Sarah made the daunting 180-mile journey with two chaperones and a driver she had not met before. Arriving at 8pm, she struggled to get her bearings properly in a completely unfamiliar place.

“When we finally got to the unit, I didn’t want the chaperones to leave – they were part of home, they were Welsh, they were from where I’m from,” Toni said.

“I was being left in England, in a different country to where my family was.”

While Toni did make good progress in the seven weeks she was at the unit, the distance between her and Sarah in Derby, and her husband and son at home in South Wales was very hard for them all.

“My husband would come and visit but it had to be every other weekend because he had to take time off work and take my son out of school,” Toni said.

“And it cost a lot of money, driving up there and staying in a hotel.”

If there had been a unit closer to home, Toni believes it would have made a real difference to her family, her recovery and her transition back to home life.

“The people that I was in the unit with were local so they would have visitors a few times a week. I really was on my own up there,” she added.

The distance also meant that Toni went through a different going home process. While other patients would get to go back to their families for a few hours at a time before building up to overnight stays or weekends, Toni travelled to Port Talbot for week-long stays.

She had the support of local mental health specialists but it was hard for her to drop back into home life again.

“That was a difficult transition to go from being in the unit where you are so incubated and then back into the big wide world for a week with the baby and your family and everyday life,” Toni said.

“Some mums would go home for a little bit and it would be too much but they could go back to the unit.

“I didn’t have that choice. I had to travel four hours home and then if I didn’t like it, I’d have to go four hours back.

“It was just more pressure. I didn’t want to make my husband do that trip unnecessarily when he was doing it on weekends. It felt like I should suck it up and get on with it at home.

“It made a big difference to my recovery.”

After seven weeks of support and mental health treatment at the unit in Derby, Toni and Sarah made the journey home for a final time.

That was not the end of Toni’s mental health journey, however. When Sarah was six months old, Toni had a manic episode and went back into hospital for four weeks.

But this time there were no beds available in any mother and baby unit, so Toni was taken to a mixed acute mental health ward - without Sarah.

Toni has since been diagnosed as bipolar and is taking positive steps forward in her mental health journey.

But she feels that if she had been able to go to a unit closer to home, her experience of inpatient treatment would have been “completely different” – and is vital for other mothers’ recovery.

“I think it would have been a lot smoother and I wouldn’t have felt so isolated there. I was missing my son – at the time he was four years old – and my husband.

“I felt like I had taken the baby away from them because they weren’t able to visit,” Toni said.

“A unit here is just going to make an unbelievable difference for mothers in Wales. It definitely would have made a difference to me.”

Uned Gobaith is due to open in mid-April and will be accepting mothers and babies for treatment immediately.

Janet Williams, Associate Service Director of Mental Health and Learning Disabilities at Swansea Bay University Health Board, has been part of the team leading the unit’s development.

Janet said, “When Uned Gobaith opens, we will be able to help women like Toni who are experiencing serious mental health problems, and their babies, in a safe environment much closer to home.

“This important service will significantly enhance perinatal care services across Wales and we are very proud to be hosting it in Swansea Bay University Health Board.

“It will be the only mother and baby unit of its kind in Wales, and its development has only been possible with support from a wide range of experts, teams and patients across the country.”

Minister for Mental Health and Wellbeing, Eluned Morgan, said: “It is fantastic news that we have our own perinatal mother and baby unit in Wales to support those struggling with their mental health.

“This will make a significant difference to the experience of new mothers as they will be able to get the specialist support that they and their babies need closer to home.

“We all know that the pandemic restrictions have added to the challenges during this last year and so I welcome the addition of this facility which will complement our strengthened perinatal community offer.”

Sharon Fernandez, National Clinical Lead for Perinatal Mental Health, said: “The opening of Uned Gobaith is a huge step forward for the treatment of pregnant women and new mothers experiencing severe mental distress.

“Providing this kind of specialised mental and emotional support for women at one of the most vulnerable times in their life is essential, and the family-friendly environment Uned Gobaith offers means that partners and older children can be involved and get the support they need too.

“As a network, we were very pleased to play a role in the development of Uned Gobaith.

“Its opening is a tribute to the hard work and commitment of everyone involved, especially the many women who shared their own personal experiences of perinatal mental health difficulties in order to improve services for others.”

 

16 March 2021

New and expectant mums face increased mental health risks caused by the pandemic

A new report from the Maternal Mental Health Alliance and Centre for Mental Health calls for Ministers to fill the pre-Covid gaps in specialist perinatal mental health services

During and after pregnancy, women have faced greater likelihood of poor mental health during the pandemic, including anxiety, depression, loneliness and suicidal thoughts, according to a new report commissioned by a coalition of leading maternal mental health organisations. 

Women of colour and women from poorer economic backgrounds are more likely to experience mental health problems during and after pregnancy, according to the research. 

The rapid review of evidence commissioned by the Maternal Mental Health Alliance (MMHA), and conducted by Centre for Mental Health, for the first time compiles all available evidence into one place. This shows that access to crucial services reduced for pregnant women, new mums and babies across the UK, especially during the early stages of the pandemic. While health and care staff worked hard to deliver safe care, significant gaps emerged. Women also experienced a reduction in informal support from friends, relatives and networks of other women sharing their experiences.

Extra pressures include anxiety about giving birth during lockdown without partners present, fears of losing jobs, heightened levels of domestic violence, bereavement, worries about catching Covid-19, and concern about new infants catching the disease. 

The MMHA, a network of over 100 national organisations, together with lived experience champions and clinicians, is calling on Ministers to fill the pre-Covid gaps in specialist perinatal mental health. In addition, the wider system surrounding these services, including health visiting and maternity, needs to be protected and enhanced. Furthermore, up-to-date monitoring and research of maternal mental healthcare should be commissioned. It also says that without sustained funding, many Voluntary and Community Services will not survive, despite the increased demand from women for their services. 

Luciana Berger, chair of the Maternal Mental Health Alliance (MMHA) said:

‘Today’s report should serve as an ear-splitting warning siren about the dangers to women’s maternal mental health and potential risks to the wellbeing of their babies. The pandemic has placed additional challenges on new and expectant mums getting the care and support they need, taking many already-stretched services to the point of breaking. Women of colour and women from disadvantaged backgrounds have been particularly impacted, and Ministers must address this injustice with urgency.’ 

Sarah Hughes, chief executive of Centre for Mental Health, which carried out the research, said:

‘The Covid-19 pandemic has been a mental health challenge across society, but it has not affected everyone equally. It has placed especial pressure on women during pregnancy and after they’ve given birth. And it has made inequalities that were always there in plain sight even more pronounced. We need to take this opportunity to review and reframe what support women should expect for their mental health during the perinatal period, and to make sure that we prepare for any future crisis to avoid another loss of support at a crucial time in people’s lives.’

Aleema Shivji, Comic Relief Executive Director for Impact and Investment said:

‘The pandemic has put an unprecedented strain on the nation’s mental health and it is sadly no surprise that, as this report proves, pregnant women and new mums who face enormous challenges, have sadly been worst affected.  It’s clear that more work is needed urgently to help tackle the shame and stigma attached to maternal mental health for mums to feel recognised, supported and able to ask for help. At Comic Relief we have prioritised funding mental health services for over 25 years, but it is clear this is still needed now more than ever.’

Dr Jess Heron, CEO, Action on Postpartum Psychosis said:

‘At APP we welcome this report that clearly evidences the needs, gaps and inequalities in maternal mental health and calls for immediate action. Postpartum psychosis is a psychiatric emergency in all cases - and one that needs specialised treatment and support.

‘For many mothers during this pandemic, isolation and fear has been magnified - women have battled illness and recovery without the support of wider families and communities. Essential frontline professionals have been redeployed, and services and health professionals stretched to breaking point. As a charity, we’ve heard examples of staff and services going the extra mile to overcome huge challenges presented by the pandemic but, for some, experiences of birth have been needlessly traumatic. Some women at high risk of PP have had to give birth without their partner present, despite knowing of their high risk of developing this rapid and severe onset of mental illness.’

Today’s report Maternal mental health during a pandemic was commissioned by the Maternal Mental Health Alliance and conducted by Centre for Mental Health, and covers all four parts of the UK.

Anybody in need of support or information regarding postpartum psychosis can find a wealth of information here.

26 February 2021

Q and A with Hollyoaks’ Jessamy Stoddart

We chatted to Jessamy Stoddart who plays Liberty in Hollyoaks to reflect on what she’s learnt about postpartum psychosis (PP), and how APP helped Jessamy create an authentic and powerful performance of a woman experiencing PP.

First of all, for any readers who haven’t seen Hollyoaks, can you tell us a bit about Liberty’s storyline?

So... Liberty was carrying a baby for her sister. The birth was sudden and traumatic, and she lost a lot of blood. After this, during her physical recovery she started hallucinating and confiding in a nurse that wasn’t actually there. From this point on, it was clear she was suffering from postpartum psychosis, however it went unnoticed for quite some time. She has now received help and is very much on the mend.

When the Hollyoaks team first discussed PP with you, what, if anything, did you know about the illness and how did you feel about the storyline?

Being completely truthful, I had never come across postpartum psychosis before. Like many, I knew of people who had experienced postnatal depression, but psychosis was completely new to me. When researching I was shocked at the effects PP had on the mothers and those around them. I was honoured to tackle such an important storyline.

You took part in a Zoom session with staff and women with experience of PP. How did this support you in developing your portrayal?

This Zoom call was invaluable to my process. Hearing stories first hand, as well as talking to partners and health care professionals gave me such great insight. It also gave me a comfort blanket, knowing if I had any questions I could always speak to someone from the charity.

 

 

 

 


Did you learn anything new from speaking directly with women who have experienced PP? How did it add to the research that you did for the role?

Absolutely. It was so great to speak to incredible women who have come out the other side, who could really give me insight into what was going through their mind at the time. I had watched many documentaries but this really added to the research from a recovery perspective. It was amazing to speak to healthcare professionals too, to see what they would consider were the physical attributes of those who are suffering - I put a lot of this physicality into my character. I also found speaking to the partners of those going through PP so very interesting. They are smack bang in the middle of the symptoms often before it’s been diagnosed. So it’s a very traumatic experience for them – something that I’d never really considered.

Why do you think it’s important for soaps to tackle storylines like this?

Knowledge is power. If tackling this storyline helps even one person to recognise the symptoms early on, then we’ve done our job!

Finally, what’s next for Liberty?

Recovery and getting her ‘sparkle’ back! I’d also love to finish by saying a huge thank you to everyone at APP. The work you do is truly incredible!

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